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Adventures in Food Allergy Testing (Part 2: the Results)

Posted on June 23rd, 2010 by Alison Read 20 Comments - Add Your Own »

oneeggWell, we did it today. We did the egg challenge. The way it turned out was not at all what I expected. I documented the whole thing as it was happening, not knowing what the outcome would be as I scribbled my notes.

I brought my daughter in to the doctor at 9:15, one scrambled egg in tote (to find out why I decided to have her do an egg challenge, please read Adventures in Food Allergy Testing Part 1). I was also armed with ketchup, salt, some bread (egg-free) and some turkey, just in case she didn’t like the egg and I had to doctor it up. The taste of the egg wasn’t a problem at all. Here’s how the rest of the egg challenge went down:

9:25 am: She eats a tiny amount of egg. “Yummy,” she says and the doctor says, “She likes it — that’s good.” I am surprised she likes it so much.

9:35 am: Doctor comes in and examines her throat, face, skin and breath. There is no reaction. He says to eat a larger amount, so she eats about a teaspoonful. After a few minutes she says her ears itch inside a little and her tummy hurts a teeny, tiny bit. But after another few minutes, she doesn’t seem to be having any problem and continues to watch the movie on the DVD player I brought. She is even singing with the movie. 15 minutes later she says her tummy hurts again, but then she gets a drink of water and says she is fine.

10:00 am: Doctor checks her again, sees no sign of reaction and says she can eat 3 bites of egg. She again says “It’s yummy.” The doctor says again that the fact she likes it is a good sign.

10:25 am: Doctor checks her again. So far, so good. Now I am starting to get a little excited, thinking we are in the clear. She is excited too, but I tell her that we are not done and that she gets to eat the rest of the egg now. She doesn’t really want to, but she is motivated by the possibility of getting to eat eggs in the future. She takes a few bites and then says that her tummy hurts. She finishes the egg at 10:35.

10:45 am: She scratches her chin and I see that there is a little hive there. She is using her upper teeth to scratch her lower lip, where I see another hive and she is simultaneously scratching her lower arm where there is another hive. I go get the doctor. He checks her throat and says it is okay. She is feeling more and more itchy and uncomfortable. He gives her allergy medication (Zirtec) and wants to give her an adrenaline shot. I look at him wide-eyed — really? A shot of epinephrine? Is that necessary? I don’t want to freak her out and he says okay, we can wait and see and gives her an asthma pill just in case. By now, her eyes are really red and itching like crazy. Her tummy is hurting, she’s feeling awful and starts crying, “I want to go home!” As she is deteriorating before our eyes, the doctor says she needs the shot to reverse the symptoms more quickly. The nurse gives her a small dose (.5mg) of epinephrine in her arm. The regular epinephrine shot, most commonly known as the Epi-Pen, is .15mg and is administered in the thigh muscle for the fastest absorption into the body. When given in the subcutaneous fat level of the arm, it is absorbed more slowly. The doctor felt that this was all she would need. Nope.

11:10 am: She is lying down, feeling a little better. Her eyes are still itching like crazy, but she refuses to try eye drops to relieve them. She is really congested and begins to cough. The doctor checks her and finds that she has swelling in the right side of her throat. The coughing is a sign that her airways are being affected. The doctor orders another adrenaline shot, this time .1mg. I ask if this is a considered an anaphylactic reaction. The answer is yes, and this is why you do food challenges in the doctor’s office. No eggs for her, in any way, shape or form. I am feeling shocked. I thought she might have a rash today at most.

11:35 am: She is a little hyper from the adrenaline and feeling better. The doctor warned me that she might get pale lips from the epinephrine. Yes, her lips are looking pale.

11:50 am: I am reading a book to my daughter who is sitting on my lap when the doctor comes in for another check. “Flushed,” he says. I turn her around and my eyes must have bugged out of my head. Her face, chest and back are flushed so red she looks like she has a really bad sunburn. She also has a few hives on her back. “I think her reaction would have been much worse without the medication,” says the doctor. He checks her heart rate and it is okay, but because she is so flushed, he orders a third shot of epinephrine, this time .5mg. The red is traveling slowly down her body, and eventually reaches her legs, which eventually also look sunburned. She is cold, so they bring her a blanket. She is feeling much better and is in good spirits, but we have to stay another hour.

1:00 pm: After a few more checkups, the doctor determines that nothing is progressing any further and that we can go. She is still really red, but other than that, she is okay. She wouldn’t resume her normal color for another hour.

