Leaving on a jet plane

We just completed another food allergy milestone- our first plane flight. While the planning was somewhat stressful (my fear of the unknown more than anything else), the flight itself went really smoothly. We did stay with family, so we didn't have to worry about the "eating out" aspect of vacationing that is a bigger concern for most food-allergic families. However, here are some things that might be helpful to other parents trying to plan their first flight for a food-allergic child:

• We contacted three airlines- Frontier, Southwest, and United. Frontier unfortunately was unable to accommodate our concerns, as they have recently begun selling peanut-containing snacks on their flights. Southwest said they would make an announcement prior to the flight to ask passengers to voluntarily refrain from peanuts, and they would not serve peanuts within a "buffer zone" of 2-3 rows. They also requested that we fly the first flight of the day, as all planes are cleaned overnight. United said that they do not serve any peanut-containing snacks, but that they couldn't guarantee a peanut-free flight, as passengers are allowed to bring whatever they wish on board. United was the best option for us, all things considered. (None of the airlines were able to make any accommodations for the milk or egg allergies, which we weren't really expecting anyway.) However, always contact the airlines yourself, just in case their policies change.


• When you make your plans, always contact customer service, either to make the reservation with an agent, or afterwards to inform them of the food allergy. Even if it doesn't affect their food service plans, you will want them to make a note of the allergy on your reservation.


• Bring your own snacks for on the plane! This is really the only way you know for sure that what your child eats is safe.


• Carry your EpiPen with you. You are allowed to bring it on board, as long as you declare it with security. I put it in the security bin, separate from my "3-1-1" bag, and informed the security agent that I was carrying it. Make sure that you have the prescription information, including the patient's name and doctor's name. You may also do this with liquid Benadryl or other medications you may need to bring- just be sure to declare it separately from your "3-1-1" bag. I also got a letter from our allergist stating that Bryan has food allergies and that we needed to carry the EpiPen on board with us, just to be sure.


• Carry disinfecting wipes- we had some for cleaning surfaces, as well as hand wipes. We wiped down the seat belts, as well as the trays, as soon as we got to our seats.

Some helpful websites for making travel plans with food allergies include:

Food Allergy and Anaphylaxis Network- http://www.foodallergy.org/Advocacy/airlines.html
Transportation Security Administration- http://www.tsa.gov/travelers/airtravel/specialneeds/

Lessons learned

Bryan’s most recent reaction occurred the first weekend in May, during a visit to Dallas. I had gone out to lunch with my sister-in-law, leaving Bryan with his grandparents. They gave him lunch and put him down for a nap. When I got back, though, he was still awake- and saying that he needed help because he was itchy. His grandfather went to check on him, but he called me to come take a closer look. Bryan's face, arms, and torso were covered in hives. He was sneezing too, but he didn’t seem to be having trouble breathing, so I decided to start with Benadryl and move up to the Epi-Pen if necessary. I sat with him, trying to keep him calm because he was definitely scared, and trying not to let him see how scared I was. However, the hives finally began to subside, at which point it was time to figure out exactly what had happened.

I asked what he had had for lunch, and Bryan's grandparents told me that he had the same chicken nuggets and fries that they always had, but that after lunch, they had made cookies from a cookie mix I had told them about and margarine that I had looked at the previous night- so they didn't understand why the reaction had happened. (Note- even if something is "safe", I check labels each time since companies often change their formulas.) I looked at both packages, and they looked fine, so I mentioned that it was possible they had been mislabeled. I asked again about lunch, but grandmother insisted that it was what they always had, and that I had previously said were safe. I pulled the bags from the freezer and looked at them, and sure enough- it was a different type of chicken nugget from what I had recommended, and EGG was listed on the package, both under the ingredient list and the allergen statement.

The experience was frustrating, to be sure. But I feel that it was also a blessing in some ways. First, the reaction could have been much worse. This was pretty minor compared to Bryan's first milk reaction. But it did give both grandparents a chance to see why it is so important to be as cautious as we are when it comes to Bryan's food. They have been very supportive, of course, but I don't know if they had quite grasped the seriousness of his allergies until they saw it firsthand. It was a good lesson in why it is so important to look at all labels EVERY SINGLE TIME. It also allowed Bryan to understand what an allergic reaction feels like, so that he can identify it. I was proud of him, actually- he did tell his grandfather that he wanted his Epi-Pen, so maybe he is starting to understand his food allergies a little more.

It also helped me realize that I need to stop feeling self-conscious about being hypervigilant over Bryan's food. I often worry about seeming too pushy when it comes to his allergies. (I had felt guilty about looking at the margarine the previous night because I didn't want grandmother to think I was "checking up on her".) It's something that I struggle with on a regular basis- I just don't want to come across as overbearing or obsessive. But really, I need to stop thinking about myself- because it's not about me. It's about Bryan and keeping him safe. And his safety is so much more important than what other people may or may not think about me. Now, I'm not saying that I plan to put Bryan in that bubble I mentioned before (although it certainly was tempting after this happened...) But it is important to remember to keep a little perspective. =)

To test or not to test

Claudia has entered the world of solid foods now, and she is coming up on the age that Bryan was when he was first diagnosed with his food allergies. She is also experiencing some of the same growth problems that Bryan had. Her pediatrician has ordered some tests, and we are going to go see a GI specialist next month. My worry is that the GI doctor will recommend that we supplement her diet with formula. (Fateful words in my experience.) Soooooo... what do we do? Do we start her on regular formula or go straight to soy? And what happens as she gets older, and it's time to move beyond strained green beans and rice cereal? Do we introduce foods that may contain eggs or milk? Or do we put her on the Bryan-safe diet as well?

