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.
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.
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.
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.
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?
"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.
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.
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?
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.
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!
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.
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.
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.
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."?
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.
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.
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.
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.