Before we left the doctor’s office, I confirmed with him that had this happened out in the world, I should have given her the Epi-Pen. Absolutely. “And even if you aren’t sure, just give it.”

So many thoughts have been swirling in my head since this experience. The first is, I can’t believe I didn’t cry. I was quite unemotional and I’m not sure why — maybe I was in shock? Or maybe because I felt like I was part of a science experiment. Or was it because I was playing it cool for my daughter’s sake so she wouldn’t freak out? It is sad news: my daughter had an anaphylactic reaction to an egg. So… we will continue to avoid egg, but be even more careful about it.

Another thought: Did I have false hope? With the 50% chance given by my doctor, I figured it was worth the gamble to try the egg. If we could have added it back into her diet, it would have been like winning a jackpot.

The most important realization of all: THIS IS REAL. FOOD ALLERGIES ARE REAL. Dare I say that part of me has at times wondered if she really was allergic to all these foods, that maybe the tests are overdiagnosing as several past news articles and editorial pieces have suggested, that maybe her tests weren’t accurate, that since we’ve never had to use the Epi-Pen, maybe we wouldn’t really need to. Even though this day did not bring me the happy results I wanted, it did bring me clarity. It brought me resolve to stay vigilant in protecting my daughter. It brought me confirmation that we need to continue to raise awareness about food allergies. After what I saw happen right in front of me today, I know for sure that they are real.

Related reading: Diary of a gluten poisoning

Comments

  1. You are both so brave. What a horrible thing to go through – but thank goodness you were in a safe place for the test.

  2. I feel bad for her that she had to go through the reaction, but I’m glad you know for sure now.

    I am allergic to egg whites but have no problem with the yolk. It makes baking a tiny bit easier…sometimes :)

  3. Well, rats! I was hoping she would pass the food challenge! So sorry that you both had to go through this.

  4. PS – I would like to share a link to this post, even though we are not a food-allergy family any more. Awareness is SO important!

  5. Oh, what an awful experience! But the clarity is so important. If you didn’t know for sure, you could easily be tempted to let a little bit slide here and there. At least I probably would! (ha) Good thing there are so many vegan recipes & resources available now…

  6. Wow, I’m amazed at how similar (in some ways) your and your daughter’s experience was to mine and my daughter’s at the egg food challenge. Although, we did not have to administer epinepherine and were able to stick with benadryl. But I can totally relate both to the feeling of getting one’s hopes up (and then being shocked and disappointed), and to the feeling of secretly doubting whether your child was *really* ever allergic to egg in the first place. I would’ve bet money that mine wasn’t, but it turns out she was.

    So no baked eggs either then, huh? Bummer on that front, but I guess you’re used to cutting out eggs already!

    Oh, I also think that your ability to not cry or freak out probably came from having to keep it together in front of your daughter, and from knowing that she was having a reaction in a safe, controlled environment where she could be immediately cared for, so it probably does not feel the same as having a reaction anywhere else.

    Thanks for sharing your story.

  7. Awww man! I’m so sorry your daughter went through this but I’m really proud of you (and her) for keeping so calm. I know I wouldn’t have been able to. Your post makes me realize that I need Bella’s buy in to have a challenge and that I shouldn’t push her into it. I’m gonna lay off her for a while :)

    How’s your daughter feeling about it? I would expect that she’ll have some anxiety about it for a while – what a scary experience.

    Big hugs to you guys from a fellow FA mom! :)

  8. Wow, I’m so glad that you were in the Dr.’s office and that everything turned out well. How scary for you both!! My son has a similar reaction to wheat and to egg. It’s frightening to me to watch but I’m always amazed at how I don’t fall apart during it (but I usually do later after the threat is gone).
    My son is terrified of Doritos now. He liked the taste of them too. Now he can’t even smell them. He runs the other way. Which in a way is a good thing, but I hate for him to be scared.
    I hope your daughter is doing better and that she wasn’t frightened by her experience. Thanks for sharing your story. Yes, food allergies are real (and really scary!!).

  9. Big hug to you Alison. Brave and strong Momma.

  10. Alison,
    So glad your daughter is fine today and that your had this testing done in a doctor’s office.
    Food allergies are not a joke!
    Here’s to hoping she feels fine today.

    You know you are one strong and caring mom.

  11. Wow, that was quite an experience for you both, Alison. Even those of us who are familiar with intolerances and allergies can still be surprised at their vehemence, so to speak. So glad that your daughter is okay. And, I suspect you did the mom thing and held it together. Did you “break down” a bit once you got home? I could see myself doing that. Thanks for sharing this with folks.

