Saturday, January 24, 2009

Ella's Story

From time to time, people ask me to tell them the story of how we first learned of Ella's allergies. So I feel like it is worth retelling if you have never heard it before.

Ella was a breastfed baby. But even as an infant she had horrible eczema. To be honest, I never thought much about it because her doctor did not seemed too concerned. One time I let her have a meringue cookie and her mouth broke out into a red rash. At that point the doctor suggested that I wait to give her eggs until after she turned two.

She was a good eater, a great eater. She would eat EVERYTHING. All of the normal things kids eat like bread, pasta, crackers, edamame, bagels, and on and on. Her eczema would flare up from time to time but I just thought that she had dry skin. When she turned 2 we began to introduce nuts into her diet. She had peanut butter, granola, pesto with pine nuts, and almonds. There was no reaction that we could see so I thought, "Phew! She seems to be allergy-free!" And then one day we were at the Grove and I was snacking on some pistachios. Ella asked if she could try one so I gave her a small piece, not wanting her to choke. As soon as she put it into her mouth she spat it out. She began screaming as if I had fed her a jalapeno. Within seconds, her mouth was covered in hives. And then almost instantly she began to develop hives all over her neck and face. By the time I got to the drug store to buy some Benedryl, her eyes were nearly swollen shut. I was nearly having a heart attack as I frantically called her doctor and Gabe. As the rash got worse and worse, I decided that she had to go to the ER. Thank God we were right next to Cedars. Within a minute or so of our arrival, they had her hooked up to an IV and were giving her steroids and more antihistamine. She was in the hospital for about 6 hours. Thankfully, I got her there in time. If another 5 or 10 minutes had passed I am quite certain that she would have died.

About two weeks later we met with an allergist who tested Ella to confirm her pistachio allergy. They consider you to be highly allergic to something if your blood tests a 2% reaction. Ella is 86% allergic. I am not a scientist or a doctor, but those numbers are not good. Her doctor has told us that she will never be able to eat them, touch them, or get anywhere near them. Her allergy is one of most extreme Dr. Baum's office has seen, regarding pistachios.

While we were testing, I had them check to see if she was allergic to anything else. I was beyond shocked when we got the results back. As it turns out she is HIGHLY allergic to wheat, egg whites, soy, peanuts, almonds, sesame, hazelnuts, and a bunch of other nuts and seeds that I am forgetting. She is MODERATELY allergic to egg yolks and pecans. So basically, no nuts. Ever or in any form. The good news is that she can have eggs if they are baked above 350 degrees. The protein that she is allergic to is somehow altered in the baking process. Again, not a scientist but I am a chef so I was happy to find out that my baking days would not be ending. But finally I understood why her eczema was so bad.

We refused to believe that wheat was a problem, in spite of the doctor's strong suggestion to remove it from her diet. She advised us to proceed with caution but to pull all wheat from her diet if we ever noticed a reaction. So for a little over a year, Ella ate wheat. We gave it to her in moderation, along with soy. We were away on vacation and were pretty much letting her eat "whatever" because it was "easier" for us. By the time we got home, her arms and shoulders were covered in a poison ivy-like rash. She was going nuts scratching at it. Welts formed, as she cried. We covered her in Cortaid and dosed her with Benedryl. Finally, it occurred to me that maybe it was her diet. Pizza, pasta, bagels, crackers, bread, more pasta. It all became clear that we had to pull the wheat. So we did and within 2 days, her rash had cleared. That was in June and she has not had any wheat since. She is like a new person. It has not been easy. I have been teaching myself all new ways to cook wheat-free. And I started this blog, partly to share info with friends and family, partly to help others in our situation, and mostly to have a cathartic release. This is a stressful way to live. It sucks. But the silver lining is that maybe now I can help others who might be looking for support. A whole new world has opened up. We have made friends that we would not have made, people from all over the country.

Life goes on and we are certainly trying to make the best of it. I am constantly asking myself, "Why did this happen? What could I have done to prevent this?" There are no answers. From what I have been told no one in our families has allergies like this. The only link to me is my adult onset allergy to shellfish, but her doctor does not think there is any relation. There is a slight chance that Ella may become less allergic, as she gets older. So we now test her once a year. Her soy allergy is diminishing and she is now no longer allergic to walnuts! So I am comfortable with the direction we are moving in.

But for now, the fight continues. And so does this blog...

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