everyday with food allergies

Dreams Coming True

2011-11-16T13:17:00.001-08:00

I always had this fantasy of the day Max would be able to eat dairy. I saw it as a sudden thing. We would go into the allergist. He would pass an oral challenge then we would go by all kinds of dairy products take him to his school and have a class dairy party.

Year after year his numbers stayed the same. When they finally did decline his skin test was still huge. Once that diminished we failed oral challenges two years in a row. We were finally given permission to try milk baked in goods but by this time the fear had built in. Yes, he could tolerate baked milk, he just didn't want to go there.

Today we had an oral challenge to cheese at the allergist. At he age of 9 1/2 he finally passed. So do we go home and celebrate with a plethora of cheese products. No. The fear is still there. He also says he doesn't like the taste. Nonetheless, it's a dream come true. Something I had almost given up hope on. At this point though it is not the glorious feeling like the heavens had finally shone bright light upon us that I had expected. It's more of a "huh, how 'bout that." I guess because it doesn't mean that Max is going to jump into eating mac n cheese and grilled cheese sandwiches. This too will be a gradual process. It may still be years before we walk into a pizza joint and get the double cheese stuffed crust pizza. Dairy went out of our life suddenly with hives and vomiting and swollen faces. It will enter quietly and gradually they way change usually happens.

Dairy Queen! Yay!

2011-10-16T22:56:00.000-07:00

Sorry bring a little snide. Just got an email from Owen's soccer coach announcing an end of the season celebration at Dairy Queen! Yay! I know I have mentioned (in person and email) that Owen is allergic to dairy (maybe he doesn't know this means ice cream too?) but this apparently has been forgotten. My first reply email was "Hey! We won't be able to make it to Dairy Queen. Owen is allergic to milk (and eggs and sunflower seeds). But feel free to go on with the festivities without us. I won't mention it to Owen so he will be none the wiser." My husband felt this was putting the coach in an awkward spot as then he would be watching what he says at practice and would feel bad if he slipped up. Well, okay sometimes I don't like wearing others shoes as I don't always think they even try to wear mine so my reply was "So what."

In my heat of the moment angry phase, I will say "Why do I have to spare his feelings?" Or the feelings of the Mom-who-brings-snacks-my-son-can't-have-and-then-acts-the-martyr as she "discreetly" says to her friend "Well, goldfish are what every Mom brings". All I said is "Thank you for letting me read the label. No, he can't have those." At this point I have to say, your feelings about this situation are YOUR feelings. I'm sorry he has food allergies and it is inconvenient to you in some way. Though I have to wonder WHAT exactly is the inconvenience. That he has them? That he can't have what you proposed? I'm sorry. I HAVE NOT asked you to change anything. ALL I have said is he can't have those or he can't come to that. It is not a judgement on you IT IS A FACT OF OUR LIVES. That is it. It is what we do everyday. Avoid. Everyday. Despite soccer games or end of the season celebrations. Sorry I made you feel something.

So my real email read "Owen is allergic to dairy (and eggs and sunflower seeds). So we won't be at the Dairy Queen festivities. You've been a great coach this season. Thanks for keeping the little guys motivated."

*Breathe out* I had forgotten how therapeutic my blog is for me. Just had to get that little vent out.

She Might Grow On Me

2011-10-11T15:14:00.000-07:00

The allergist that is. We have been to see her every week for the past four weeks. History for both the kids and then full skin and RAST testing. We've spent a lot of quality time with our new allergist. And, grumble, grumble, she's okay. I will grudgingly like her. Mainly because she has managed to tell me somethings I don't know and she wants to challenge a number of things on both kids to perhaps open up our diet a little.

The main thing she explained was conformational versus linear allergy in children with cow's milk allergy. Apparently, studies have been done regarding children who can tolerate highly heated cow's milk products such as those in baked goods. It has to do with espitopes attaching to proteins. And though I understood her explanation at the time I'm not going to be able to explain it in plain English. The gist of it is that they have discovered that those allergic to milk can be split into two groups; those with conformational allergy (able to tolerate highly heated milk) and those with linear allergy (those who can't) AND at sometime in the not so far future they hope to be able to TEST people to see which they are.

I had wondered what the shift in allergists' views had been as it seemed suddenly that not only was Max given the go-ahead on trying baked milk products but so were a number of food allergy families that I know of. It seems to me with this study it isn't just that our children are now tolerant, it may be that they always were and we just didn't know it.

Food allergy research still has a long way to go. But maybe we are making some head way.

Here's the only online info I could find on this study.

"I'll need to give you a demonstration on the Epi-pen"

2011-09-25T16:59:00.000-07:00

Starting a full time job awhile back really cut into my blogging time. Not to mention my ability to think about something other than work, my own kids, feeding them and keeping the house clean. But then, about 2 months ago...we moved. From east to west. Virginia to Oregon. So here we are. And with a new place comes a new allergist. Two kids, loads of complicated history. I think we tend to overwhelm.

Our first visit to the allergist was Friday. We started with Owen, which in hindsight was part of our mistake. So by the time we had waited in the lobby for 35 minutes (Max and Owen are not good waiters) I was already annoyed. Which was apparently evident as the nurse immediately started to explain that they were running behind. Which leads me to our second mistake. I had been figuring the appointment to take an hour and half tops and had scheduled Max's first drum lesson for later in the afternoon. You are right I shouldn't have scheduled anything else that afternoon. I don't know what I was thinking. I guess part of it is that food allergies are so much of a part of my life, I just expected I would go in there, say test for this and this and this. His asthma seems fine right now. Read through his records and catch yourself up. I wasn't counting on needing to go through ALL of the history AND being questioned about it. I guess on my part another mistake.

She wanted to start with his asthma history and it quickly became evident that she didn't think we were doing enough or that he had been monitored properly. They wanted to do various lung function tests and add an albuterol inhaler. They also think he needs one at school. Though he never has needed one in the past.

As we started in on the food allergy history, I felt I was put on the defensive immediately with her questioning why I had even had him tested to begin with. Throughout she kept interrupting (to go along with all the times my two children were interrupting). I kept losing my train of thought and felt myself getting flustered and nervous. But when she interrupted me to explain how RAST testing doesn't indicate severity and history is the true indicator of a food allergy I had to pause. She then asked me if I had ever had to use the Epi-pen. I said no the one time Owen needed it we were at the allergist and she did it. Her reply was "Okay then we will need to do a demonstration for you before you leave today." I was taken a back. Really? I have been raising children with food allergies for 9 years and you think you need to demonstrate the Epi-pen for me? I exploded a little in a flustered unproductive not very helpful way and explained that after 9 years a knew a lot about food allergies indicating Max and his somewhat healthy 9 year old self. And that we had seen some of the best allergists on the east coast. I could kick myself for that. I SO don't want to be east coast and it may have seemed like I played a "the doctors are better on the east coast" card. Friday night I lay in bed going over how I could have done it all better. Because you see, we have moved to a much smaller pond and this is the only pediatric allergist in it. We may be stuck with each other. Which means I need to do a better job building this relationship. And at the same time she needs to recognize that I know what I am doing.

I know we are new to her but we are not new to food allergies. When I said I had never had to use the Epi-pen perhaps she should have replied "Wow, then you've done a great job on managing these kids food allergies." Doctors need to realize that as parents of children with special circumstances we live with it for 24/7. We manage their food allergies everyday and in that educate ourselves over and over. Not to mention demonstrate that damn Epi-pen for every grandparent, babysitter, teacher, parents of their friends, coaches, etc. Anyone who is alone for any length of time with our kids get a demonstration. Give us some credit. We already do know something.

Compassion

2010-07-31T09:26:00.001-07:00

One of the things that concerns and confounds me about the world is the seeming lack of compassion people seem to have for one another. Not just in the world of food allergies but in the world at large. It seems as if someone senses their own wants are at all compromised by the needs of others they act with outright animosity and anger. Whether its sharing the road, the grocery store aisle, or space in the world in general. I don't know if it is the area I live in but I have begun to be very worried about the human race due to the animosity I feel around me everyday.

It's the lady at the pool that practically pushes my child aside to go up the steps. No excuse me or even eye contact even though we are the only other people in the pool. Its the woman at the grocery store berating the lady waiting in her car for her grocery delivery because she has been parked there too long and the other woman wants her to move. No, please could you move up or can I get in here. Just a barrage of verbal abuse.

It's also the lack of compassion from others when dealing with those with food allergies. Its the parents of another child in my son's class. As the teacher is explaining that there is one child in the class with severe food allergies the parent spews out "So everyone else has to suffer because of one child." If he had let the teacher finish he would have realized that her comments would have ended in "You can still bring what you want and the parent of the food allergic child will provide a separate snack."

It's the same teacher a month later refusing to change her plans to make cookies using both milk and eggs in the classroom, even though I have offered to make cookie dough for the whole class, because "We do not deprive the other children because of one child." They had made no other plan for my child, he was just not going to be allowed to participate in the cookie making.

It's a woman in one of my former playgroups that would continuously bring unsafe snacks not just to our playgroups but to my house. An eggy milk, based dip one time. A snickers cheesecake to another. That time the playgroup wasn't at my house it was at another members house who had just found out her son had a severe peanut allergy. I could never understand if she just didn't get it or just didn't care.

It is the Washington Post printing an editorial response (in very large print) to an article about peanut free sections at baseball games. "I'll give up my peanut butter and jelly sandwich when you pry it from my cold, dead hands."

I realize that all these incidents may seem very minor. But I have dozens more. They one by one add up and make me wary of people's reactions to me, to my children and to their food allergies. I honestly didn't make up their problems or cause them or want to even burden YOU with them. But we all live in this world together and we all, in one way of the other, too often look the other way and say "That is not my problem." We lack compassion for another person's burdens and instead focus on how their problem encroaches upon my rights.

I am not asking you to change the way you live. But if you are my neighbor, I think it is kind if you look me in the eye and say hello. If you are my son's teacher, I expect you to make him feel included and keep him out of dangers way. If you are parents of other kids at my children's' school I wish you could see us as part of your community and not as "the child who deprives others."

Just walk a day in my shoes. I am striving to walk a day in yours.

Ace of Cakes Take Two

2010-07-29T07:31:00.000-07:00

I always post Max's birthday cake. I think I outdid myself this year. I started working with fondant for Owen's birthday last January and made him a Mighty Mac cake.

Not bad for my first attempt.

Well, leave it to Max to up the anti. He immediately started talking cakes and would watch any cake show I put on with rapt attention. (He also likes design shows like Trading Spaces Boys and Girls). Problem was the cakes he wanted me to make sounded impossible. In the end we found a picture of a dragon in one of his books and settled on that.

I need to work on taste though. When I add a lot of food coloring to the marshmellow fondant it changes the taste and not in a good way. Also I have been using my basic chocolate cake recipe that I don't think tastes as good without my chocoloate frosting recipe. I'd like to make really tasty good looking cakes. Not that this one was bad but I'm always striving for perfection.

Working FAM

2010-07-22T11:43:00.000-07:00

Like I said, I went back to work this past year. I knew it would be hard. But I didn't know it would be as hard as it was. There were points in time this past year where I really thought I couldn't do it. That I was going to crack. That I really was in over my head.

I also might have over scheduled myself. Beside being enrolled in an American Montessori Society training program and working full time I was the treasurer for our HOA (thankless job) and taught my son's 1st grade catechism class (good Lord do first graders like to chat).

I found it particularly hard on the food allergy aspects of our life. We don't eat out so food prep sometimes seemed insurmountable. Both Max and Owen were in school which is full of "fun" food laden events many of which I was informed about the day beforehand. This was troublesome to me on a few fronts. 1). I work at the same place they go to school. It would not be impossible to give me a heads up more than 12 hours before the event. 2). I spent many blurry eyed evenings making baked goods. I began to feel resentful and angry but with food allergies it is hard to know where to direct that resentment and anger. 3). Conflicts particularly with Owen's teachers over food allergy issues led to a stressful working environment for me as they tended to see me not as a parent but as a co-worker.

We are halfway through the summer. Halfway to going back to school (for the kids, I completed my training) and work for me. And I'm not looking forward to it. I LOVE Montessori. I am a really good teacher. But it was a lot this year. I don't know if I can do it again.

It can only get better right?

Where Have I Been?

2010-07-21T09:55:00.001-07:00

It's been almost a year since I last posted. In the past year I went back to school and back to work. It's been a complicated busy year and I mainly didn't post because I had no brainpower left to write cohesive sentences that didn't have to do with the many papers on Montessori Education which I HAD to write this year.

I hope to post some stories this summer, partly because I have missed my therapy. That is what this blog is for, my own personal therapy to deal with my kids issues. And issues have multiplied in the past year. Upcoming posts may have titles like Adventures in Asthma or Adventures in Sensory Perception Disorder or, a favorite for all, Adventures in Dealing with your child's' teachers.

Thanks to the many people who have posted comments in the last year during my absence. I have now published them.

Errupting Volcano Cake

2009-07-29T05:22:00.000-07:00

We had a birthday party for Max on Saturday. Of course his party theme has changed MANY times over the past year. He finally decided on a Gormiti/Volcano theme. I did not have to work with fondant after all. Instead I adapted this Volcano cake recipe.

I used my own recipes for the cake and buttercream frosting. Instead of Marshmallow Fluff which contains egg I used Ricemellow Creme. Worked well.

Now we are headed out for vacation. Packing here I come.

Update

2009-07-29T05:13:00.001-07:00

I have been in school all summer. I am studying to be a Montessori teacher (ages 3-6). Therefore my blog has really suffered. So here are some quick updates to issues I left hanging.

Tortilla Factory - Went great. Everyone there seemed to be in the know. Max had a black bean taco. No reaction! Yea!

Owen and Sesame - All tests negative. Dr. and I decided his reaction very well could have been cross-contam. Once we are back from vacation we will try an at home challenge.

Owen and Mustard - Positive test result. Grrrr! Dr. wants us to try an at home challenge. Like Owen is going to willing eat mustard directly.

Owen and his other allergies - Numerous environmentals. Eggs and milk - down. Sunflower seed -up.

Max and Weight - Max gained an entire POUND this past year. He's got to be the skinniest 7 year old on the block. Ped. is worried. Looks like we'll be seeing a GI specialist and a nutritionist sometime soon.

Here's One For You

2009-05-18T07:27:00.000-07:00

Picking up Max from school one day last week, he said to me "Mom, we are going to go eat at a restaurant!" Stop in my tracks. "What?" "My class. We are all going to go to a restaurant!"

I turn around and head back to the teacher. With a big smile on my face and sweetness in my voice I say, "So Max tells me you are going to a restaurant." The teacher replies yes. "We've never been to a restaurant." I say. "Oh!" she seems surprised. I ask where they are going. She says she looked at the menu and it seemed there are things on there he could have. We discuss cross contamination. I end with telling her I will need to call the restaurant to see if they can safely provide Max with a meal.

Damn it. What do I do? Max will feel left out if he can't go but I don't know if I trust a restaurant to feed him. I'm also perplexed by the teachers' decision to do this without talking to me first. As a school they have been great with Max and brought him a long way academically. They support him as a student in unbelievable ways. And for the most part are very sensitive to his allergies but this is disappointing to me. I little more conversation with me would have been nice.

Responding to Questions

2009-05-18T07:06:00.001-07:00

Sometimes people ask questions or comment on a post and I want to respond to them. I have struggled with how to do this. Do I go to their blog? Sometimes that doesn't seem appropriate. Do I just respond on my blog in the comment section? I have gone back and forth and then end up doing nothing.

So I decided to make a policy. If you ask a question in the comment section I will respond to it there. So you'll just have to check back and maybe I will get better at answering questions.

Two Posts in One Day

2009-05-05T05:51:00.000-07:00

I had David ask how proactive we should be regarding the sunflower seed allergy and daycare/preschool. Though he broke out in hives from contact with Sunbutter when he was 18 months his test score is extremely low. As parents are now trained to use Sunbutter instead of peanut butter I wondered what I should do about preschool. Our Dr. said Sunbutter should be banned from the classroom as well.