    BTW, my son called earlier. He’d gone to McDonald’s and ordered two cheeseburgers with no buns. His order came and it was on buns. He sent them back. A few minutes later, they brought out his order. As soon as he ate them he started feeling ill and called me upset. Most folks just don’t get how that amount of gluten can affect someone who is intolerant to it. At 22, he wants the convenience of going to McDonald’s and ven though its’ not a recommended course of action, most of the time the personnel does leave off the bun and he does fine, but every now and then … Food has huge effects on folks. I daresay that there are so many folks who have sensitivities and intolerances who don’t know at all.

    Again, so glad your daughter is okay. Not only was this clarifying for you, but for her as well. After that reaction, she won’t ever be tempted to cheat.

    Shirley

  12. Wow, what an experience. I completely understand why looking to add back something so basic as an egg would lead to testing it. I would have done the same. You are so wise to have done that in the doctor’s office under educated watchful eyes that could correct the reaction. You’re amazing. I think your instinct to protect took over and kept you calm so you could follow what the doctor needed to do. So no eggs happening there. But, I also think that your daughter now really understands why not and probably won’t ask for them or miss them.

    Thank you for sharing this and pointing out that this is real and not a mistake or in our heads. Keep up the good work!

  13. You know, I tried to do the allergy shots for my environmental allergies. No matter how slow I went, I still had reactions and the more weeks I went the more major the reaction got so I finally stopped.

    It seems like keeping calm was a really good way to react. If you had been emotional you might not have been as observant and not have listened as well.

    I hope they go away someday. If not, at least you’ll be able to handle the situation as well!

  14. Sorry you both had to go through that. I have a 23 year old who has been allergic to eggs his entire life, as well as milk and nuts. Allergies are no fun and reactions are less fun. My son’s personal grocery list is posted at http://www.FoodAllergiesToGo.com, so you might be able to find something useful there. The site also includes a database of food allergy friendly restaurants.
    My other son, outgrew his milk, egg, and peanut allergies around age 13. When the Rast tests came back negative, I requested a skin prick test before the challenges.
    My doc is very conservative, so he allowed a quarter teaspoon of egg every 15 minutes.
    There’s still hope. My 23 year old’s Rast scores are still dropping, so your daughter still has time on her side.
    Food allergies are alot of work, but the kids can participate in almost everything with a bit of creativitiy. My son has traveled, been to college, lived out of state, attended the h.s. prom 3 times, played sports, dated, etc.
    Best wishes, Ann@FoodAllergiesToGo.com

  15. Wow – so sorry that it was such a bad reaction. But, knowledge is power, right? Now you know and can keep doing what you’ve been doing so wonderfully already – keeping your daughter safe.

  16. Thanks everyone for the nice words. I was hoping for eggs in baking but the allergist said no because we don’t know how much she can tolerate, and you never know how much is in a baked good.

    I am still glad I did it, so now I know for sure. We’ll try again in 2 years I guess!

  17. So sorry to hear that she had to go through all that. At least you know. We are waiting to see an allergist for my one year old. Love your site!!!!

  18. I’m so sorry that happened. The same thing happened with my son (and with his 5 yr MMR shot, fyi) but we tested with baked egg. I’m a little surprised the dr. wanted to food challenge her on straight egg (ie-not baked) first. Dr. Wood (at John Hopkins) mentioned to us that the next time we food challenge egg, he will have us bake one egg in 12 muffins so you will know exactly how much can be tolerated.

  19. Awww, I almost cried! Poor girl. I’m sorry she had to go through that, but yes, now you know. I’m currently doing food challenges, but my allergist didn’t suggest them in office (probably because I don’t have history of hives or other “allergic” reactions to foods…mine are more digestive.) I understand what and why I’m doing it – but with kids, I can imagine it’s hard! Best of luck!

  20. Ginger,
    The doctor’s approach was that if she could tolerate one cooked egg, then we would know she could tolerate it in baked goods. Now, since she had such a big reaction, his feeling was that with baked goods, you may not know how much egg is in it, and what her tolerance level is, so it is risky. I can understand the logic either way, and have thought about asking to do a baked egg challenge, but I think we will just be egg-less for a while. Maybe try again in 2 years.

    We were out to dinner on vacation recently and her steak came with a sauce that had egg in it (I didn’t realize a sauce would be on it at all and I didn’t react fast enough before she was eating it). She reacted with a tummy ache, rash, feeling awful, flushed face and coughing. I was stressing, trying to figure out if she was going to need an Epi shot. She got better with Benadryl after a while… I didn’t sleep well that night!

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