Tuesday, October 14, 2008

The beginning of the peanut allergy

I wrote this post because I've been meaning to and in response to this call for stories.

About 2 years ago, I learned that my oldest daughter is allergic to peanuts. This caught me completely off guard because she had eaten peanut butter around the age of 2 and had had no reaction that I saw. I'm not sure she ever ate much peanut butter, but I clearly recall when and how she was exposed to it (peanut butter spread on crackers given to her with my permission by a neighbor). I remember I was nervous but relieved when there was no reaction. I don't recall that she didn't like them.

I'm not sure how much peanut butter she ate later on. I think I probably bought Ritz bits peanut butter crackers, not sure if she ate them. I do remember her telling me she did not like peanut butter. She is a picky eater, I thought she was just being picky.

A month or two before she turned 6, I remember being at a playdate. The mom asked if Suzanne was allergic to peanut butter because she wanted to offer her a peanut butter chocolate chip cookie. I said she didn't like it, but she might eat it because of the chocolate chips. She ate a few bites of it. Within a half hour, she told me she felt sick. I figured she had picked up a bug and we left. She threw up a few times in the car. I don't remember much more about it - I don't think she vomited when we got home. She took it easy the rest of the day and I chalked it up to a bug.

A month or two after that, I bought some chocolate peanut butter at Whole Foods. I thought it would be great if my picky eater would eat peanut butter sandwiches. I offered her a baby-sized spoonful. She asked what it was, I told her to try it. She ate it. I asked her if she liked it, she said it was okay. I told her it was peanut butter, she got upset with me and told me I should have told her. I thought she was being a drama queen (yes, I know I'm a bad mom). She threw up. Then she got very conjested. A friend of mine's son had recently had a peanut allergy and I knew about giving Benedryl, so I gave her some (or maybe it was another antihistamine I had). I watched and waited and she threw up a few times over the course of a few hours but she seemed fine by bedtime and we put her to bed (that might have been dangerous). But, everything was fine.

I think I understood at this point that she had a peanut allergy. I talked about it at a park day and another mom overheard me and told me I should take her to an allergist and get an epi pen. I really didn't see the point, I mean, just don't eat peanuts, right? How hard is that? I even said this to my mom, I think. Well, my daughter's annual check-up was soon after so I mentioned the allergy to her pediatrician who gave me a referral to an allergist. I made the appointment and we had to wait a month or so. The allergist did a skin prick test and it came back positive for peanut - she gave me a prescription for an Epi pen and a prescription for a blood test. My daughter hates blood tests and I wondered what the point was - we knew she was allergic. I saw no point. I did fill the Epi pen prescription, but I blew off the blood test. At this point, I will fault the allergist. She did not give me any information about food allergies, not even a pamphlet from FAAN. I don't recall anything she did to educate me or to suggest that I should educate myself. It seemed very cut and dried - don't eat peanuts and peanut products.

A year later, I realized my Epi pen was about to expire, so I wanted to get a refill. I called the allergist's office and the nurse was a bit unfriendly - they always fill an Epi prescription, but she noted I had not been for a follow-up or gotten the blood test. I made an appointment and went to it. I got another blood test order and this time, we did it. My daughter handled it really well (my daughter is terrible in the doctor's office when it comes to anything that might lead to pain - it's bad). The blood test (RAST test) came back showing high levels for peanut (over 100), meaning it's unlikely she'll outgrow it. It also showed allergies to pistachios, cashews, almonds, and sesame. The allergist's office sent me the results but said I didn't need to come in. This was about a year ago. Again, no education on food allergies from the allergist.

So, up until that point, she avoided peanuts or peanut products. We still had peanut butter in the house, I still bought Reese's Peanut Butter cups to give out at Halloween. The allergy had very little impact on our life. The epi pen was in my purse, so it was with her most of the time (we homeschool).

Last February, my husband (phew!) bought her a cookie at a bakery where she has had cookies lots of times. Well, from what I gather, it was on a tray that also held peanut butter cookies. She ate half the cookie and then they came in found me (I was in a museum exhibit and the bakery was a vendor in the museum). She told me her tongue was itching her. She prepared her thigh for the epi pen. I told her it wasn't necessary and gave her Benedryl. We left the building. She started throwing up in the car (ziploc bags and used butter containers make great barf bags). She got very congested. I was very worried, but I had seen this before. She was very thirsty and kept drinking a lot of water and kept throwing that up into the bag.

We got home and she seemed okay. We put her down on the couch. She seemed sleepy so we let her rest. I had forgot that you should always put a towel under a sick child. She vomited. It was a mess, so I sent her up to shower. My husband took care of that while I cleaned up the couch. When she got out of the shower, he told her to get into her jammies and get ready for bed. I saw hives developing all over her body. I had hit my watch and wait threshhold. This was a new symptom she had not had last time. Strangely enough, I had just had my first experience with hives the week before when I woke up with them all over. I had called the nurse hotline for our insurance and they had told me to go to the ER since I had hives on my face (and facial swelling), because of the possibility that my throat could close up. So, I knew a little something about hives.