I'm not sure if I should take this hard line. We want other parents to be empathetic to our children's health needs however when is it crying wolf? With low scores (we're talking .37), no history of anaphylaxis from or even ingestion of sunflower seed, do I really need to have it banned from his classroom? Am I going to ban milk then? His RAST for that is 8.32. Or egg, for which he has needed a previous epi? Is this really fair?

If it was just a preschool where he was going two hours a day for a couple days a week I could see drawing a hard line because this wouldn't be too much of a hardship to go without for a couple of hours. Kids would go home and have whatever they wanted for lunch. But Owen will be at the school where I will also be interning next year. He will be in another classroom until 1 and then with the nappers until 3 when I get him.

What is fair to Owen? What is fair to the other children?

I Really Can't Be In Two Places At Once

2009-05-05T05:38:00.000-07:00

"We'll see you tomorrow at the Mother's Day Tea!" is what Max's teacher said to me that triggered the "Oh crap! I screwed up!" Owen's allergy appointment had been scheduled for months. It was too late to change it and I could not be at Mother's Day Tea and at the allergist at the same time. So, I did it. I sent the husband who was so kind to rearrange his schedule to go. I sent him with pages of notes and questions and....he came back with notes which elicited more questions from me.

I really just wanted to confirm if he is really allergic to sesame and how serious his sunflower seed allergy is. Going into daycare this summer (while I'm in school) I just want to have a good read on what his true allergies are. At this particular appointment he skin tested positive to milk, egg, peanut, mustard seed, soy, strawberry, trees, grass, dog and dust mites. David told her he eats strawberry and soy without problem and she said they were probably false positives. The peanut is new (he had a previous negative RAST). David told the doctor Owen didn't like mustard which me being the Mom knows Owen eats mustard in baked beans all the time and doesn't have a problem with it. Also the wheal for peanut and mustard seed was the same size as the strawberry and soy, so couldn't they be false positives? The only thing he skin tested negative for was sesame...

"So we are clear for sesame?" I ask my husband. "I don't know, she didn't say" was his reply. "She didn't skin test sunflower seed?" "No, she didn't" So instead of clearing up my questions about sesame and sunflower seed we have new allergies to worry about.

I took him for the blood test yesterday. Owen was great, Max was a pain (and he wasn't the one getting anything done.) I'll wait for the results and try to sort things out with the doctor.

Diary of an At-Home-Food-Challenge

2009-04-28T12:48:00.001-07:00

Note: There are two to three actual "days" between each day recorded as I decided to start out giving him something every two to three days.

Day 1 - After soliciting advice from other parents I settled on starting our challenge with Kellogg's Nutri-Grain Bars which contain non-fat dry milk. I broke off a piece and asked him to have a bite. Much drama and face making. He finally puts it in his mouth the whole time making yuck faces. I only get one bite in him. He says "Watch me closely Mom. In case I get sick." Yeah, like I didn't want to just sit and stare at him with the Epi in my hand. After a while I asked if he was itchy. Yes, he said. I little spot on my knee here and on the back of my hand....
"Are you itchy in your mouth, throat or lips?" "No." No hives or vomiting followed. I breathe a sigh of relief.

Day 2 - I try a Nutri-Grain bar again. I can't get more than one bite in him. No reactions.

Day 3 - I decided to switch tactics in order to get him to eat more. I make Bisquick biscuits using 2% cow's milk. He eats the entire biscuit and asks for another. I laugh and tell him we will need to build up to 2 biscuits. No outward reactions.

Day 4 - I do biscuits again. They seem to have already lost their appeal. He only eats half of one. No reaction.

In between Day 4 and 5 the weather heats up, the pollen starts to fly and Max spends most of the weekend outdoors. The windows are wide open and everything in the house is coated in a fine green dust. Saturday I notice Max's face looks puffy.

Day 5 - Already tired of making biscuits I buy some plain Goldfish Crackers. Max looks terrified at the thought of eating Goldfish Crackers. Have I really instilled this much fear in him. I explain I can't always make biscuits. These aren't the cheese kind they just have milk baked in them. He eats two, thinks about eating a third but doesn't. His face looks horrible.

By Monday (yesterday) morning his face is so puffy his eyes are becoming slits. His cheeks are red and rough. I call the allergist. Though it is probably pollen related she asked that we postpone the challenge as we cannot tell right now what he is reacting to. So there ends the food challenge and thus began the frantic me, closing up the house yesterday, turning on the air, vacuuming, dusting, mopping, and changing bed clothes. I'm exhausted.

I gave him Claritin and Nasonex last night. He already looks better.

Ace of Cakes

2009-04-01T13:06:00.000-07:00

Today Max requested a Bakugon shaped cake for his Bakugon themed birthday party. I pondered how this would be possible and thought of Ace of Cakes (awesome TV show) and fondant. Then wondered if fondant was allergen free. Apparently it is just sugar and water. Then I found this recipe for fondant. And now I am pondering if I can really make a Bakugon cake ala Ace of Cakes. Hmmm. What a challenge. Problem is I will be coming off of 5 1/2 weeks of an intense teacher training course. Will I be up for a challenge the end of July?

Milk Challenge

2009-03-31T09:13:00.000-07:00

To begin with challenge days are hard because we have to get Max up at 5:30am to eat breakfast because he can't eat for three hours before the challenge. So by the time we got to the doctor's office at 9:00 am he was hungry and cranky already.

After the first dose (approx. a teaspoon) he immediately started complaining that his tongue itched, his throat hurt, he felt sick. But...there were no hives, his tongue and throat were not red and irritated. There were no visible signs of a reaction. So the question became whether this was anxiety. It is partly my fault. I did not prepare him well for this. I asked a couple times if he would be disappointed if he didn't pass the challenge and I can imagine, for a six year old, telling him to avoid something his whole life and then asking him to eat it can be anxiety inducing.

In any case, he didn't want to continue with the challenge. We let him make that call. The doctor gave him Benedryl and about an hour and a half after arriving we left. However, because his numbers are so low we are going to approach the challenge a different way. A couple times a week I am to give him baked goods that contain milk product. Milk baked into things breaks down the proteins. We will do this for three months and re-do the blood test. If the RAST number spikes he will need to go back to strict avoidance.

Bad news? Good news? I don't know. I do know that no matter how much I prepare MYSELF for the disappointment I always still am. I feel like hanging my head and sobbing. Even though I went in soooooo pessimistic I still wished deep deep down that it would work. That I would have one less allergy to worry about.

Birthday Planning

2009-03-30T13:28:00.000-07:00

Max is always planning his birthday party. He switches themes on a weekly basis. After a viewing of Toy Story he suggested a space theme and said we could serve the special cheeseless pizza I make for Max and Owen. I laughed and wondered out loud if other children would like cheeseless pizza. Max said "Why wouldn't they?" I replied that most kids were used to only eating their pizza with cheese and I wondered what they would think of pizza without cheese. Max simply said "Well, if they don't like it they can just bring their own." There was no malice or sarcasm in what he said, just a statement. Because this is what he knows; when you go to a party you bring your own food! Makes me ponder what he has learned about hospitality.

Puts a whole new face on BYOB or should I say BYOP!

PS. Speaking of cheese, wish us luck. Milk challenge tomorrow!

The Numbers

2009-03-17T07:52:00.000-07:00

We got the numbers late last week and then I misplaced them so I had to call the allergist back yesterday to get them again. So here's my little chart from when we first started blood tests to now.

2004 Egg 1.45 Milk 2.71 Peanut 1.61
2005 Egg 1.10 Milk 2.36 Peanut 1.80
2006 Egg 1.34 Milk 0.90 Peanut 1.09 Cashew 2.67 Pistachio 3.40
2008 Egg 1.59 Milk >.35 Peanut 0.51 Cashew 1.40 Pistachio 2.08
2009 Egg 2.86 Milk 0.17 Peanut 0.49 Cashew 1.63 Pistachio 1.55

Dr. B. started off saying that the results were a little disappointing but after getting the news I didn't think it was all that disappointing. Maybe she was hoping for more negatives than I was. She did say it was unfortunate that we had to switch labs as different labs run different types of RAST tests. One runs the ImmunoCap and the other the CAP FEIA (I don't remember which runs which). But as we have moved over the years, switched allergists, etc, I couldn't tell you which year or what lab used which type of test. All I have is the numbers. Dr. B. said the numbers could vary though from one test to another.

Looking at the numbers there is a definite downward trend with all Max's allergens except one. Egg. I asked if that was an indication he wouldn't outgrow egg and Dr. B. responded that his body just seemed to be a little stubborn (possibly like his whole little being.)

I think Dr. B. was most disappointed with the milk as though it is less than .35 it is still there. She rescinded the at home challenge but did say if we wanted we could do an office oral challenge if I didn't think it would be psychologically hard on Max if he didn't pass as we wouldn't challenge than again for another year. I got the feeling with a positive (no matter how small) blood test and a still fairly large skin test positive, the doctor is thinking he won't pass a challenge.

So I told Max I had his blood test results back. He very adult like turned to me and said "So, what do they say." I said milk was low but still positive and he could challenge again but would he be disappointed if he didn't pass? He said "No, I'd be okay. " "So do you want to do it?" I questioned. "Yes" was his reply.

I made the appointment yesterday for March 31st. Though I sometimes question whether I like this doctor, I have to say it is great not having to wait too long for appointments.

Blood Test

2009-02-26T06:11:00.000-08:00

We went in for the blood test yesterday. I had to try a new lab because our insurance no longer covered the one we had been using. No big loss, they weren't that great.

Things went well. Max started crying when I told him where we were going so I did what any good Mom would do. I bribed him. I told him if he was brave we could go to Target afterwards and buy him something new. And we went over ways to be brave and stay calm. Be still, take big deep breaths. The front desk people at the lab were actually friendly and had a sense of humor! And the lab tech, though initially had a hard time finding a vein, distracted Max enough while it was going on that he stopped crying and talked to her. All and all easy in easy out. Even Owen sat patiently with his back against the wall quietly watching as he always does.

We then went to Target. As we were walking up to the store Max realized he was still holding his Clifford (you know, the big red dog) and asked that I take it back to the car. I got them on the sidewalk and told Max to hold onto Owen while I ran back to the car (it wasn't far away). As I turned back to look at them. I saw Max had pulled Owen way over to one side away from the street and protectively had his arms wrapped around him. Owen in turn had his arms wrapped around Max's waist. Sometimes the amount of love they have for each other brings me to tears.

Down We Go

2009-02-17T14:08:00.000-08:00

We finally made it to the allergist today to make up the appointment that was cancelled in January. No matter how I go into testing I always come out feeling down. I think on some level I always go in hoping for a miracle. Hoping that he will test negative and we will leave the office skipping with joy.

We scratch tested milk, egg, and, for some reason, strawberry. Max is never well behaved at the allergists. I can understand this. He is anxious and he hates the scratch test almost more than the blood test. It is itchy and uncomfortable and Max has a very low tolerance for pain. There was lots of drama as he lie there writhing around, yelling that his back itched. He asked me to take a picture of his back.

In this first one the protein extracts are still on his back and I think make it look worst than it is. For those of you who haven't been through this procedure, the allergist puts a drop of the suspect protein on the patients back then "scratches" it. In our allergist case, she uses these little bristles and presses firmly into the skin. Then we wait for 15 minutes for the hives or wheals to rise. The nurse then comes in and uses a clear ruler to measure the size in millimeters.

The second picture is after the nurse has wiped away the extracts and rubbed a little hydrocortezone on to quell the itching. I think Max's skin was extra sensitive today. It was really dry with some patches of eczema. If he would let me put lotion on him it might not be so bad but he runs away screaming if I even suggest it.

When she started measuring the first one I asked if it was the control (one of the pricks if always histamine to assure that the skin is indeed reacting). She said no it was the milk and then showed me where the control was. The reason I think Max's skin was extra sensitive today was because the control was almost as large as the milk. Egg was larger and peanut, unfortunatley, the largest. I think I was disappointed with the peanut size because it was so small last year.

In any case, three positives. The allergist said it was good news because the milk scratch was smaller than last year so if his blood work comes back negative than we can oral challenge milk again. She even said we could try it at HOME but would need to stop at the first sign of anything happening.

So I need to get on the horn and schedule a blood test somewhere. I'll let you know the results.

Food Allergies in the News

2009-02-04T09:12:00.000-08:00

Yesterday the Today Show featured a segment on food allergies and the New York Times ran a story on the same topic. In a nut shell (ha ha), the story focuses on false positives that come from the skin and blood testing done to diagnose food allergies. I have mixed feelings about this story. Yes, false positives are possible. In the years that we have been going in for testing we have had false positives for rice, soy and strawberries BUT the allergist (and we have seen several) always goes back to the history, "Has your child reacted to this food in the past?" I have even had an allergist say "Reaction trumps testing."

I realize there may be bad allergists out there and for those out there seeing their pediatrician to diagnose their child's allergies I say go see an allergist, preferably one who has experience and knowledge diagnosing food allergies. BUT for the most part, the parents and children I know get diagnosed as the result of a previous reaction, generally a scary one.

A few months ago Max's school sponsored a presentation by FAAN regarding food allergies. Toward the end of the discussion period one parent spoke up about how her child had been misdiagnosed as having multiple food allergies and they had to avoid all these different foods. She was angry and very verbal about her situation. If I was her I would have been angry too. She obviously got a doctor who didn't know what they were doing if they did not take her child's history into account. I spoke up and talked about Owen's diagnoses and how though he had a low positive on testing, an oral challenge resulted in him receiving epinephrine. I could have also talked about Max and his peanut challenge last summer. I spoke up at that time because I didn't want people walking out of that presentation thinking that testing results in a lot of misdiagnoses.

The Today Show did emphasize that people do have food allergies. They are real. And if a food allergy is suspected food challenges should only be done with the supervision of a doctor. But I can't help feeling that a back lash has begun. At the end Matt Lauer said this information could be very freeing for some families. What he didn't say is that when it comes to dealing with family and friends this story could make things more difficult. Can't you just see Auntie Betsy saying "Oh, let's just give him a little bit of peanut butter (cheese, bread, pecan, insert your allergen here) and see what happens."?

Foiled by a Little Snow

2009-01-27T08:13:00.000-08:00

I looked out the window at what my Wisconsinite mind said "It's only a little snow." I packed up the bag with snacks, books and DVDs bundled up the kids and headed out a little early because I thought it might be slow going. Other crazy people don't know how to drive in the snow.

It wasn't til I was crawling along 267 at 10 mph that I thought "Well, this is not so good." So for the first time that morning it occurred to me to call the allergist's office to see if it was open. Message said "Closed, due to inclement weather."

Turned around, came home. False start to the roller coaster ride.

At least I had a quiet hour in the car, sipping coffee, watching the snow fall while the kids watched a movie.

Ticket Please, One Roller Coaster Ride?

2009-01-26T19:55:00.000-08:00

I've been having many food allergy annoyances lately from calling Owen's allergist and feeling like she didn't even pick up his medical chart to look at before giving me an answer to Max have an accidental exposure at the school which I have praised and lauded about its allergy awareness. Not to mention Joel Steins ridiculous op-ed in the LA Times. But Owen sans nap means Mommy sans types. My husband got me an I-phone so I could blog from that but seriously have you tried typing on an I-phone?

But, anywho, tomorrow starts the roller coaster ride, the skin test, the blood test and (cross fingers!) the oral challenge! Max's exposure at school was to a crouton containing dairy and.....nothing happened. Though he kept down playing it so much I don't know...I know he so wants to outgrow his allergies. About a month or so ago, it occurred to him "Mommy, what if I never outgrow my allergies." I told him that that was a possibility and that it sucks. Then last week he said "Mommy, my teacher said I have a life-threatening food allergy." I asked about the situation and if he had any questions and he dropped the subject. I think he wants to know and he doesn't. He's so sensitive and intuitive at the same time.

