Wednesday, March 18, 2009

Oh, Nuts.

Many of my readers are already aware of the fact that we recently got word that N. has some potentially severe food allergies, but I thought I'd post an update anyway, for posterity as much as anything. I try to keep it positive in what I record of my children's memories/lives, but this one seems like pretty much a life changer, so it will be interesting to look back in a year and see where we are on this.
N. has been struggling with a pretty severe rash for over a month now. It involves very itchy, tiny red bumps and blotchy patches all over her face, trunk, arms, and at times her scalp. It started on her face, lasted for a week there, and then spread to the rest of her body. The first visit to the pediatrician we were told it was probably viral. After a negative strep test at the next one a week later, we were sent home with instructions to treat it like a bad case of eczema, moisturize and treat with cortisone. Meanwhile, with my own history of food allergies, I was suspecting a milk allergy. We took her off milk and switched her to soy milk, but was not strictly limiting all dairy. Vomiting set in a few days later, seemingly triggered by some whipped cream she shared with O. Then I got more aggressive with switching to soy products: soy cheese, yogurt, etc.
We also had a blood test taken to test her for food allergies, to rule them out before proceeding to an allergist and/or dermatologist. She was cranky much of the time, and waking at least three times a night itching, and the rash was not abating much at all with the eczema treatment.
Then we got the results of the blood work, and you guessed it. Positive for peanuts, soy, eggs, milk, and wheat. Oh, and also dogs. The peanut score was practically off the charts, so immediately we got a prescription for an epi-pen. Next highest was of course, soy. Oh yeah. Eggs, wheat and milk were in the moderate range. Dogs ranked as severe as well, but as for now, Scout's not going anywhere.
So, it's been a tense week and a half. I'm trying not to do too much crazy making web surfing, because there are far too many unknowns, but will admit to some obsessive grocery trips looking for wheat and soy free products and some careful label reading. I already know how to do the dairy free thing, so that's not too hard. But wheat and soy are in EVERYTHING.
And the peanuts? It's frightening to think too hard about it. However, they are pretty clearly labeled now, and people are much more aware. I'm amazed at how calm I've managed to stay so far.
We saw the allergist today, and she confirmed that the blood tests often have false positives, so we are not confirming our worst fears of a life built around rice alone until she has further skin testing next week to compare results. The doctor also said that she was pretty sure that the wheat and egg were not major issues, since she did not have a reaction to her flu shot (egg based), and I have not yet taken her off the wheat completely, yet her symptoms are currently resolved.
Oh yes, we did finally get some relief last week during her 18 month well visit, when we got a stronger steroid cream, and a different antihistamine for her to take at night. (Zyrtec wasn't touching it, and Benadryl made her WIRED). Her skin has been completely clear (except for her scalp, which I can't bring myself to goop with Aquaphor, but even that is not so bad) for a couple of days now. And miracle of miracles, we have had nearly a WEEK of uninterrupted sleep, our first since her birth! God bless sedatives.
I am not looking forward to what I know is in store for us keeping N. safe and healthy given what we suspect with the peanut allergy, but I know we will figure it out. Our goal is to keep her as normal as possible, while also being smart. I had a breakdown over the weekend, panicking about whether or not it was safe to take her to a restaurant. But we went, and it turned out okay. We apparently won't be frequently Chik-Fil-A anymore, because they fry in peanut oil (who knew?), and ice cream places and the like will probably be out. But I also know there are plenty of people living with these allergies (more all the time) and I know I can be a good researcher on N's behalf.
I'm just so happy we have some answers. As scary as this news has been, it's at least knowledge I can work with, whereas before these results, I was running one hundred different possibilities through my mind at any given time.
We'll know more next week, and I'll update again then.


mep said...

N. could not ask for a better researcher than you, nor for better parents and grandparents to keep her safe, itch-free, and feeling "normal" as she grows up with these allergies.

I know you can handle this, though I wish you didn't have to.

I'm glad you have some answers.

CaraBee said...

Answers are good. I can't imagine how frustrating and scary this has been for you. As MEP said, I am confident that N is in good hands.

PS - Benadryl totally jacks Sophie up, too. Tylenol, on the other hand, knocks her right out.

Actchy said...

E..., I'm so sorry to hear about your new allergy lifestyle. My nephew discovered his peanut allergy right in my own apartment, when he ate a pickle that had sat astride his Daddy's PB&J. He was almost 2 at the time, and is now almost 4. He's allergic to peanuts, tree nuts, dogs, cats, seemed like he hit everything except shellfish (my sister joked that they planned to get him a pet shrimp.)

Sometimes, when I have nothing else to worry about, I'll sit and worry about my nephew and how scary it is for him to have these allergies. But you are so correct that allergy awareness is more and more prevalent. When my nephew was not yet 3, he'd approach a tray of appetizers and ask if "anybody had checked these for him" that same time, he turned down a chocolate from his (soon totally horrifed and apologetic) grandfather because he knew it was Hershey's and not safe.

In any event, I wanted to say I have some sense of your fears, and that soon the ajustment will be so complete that you will barely notice the difference. And your daughter will accept her allergies in stride, perhaps even taking my nephew's approach at Halloween, by yelling "Do these candies have peanuts in them?" instead of "Trick Or Treat."

Anonymous said...

Glad you got some answers about Nora even though they may not be ideal. Jason's mom was diagnosed with celiac disease (wheat/gluten allergy) 15 years ago and I did all of my dietetic research on this in college. I know you said that the wheat allergy was on the low scale (*Nora would also have pretty major GI discomfort with celiac), but if you need some info down the road I can try to help :)
Hang in there!