Off I sent DD to the ER with DH (she picked him over me, I wonder why). I kept listening for wheezing but didn't hear any and she did not seem to be having trouble breathing. I did not give the epi because after reading the package insert, I was a bit nervous about it and I was under the wrong impression that it was really only needed if there were breathing difficulties. I was clueless about anaphylactic shock - though from what I know now, I don't think she was in it anyway. I did give the Epi Pen to DH in case. Now I have been told by the allergist that once two systems are effected, she should have the Epi. Since her previous reactions had not required a trip to the ER, I was really trying to avoid that and I know once you use the Epi, you are off to the ER. My reasoning may be flawed, but I did have reasons for the actions we took (or failed to take).

They got to the hospital and it sounded like she got a liquid steroid. They kept her for a few hours for observation (to make sure the reaction doesn't come back aka biphasic). She came home and that was that. I don't really know why I didn't look more into the issue except that the next week she was in the hospital for stitches for a serious laceration she got while playing in the front yard. I think I was just shell-shocked.

I do have some friends who are knowledgeable about allergies and it was at this point that I started asking for more information. I learned that we should not be buying foods from the bakery, the risk of cross-contamination is too great. I learned we should not be going to ice cream parlors, those scoops are used in all different flavors, they aren't cleaned and it's possible the ice cream has bits of peanuts from being scooped with a scooper used on a peanut flavor. One friend also strongly suggested I find an allergist who made food allergy education a priority and derided allergists who merely give an Epi pen prescription and send you on your way.

I'm still not sure why I didn't do more research but maybe that was all I could handle. Maybe because her allergies were so limited and obvious - peanuts are not like milk or wheat, they are pretty obvious and easy to avoid, was my thinking. My husband has a mild tree nut allergy and he doesn't have much trouble avoiding those - it just never seemed like a big deal.

After my daughter had a trip to the stables for a horse grooming and riding activity and came back with severe facial swelling and red eyes, I decided it was time for another trip to the allergist and to start learning more about allergies. Our appointment was two-fold, it was a rather delayed follow-up to her February reaction and to get testing for environmental allergens. This time, I was a bit more prepared with questions. There is a new doctor in the practice and she answered the questions I asked and she did give me a FAAN pamphlet. We had some testing done and then followed-up with more tests -- I had a whole list of questions for the follow-up visit. This was an important lesson I learned from the yahoo group TerrificKidsWithFoodAllergies -- get your questions all set and ready so you can ask the allergist at the appointment. I think I even got some suggestions for questions I should ask.

I am now vascilating between freaking out all the time to thinking it's not that big a deal. For a long time I was assuming that since her last reactions have been pretty slow moving and have not involved breathing trouble that we would have a lot of warning. Now I've learned that past reactions are not predictors of future reactions. That scares me. So now she has a medical alert bracelet and carries and epi pen and I'm informing the adults who are with her whenever I am not.

I am trying to figure out how to be reasonable in my notification to others about the allergies without sounding like a whiner or being demanding. It is becoming obvious to me that even if you tell people of the allergy, you can not be certain that they will know about cross-contamination issues. I know I wasn't aware, even when I knew I had a kid with allergies and I certainly was even less aware before I did.

So now, I'm going through an emotional process of mourning the loss of things like going to an ice cream parlor and bakery and worrying about going to restaurants. But I also realize how lucky we have been and how a food allergy is better than a lot of conditions or diseases a child could have. I've also been spared the worry and concern of having a toddler with severe food allergies. My DD is old enough to advocate for herself and though it saddens me, it also makes me proud to see her taking responsibility by carrying her Epi Pen and declining food that she knows (or even suspects) is not safe for her to eat. She actually turned down pieces of a Hershey bar that was offered to her when she was at a recent social event (which is safe - I checked the package) and later told me she knows she can't eat food that's not from home.


Anonymous said...

Good for you doing lots of research yourself. My son has a peanut allergy and we are currently on our 3rd allergist and I finally feel like I have someone who totally gets the severity of it. Our last allergist actually gave my son PB to show me he was not allergic. They had to call 911 a few minutes later!!

I'm not sure if some doctors sleep through the food allergy section of their training or what. I think they mean well but just don't understand. I've learned I am the best advocate for my son. The doctor is just a support person that helps us in the peanut allergy journey.

I know, I still mourn all the things we can't eat or have in the house because of my son's PA. I guess that's just part of it!!

We recently discovered Sunbutter and it tastes just like PB but is made with sunflower seeds. It's awesome and really satisfies that PB craving hubby and I get from time to time.


Marjorie said...

Hi Robyn,
Thanks for your comment. I was told to be aware that allergists may not focus on food allergies and I think that is what I encountered. I must say that the first allergist left the practice (I don't know why).

The new allergist has given my information on FAAN and a printout after every visit that includes personalized information as well as boilerplate that includes a couple of websites on food allergies. This is definitely better than the first allergist who gave me the epi script and basically agreed that my daughter simply not eat peanuts. Though I have to say, we were lucky that that approach worked for us for 18 months.