So cross your fingers, say a prayer, milk would be nice to outgrow. A drop in egg would be a nice too though I think outgrowing would be a stretch at this point. Just the indication that it's going that way is my hope. And well, nuts, we'll just assume they stay around. I don't need a miracle. Prayers, deep thoughts, good karma, send it all Max's way tomorrow.

Out, Out Damn Spot

2009-01-23T10:00:00.000-08:00

I started this back in October but never published it. He hasn't asked for Sunbutter in awhile though. Not since a lunch box explosion in the van which got Sunbutter all over.

Most days Max asks for sunbutter and apples for his lunch for school. I spread out a paper towel on the counter. I take a butter knife and scoop the sunbutter into a small plastic disposable container. Put the lid on it and immediately place it in his lunch box. I wipe the knife with a paper towel, throw the paper towel away and place the knife in the dishwasher. I then wash my hands.

But like Lady Macbeth I can almost still see, no, feel, the sunflower seed protein burning my skin. It tingles. I wash my hands again. I throw away the paper towel on the counter and wipe it down. Yet, is it still there? I wash my hands again. Invisible proteins swirling down the drain.

For those who don't know our history. Max is not allergic to sunflower seeds but Owen breaks out in massive hives if sunflower seed protein touches his skin.

Birthday Cupcakes

2009-01-08T11:40:00.000-08:00

Owen's 3rd birthday was Sunday. We had a party at The Little Gym complete with these darn cute cupcakes.

I used the Chocolate Cake and Choclate Frosting recipes from the What's to Eat Cookbook - the milk-egg-nut free cookbook. The frosting recipe is my favorite though I never realized until I had to make frosting as often as I do that it is really just margarine and sugar. Can you think of anything worse for you?

I am feeling a little guilty though. After all Max got an Ice Bat cake for his party. If I was a Mommy-who-was-on-top-of-things, I would have made a giant cake in the shape of Scoop or Muck from Bob the Builder but lately I am a Mom-just-getting-by.

I have a new favorite cupcake recipe book though. 'Vegan Cupcakes Take Over the World' If you want something fancier this is the book for you. I have made the Oreo Cupcakes, The Sexy Low-Fat Vanilla Cupackes with Fresh Berries and Chocolate Cherry Creme Cupcakes. All delicious.

Traveling for the Holidays and Eating Out

2008-12-17T05:44:00.000-08:00

On one of my support groups recently there was a discussion about the possibilities of eating out with severe milk allergies. One member reminded us that when we go to restaurants and advocate for our child we are setting an example. Showing them how to manage their own food allergies and that we should continue to make that effort and not be afraid to walk out of a restaurant if we feel uncomfortable with the restaurant's ability to keep our child safe.

And she is right. Yet, I gave up eating out with our kids long ago because I hate the eye-rolling, the impatience, the way I am made to feel as if I am a terrible inconvenience for just asking questions.

Case in point, we were at the St. Louis Zoo the day after Thanksgiving. It was a cold day in Missouri and the zoo was not exactly packed. I stopped at a hot dog stand to get a diet coke. Max was by my side.

"I'm hungry" he said "What do they sell here?"
"Well," I answered "Hot dogs and pretzels."
"Are they safe for me?"
"I'll have to ask. Are you really hungry?"
"Yes"

So I begin to question the cashier. And let me set the scene. It is a cold day. The zoo is not busy. There is NO ONE else in line at this hot dog stand staffed by at least 6 people.

I ask what brand of hot dogs they are. Everyone keeps replying they are all beef hotdogs. I have to repeat myself several times to get the brand name. Farmland. I have never heard of it. I ask to read the label. One of the cashiers runs in the back to get the box. Max asks me about the pretzels. I look down at him and say it is most likely coated with egg or butter so it probably isn't safe.

I look up in time to see the cashier roll his eyes at me. He then turns and says something to the women behind him that I can't make out. They all laugh. Maybe I'm being paranoid but honestly why do people in the service industry think they can be rude to customers.

The other cashier returns with the box. I read the label and order two hot dogs without buns. Max wolfs his down and asks for another. In all he ate two and the half of Owen's he didn't want. He loves situations where he can feel like a normal kid.

And, though this is getting long, here is another example. Last summer we stopped at a hotel on our long vacation drive. We always choose hotels with indoor pools that allow dogs. This one also served breakfast. Traditional breakfasts are not exactly the safest of meals for us. But at this hotel they had out dry cereal in glass jars labeled Frosted Flakes, Fruit Loops and Honey Nut Cherrios. We can eat Frosted Flakes and Fruit Loops yet there were only two scoops on the table. Since I (nor would anyone) be able to tell which scoop had been used in which cereal, I went to the kitchen to ask if I could get Max's cereal directly from the box. The lady in the kitchen asked why so I started to explain about cross-contamination. She rolled her eyes, looked away, thrust the bag at me and said "Whatever." Later a woman at the table next to us stopped the lady from the kitchen and asked about my request. They talked in hushed tones and glanced over at me. I felt ashamed. Like I had made an unreasonable request. I know they are small instances and I shouldn't take it so personally but here in lies one of my own weaknesses. I hate conflict.

So, perhaps I should keep trying. For Max and Owen. For them to learn to stand up for themselves which I obviously have a hard time doing. Perhaps it will be a good lesson for me as well.

Traveling for the Holidays and McDonalds French Fries

2008-12-11T05:37:00.000-08:00

It has been a month since I blogged. I don't think I've even logged in since then. Partly I needed a break and partly I have just been darn busy.

We traveled for Thanksgiving and we will travel for Christmas. Eating while traveling can be tricky. I have in general given up eating out with the kids. It is too complicated and too risky but sometimes, well, everyone is hungry. What do you do?

We eat at McDonalds generally. And honestly it makes my stomach turn. I used to love McDonalds now I can barely choke down my bland salad there. BUT we have never had an issue there. The kids eat hamburgers and french fires. I know, I know, there are those out there now protesting "But McDonalds fries contain dairy!" So here's my story and take on McDonald's fries. I think it was 3 or 4 years ago that McDonalds changed the labeling on the fries, not the recipe, the labeling. They discovered after FALCPA went through that the flavoring they were using was dairy "derived". So they changed the labeling to reflect this. People protested, wrote letters. There are long threads on POFAK (Parents of Food Allergy Kids) regarding this. McDonalds did testing and found that the dairy derived flavoring did not contain milk proteins. I think Max was 2 or 3 and we had been safely eating McDonalds fries for a couple years. I decided that since it was one of the few "treats" he gets I would continue to let him have them. I know other parents of milk allergic kids who came to the same conclusion.

We have had nary a hive at McDonalds.

If I was a newly diagnosed family or diagnosed since the whole fries brouhaha, I would probably see the labeling and conclude McDonalds fries are not safe. For this reason I don't go around touting our McDonalds consumption to other food allergic families because sometimes when you tell someone you do something that they consider risky behavior they get that tight lipped look like you just told them you let your children smoke crack.

Anyway, this post took a whole side track that I didn't mean it too. I will have to write what I REALLY wanted to say about travel in the next post.

(I used the word McDonalds 9 times in this post. Anyone googling it may get this instead. Hee hee)

Seeds

2008-11-12T05:30:00.000-08:00

I am still confused about what seeds constitute the avoidance of all seeds. I feel like I need a list or need to make a list. A friend of mine avoids all spices in things for her seed allergic son because spices are generally ground up seeds. But Owen has tolerated mustard in things before and I have a hard time justifying pulling items out of his diet he has eaten safely.

So here is my list of seed avoidance so far: sunflower, sesame, poppy. I know mustard should be on that list but for now I am leaving it in. So what about caraway seeds? Cumin? I use cumin in a lot of dishes.

But as I go through my day I think about the seeds in mundane things like a cucumber or a tomato. How much protein do these contain? Is it stupid to wonder if they are a problem?

Am I missing any obvious seeds out there? What is on your seed avoidance list?

(For more seed info check out comments at Blood Test Results. Some good weigh-ins from a few people.)

Halloween Post Mortem

2008-11-02T12:16:00.000-08:00

Boy did we bring in the peanut laden candy Halloween night! We are talking butterfingers, recess peanut butter cups, peanut m&ms, snickers galore. I was hoping Max would end up with more safe things but people seemed to lack imagination this year. It's a good thing Max is such an enthusiastic trick or treater. He seems to just enjoy the door knocking and people admiring his costume. I knew he'd be okay with me taking all the candy at the end of the evening.

Owen on the other hand was not grasping the gravity of the situation. I grew more worried with each door and Owen's exclamations of "Candy? Yum, yum!" and "A treat for me!" I suddenly realized he had no clue that he didn't get to keep and eat that candy! I was afraid my substitute would not be satisfactory. Max is happy with skittles, starburst, twizlers and gummy lifesavers but Owen not so much a fan. He's more of a chocolate kid so I was hoping my baggie of mini-marshmellows and chocolate chips would be accepted in place of the mound o' candy which he couldn't even carry.

Luckily, he is easily distracted and readily chowed down on his safe treats when we got home.

Where is the Epi-Pen

2008-10-31T10:46:00.000-07:00

I knew you all would marvel at the lost Epi-pen and you know what I still haven't heard a word from the nurse. I will say this was the back up Epi. I had already picked up the one from the classroom. So if something had happened, there were two Epi-pens at school. Also, though I know this is probably not legal, there was a stack of Epi-pen Jr.s in her cabinet.

In my last post I said the worst case scenario was Max would be at home for a couple weeks. I should have said that was the BEST case scenario. The WORST case scenario would have been me homeschooling him for a year. Seriously, how do you homeschoolers do it? You must have incredible relationships with your kids. I'm trying to keep Max busy each day, working on handwriting, reading, spelling words but having a hard time balancing Owen's needs and Max's needs. Ahhh! Calgon, take me away...

Breaking Up Is Hard To Do

2008-10-28T19:39:00.000-07:00

When I don't post I start getting phone calls. From my best friend, Laurae (HI:) to my Mom, they want to know why I haven't posted anything. Well, my mind has been consumed with Max's school situation. Almost totally non-food allergy related. We've been talking and pondering and worrying and crying (okay David isn't crying, that's my job). And today we finally did it. The correct people were notified in the correct ways and I went to the Catholic school in question and gathered his things. Max is upset. I am upset. Even Max's teacher, the non-warm fuzzy one, was distraught and actually hugged me!

We know this is the right thing for Max. The school and us just didn't "fit" and it wasn't going to get any better. I just couldn't figure out what was bothering me so much about the whole process and the other day it hit me. I was breaking up with a school! The relationship had faltered. I'd had such high hope that this was the one! Then things soured and I had to call it quits. I had to break up with the teacher, the principal, the woman who runs volunteers for lunch duty and the woman who runs volunteers for "Littlest Angels" as well as the school nurse. I have always sucked at breaking up with people! "It's not you, it's me." "Yes, we can still be friends, see you at mass." What makes it worse is I don't have a back-up boyfriend (school) completely lined up. Worst case scenario is Max is home with me for the next week and a half.

So this is the only food allergy component. When I went to break up with the school nurse (who also hugged me and whom I really do like), she couldn't find Max's Epi-pen! I actually left without it.

Blood Test Results

2008-10-10T07:56:00.000-07:00

I took Owen for a blood test last week. I think I failed to mention how horribly it went. The phlebotomist was not very good and kept moving the needle around in his little arm. He screamed and screamed.

The nurse called with the results yesterday. I wish doctors would call you with results. I know they are busy but I always have questions that the nurse can't answer.

Milk was the biggie at 8.32. I know many of you have children with RAST scores in the 100 level but 8.32 is the largest number we have ever seen. Egg was 1.30. Confusing considering the severity of his past reactions. Peanut was negative. Sunflower seed was .37. Again low considering the all over body hives he gets from contact with it. Sesame was .84. So despite the negative skin test, his sesame RAST went up from last year so sadly makes our list of things to avoid. In fact the nurse said to avoid peanuts, tree nuts (already doing, no biggie), fish and seafood (of course) and ALL seeds. Until he turns 3 which is in like three months. It's the all seeds that has me confused. I am not sure what all seeds entails.

Anybody else avoiding seeds? How do you manage it?

Food Allergy Humor #2

2008-10-05T16:27:00.000-07:00

Last week I had dumped a bunch of foam letters in the bathtub with Max and Owen. "Look, I'm making alphabet soup!" I said. (Not that either of them has ever eaten alphabet soup.)

Later Max yelled, "Mom come here! Owen has hives!"

I ran to the bathroom to find Owen standing in the tub with the foam letters stuck all over his little body. "See," Max said, "Alphabet soup hives!"

Food Allergy Humor #1

2008-10-05T16:26:00.000-07:00

Owen came to me today and said rather sadly, "I allergic to bugs."

Uh, okay, Owen

Awareness

2008-10-05T11:58:00.000-07:00

I had pulled the bag of french fries out of the freezer for the main reason of checking the calorie/fat/fiber count to record on my Weight Watchers tracking for the day. I hadn't been able to resist stealing 10 of my kids shoestring fries at dinner (just so you know one serving of Cascasdian Farms Shoestring Fries is only 2 points!)

Owen saw me holding the bag and even though he had eaten them for dinner he asked for the first time, "Safe for me?"

Max had always had great awareness of his allergies and by age two would bring me things and say "Mommy, read label?" But Owen has not shown the same awareness (or restraint) when it come to food. So I was quite proud that he seemed to be exhibiting an awareness of his own food allergies. "Yes" I replied "These are safe for you."

You Are In The Right Place

2008-09-29T07:17:00.001-07:00

No, don't go away. You are in the right place. I am just trying out a new look.

Reading for Pizza

2008-09-28T18:06:00.000-07:00

There was an article last week in the Washington Post about local schools trying to limit the amount of food used as prizes. It was ironic because in the same the same week I found this in our Kindergarten handbook regarding encouraging reading.

"Every time your child has read 10 books he/she will be rewarded with a personal pan pizza from Pizza Hut!"

Excuse my sarcasm but Oh joy! Just what the diary allergic child wants! A personal pan pizza from Pizza Hut!

I have emailed the teacher (in a honey not vinegar sort of way) to ask what alternative she might be offering Max or if I should come up with a prize myself.

Firsts

2008-09-24T04:28:00.001-07:00

My friend over at Monkey Business was running a contest about writing about firsts. Entries were due yesterday but here is mine. Day late and dollar short.

The first time you give your infant ice cream is usually a joyous fun occasion. My mother had really looked forward to giving Max his first bite so we had taken him to a local ice cream shop. Upon putting the spoon of vanilla frozen yogurt in his mouth, he pushed it out and made a face. Then the strangest thing happened. The area around his mouth got red and these large white bumps pushed to the surface of his skin. They happened so fast it looked like his skin was bubbling. What scared me was what my Mom said, "I've never seen that happen before." I couldn't imagine what was happening that my own mother had never seen before. In the car he kept clearing his throat like something was caught. Once home he threw up. The pediatric nurse at our doctors office thought it was nothing, "A skin reaction, maybe." is what she said. So this first was followed by many repeats of the same until we figured out Max had food allergies.

The first time Max was skin tested and subsequently diagnosed was heartbreaking. The doctor explaining anaphylaxis. The nurse demonstrating the Epi-pen and saying, "You need to take it everywhere, even if you are just running to the grocery store." I left shaking my head, thinking "They have got to be wrong."

The first time one of my children needed epinephrine was also heartbreaking. It happened at the allergist office and for some reason marked for me the seriousness of my children's allergies. However, there are firsts we haven't experienced yet, the first time I will have to administer the epi-pen myself, the first time we visit the ER, the first time for accidental ingestion of one of our biggie allergens. I know these could be very real for us. They aren't firsts I look forward too.

There is an elusive first we haven't experienced which I hope and dream and pray for everyday. The first time one of my children outgrow one of their allergens. Please God let me have that first.

Sunflower Oil

2008-09-22T13:17:00.000-07:00

Oh, one other thing. Dr. B. doesn't think we need to avoid sunflower oil as it is highly refined. So watch out! I am going to buy any darn brand of tortilla chip I want!

