I find it very fitting that this week is Food Allergy Awareness Week, since our follow-up appointment with the allergist was yesterday. This was to be the appointment at which we'd find out for sure if the Pumpkin was allergic to peanuts and tree nuts. And the verdict is indeed in: She is allergic to peanuts, but does not appear to be allergic to any tree nuts.
A year ago when the Pumpkin had just turned two (and had enough verbal skills to tell us if something was feeling funny), we let the Pumpkin try her first bit of peanut butter on a cracker. Although Londo and I had some difference of opinion on whether or not there even was a reaction, we figured better safe than sorry. We reported a possible reaction to our pediatrician's office, got a referral to see an allergist, and made an appointment with the allergist. Although the nurse and the appointment were very frustrating, I did like the doctor and appreciated what he had to say.
He recommended that we get the Pumpkin a blood test to check for allergies to peanuts and tree nuts. Although he noted that the blood test wasn't as accurate as the skin test, the skin test would require that the Pumpkin lie on her stomach for at least 15 minutes. Holding still for 15 minutes even in front of movie or show? Impossible for my 2 year old! Thus the blood draw and negative results that the doctor said could likely be a false negative. He recommended coming back into the office after she turned 3 and could possibly hold still for the skin test.
So yesterday morning, we went in for the skin test. We prepped her as best as we could. I was ready for a long wait, considering how long the previous visits took us (over an hour one time and about 2 hours another time). We brought toys and movies, plus special prizes if she held still and did what the doctor asked*. Even though our appointment was at 9:15 and the office opened at 9, we still waited an hour to see the doctor. After a brief refresher with the doctor, including giving him the spoonful of peanut butter we brought in with us, we had the Pumpkin take off her shirt and lie down across Londo's lap. The nurses put extracts and even a bit of real peanut butter on her back to see if there was a reaction.
Sounds fine, right? WRONG!
Forget about what the reaction was on her back for a moment. Instead, let me explain to you the reaction of my highly sensitive, active, emotional and spirited girl was. Do I need to even explain? I think this says it all: She freaked the EFF OUT! For the entire 15 minutes we forced her to lie as still as possible!
The first 5 minutes of that was wailing and shrieking such that she was unable to even realize what was going on. Londo had to hold her down across his lap, and I had to crouch by her face and hold her arms/hands to keep her from reaching her back while trying to soothe and distract her. Although the sobbing and wailing continued, we were able to distract a little with Cinderella on the TV and her new book I put under her nose.
So that sucked. It also sucked to watch the red marks appear and the two welts for the peanut extract and peanut butter grow. And then? The nurse had to outline the marks with a marker on her back. Her sensitive, itchy, don't-touch-it! back. Sigh. But that was over relatively quickly.
But it was worth it. We now know as sure as we can know that she is allergic to peanuts. She does not appear to be allergic to tree nuts, but we will be careful introducing them. The doctor said that we should still just tell people that she is allergic to nuts, because it's easier for people to just remove nuts and keep all nuts away from her. Also, I know that many nuts are processed and packaged in the same facility as peanuts. The doctor said there is a 10% contamination rate in facilities that also have peanuts and peanut products, so we still have to check every label for that as well as the ingredients. But we don't have to be quite as careful as we've been over the past year, now that she is very likely fine with other nuts. We do know that the allergy test could appear negative and she still could have a reaction (even a severe one) to any nuts, so we will be watchful and careful with all of them. The doctor also said that she has a 20% chance of outgrowing the allergy, so we will retest her when she's 6 and have annual checkups with him until then.
I've spent time over the last year reading blogs by parents who have kids with food allergies. I've found lists of "safe" foods and "safe" manufacturers**. We've been reading packages carefully, on everything since it can surprisingly be in things you don't expect or processed in the same facility or even on the same machine! I've found websites that sell candies and foods made in nut-free facilities, where I ordered the Pumpkin chocolates from a couple places for Christmas and Easter, as well as a cake mix for her birthday and chocolate chips for us to make cookies. I plan to list links to these things in another blog post, both for those who are interested and to make it easy for me to find all the information I have gathered at a glance. We don't bring her to Five Guys or Chick-Fil-A (two of my fav restaurants!) because they cook in peanut oil. We are figuring out other restaurants and places to avoid as well.
We have learned how to use the epi-pen, and we have a box at our house and one at school. Londo has been great about bringing one shot with us when we go out places (something I am working on remembering). I'm now looking into medical alert bracelets. The Pumpkin's current pre-school is a nut-free school, and as we look into new schools and daycares, we will be sure to find one that is nut free.
At this age, she still doesn't truly get why she can't have something that other kids/people have. So it will continue to be important to not have anything with peanuts around her at all. That means continuing to ask friends and family not to have or even offer their own kids PB&J sandwiches, because she inevitably says, "I want peanut butter!" She just does not understand the consequences at this age.
Our lives are not going to be exactly as we envisioned, with PB&J sandwiches at the beach (one of my fav beach eats) or sharing my love of Tagalongs with her. But it also shouldn't be as hard as this past year was, considering we can loosen restrictions about the tree nuts and considering that she will understand more and more as she gets older. This is just something else to live with, figuring it out as we go along.
But boy, I'm exhausted just writing about it all, let alone living it! Let the constant vigilance continue!
*When I told her about the special prize I had for her, she said, "I don't want a special prize! I want a book!" Ah, the contrariness of Three. BUT! I said to her, "Well, guess what your special prize is?" She looked at me and said questioningly, "A book?" And I responded, "YES! It's a book!" Her face lit up, and we laughed! I also added, "You can even get two books if you hold still the WHOLE time they are doing the test!" I doubted that would truly happen, but was totally planning to give her both books anyway.
**Did you know that not all manufacturers will include that the food is processed in a facility that also processes nuts? I find that highly irresponsible in this day and age!