Most of the recent research indicates little evidence for higher occurence of milk or egg allergy among siblings (there does, however, appear to be a higher occurrence of peanut allergy). And Claudia hasn't had some of the other signs of food allergies that Bryan exhibited (no eczema, no random hives). However, I'm leaning towards keeping the Bryan-safe diet through her first birthday, then asking to have her tested for the "Big 8"- milk, eggs, peanuts, tree nuts, wheat, soy, fish, and shellfish. (These 8 allergens account for 90% of all allergic reactions.) I don't want to be the pushy mother, but I also don't want to go to the emergency room if I can avoid it.

So what do I do? I guess I have about 6 months to try to decide...

Learning the hard way

We found out about Bryan’s food allergies through a trip to the emergency room. Bryan has always been on the small side (which is no surprise, if you have ever met me or my husband). However, his growth slowed down dramatically between 4 and 7 months. At a 7 month weight check, his pediatrician recommended that we try supplementing his diet with some formula. So I went to the store, got the formula that she recommended, and sat down after his late afternoon feeding with a small bottle.

The reaction began immediately. First, he started rubbing his eyes and sneezing. Within the next few seconds, his lips started swelling and huge hives appeared on his face and began to spread across his entire body. Then he began to choke as his throat started to close up. I grabbed the Bendadryl from the medicine cabinet and tried to give him a dose, but by then his throat had swollen up so much that he couldn’t swallow any of it. I called his pediatrician’s office, got the answering service, and decided that if anything warranted a trip to the emergency room, this was it. I put Bryan in his car seat as quickly as I could and took off.

The closest emergency room was thankfully only 5 minutes away from my house, but those were the longest 5 minutes of my life. I remember begging the lights to stay green, feeling completely helpless as I heard the little baby in the backseat trying to cry, but only managing a little gurgle because his throat and tongue were so swollen. By the time I got to the hospital, his entire body was swollen and red, and he had started vomiting.

I filled out the intake information as I held Bryan, trying to comfort him at the same time. We were ushered in right away, thankfully. I lay Bryan down on the bed and tried to hold his hand and keep eye contact with him as the nurse and doctor took over. The doctor took one look at Bryan and asked, “What did he get into?” I explained what had happened, showed the doctor the package of formula that we had used, and he told me that Bryan likely had suffered a severe allergic reaction, called anaphylaxis, to the milk protein in the formula. Bryan got doses of 2 different medicines- to be honest, I’m not even sure what they were, but they worked, and Bryan's condition started to stabilize. The doctor ordered a third medication (a steroid this time, I think), just to be sure.

We were at the hospital for the next 4 hours, as the doctor wanted to keep Bryan under observation in case a second reaction (called a biphasic reaction, and not uncommon in serious reactions) occurred. My husband rushed to the hospital as soon as I was able to get a hold of him. We sat there together watching Bryan (who was still very red and puffy). He slept a little, crawled around on the bed a little. When we finally were discharged, we were all exhausted. We set up Bryan’s portable crib in our room (there was no way I was going to leave him alone overnight), and I basically sat up all night, checking on him every 30 minutes. Even though I knew there was no way we could have guessed this was going to happen, I still felt horribly guilty- because after all, I was the one who caused this by giving him the formula in the first place.

We followed up with Bryan's pediatrician the next day, who referred us to an allergist. We had some testing done, and found out that Bryan was highly allergic to milk, eggs, and peanuts. Our allergist also recommended that we join the Food Allergy and Anaphylaxis Network (FAAN), which has been a great resource. It was a huge learning curve at first, and I know that we have many more challenges ahead of us (hello, preschool!) But I think we have settled into a good rhythm for now, and I have generally given up the idea of keeping Bryan in a big plastic bubble for the rest of his life. But I haven't completely ruled it out. =)

Our little corner of the world

Hello, and welcome to our little corner of the world. For those of you who don't know me, I am a mother of two children- Bryan, who is 3 years old, and Claudia, who is 6 months old. Bryan was diagnosed with severe allergies to milk, eggs, and peanuts when he was 7 months old. And so we began our journey into this confusing world of Epi-pens, label-reading, and CAP-RASTs.

The purpose of this blog is two-fold. First, I wanted a way to keep family and friends up-to-date on Bryan’s allergy situation. People often ask me how his allergies are doing, whether or not we have seen any improvement. There are also times that we have setbacks, and I would like to have a way to tell people what has happened without having to relive the experience 20 different times. Second, I wanted a way to share some of what I have learned about food allergies with other parents. There is a lot of great information out there about the technical side of things- how the immunological response occurs, current medical research and legislation. However, there is also a very personal side to the story- the day-to-day aspects of life, the successes, and the fears. This blog is my way of sharing both of those sides- information and ideas, as well as thoughts (and ramblings) about my family's experiences. Raising kids with food allergies can be overwhelming sometimes- my hope is that through this blog, parents in similar situations will know that they are not alone.