Sesame Allergy...Or Not

2008-09-22T12:06:00.000-07:00

We just got back from the allergist where Owen had a skin test for milk, egg, peanut, soy, wheat, strawberry and, of course because of our recent experience, sesame. Interesting outcome. Sesame was completely negative. It barely even got red. We will still follow up with a RAST (time for our annual testing anyway) but for us skin tests have generally been a good indication of allergy.

Results of the others some happy surprises and some not happy non-surprises. Peanut was also negative. Yea! We have never tested peanut before so cross fingers that we have dodged the peanut bullet. Egg was a HUGE positive. Second in size only to Max's first peanut scratch test at age 1. No surprise really considering Owen's last experience with egg. Milk was positive but not much larger than the control and soy and strawberry weighed in with a little red bump for each. As he is consuming both regularly, Dr. B. thought these were still okay for us.

So again, sesame allergy or cross-contam with those darn Back to Nature crackers? (David just thinks 2 year old 25 pound boys should just not consume a half a box Ginger Sesame Crackers.)

Adding an Allergen?

2008-09-18T10:37:00.000-07:00

History: Owen is 2. Allergic to milk, egg and sunflower seed. Tested positive for sesame last year with a .44. The allergist asked if he had had sesame and yes he had, by accident (hummus), but liked it so much and had no reaction so I let him continue eating it. Allergist said this was okay. He has over the last year eaten lots of hummus and sesame crackers, etc. He is allergic to sunflower seed. Gets all over body hives from sunflower protein (namely sunbutter) touching his skin BUT RAST tested at .24 (what?). Has never consumed sunbutter but previously ate numerous things with sunflower oil.

Current issue: Two days ago I had bought a box of Owen and I's favorite crackers. Back to Nature's Ginger Sesame Crackers (contains sesame seeds and expeller pressed sesame oil). We have been known to polish off the whole box in one day. He ate quite a few in the morning. After nap I gave him a baggie of them as we picked up Max from school. When we got home he had a few hives on his stomach and then some on his face. Later he had a loose stool. All day yesterday he had diarrhea which has left his little bum red and raw. So I think it is a mild reaction to something and is similar to his milk reactions. We had started giving him whole milk yogurt and things containing milk after he turned one (pressure from pediatrician because he was underweight) and it always resulted in a few hives and diarrhea. (To which one of the pediatricians at the practice we go to did not think indicated an allergy and wanted me to start WHOLE MILK in a cup instead of eliminating milk all together, idiot).

So I am left wondering was his reaction to sesame (he ate A LOT of crackers) or cross contamination. I know that Back to Nature also makes a White Cheddar Rice Cracker and I read in Kids Food Allergy blog that Back to Nature does not do a good job with cross contam labeling.

What do you all think?

"NO PNUTS"

2008-09-16T09:40:00.000-07:00

The vanity license plate I spotted today. Cracked me up.

Strength in Numbers

2008-09-15T19:34:00.000-07:00

The surprising thing that came out of "being the honey" regarding Mrs. S. birthday celebration on Friday is that I found out there is another child in the class with just as many allergies as Max and perhaps then some. I knew there was another peanut allergy in the class as there are two epi-pens in the classroom and I knew that Max sits next to a boy at lunch who has an egg allergy. Turns out the two are in the same family. Twins! With food allergies! Boy and girl. The girl is allergic to peanut, tree nut, egg, soy and, I think, shellfish.

I talked with their mother on the phone. It was humbling and relieving and sad and GREAT to talk to her. And the best part was that the class parents turned the whole food thing over to us. And Ms. S. said she would prefer fruit for her party. So that is what other allergy Mom and I are providing. Fruit. Perfect.

On another note, a friend of mine who has been a long time reader of my blog, recently joined the food allergy club. I know she never thought she'd be here. Her son recently tested positive for peanut, almost all tree nuts, egg and corn. I know she is having a hard time. It's so hard to walk in these shoes until you have them on. I know she wants reassurance. So, I can't tell you that your son will outgrow any of his allergies. No one can tell you that. You didn't do anything to cause them and you couldn't have done anything to prevent them. Take those thoughts out of your head. But you can do this. You and your son are stronger then you ever imagined. I know adults with food allergies and parents of adults with food allergies. They have made it and turned in to great, strong people. You and your son will be there someday. In the meantime, grieve and learn and lean on some people and educate and don't be bitchy like me. And some day you will be giving this same advice to someone who has been newly diagnosed.

Welcome to the club. Sorry you had to join.

Being the Honey

2008-09-10T15:20:00.000-07:00

I have been a bitch lately. Lashing out at people before giving them a chance or walking in their shoes. Ever since Max started school this year I have just been in a tizzy of worry, clouding out all rational thought.

I don't know how many people have said to me lately "You'll catch more flies with honey than vinegar." And I know it's true. I was just saying to someone last night that I am going to try to "be the honey."

So today when I got an email from the class parent saying they wanted to celebrate Ms. S's (Max's teacher) birthday and were looking for suggestions for what to serve and that they probably couldn't accommodate food allergies so we with such problems would need to provide something else, I felt the heat rising from the pit of my stomach but thought "be the honey." I replied I would be thrilled to bake something for Ms. S.'s party. Chocolate cake? Oreo cookie cupcakes? Cookies? Muffins? You name it I can do it. I felt better about myself.

The reply I got was "Thanks for the offer. Can I get back to you when I find out about the other kids food allergies too?"

Be the honey....
Be the honey....
Be the honey...

Medic Alert Bracelets

2008-09-07T13:05:00.001-07:00

I bought Max this Medic Alert Bracelet because I think it is time he start wearing one. I got him something "cool" looking because I thought he would be more willing. No such thing. He keeps hiding it on me. I just found it again.

My husband doesn't see why he needs to wear one. He is safe enough at school and otherwise barely out of our sight. Even Max comes up with why he shouldn't have to wear it. The other day when I was asking him to wear it to the gym he argued that they didn't serve snacks there so he was safe without it. Besides he won't eat anything he isn't supposed to.

So does he need to wear it? And how do I get him in compliance?

What is Your Opinion?

2008-09-06T08:45:00.000-07:00

The following email came through one of my mommy groups. Not knowing the peanut allergic moms side, should peanut butter be banned in this classroom? I'm interested in your responses...

Ladies,

I've got a dilemma and I'm not sure how to handle the situation. It concerns my son and his new classmate who has a peanut allergy.I preface this by saying I'm a former EMT, so I'm very familiar with anaphylactic shock, severe allergic reactions, Epi pens, and the like. I'm not really looking for a Food Allergy 101 type of discourse, but more along the lines of how a child with food allergies assimilates into the non-allergic world.

Here are the facts:1. My son J (3.5 yo) is autistic and enrolled in a public elementary school that features a special needs preschool program. He was in the school last year, another Fairfax County school this summer for summer session, and back at his original school for the new school year.

2. Due to the nature of his condition, J is very tactile defensive and sensory, esp. with food. Think picky toddler eater, times 10. He has a special diet with biomedical supplements, so I'm not entirely unfamiliar with what it's like to *not* be able to eat everyday, common things that every other child on the planet enjoys. But he is down to 2 options for lunches (PB&J, or grilled cheese sandwiches.. .which he's not supposed to have because he's on a casein-free diet, but we do offer him occasionally so he doesn't completely max out on the other option. and yes, we've tried and he hates the non-dairy cheese alternatives, so we supplement with probiotics and digestive enzymes to help with any distress, but it does make him rather "stimmy"). He is down to 2 options for dinner as well, both of which require a stove to prepare - so we can't just flip the menu to serve lunch at dinnertime.

3. J IEP includes socialized eating during snacks and lunch, hoping that seeing other children eating and trying different things might inspire him to imitate. It hasn't happened yet, but the teachers are aware of his feeding issues. We supplement with private OT in the home for feeding as well.

4. A classmate of J's has a peanut allergy. On his first day of school, after we sent PB&J into school for lunch, the teacher asked me to no longer bring PB into the classroom due to the classmate's allergy.

5. I explained J's limitations with diet, his IEP needs and goals in respect to feeding/eating, and asked if there was a workaround since there's really nothing else we can feed J. She thought perhaps J could eat in another room or at a table by himself. I did not say anything because she needed to confer with the parents of the affected child and the health coordinator, but I was not really thrilled with isolating J because it seemed punitive (why isolate him vice the other child) and he would lack the socialization needed to expand his feeding skills and repertoire.

6. Today the teacher announced that they have rendered the classroom a "peanut free" room after speaking with the parent about the severity of the allergy. She is drafting a letter to send home to all parents, and PB is no longer allowable in the preschool while this child is in attendance.

7. J's school is not a peanut-free school, nor is the Fairfax County school system. The school cafeteria features PB&J on the menu daily as a "default" option if students don't care for anything else on the lunch menu. There are a few hundred children that attend the school. Since the child is clearly highly allergic if they're now rendering the classroom peanut-free, wouldn't it stand to reason that the other hundreds of children who use the bannisters, library, gym equipment, playground equipment, and other commonly-shared objects/areas could potentially harm this allergic child?

I keep thinking that there has to be a workaround. That this child could eat in the other preschool classroom... perhaps one room can be peanut-free and in the other it's allowable. I know it's not a perfect comparison because it's not a life-threatening situation, but when J would wig out from sensory overload when we went into a grocery store or heard another child crying which would trigger a complete empathetic meltdown in him, my first gut instinct was to protect my son because he's different and sensory-sensitive. But logically I knew I couldn't ask people in public to make their children stop crying (don't we all wish this was possible!?) or take their kids out of the store or ask the store to turn the music down or the flickering flourescents off. J had to learn to cope in a world with such uncomfortable, intolerable distractions. We have to live in "their" world; they can't live in "ours" - in other words. So when I try to think of things in a fair and balanced nature, I wonder how kids with severe allergies have to face situations that threaten their health on a daily basis, and what are potential strategies to accommodate both types of kids without penalizing one or the other. How does the peanut-allergic child live in a peanut-eating world? How do moms with children with severe food allergies handle this in the school, in public areas, etc.? How do moms who are current or former educational providers (public or private) handle both types of kids? I feel like I need to advocate for the rights of my own child, as much as another mom would advocate for the rights of hers. Both types of kids are entitled to the right of a public education. But rather than be combative, I'd like to find a cooperative solution (other than harm my own son's health with daily cheese intake, or sacrificing lunch in the schools everyday). Any insight, advice, or suggestions are highly appreciated.

Conference Fall Out

2008-09-03T12:14:00.000-07:00

The teacher is strict and stern. Not a lot of warm fuzzies floating around.

Max is truly being a disruptive turkey.

Conference Tomorrow

2008-09-02T09:14:00.001-07:00

Now I'm more nervous. She wants the school counselor to sit in on our meeting. What does that mean?

First Week of School In Review

2008-08-29T09:52:00.000-07:00

From a food allergy perspective last week went fine. The nurse actually called me the second day of school to see if I had any concerns. She said the girl who sits next to Max brought a peanut butter sandwich (for snack) the first day so they were going to talk to her parents and see if this would be an every day thing. If so they were going to switch seats. There is one other peanut allergic kid in the class so I don't know why they just didn't sit them together to begin with. There was a birthday so I sent in a cupcake. The teacher has provided me a list with all the birthday dates for the year.

I was more anxious than I think I was acknowledging. This is typical for me. I felt horrible all week. My stomach hurt. I generally felt on edge. Just dropping him off the first day was hard. But I didn't cry until Friday morning when the teacher asked if we could set up a conference because Max was having trouble "socially". I really think she means behaviorally. Apparently he was doing some pushing in line. I'm not surprised his behavior is less than perfect. He was testing everything last week. Throwing a fit when I asked him to set the table. Refusing to stay in his bed the night we had a babysitter. (He was up at 10:30pm when we got home.) He is a child who is terrible in transitions and likes to test and re-test to see how far he can take something. However, after just 3 half days of school was his behavior bad enough to warrant a sit down conference? My mind immediately went to dark places. With multiple life-threatening allergies, he's probably already not a favorite in the teachers mind. Add on a possible behavior problem and I fear a private school might suggest he's not a "fit". My husband thinks I'm being silly and after a weekend under my belt I'm looking at the situation from a different angle but Friday morning I went out to my mini-van and cried.

Tomorrow we start full day and car pool. They will have lunch at school as well as snack (all provided by parents). So we'll see what this week will bring.

The Day Has Arrived

2008-08-25T07:07:00.000-07:00

Tomorrow Max starts at his new school. I left last week's teacher meeting more nervous than when I went in. I had high expectations as the administration and nurse had been saying all the right things. Tables are washed after snacks and meals. Hands are washed before and after eating. The Epi-pen would be kept with the teacher at all times. The nurse is there full-time.

I got nervous though when right after we sat down, Max's new teacher (Mrs. S.) asked, "So he is allergic to peanuts. Does that mean peanut butter and things with peanuts in them as well?" I thought "Oh no, she doesn't quite get it."

"Do you want his place at the table washed before he eats?" she asked. I said I thought tables were already washed after snacks and meals. The other Kindergarten teacher (Ms. G.) spoke up and explained what they did last year. She had a child in her class the previous year with multiple allergies and was able to go through the table and hand washing process in detail. I added that if people didn't wash their hands Max would remind him. I explained Max's awareness of his own allergies and his defensiveness which can come off as being rude.

When we got to Max's milk allergy Mrs. S. asked, "So what about yogurt or those yogurt drinks, ice cream, he can't have those?" "No," I replied, "or Goldfish crackers or anything that contains milk."

"What will happen if he touches milk?" asked Ms. G, "We have lots of milk spills."

"He will get localized hives." They all seemed rather alarmed at this. I explained that they would need to wash the skin with soap and water. And observe him for other symptoms. Just getting on his skin wouldn't necessarily send him into anaphylaxis. I realize this may be the case for other children but in our case if it's not ingested it had never led us down an Epi pen path.

We covered much, much more about food allergies and Max's needs in order to keep him safe. By the end, Mrs. S. looked beaten down. Which made me more nervous. In hindsight, it has to be hard on teachers. The weight of responsibility for so many children's safety. To have a child who needs extra precautions must sometimes seem overwhelming. Especially when that child is allergic to something in every other child's lunch. I know how I felt when Max was first diagnosed "How am I going to do this?" She must in someways feel the same.

The extraordinary part was what happened when I got home. The school nurse called me. She wanted to know how I felt about the meeting. I relayed my nervousness and we went over the points we felt needed reinforced with Mrs. S. I felt I had found an ally.

It seems we covered everything to keep Max physically safe. But I am still worried about the emotional part. I wonder how much his food allergies will make him feel left out this year. I didn't feel I got into this as much during the meeting. Ah, well, it is a process.

I'm less nervous about the food allergy part now. My nerves today are probably more centered around everything other parents are nervous about. Will his teacher like him/understand where he is coming from? Will he get along with his classmates? Will he like it and embrace learning in a new environment?

I guess the worries never stop, no matter if your child has a food allergy or not.

Back to School

2008-08-20T17:25:00.001-07:00

Whew! We are back from over two weeks in Wisconsin and I have less than a week to prepare for school. I have a meeting with Max's teachers tomorrow. So far I am very impressed with the food allergy awareness they have in place. I am expecting tomorrow to go smoothly, just don't want to forget to cover anything.

Back in May at our support group meeting, Maria Acebel spoke to our group about school safety. She has a website and training program for keeping kids safe at school. She's a wealth of infomation and has turned making every school safe for kids with food allergies her mission. I am taking her discussion points with me to tomorrow's meeting.

Peanuts in Weird Places

2008-07-30T19:47:00.000-07:00

For the past two years I have been having problems with ear infections. Three really bad ones that just would not go away. Well, I wanted to get to the "root" of the problem. So after many PCP visits and THREE ear doctors I have a legitimate answer. Eczema in my ears. Some people have a problem where they have cronic itching in my ears (brought on by my enviromental allergies?). In any case, I pick at my ears or use Q-tips which introduce bacteria or the skin in my ears cracks allowing moisture to take hold causing a fungal growth. Bad news all around.

