Adding an Allergen?

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"

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

Strength in Numbers

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

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

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?

Conference Tomorrow

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

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

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

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

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

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.

Ice Bat

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

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

"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?

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.

Two Entries!

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

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

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

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

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.)