However, my new ear doctor said, there is a product out now that helps with ear eczema. Just a few drops a day for a week and my ears won't itch. Relief!

Out of habit I turned the sample over to check the label. Second on the inactive ingredients? PEANUT OIL! Seriously, peanut oil. In ear drops!

I held out using it for a week and last night concluded I needed to stop my ears from itching (more sneezing and runny nose lately too like I said allergies?). So I used the peanut oil drops. I'm just paranoid about them though. I wash my hands constantly and treat them like they are the deadliest of drugs I have in my cabinet. (Which okay, they just might be.)

What unlikely place have you found peanuts?

Angry at the Doughnuts - A Little Rant

2008-07-29T10:21:00.000-07:00

When I dropped Max off at camp this morning I noticed the teacher giving one of the assistants a few boxes that highly resembled something you would get at a bakery. "Do those boxes contain cookies, doughnuts or something else I need to be concerned with." I asked.

"Oh yes, doughnuts, for a birthday celebration. I don't suppose Max can have those?"

Hmmm, let's think about that one.

I replied no and headed home to round up a cupcake to bring back to school for someone's birthday celebration.

Why, oh, why, must people bring "treats" for their children's birthday, I say again. I simmered all day and glared at the offending Mom with the doughnut box at pick-up.

Tagged - 6 Random Things About Me.

2008-07-28T11:30:00.000-07:00

I have been tagged by Food Allergy Buzz. I've never been tagged. It feels like being part of the in crowd.

First here are the rules:

Link to the person who tagged you.

Post the rules on your blog.

Write 6 random things about yourself.

Tag 6 people at the end of your post.

Let each person know you tagged them by leaving an entry on their blog.

Let your tagger know when your entry is up on your blog.

Now, 6 random things about me:

I was considered a geek in middle school and generally shunned in high school. I was just generally not very popular and hence cast myself as the outcast in all social situations.

Despite not being the popular type I ran for Miss Wisconsin THREE times as Miss Sparta, Miss Southeastern Wisconsin and Miss Wisconsin Central. Which now seems weird even to me. I won preliminary swimsuit two of the years I competed and placed Top Ten, 1st runner-up and 4th runner-up in that order. The picture is from 1994 with my roommate from that year who's name is Pam and I believe she might have been Miss Waukesha. I'm the one in the purple.

I have lived in 6 states. Wisconsin (19 years), Washington (8 years), Arizona (6 years) North Carolina (2 years) Virginia (2 years) and Minnesota (1 year). Adding that up you get my age. (No we are not a military family)

I once was an elf at Santa Land at the Bon Marche in Seattle.

I love movies about people striving for greatness but being held back by the everyday only to find greatness in their ordinary lives such as "It's A Wonderful Life" or "Mr. Holland's Opus" However, the movie I will watch over and over again is "Overboard" with Goldie Hawn.

I don't like fish. Don't make me eat them. But like fishing. We took Max recently. He let all the worms go. That's me fishing a couple weekends ago. David thinks I'm hot when I'm fishing.

Now for the taggees. I am tagging a few other FAMs: Kids Food Allergies Blog (because she's an awesome blogger), This Adobe (because her blog is so elegant), My Kids' allergies (because she was one of the first blogs I started reading), Owen's Food Allergies (because Owen is having a rough month), Fruit of the Womb (3 for me, because she always leaves nice comments on my blog), and Allergy Life in Loudoun (because she's a great voice for food allergies and a real go getter.)

Ice Bat

2008-07-25T18:02:00.000-07:00

The night before Max's birthday he just couldn't wait for a present so I gave him one. He has been wanting an Ugly Doll. So I gave him and Owen their new friends. Max got Ice Bat and Owen got Ugly Dog. This was followed by Max's bright idea that his birthday cake should not only be a bat cake but an ICE BAT cake. Well, I'm game. Bring it on, I say. Judge for yourself.

Of course Max also needed to make a habitat for Ice Bat. A diorama if you will. Apparently Ice Bat lives in a cave in the Himalayas. Those are snow flakes coming from the ceiling. Later stalagmites and stalactites were added.

He then needed to make a habitat for Ugly Dog who apparently is from Africa. But sadly an image has not been captured of his home. Maybe another day.

Baking A Cake

2008-07-24T12:22:00.001-07:00

I have been wrapped up in my own little funk the past few days. I think the peanut challenge affected me more than I am willing to admit. Thing is I have become a person who doesn't cry much. It takes a lot for me to break down and cry. I hold it all in and then when the dam breaks I have a hard time stopping. Which is why I never cry.

But today I had a thought. Having a child allergic to many foods causes much baking to be done. Max's birthday is tomorrow. He wants a cake in the shape of a bat by the way. So today he and I set to making the batter. The whole mixing and pouring took less than 20 minutes. He and I had a pleasant time together (which is rare lately). So my thought afterward was that non-allergic kids parents generally buy their cakes or cupcakes. Rarely anymore does it seem like you attend a party where the dessert is homemade. And aren't those kids and parents missing out on that quality time? So here is the positive. Baking with your child is an enriching experience for you both. And we get to do it all the time.

Three Strikes and You're Out

2008-07-23T05:06:00.000-07:00

"It tastes like Sunbutter." Max said seconds after the allergist administered the peanut butter to his lips and tongue.

Less than a minute later he looked up from his coloring and said that his lips and tongue were itchy. He then started to cry and said his throat was itchy too. I went and got the allergist. By then his lips and tongue were slightly swollen. She gave him Benedryl and we hung around for the next 1 and 1/2 hours to make sure the reaction didn't advance. We left tired and hungry.

She said we will wait two years before we try again. Honestly, I could wait my entire life before repeating any of the food challenges we've gone through in the past five months.

What Brand of Peanut Butter?

2008-07-20T16:23:00.000-07:00

What brand of peanut butter does one buy for a peanut challenge? Max's oral challenge is Tuesday. I am really nervous about this one especially after the epi event with Owen in April. I am so afraid that even with a low skin test and a low blood test (.55!) that he will anaphalax. I felt I was really level headed about Max's milk challenge last March (failure) and Owen's egg challenge (failure). But with two failures to the two allergens all allergist tell you your child will outgrow what are the chances that he has really outgrown the one allergen allergist tell you your child will never outgrow? (try that as a tongue twister) Am I crazy to go through with this?

In the meantime, Jiffy or Skippy? Or the natural stuff from Whole Foods? Seriously, I have become so neurotic about avoiding peanut products I might need those gloves hazardous waste guys use to just pick up the jar and put it in my cart.

Random Act of Kindness?

2008-07-16T17:29:00.000-07:00

I took the toddler with me to Wegman's yesterday. Big boy was in camp. Sweet German high school babysitter is in Germany.

When I returned to my mini-van after spending nearly $200 I found a Wegman's gift card sitting on my back bumper. I picked it up, confused. I peered around the parking lot. Was I on Oprah? Where were the cameras? Was this a test?

An elderly couple walked by us. "I should give it to them" I thought. Followed by the thought "What if there's nothing on it. Then they'd really think you were cuckoo." I thought about going back in the store to find out if there was anything on it but I had a toddler verging on meltdown and a van full of expensive persihables. I got in to drive home.

As I drove I wondered how much was on the gift card? $20? $100? $200???? And why did someone leave it on my bumper? Was I deserving of such a gift? Like everyone else I am feeling the crunch in rising groceries and gas prices but for me it results in less lattes, less junk for the kids, not so many nights ordering pizza or Chinese take-out after the children are in bed. I'm not losing my house or having to walk because I can't put gas in my car. I started counting my blessings. I have great kids and a loving husband. A roof over my head. Food on my table. I am extremely lucky. And not deserving of the random act of kindness.

I called my husband when I got home and told him about the gift card. "Did someone hit the van ? Maybe it was left to make up for any damage done?" "I don't think so. I didn't look" I went outside to check. Besides one small paint scrape on the bumper, the van looked fine.

Still pondering the card I looked it over and found a customer service number. I dialed and asked if I could check the balance.

$3.27. At least I'm still blessed.

Two Entries!

2008-07-08T14:46:00.000-07:00

Boy, I totalled a whole two entries last month. I really am a slacker. Thing is sometimes I just get tired of food allergies. Talking about them. Blogging about them. I thought about a lot of other things to blog about but kept pushing food allergy thoughts aside. Alas it is an everyday part of my life so back to business.

We just got back from vacation in Alabama. We drove so there is the whole traveling with food allergies thing. The only place I have continued to stop for food is McDonalds. I know that their labeling for their fries changed a few years back but as they never presented a problem for us I have continued to let Max have them. However, I am sick to death of McDonald's. So on the way down I had us stop at Subway. They seem to have changed their kids meal recently. The previous round sandwiches contained egg (remember the sort of yellowish coloring). Now they just use the regular white bread but cut it in half. Max ordered a sandwich with lettuce, cucumber, and olives (the guy in front of me asked if was becoming a vegan a little early). I ordered Owen a turkey sandwich. They both got apple slices.

Max took all the veggies off his and ate only the bread. Owen ate just the turkey and left the bread. Next time I'll just order a turkey sandwich and they can split it between them.

Wegman's

2008-06-18T04:40:00.001-07:00

I treated myself yesterday. I hired a babysitter and went grocery shopping by myself! I have started going to a different store. Tried out a few locations. And yesterday decided I liked it enough I would surrender my name and address to them so they can track my spending and sell my name (don't know if they do that really) and got the shoppers club card.

I have been searching for a store where I can buy Silk Soy Yogurt and Oeros, Applegate Farms Turkey Bologna and Oscar Meyer hot dogs, Follow Your Heart Soy Mozzerella and Minute Maid Frozen Orange Juice. That perfect blend of foods we need for my allergic kiddos and the stuff you find at the regular grocery stores. Wegman's has it all. Almost a perfect balance.

Could still use a little help getting some of my other favorite products there, like Tuffutti Ice Cream! Why is no one selling Tuffuti. Also, Fruit A Bu fruit roll-ups, Fleischman's Unsalted Margarine and Back to Nature Sesame and Ginger Crackers (Owen and I can eat a whole box it one day.) Also not liking the hummus options at Wegmans.

For more opinons on products see Kids Food Allergy Blog.

But in general, Wegmans is it. I have begun a new grocery store relationship. I'm digging it. Even bought myself a latte there while I browsed the great kitchen items they have there.

You Could Die

2008-06-13T10:28:00.000-07:00

Max and David headed off on their camping trip this weekend with much food supplied by Mommy, two epi-pens, Benedryl, How to Read A Label handouts and after many pop quizzes administered by Mommy which Daddy aced.

Yesterday I took Max and Owen to the grocery store to gather (that's what us women-folk do right?) snacks for the trip. I let Max pick out cereal with sunflower oil, chips with sunflower oil and even individual packages of sunflower seeds (never seen a kid so excited about sunflower seeds) since Owen was staying home with me.

At home later, Owen wanted Max's cereal. Max put his arm around him and said "No, Owen you can't have that it would make you really sick and you'd have to have the shot." Owen continued to protest and point at the cereal. "No," said Max "You could die, Owen, you can't have that."

I stopped what I was doing and looked at him. I just let it go. I just didn't realize that Max knew that food allergies could kill you. I guess how could he not know. He has probably heard me say it though I try not to talk about it in front of him. He doesn't express fear of dying (only fear of me dying someday), so I just didn't know that he knew.

Pump It Up

2008-05-27T19:28:00.000-07:00

Max decided he wanted a Pump It Up party this year. As he talked about it he suddenly got thoughtful and asked "Do they make you have pizza to eat though?" "Oh, no," I replied, "I'm sure we could bring our own food, like hot dogs or something."

Boy was I wrong. I called to schedule the party and the woman on the phone started talking about the pizza packages. "Wait a second," I said. "Are we not allowed to bring in our own food."

"Well, yes and no. You can bring in your own cake and pre-packaged snacks. But no other food including any kind of salsa or dip."

"Well, we have a problem then." was my response. I explained Max's dairy allergy and that he couldn't eat pizza.

"Oh, in the case of an allergy we can make an exception." I was momentarily relieved until she added, "You can bring in seperate food for the birthday boy, but you will need to order a pizza package for everyone else."

"That still doesn't seem fair for Max. It is his birthday and it does bother him when everyone around him is eating something he can't have. It's an emotional issue for him as well."

"Well, how about this, for the time your party is set up most people have already had lunch. You could do a pre-packaged snack and the cake, which you can bring yourself."

I found this to be acceptable and honestly less work for me.

I will give Pump It Up half-credit. The woman I spoke to was kind and understanding of our situation. She handle the conversation professionally and with tact while sticking to Pump It Ups rules. (I'm sure she personally did not make them). But under no circumstances will anything other than pizza be served at Pump It Up. You may not bring your own hot dogs.

Camping With Food Allergies

2008-05-26T09:02:00.000-07:00

PK (pre-kids) David and I car camped up and down Western Washington state. From Orcas Island to the Cascades to the Olympic Pennisula. We prided ourselves on being minimalist in our car camping as well. We cooked over the open fire. However, our meals were often elaborate. Cashew Chicken Stir-fry, Brown sugar crusted salmon with pasta and snow peas, one pot chicken with vegetables. Scrambled mess for breakfast (eggs, potatoes and bacon.) We'd come back to camp from a long day hike to some high peak and spend lots of time chopping and drinking wine and relaxing around the camp fire. Okay, David was chopping and I was drinking. PK David was the chef and did a majority of the cooking. Now I do most of the cooking, however, I am more of a short-order cook.

This weekend we took both kids car camping for the first time. Meals are quite different with two food allergy kids. We had hot dogs roasted over the fire. We purchased a camp stove for making bacon and pancakes (recipe from "What's To Eat"). One night we had hobo dinners (hamburger, potatoes, carrots and onions cooked in tin foil on a grate over the fire). And of course a camping trip wouldn't be complete without s'mores. Chocolate bars prove to be the most complicated. I had to melt down safe chocolate chips into candy bar molds before we left. But allergy wise all went fine.

Owen-wise was more difficult. The kid was way too interested in the campfire so we spent most of the time getting in between him and the flames.

So our first excursion was less relaxing and less gourmet but in the end we want to create memories for our children that will take them into their adulthood and hopefully out into the woods.

(PS We packed four Epi-pens for the excursion. Two for each child. And Benedryl.)

Anger Management

2008-05-22T11:56:00.000-07:00

Warning: Off Topic Post

I have been taking an anger management class lately (it has made me realize my quick temper lately is more from my feeling of being overwhelmed than that my kids drive me to madness.)

Soon after the second class, which laid out our homework as noticing when we were getting angry and cooling our self down, Max tested me.

I was putting Owen in the bathtub. Max got up on a stool and started flicking the light on and off. "Max, please don't turn the light on and off. I can't see what I'm doing." He does it again. I turn to him very calmly and repeat "Max, please stop." He stops until my back is turned and does it one more time. I turn and yell "MAX, STOP DOING THAT."

He replies, "Ah, ah, ah, Mommy. Remember your class? I am just giving you a little practice."

Bested by a child again.

Soymilk

2008-05-21T13:13:00.000-07:00

Due to fairly recent recalls on Silk Soy Chocolate Singles due the presence of cow's milk proteins, the milk allergic might be questioning the safety of their soy milk. I have a solution for you. Make your own! A friend recently mentioned that her mother makes her own. She blogs about it at Soy Simplified. It's inexpensive and you are guaranteeing the safety of your own food.

Now, you might ask, does that mean you are taking up soy milk making? And the answer would be no. It's not that soymilk is inexpensive (it's not at almost $5 for a half gallon). It's not that I'm lazy (which I sort of can be). It's not that I wouldn't know what to do with the mounds of okara that is the by product of making your own soymilk (because I really wouldn't even with the help of my friend's mom's blog). It's that if I went through all the bother of making my own soymilk and my kids hated it and refused to drink it, I would be a little resentful. Max is the super taster you know. A change even in a brand of a product we use and he detects the subtle difference. For heavens sake I bought Red Delicious instead of Gala apples last week and he refuses to eat them.

Lactic Acid Starter Culture

2008-05-07T10:33:00.000-07:00

From everything I have read lactic acid starter cultures MAY contain milk proteins if they are derived from milk. However, lactic acid starter cultures may be derived from vegetable sources such as beet and corn. So if you see it on a label and have no way to call the company and get a straight answer (assuming someone at the company is knowledgeable enough to answer your question and/or will actually respond to you) assuming that the product contains dairy is the safest route to go.

Most companies don't indicate on packaging what the source of the lactic acid starter culture is, however, I know of a least one that does. Wellshire Farms does a line of meats including turkey sticks and pepperoni. On the label for their turkey sticks it states that the lactic acid starter culture is derived from corn. I personally think they are tasty though Max thinks they are too spicy. I haven't looked at a package of pepperoni but you can search their products with elimination of your specific allergen and pepperoni does come up as dairy free. If you are in doubt please call the company but (this is mainly for elisha (Hi! Thanks for introducing yourself)) may be worth a shot.

The Food Allergy Labeling and Consumer Protection Act only covers labeling for foods under FDA inspection. It does not cover anything under USDA, hence meat. Which is why companies don't have to disclose the source of their lactic acid starter culture. Here is a good FAQ sheet about FALCPA.

Ice Cream - Take 2

2008-05-06T10:53:00.000-07:00

I've been meaning to bring up some of the comments posted recently on a variety of subjects but as I suck at blogging lately I haven't done it. So I'll start today and try to do one a day.

A lot of people commented on the Purely Decadent post. Many of you really like Turtle Mountain products, a few prefer Tufutti. 1AllergyMom brought up that Turtle Mountain does process their product on shared equipment and felt like the labeling was misleading. I read their website and I guess I was heartened that they are at least watching out for cross contamination by batch testing. Here is part of their statement:

"Turtle Mountain applies strict quality control measures in an effort to prevent contamination by undeclared food allergens. To assure our preventative measures are effective, we sample test our product for the presence of gluten, dairy, peanut and almond allergens using state of the art testing methods. "

Mama o' the matrices also brought up that Tufutti does peanut products but does not label their products as such and sites a risk with these products as well. So, research well my friends, and decide what is best for your family. Cross contamination labeling is optional.

Coincidentally a new blogger had recently commented about Ice Cream as well. I had not heard of Temptation Ice Cream. At the end of this post she shares that Whole Foods claimed the company making the ice cream was going out of business and that's why they were no longer carrying the product. Via private email the author has told me that a call to the Chicago based company revealed this to be an untruth and they are still cranking out Temptation Ice Cream. In fact I picked up my first pint today at Wegman's. I'll let you know how the kiddos like it.

PS Also agree with Speedbump Kitchen that trying to clean Tufuttie Cutie Ice Cream Sandwich bits off toddlers fingers is ridiculously hard.

Do You Trust Your Husband?

2008-04-28T11:10:00.000-07:00

Last week my husband was talking about taking Max on a camping trip with other fathers and kids. A daddy and kid only trip. I must have been looking at him funny because he stopped and said "That's okay, isn't it." I hestitated. "Yes..." I answered. "What are you worried about?" he asked. "I'm worried about you managing Max's allergies on this camping trip." "Oh." he replied, "I promise I'll really pay attention to it."

It's not that I don't think he can do it. He just doesn't always think like I do. Assesing every risk. Checking out everyone else's food. Playing out emergency situation in my head. Reading every label. Just last week he came home with a new brand of hot dog. "Did you read the label?" I asked. "Doh!" he replied, "I didn't even think about it." Sure enough the hot dogs contained a lactic acid starter culture. I've tried to contact the company to find out if the starter culture is dairy derived but the haven't called back.

And up until recently he couldn't even remember that Max was allergic to tree nuts. I have heard more than once, "Cashews? Really? He's allergic to cashews? And pistachios? Since when?" Grrrrrr. I believe he does finally have that down as he was looking at new recipes last week and shouted from the other room "Cashews aren't allowed in the house, right?"

I will let him take Max on the camping trip. It would be fun for them. But Daddy will need some allergy boot camp before hand and I'll probably worry the whole time.

How is your significant other at manage your child's food allergies?

I Rocked the Taj Mahal

2008-04-22T06:10:00.001-07:00

Okay, still recovering from last week. (Caught a cold). But our Taj Mahal for Asia Day rocked! I don't pat myself on the back much, in fact if you compliment me I tend to say "Oh, it's all right. Could have been better." or some other self deprecating comment. But, seriously, I'm proud of myself!

Here's David and Owen in front of the Taj Mahal.

Close up of the "scroll" work. Each piece cut and glued by moi.

The food turned out okay. My Pancit Noodles didn't turn out. Seemed like an easy recipe but when you are cooking at 6:00 am sometimes things don't work. Max wouldn't try the veggie wontons, did not like the Samosas (even though they rocked!) but did like the Spring Rolls! One out of four is not bad.

I personally thought the Samosas turned out the best and as they are free of dairy, egg, peanut, tree nut, fish and shellfish, I'll leave the recipe here. I got it from a friend from Indian. She even offered to have her mother-in-law help. Wish I would have had time to take her up on it, would have been fun.

Samosa

2-3 cups of cubed boiled potatoes
1/2 cup finely chopped onions
1/2 cup green peas
1/4 cup chopped cilantro leaves
2 teaspoons coriander powder
1 teaspoon cumin
flour tortillas
red chili powder and salt to taste
oil for deep frying

Fry onions in a little oil til golden brown. Add cumin and coriander and fry for another minute.

Add boiled potatoes and green peas. Add salt and chili powder to taste. Stir for 10-15 minutes.

Stir in chopped cilantro and stir for another minute or so. Your filling is ready.

Cut flour tortilla in half. Put in some filling. Fold into shape of triangle and seal edges with a flour and water paste.

Heat some oil in deep pan. Fry samosa to light golden brown.

You may serve hot with Mint Chutney or other chutney. (They are good cold too. I'm thinking may be a great on the road breakfast item.)

I Need Four Hands This Week

2008-04-15T17:20:00.000-07:00

I volunteered to help create an "Asia" themed set for Max's school. The kids will take a pretend flight to Asia and explore the Taj Mahal, the Great Wall of China, rice paddies, Japenese Sand Gardens. So this week I am literally helping to build the Taj Mahal. I volunteered to do the mosiacs on the building. What was I thinking!!??

In addition, you may have seen my previous posts about food for this event. Here and here. They took half my advice on the food and are limiting the food to two types of dishes per country (for a total of eight different types of food). I decided that no matter what I am still going to need to provide Max's food, just to be sure he is safe. So in the next few days I need to make Spring Rolls, Samoasas, Veggie Wontons and Pancit Noodles. Someone wanna come help me?

Purely Decadent

2008-04-13T17:51:00.000-07:00

Saturday I visited two stores in search of Tuffuti Chocolate Ice Cream. I hate switching brands once I have found something that works for us. But as I whispered "Damn it, damn it, damn it" when I realized that I was not to find Tuffuti Ice Cream on that day, I picked up a pint of Purely Decadent Dairy Free by Turtle Mountain. I read the label. It didn't contain any of our allergens. Underneath the ingredients was the 'Allergen Information'. I started scanning it figuring it had to be cross contaminated with something. This is what it says:

'Turtle Mountain applies strict quality control measures in an effort to prevent contamination by undeclared food allergens. To assure our preventative measures are effective, we sample test our products for the presence of gluten, dairy, peanut and almond allergens using state of the art testing methods. To lean more about our allergen prevention program visit us at www.purelydecadent.com. CONTAINS: SOY'

Wow! You guys are too good to be true! But do you really taste 'Purely Decadent'. Max and I bought a pint to take home for a taste test. Max's conclusion "Delicious!" and I concur. It really is good and it's available at our local Safeway.

Multitude of Events Equals Multitudes of Substitutions

2008-04-11T10:36:00.000-07:00

Okay, so I'm exaggerating but we do have a lot of outside the home events to attend this weekend. Today I have been running through the mental list of things I need to bake, buy or otherwise get together.

Here's the list:
Saturday afternoon birthday party: The mother is keeping it simple (Bless her!) She is serving fruit, juice and cookies. Note to self: Bake cookies

Saturday evening auction and dinner at Max's school, kids are going to onsite child care (only $30 after paying $80 last week for a sitter this is a steal.): They are serving the kids ice cream and were going to serve goldfish crackers but changed to teddy grahams. Note to self: Buy Tufutti Ice Cream (Chocolate) and send along own ice cream scooper (so my kids don't get cross-contaminated ice cream).

Sunday Newcomers Welcome Luncheon at our church: croissant sandwiches and sliced wraps (from Costco), potato salad and cole slaw (Safeway deli), brownie bites (Costco), Country Time lemonade and sparkling water. Glad she gave me a complete list but this requires I bring along complete lunches for Max and Owen. To make it simple I'll pack: Turkey wraps, Pillsbury crescent rolls (Note to self: buy Crescent Rolls), Carrot slaw (grated carrots) and the cookies I will have already baked.

Why the list? I titled this blog "Everyday with Food Allergies" because I wanted other people to see the preparation that happens for events that people without food allergies don't have to think twice about. I also want to say that a year ago I probably would have only done the birthday party and skipped the school dinner and church luncheon all together. But I can't keep us all shut away in a house. We need to build a community, make friends and get involved. Unfortunately this often involves events with food. So we will just need to learn to deal. Bring our own food. Watch carefully. And carry an Epi-pen (or two or three).

Why the Challenge?

2008-04-09T09:46:00.001-07:00

(I have been avoiding my blog the past week. I've been having really angry feelings and misdirecting this anger at my husband (mostly my husband) and kids. And when I'm unbalanced emotionally everyone here seems to be off. So trying to recognize where I am and move on.)

3 for me asked why we challenged egg with Owen instead of testing. My husband actually asked the same question when I called to tell him what had happened. It's a good question.

I'll start that with a brief history of Owen's egg allergy. Having an older child with food allergies, I watched for ANY signs that Owen might have an allergy. He was a very colicky infant. So when he was only weeks old I did an elimination diet on myself (I was breastfeeding exclusively). I slowly added things back in by eight weeks he was a happy baby and the only thing I hadn't added back in my diet was eggs (interestingly enough toward the end of my pregnancy I couldn't tolerate eggs and threw up everytime I ate them.) We were on a trip the time Owen was eight weeks old and I had an Egg McMuffin one morning for breakfast. By evening Owen was a miserable baby. The connection seemed clear to me. So I steered clear of eggs until he was around 17 months old. By then he was only breastfeeding once (okay most of the time twice) a day and my diet no longer seemed to be affecting him. Some eczema but otherwise fine. He had by now exhibited allergy symptoms to dairy.

We did have Owen tested. Skin test at 9 months was negative for milk, small positives for egg and rice. At 17 months he was skin tested again, small positives for milk and egg. When I say small his wheals were 4 or 5 mm compared to Max's tests at this age which were 10 and 12 mm. Rice was negative we added it back in his diet.

After his reaction to sunflower seed we did a RAST. Milk was 2.6 (moderate level) Egg yolk was negative and egg white was only .55 (very low). On the same RAST sesame was .44. The doctor asked if he was eating sesame. I said yes. She said to continue to give it to him if he was tolerating it. He loves hummus and sesame crackers and eats them all the time.

Based on all these low test results the doctor suggested we challenge egg. I actually waited 8 months before I followed through with her suggestion.

So, what does all this mean? I think it means that the numbers don't always matter. Someone with a low RAST score can still have a severe reaction to a food. The number indicates that someone MIGHT react. It can't predict severity. And these tests are not perfect. They are performed by human being in a lab and errors do occur.

More than one allergist has said to "History trumps test results."

Tale of a Food Challenge - Owen Gets the Epi

2008-04-01T10:39:00.000-07:00

"Why are you cooking eggs!" exclaimed Max.

"Because Owen has a food challenge today to see if he really is allergic to eggs."

"Itchy" says Owen lifting up his shirt. Was this foreshadowing? I'm sure he was mimicking what Max did at his food challenge last week.

At the doctor's office they started out by just touching the scrambled egg to the inside of his cheek. He scratched at his cheek a little while later, it was red but not hivey so after 15 minutes they went ahead with the first dose of 1/4 teaspoon egg. I put it in his mouth and he pushed it out. He really didn't want to eat it, kept turning his head. I finally disguised it in some soy yogurt and he swallowed it. Complete betrayal registered on his face.

Soon after he was definately getting hives. I went and got the nurse who in turn got the doctor. We gave him some Zrytec and then an oral steroid. The hives were not abating and his eyes were beginning to swell. "I'm going to have to give him an Epi." the doctor said. I was surprised. They had been continually checking his blood oxygen and it was fine but I guess they just needed to stop the reaction. I held him on my lap while the nurse injected epinephrine into his leg. Soon after that he threw up. Before I had left the house I had thought to myself, 'I should bring him a change of clothes.' But I hadn't. I ended up having to take his shirt off and put his jacket on him because the vomit on his sleeve kept giving him more hives. We were there for two more hours before they released us after more anti-histamine and some oral steroids he is to take this evening.

I've been crying on and off since we got home. I don't know why this is more upsetting to me than last week. Because for the first time one of my kids got the Epi? Because it proves to me they really are THAT allergic. I don't know. Owen is fine now. Resisting nap as usual. I think I'll cry a little longer.

Celebrity Apprentice

2008-03-27T16:41:00.000-07:00

I am not one for celebrity worship. Even as a pre-teen I much prefered oogling the cute boy on my block then the members of Duran Duran. However, I have fallen in love with Trace Adkins. He is so down to earth and representing a charity already close to my heart, Food Allergy and Anaphalaxis Network. His own daughter has a life-threatening food allergy.

Courtesy of my local support group, here's a little more info on tonight's show and how YOU can contribute.

It's the final showdown between country music sensation Trace Adkins and British tabloid editor/America' s Got Talent judge Piers Morgan in the long-awaited season finale of The Celebrity Apprentice. Trace and Piers are the last two players remaining, and they will compete in a live two-hour finale airing on NBC Thursday, March 27th, at 9 PM ET/PT. Donald Trump will name one of them the first-ever Celebrity Apprentice and award a $250K check to the winner's charity.

Trace Adkins' integrity and passion for his charity, the Food Allergy & Anaphylaxis Network (FAAN), were enough to qualify him as one of the two finalists in this season of the TV reality series The Celebrity Apprentice. The final face-off will include a charity auction and performance by The Backstreet Boys.

They won't be the only ones singing. Trace Adkins will be performing his hit single "You're Gonna Miss This" live with his band during the finale. Immediately following his performance, a prerecorded live charity single download will be on sale to the public at iTunes.com, giving you an opportunity to support Trace Adkins' charity, FAAN. Starting Thursday, March 27th, this charity single will be available exclusively at iTunes for only two weeks. The net proceeds for the entire two-week lifespan of the download will go to FAAN. Thank you to Capitol Records Nashville and iTunes for coming together to give back to FAAN.

Also, NBC is now giving viewers a chance to lend a hand and support the charities attached to the show's finalists. Beginning Thursday, March 27th viewers will be able to donate to the two finalists' charities by texting the message TRUMP to 30101. Cost per text is $1.00, plus participating service providers may charge additional text messaging fees. Net proceeds will be donated to the finalists' charities. Viewers who text will receive a video message from Donald Trump thanking them for their generosity. Viewers can go to http://www.nbc.com/The_Celebrity_Apprentice/ for complete details. Entrants must be 18 or older.

The largest charity in the U.S. dedicated to helping and advocating for the 12 million Americans with food allergy, the Food Allergy & Anaphylaxis Network (FAAN) was established in 1991. FAAN's membership now stands at close to 30,000 worldwide and includes families, dietitians, nurses, physicians, school staff, and representatives from government agencies and the food and pharmaceutical industries. FAAN serves as the communication link between the allergic patient and others.

Trace's 6-year-old daughter had a severe, life-threatening reaction to peanut butter when she was just 9 months old, an experience Trace called "terrifying. " FAAN has played an instrumental role in the lives of families like Trace's and thousands more across the U.S. For more information about food allergies, visit www.foodallergy. org. Be sure to watch the finale of The Celebrity Apprentice on NBC, Thursday, March 27th at 9:00 PM ET/PT!

Nope

2008-03-25T16:40:00.000-07:00

"My ears are itchy," he says, just minutes after the doctor has given him a teaspoon of whole cow's milk via a syringe.

"You're ears are itchy," I repeat "Hmmm."

He turns his attention back to Toy Story.

"Do I have any hives?" he says. He clears his throat a couple times.

"Not on you face." I reply "Are you itchy anywhere?" I am trying not to put words in his mouth or ask too many questions.

"When will she check me for hives?" he asks.

"Well, if you have any hives I will go get her." I reply.

"I'm itchy right here. Do I have a hive?" He lifts up his shirt.

"No, no hives."

"It must just be a regular itch then." He says. He focuses again on the movie playing.

This repeats itself over and over again as we wait out the 20 odd minutes before the next dose of cow's milk. I write it off as nerves. He really wants to pass the challenge.

The doctor finally comes back in with . "Was that there when we started?" she turns to ask me. There is a small swollen spot on his bottom lip. "I'm not sure." I reply. His skin test was still positive so it is possible that a dribble of the milk irritated the lip. She listens to his lungs asking him to take deep breaths. His lungs are clear so we to continue with the challenge. She gives him two syringes full of cow's milk. "Let me know if there is any further swelling in the lip or if he is clearing his throat a lot." I nod.

He continues to say he is itchy, asks me to check his face for hives. After 5 minutes or so a definite large hive is forming above his lip. I call the doctor in the office. "We'll have to stop." she says. "I know." I reply. She gives him 2 teaspoons of Benedryl and says we will have to hang around to make sure the reaction doesn't progress.

"Do you understand what this means?" I ask him. "Yes," he puts his head on his hands. "Are you disappointed?" I ask. "Yes, I really wanted to try cheese." he replies.

The doctor and I talk. It is good that he tolerated as much as he did with only a minor reaction. However, she wants to wait another year before we try it again. "A year!" protests Max "That's a long time!"

"Yes, yes it is." says the doctor "But we want to give you time to outgrow the allergy."

I ask about challenging peanut. She feels with a low blood test and low skin test it is a good possibility he could pass a challenge but wants to wait til after his 6th birthday. Sometime in August.

Max is starting to fall apart. He's hungry. He wants to leave. I chalk it up to disappointment plus Benedryl.

After 30 minutes the hive has resolved itself; the Benedryl doing it's job and we are released. Max falls asleep in the car on the way home. Ever since he was first diagnosed at age one I would feel slightly panicked when he fell asleep in the car. I always want to reach back and make sure he is still breathing.

At home my mother-in-law suggests we play up the good side of this as much as possible. His bravery, he is outgrowing and we'll try again next year, it isn't his fault and there is nothing he did wrong it's just the way it it. She suggests a celebration.

So at dinner I make one of his favorites. Grilled chicken with rice and soy sauce. I tell him we are waiting for Daddy to get home to eat together because he are having a celebration. "A celebration?" he says "What for?" He loves any kind of celebration. "Because you were so brave at your food challenge today. Look what we get for dessert." "Cupcakes! Can I eat as many as I want?"

Challenges

2008-03-24T17:53:00.000-07:00

It has kind of snuck up on me. We have two challenges in the next week. Max challenges dairy tomorrow and Owen challenges egg next week Tuesday. Yikes. I will not give into speculation on what will happen and what will follow.

Max is excited though. He has asked a lot of questions about it and it has helped that we did a food challenge last year for black bean so he sort of knows what to expect. He asked if we were going to the store after the food challenge. I said maybe thinking he was going to ask for a toy if he was good. "Why?" I asked. He answered "because if we are, I'm going to buy some cheese." I guess he thinks he'll passed. I hope he does. More because now his hopes are up and I don't want him to be disappointed.

Easter Scramble

2008-03-22T18:16:00.000-07:00

About two weeks ago I realized I hadn't ordered a chocolate bunny from one of the nut free chocolate companies but thought "Oh, there is still plenty of time for delivery." Imagine my horror when I went online to find that both Vermont Nut Free and Amanda's Own were no longer offering shipping for Easter due to high demand. What was I to do? I drove myself to Michaels in a frantic search for a bunny mold and snagged the last Easter themed lollipop mold. So tonight I have been melting safe chocolate chips and pouring them into the bunny, chick, egg and flower shape. Okay, it really didn't take me that long. Max may still question why he doesn't have a full sized bunny but at least he'll have chocolate.

Eating Abroad

2008-03-21T10:58:00.000-07:00

I have been wanting to write about our food experiences in Spain (neither my husband or I have food allergies and we didn't take the kids) but re-entry into the real world has been rough and has left little time for blogging. My memories of cafe con leche on a sun filled plaza are slipping away. I want to escape back there if only for a moment...

Ordering food in a language you don't know if difficult. With our handful of Spanish and the waiters' handful of English, we did for the most part end up with food we wanted to eat.

The Spanish have an odd eating schedule. Breakfast consists mainly of coffee of which I drank con leche (with milk) and David drank his solo (self-explanatory) with a bollo (pastry) or small sandwich of jamon (ham) or queso y pimienta (cheese and pepper). I love cafe con leche. The drink is smaller than the lattes served in coffee shops here and the taste stronger. And even though breakfast was a no nonsense affair, never was coffee served in a paper cup. It was expected that you were going to sit down at a table right there and enjoy your pastry and coffee, if only for 10 minutes. The result is you don't see people wandering around nursing a double tall skinny latte with extra foam. I also realized I drink way too much caffeine.

The other great thing about Spanish breakfast was the fresh squeezed orange juice or zuma de naranja. The cool thing was the way it is squeezed. Every restaurant seemed to have this machine that the server fed oranges into the top. The oranges dropped down were sliced in half and then squeezed on this turning wheel and out flowed delicious fresh squeezed juice. I told David I want an espresso machine to make my own cafe con leche and an orange juice machine to entertain the kids in the morning.

The hard part about eating in Spain was waiting for lunch which is taken between 2pm and 4pm. My blood sugar levels had a hard time with this. Restaurants didn't even open for lunch until 1pm at the earliest. Seriously, how do people do this? The interesting part was watching things really shut down for this siesta time. In small places we visited like Segovia and Toledo, shops closed and people headed home to have meals with their families. Things reopen around 4 pm or later and I guess people work til like 8pm. And that's okay because dinner isn't served til 9, 10, 11pm!

The food itself was pretty simple. We ate a lot of jamon y queso served with el pan (bread). You can probably find the jamon we ate in Spain at a specialty deli. It might be labeled Serrano Ham. It is thin sliced, chewier and fattier than the ham we know. Kind of like prosciutto but not as salty. The queso was always Manchego, which I already loved.

Toward the middle of the week it became my quest to figure vegetables into my diet. They just seemed kind of scant on menus but I did find them. The language barrier often kept me from knowing exactly what I was getting or how it would be cooked but since I'm not a picky eater, I really didn't mind. I did ask at one restaurant what the deep fried seemingly tasteless vegetable was with my mixed otherwise grilled vegetables. The waitress said she had to check. She came back to our table and said she knew what it was in Spanish but didn't know the English word for it. She wrote it down for me. Acelgas, which translates to chard. Deep fried chard.

The day we visited Segovia it was freezing. We even got snowed on. The wind whipping through the narrow streets had us numb to the bone so we ducked into a little Lonely Planet recommended restaurant. I really wanted soup but couldn't find the soup on our menu listed in my menu reader book. It was called sopa castellana. Did you look at it? Yes, that is a huevo (egg). It was basically broth with breakfast in it. Not vegetable soup but it hit the spot anyway. Good thing I'm not allergic to eggs.

I would love to take my kids to Spain someday or any other foreign country but it occurred to me how difficult it would be to do this if you had food allergies. I don't take them to restaurants here in the states, how would I safely feed them in a country where I didn't speak the language? I guess we'll cross that bridge if and when we come to it. In the meantime, I'll be dreaming of cafe con leche.

Advice Giving

2008-03-17T09:33:00.000-07:00

Per a recent comment by another blogger I finally realized why I felt uncomfortable with the publication of my blog in Readers Digest. It was the assertion that I was offering advice on food allergies. In fact I think it says "Get real food allergy advice" and lists three blog addresses including mine. I want to say I have never thought of this blog as a way to give advice. In general I try not to give advice about anything unless asked. Saying I could give advice implies I am an expert. The only thing I am an expert on is managing my OWN children's food allergies (and even I slip up on that sometimes.)

However, I have learned so much from other people's experiences and that is what I want my blog to convey. My own, my sons', our experiences in dealing with food allergies everyday. And I use the word everyday to convey that we don't get a vacation from food allergies. We can't have just a little of an allergic food, we can't take off Christmas or birthdays to have special allergen laden treats. Our food allergies are managed everyday, one day at a time. I want to share our experiences and hope that others learn something from them. But for the record, I don't give advice:)

ACTUAL Letter to the teachers

2008-03-15T10:51:00.001-07:00

So here is ultimately what I did send to Max's teachers. I'll have to address all my other issues differently. Namely the distribution of the life-threatening food allergy list.

Via email:

First off I am sorry my sons were so distracting at our committee meeting yesterday. It was hard for me to focus or perhaps I would have been able to bring up these issues while we were all still together.

I have been pondering the food for the Asia Trip since our meeting and I have a few thoughts. The way the event is structured now is for many people to bring various foods making for a pot luck of sorts. I think this leads to a host of logistical problems. Where and how is the food set up? What about utensils/dishes/napkins, etc.? Where do people sit to eat? I feel a pot luck leads to people standing in line to get food, children focusing more on eating than enjoying Asia and a lot of garbage to clean up. How do we control the crowd and the mess? I just fear a pot luck might overshadow the real purpose of the "Asia Trip" which is to explore Asia not feed everyone lunch.

Here is my idea: What if one or two foods were choosen for each country and many people asked to bring the same thing already sepearted in to bite sized portions. For example a small bite-sized samosa for India, Shredded colored cocoanut or Chinese crackers in a small cup for China. The food would then be kept at a "kiosk" near the set for each country so the children could enjoy a small "snack" in each country. This way they could easily distinguish which culinary delight belongs to which country and still be hungry for lunch later on.

I also have food allergy concerns regarding a pot luck which I feel could be minimized with the "kiosk" idea. But that is an issue we can discuss later.

Please see my ideas as my way of offering options and simplifying this wonderful event.

What do you think?

End transmission

Letter to Max's Teachers

2008-03-14T20:05:00.000-07:00

To the teachers at my son's school:

First off I am sorry I had to bring my two children to the food committee meeting today. I know they are not the easiest children to bring somewhere and expect to be quiet. They were quite distracting especially to me. However, you did not choose the best time to hold a short meeting. Had you made it an hour later I could have left them with my husband.

Secondly, I don't feel the meeting went very well. I had wanted to insure at least a few safe food choices for my son. I am so tired of him being made to feel left out. The meeting was so scattered though and since only 3 out of the 13 volunteers showed up I don't feel I was able to make much of an impact. Also , I think the list of life-threatening allergies only really confused people as we are telling people they only need to really avoid peanuts and tree nuts even though things such as milk, eggs, strawberries and even white potatoes were listed as life-threatening. What is the point of distributing such a list unless you really want people to avoid all these items? (You also just singled out every child with a life-threatening food allergy by distributing their names and allergens to a number of people with their own agendas. I don't know how comfortable I am with that.)

I know you are asking people to label dishes but I want to point out a few things. People don't always know how to label a dish. For example, some part of the dish may need to be sauteed, the maker of the dish may do this in butter but forget to add that to the label. Or perhaps they use margarine in which case all the ingredients in the margarine should be included in the list. I will still look at the sea of food, labeled as it is, at this event and feel panic. My son will still only eat those items I bring. It is the only way I can assure his safety.

I don't know what I expected to be different. A pot luck is a pot luck. And with food allergies more than luck needs to be on your side. I guess at least I was assured that 3 out of his five allergens will not be present.

Lastly, to say that the food is only to give the kids a taste of Asia and that they will all be happy in the end because it is Pizza Friday that day and they all love pizza is the last disservice to my son who appears to be the only milk allergic child in the school or at least on the life-threatening list. He can't eat the "Taste of Asia" and he can't eat the pizza.

Why do I feel so frustrated with today?

Traveling WITHOUT Children

2008-03-03T04:54:00.000-08:00

You can find lots of advice from various online support groups about traveling with your FA kids. However, what about when you travel without them? Meaning what do you need to prepare when leave you them with Grandma and escape with that stranger of a spouse. I hear you laughing now. How often does that really happen? Well, it is happening to me this week, we are going to Spain! Grandma has arrived, our flight is this afternoon and my five year old is running a slight temperature and is complaining his ear hurts. But that's another story.

I know many of you have trouble with family members understanding and taking your childrens' food allegies seriously. I am lucky to be blest with parents and in-laws that understand the severity my kids allergies and want to do everything they can to insure their safety.

Here is what we have been working on the past week so that Grandma can take over:

1. I have always believed my house is the safest place for my food allergic kids. However, I went through all the cupboards to make sure all unsafe food was either tossed or clearly labeled. This was actually a request by my Mom. She doesn't want to make any mistakes. (I told her she could get cow's milk yogurt and milk for herself but she doesn't want to take any risks so even she is going soy for the week). So out went the crackers my husband bought for him and I but contain sunflower oil. Labeled was the box of Ms. Grass's soup which I bought when I was sick and wanted some comfort food. I was actually surprised how little in our house was unsafe. We keep a pretty clean home!

2. I pointed out the pan which I had been using for eggs. "Well, put it somewhere where I won't use it. I don't even want it in the cupboard." as my Mom's reply.

3. Provide lists of routines, meal ideas, things to do and of course emergency contacts and numbers and instructions. We went other where the almost half a dozen epi-pens are, how to recoginize anaphalaxis and how of course to use them.

4. But most importantly we filled out and had notarized a medical release form. A friend of mine told me a story about how she was in the ER with one of her children this past year and a man came in with his nephew. The child's mother was in labor at another hospital but the child was running a high fever and needed medical attention. The hospital refused to treat the child because the uncle wasn't the legal guardian and didn't have a medical release. So whenever you leave your children, food allergic or otherwise, always leave a notarized medical release form.

So we are off! I'm nervous but I know my kids are in good hands.

Addendum: Red Dog wanted me to add the medical release form. Here is where I printed a free form

Hors d'oeuvres For Your Oscar Party

2008-02-23T18:13:00.002-08:00

Last weekend I had to take an appetizer to our homeowners association board dinner (I'm Vice President). I recalled an appetizer a friend had made for a Mom's night out and decided to give it a try. As I made it I realized it was something my kids could actually eat (whether they would or not is debatable). In fact it seems to be free of the top eight.

So in honor of the Oscars here is an hors d'oeuvre to serve to all your FA friends:

Bacon Wrapped Water Chestnuts

1 C ketchup
1 C brown sugar
1 T. apple cider vinegar
2 cans whole water chestnuts
1-2 packages bacon

Cut bacon into thirds. Wrap each third around a water chestnut and secure with a toothpick. Cook bacon wrapped water chestnuts at 375 degrees for 30 minutes. Drain grease.

Mix ketchup, brown sugar and apple cider vinegar. Pour marinade over hot chestnuts. Let sit for however long you have (I refrigerated for 2 hours but you don't have to let them sit at all). Before serving cook at 325 degrees for 30 minutes. Serve hot.

Just to be sure, I looked up water chestnut. It is not classified as a nut.

Chuck E Cheese

2008-02-23T18:13:00.001-08:00

Everything went fine. I took in food. No one said anything. Max had a fabulous time and wants to know when we can go back.

Pizza Friday and Chuck E Cheese

2008-02-22T13:34:00.000-08:00

We had decided to let Max go to the Chuck E Cheese birthday party even before his testing but in light of his RAST number I think it is definitely safe for him to attend but of course he won't be eating the food there.

I called the manager at the Chuck E Cheese to make sure it was not a problem for me to bring Max's food in. To my surprise it was. "No, outside food." She really would barely let me talk with all her explanations as to why. It seems to be Chuck E Cheese's feeling that if one person brings in food than everyone will want to. (I hear the pizza really isn't that good) She did say I could bring in ice cream? (I'm sorry did you not just hear me say he is allergic to milk?) She said, "He could have french fries or a hot dog." I have to say I wasn't prepared for this conversation and was a little off my game. I asked if I could bring in a cupcake as I was sure they would be having cake and she said yes that was fine. I then explained that our substitute for pizza was an English muffin with carrots and olives on it. And this is what I would be bringing. She sort of acquiesced, saying that if we brought in something small and she didn't see it (wink, wink) it wouldn't be a problem.

Now I feel like I am sneaking food into Chuck E Cheese. I called the birthday boy's mom to see what the set-up was. Were we in a separate room so we would be less likely to be detected? She said no, tables were out in the open. She also thought it was ridiculous that I wouldn't be able to bring in food.

I guess we'll see how things go tomorrow. Perhaps it is leftover anxiety from childhood but I have a real fear of rule breaking. I don't want Max to get caught with contraband food and feel shamed. Maybe we won't bring anything and just leave before people eat or just continue to play. Any suggestions?

Freaky Friday

2008-02-18T08:17:00.001-08:00

Friday morning my email greeted me with the following:

TO: Me
From: My friend in my food allergy support group

Subject: You're famous!

"Did you know your blog is mentioned in Reader's Digest?? I was just inbed reading my latest RD, and there's a tiny little box on p. 75titled "Get-Real Food Allergy Advice". It mentions 3 blogs, and as I'mreading the intro, I'm thinking, "huh, wouldn't it be funny if one ofthem was Kari's?" And then I get to the third one, and it IS Kari's!!I didn't want to post to the group because I wasn't sure whether youwanted everyone reading your blog, and you may already know about thismention in RD, but just in case you didn't, I thought you should know!You're famous now - people are going to be coming to your blog in muchhigher numbers. NO pressure! :)"

WHAT! At first I thought she must have been mistaken but she confirmed it was true and I went and bought Readers Digest myself and checked and she was right. Right there on page 75 is my blog! The whole thing kind of freaked me out. I went back and forth over the weekend about changing my kids names and ultimately decided not too but did add a counter to the site.

I never intended this blog to be anything other than my own personal therapy in dealing with my kids food allergies though I do think it is important for people to understand the challenges we go through on a daily basis. However, suddenly having my blog published in a magazine is....wierd. I feel like when you speak up in class and suddenly everyone is looking at you and you freeze and your mind totally goes blank. I may have been an actress at one time but sometimes I freak out when I'm in the spotlight. I guess I'll just take a few deep breathes and keep writing.

Pizza Friday and RAST Results

2008-02-15T18:06:00.000-08:00

Hold the phone, put on the brakes, this is the reason I am not the allergist. I was jumping to all kinds of conclusions based on Max's skin test before seeing the RAST results. I was lamenting him not outgrowing milk. I was fantasizing about french toast. When really I should have just been...waiting. Which is not something I am good at.

So the allergist had good reason for us to come in and review the RAST results and re-do the skin test. To review: Max's skin test two weeks ago resulted in a large positive for milk, a negative for egg and a small positive for peanut (tree nuts were not tested).

The RAST results for milk and egg were complete opposites of the skin test. Meaning the milk RAST was NEGATIVE. Completely. Negative. No detectable levels of IGE. The egg RAST was the same relatively positive number it has been always been. Really hasn't budged. But here is the REALLY good news the peanut showed the same pattern as the small skin test. His RAST for peanut was (drum roll please) .51! It has gone down each year. It really looks like he may outgrow peanut. I almost started crying in the office.

With that info we re-did the skin test. (Max was less than thrilled.) Result was still the same large positive for milk and small positive for peanut. But this time egg was a big old positive. No explanation for why he didn't react two weeks ago.

So where do we go from here. What do we do with these results. For starters looking at his blood test it looks like he has outgrown milk. Yet for some reason his skin is "remembering" the allergy. Dr. B. suggested we schedule a food challenge in the office. We did. March 11th is the date. Yikes!

Dr. B. is more hesitant to challenge egg now and I have to agree. His number is fairly low by RAST standards. Only a 1.54 which falls in the moderate range. But he has been known to develop hives to eggs frying in the room and react to food cooked in a pan formerly used for egg so I think egg is truly a no go.

But peanut! Dr. B. said she could see us challenging peanut in the office in the next year. Even with low numbers and a small RAST peanut is still a tricky one and he could still react. Numbers are in the end really just numbers. They give us an indication that an individual may react but we can never now to what degree until the allergen is ingested and with a risk of anaphalaxis this is tricky business.

So I guess that's it. That's where we are. Whew! It was a really exciting and rather weird day. I'll get to the weird part in a future post.

Perplexing RAST Results

2008-02-14T11:04:00.001-08:00

Dr. B's office called today with Max's lab results for his RAST. Pretty good turn around for test results at any kind of doctors office. However, we are again left in ambiguity.

The nurse whom I spoke to said that there was some confusion as the RAST results did not match Max's skin test results so they want to re-do the skin test. Great, let's explain that one to Max. I asked if I could have the results and the nurse said it was better if I just came in as the results were "complicated". Now I've been recieving RAST results over the phone for a number of years now, how "complicated" can it be? Dr. B preferred that I come in for a follow-up and a re-do of the skin test and they would explain the results then. Also, if the second skin test results were good we could do a challenge in the office right then for one of the allergens. I thought I had her on this one.

"Okay," I replied "so WHICH food should I bring in?"
"Good question" she said "Just a minute"
She got off the phone and conferred with Dr. B. "I guess you should just come in and we will do the skin test and then schedule a food challenge."

Luckily they have an open appointment for tomorrow. Will things be any clearer then?

Reaction Today

2008-02-13T11:22:00.000-08:00

I have been suspicious of Owen's allergy to sunflower. I know he had all over body hives but his RAST was so low! Was he really allergic?

Well, I think he really is. Today for breakfast I had a piece of toast with Sunbutter. I ate it standing up and washed my hands after. HOURS later I was playing with Owen. Kissing his face and pretending to gobble up his cheek because it makes him giggle. As I pulled him away from me I realized his face was red and splotchy. Crap!

So just to make sure I took a tiny smear of Sunbutter and put it on the back of his calf (I know why do the same experiment if you already know the results. One word DENIAL). Of course he got a few hives on the back of his leg. I washed him with soap and water and gave him a teaspoon of Benedryl. He's fine.

Yes, he really is allergic to sunflower seed. The next step in the grieving process in acceptance.

Overheard

2008-02-13T11:09:00.000-08:00

The other day at The Little Gym I overheard a conversation. As one mom was leaving she said something about seeing them later and not bringing peanuts. The other woman rolled her eyes and laughed "Yeah, no peanuts." The first mom than went on to explain in whispers to a dad waiting on his daughter in class about some situation. I couldn't hear the whole thing as she really was whipering even though I was like ten feet away. I know I shouldn't listen in on people's conversations but it is a public place and the mention of peanuts had my antenea up.

I could make out parts: trail mix, peanuts, sitting next too, someone asking what they were eating. The last part she said in a normal volume voice "and then she asked "Could you please wash their hands!" She went on with a "Come on, they are just sitting there and here, I have my antibacterial right here."

I saw this as my cue. I said "Antibacterial doesn't affect food proteins. They need to be washed away with soap and water." I felt myself blushing as I get self conscious sometimes still when I speak up.

"Oh," she replied. She seemed a little surprised that I had said something. The conversation ended with that and she went back to occupying her small child. But after her child had a snack (Cheez-its) she took him to the bathroom to wash his hands. It hadn't been my intention and I didn't tell her that Owen was allergic to cheese. However, she didn't speak to me for the rest of the class.

Just before the kids finished she came up with her child and asked how old Owen was. Her toddler was the same age. She made small talk for awhile. It was interesting and I was unsure of what her intention was. Did I change something in her opinoin by my one comment?

I also found this interaction interesting because her own daughter is diabetic. She comes out of class at least once during the hour to get her levels checked. Her mother pokes her finger and then give her a small snack and back in she goes to class. I always figured that mothers who have children with special circumstances would understand that others have their challenges too.

(Seriously, when is blogger going to fix spell check!)

Shoe Shopping

2008-02-11T18:04:00.001-08:00

This past weekend I took the boys (Max, Owen and David) to a shoe store. Each of them picked out shoes for me. I needed tennis shoes so Max picked out a pair of Nike's with a big pink swope on them. I chose some others to try on but Max's pick won out as the most comfy.

We then moved to another isle because I wanted something cute. Max picked out a pair of Skechers with an Asian design and a pair of plaid with a dog on them. Both actually really cute. Owen picked out a pair of bright pink snake skin pumps and though they fit me unusually well I don't know where I would wear them. David picked out a pair of knee high leather boots becuase he thinks they are sexy.

Of course Max had the winning shoe choice and he also kept telling me "Mommy, you should get three pairs of shoes. You really deserve it."

I have lamented that fact that because I didn't have any girls I would never have anyone to shop with but maybe once Max stops feeling the need to run up and down the aisles and hide in the clothing racks he will prove to be a good shopping partner. He certainly has good taste.

He also understands the concept of coordinating one's outfit. Once when he was about three we were at the mall. A woman in front of us was wearing a skirt and knee high boots. Max looked up at me and said "Mommy, that woman's skirt matches her boots perfectly."

That's my boy.

Pizza Friday and Fantasies

2008-02-08T20:00:00.000-08:00

Now don't think I'm getting racey here. My biggest fantasy going into testing this year was about Max outgrowing his milk allergy. I imagined telling his teacher and asking if we could have a celebration. Cheese for everyone! I imagined introducing him to all the stuff he's been missing out on: whipped cream, ice cream, real pudding, macroni and cheese, PIZZA!

Instead my fantasy has shifted. After getting over the idea that he is not outgrowing milk, I really started to think about all the things he can have if we get rid of egg and peanut as allergens. Canned soup! Egg noodles! French toast! Baking will be much easier. It will change the face of how we eat breakfast.

And outgrowing peanuts! My word, the worlds that open up! I would say 75% of things in the grocery store are cross contaminated with peanut. Moon pies and Synder's pretzels would be options. Grocery store trips are going to take even longer because I will need to re-read every label in the place.

So the roller coaster ride isn't over. I hope, I hope, I hope the blood test results are good!

Blood Test Today

2008-02-07T17:58:00.000-08:00

Max was very brave. I had to pick-up him up early from school and he told all his classmates he had to go get a blood test. He is an anxiety ridden child when he knows he is going to the doctor. All his classmates told him to be brave.

For sitting on my lap and only crying a little while he took deep breaths and the phlebotomist drew his blood, he got to pick out a toy at Target. He chose Moon Sand. I chose new sheets, boots for the kids, a water can, shelves for the boys bedroom and other random things I just couldn't resist.

We'll probably get the results in a week or two. Keep your fingers crossed.

Skin Test Results - Sorry about the confusion

2008-01-31T16:12:00.001-08:00

So after some phone calls and comments I realized I need to clarify:

Milk - Skin test is a definate positive. Doesn't look like he will be outgrowing this year or perhaps ever. The wheal was a 12. In fact the size of the wheal has never changed from the time he was first tested at age one. I may have to deal with the fact that he may never outgrow milk. Hence "nope, nope, nope." Hasn't outgrown, down the roller coaster we go.

Egg - Completely negative. Not even a bump.

Peanut - Very small wheal. Even smaller than the control histamine.

The "still hope" for egg and peanut is because we still need to do the blood test. If the RAST numbers come back good (meaning they are down or the same as last years numbers which were in the low to moderate levels) we will be looking at oral challenges for egg and peanut within the next year!

A little sun, a little rain...glass half empty, glass half full. Haven't sorted out my own feelings yet.

Skin Test Results

2008-01-31T11:21:00.001-08:00

Milk - nope, nope, nope, nope, nope
Egg - still hope, still hope
Peanut - STILL HOPE, STILL HOPE

A Rant (mainly) About a Cupcake

2008-01-29T11:29:00.000-08:00

I'm sure you could look at this situation from the other mom's point of view but this is my blog and I'll rant if I want to.

Before school started Max's teacher and I talked about food allergies and birthday celebrations and she decided it would be best to just encourage parents to bring in fresh fruit for a celebration snack. I think this is great on many levels. Besides cutting down on the food allergy worries it keeps kids from loading up on sugar before lunch which is when birthday celebrations are scheduled. Just personally, I also don't know why food must always be the center of any celebration. Montessori does a lovely ceremony, involving the child walking around a lit candle the number of years he has been on earth to symbolize the sun going around the earth while the teacher talks about each year of the child's life. The child gets to be the center of attention and made to feel very special. Why add food to this?

So when on Friday, Max's teacher said another mom wanted to bring in cupcakes for her son's celebration (he was having a party on Sunday) I felt a little worried. Max's teacher gave her a recipe and strict instructions on which products and cross contamination. I still felt worried and called her Sunday.

Her son wasn't feeling well on Monday so the celebration was pushed to Tuesday. I finally got in contact with the mom Monday night. She was exasperated with the recipe. Here are some of her exasperations:

"The recipe looks so hard!"

"I don't have all the right ingredients."

"I'm not much of a baker."

"I'm sure every pan and bowl we have has had egg in it at some point."

"I didn't know someone could be allergic to eggs!"

"What do you feed him?" (When I told her he was also allergic to milk, peanuts and tree nuts)

(And my favorite) "My son just doesn't like fruit. Really. He just doesn't like it."

So I listened patiently and then did what she was really asking for. I let her off the hook. I told her to make whatever her son wanted and I would send something safe for Max. At which point she offered to make my son a fruit kabob! Come on, my kid is pretty good about his allergies but if everyone around him is eating cupcakes he's not going to be happy with a fruit kabob.

She gave the obligatory "I just don't want him to feel left out." which in return I gave the obligatory "Don't worry, this is our life and he is used to it. He hasn't known anything different." Blah, blah, blah. Why do I have to make other people feel good about my son's allergies when they want to go against the class rules and bring cupcakes because their son doesn't like fruit?

And another thing: When buying the usual (and only kind which were safe for us) chocolate chip cookies at Whole Foods today, I noticed the labeling was different. It now says they contain milk (even though I couldn't find milk in the ingredient list) AND it said it CONTAINED (not even MAY contain) trace amounts of peanut, tree nut and egg. Followed by good manufacturing practices used, yadda, yadda, yadda. This is completely different from previous labeling and it pissed me off.

AND ANOTHER THING! The person hosting our usual weekly afternoon playgroup sent out directions and indicated that she would be serving goldfish crackers and brownies as a snack. I emailed back that we wouldn't be coming. Somedays even I get tired of dealing with our allergies. And do we really need goldfish and brownies right before dinner?

Okay, done ranting.

The Roller Coaster Begins

2008-01-28T11:42:00.001-08:00

An earlier post talked about the difficulty getting an appointment at my allergist so on the recommendation from someone in my food allergy support group, I called to make an appointment with a new allergist, a woman who did her fellowship with the famous Dr. Wood. They could get me in in two weeks! Our appointment is Thursday. So begins the roller coaster. The up hill I hope, I hope, I hope followed by the downhill, nope, nope, nope, nope, nope.

I told Max today that he had an allergist appointment this week (thinking I was distracting him from some other tragedy going on in his life). "Are they going to poke me again?" followed by crying. I tried to explain that this was necessary, that we had to find out if he's outgrown anything. This did not help. And I realized it's as much a roller coaster of emotion for him as well.

So this week is met with apprehension, a few tears and I hope, I hope, I hope.