Thursday, September 17, 2009

So long, Elecare...hello, butter!

When Asher was diagnosed with Eosinophilic Gastroenteritis, an allergy disorder, 3 1/2 years ago, this is what I longed to see. To have some sort of crystal ball so I'd know just what food allergies he would "outgrow."

Throughout Asher's decline, diagnosis and medical care, we've been tremendously lucky. We've been blessed with smart and caring doctors in Boston and Phoenix. He loved his vanilla Elecare, a formula made of amino acids, the building blocks of all food. While some kids have to get feeding tubes to tolerate the stuff because it doesn't taste that good, Asher would drink cups of it (which was good because he had to drink 6-7 cups a day to avoid getting a feeding tube).

But, his Elecare was expensive ($600 a month). I'll spare you the tirade of trying to hold insurance companies accountable when they broke an Arizona law that mandated that insurance companies pay 75% of the price of formula for kids with Asher's disorder (I'm looking squarely at you, Arizona Blue Cross/Blue Shield).

Last year, about this time, we did a soy trial, and Asher passed, which means he didn't throw up, get hives, have diarrhea or complain about an upset stomach. This meant that provided Asher kept up with his growth, we could drop the Elecare, which he has done (way to grow, Asher!).

But, Elecare has been my crutch. When Asher wasn't gaining weight and refused to eat what I gave him and had such a limited diet, I felt like a better mom when I gave Asher the caloric-dense beverage. We haven't used it for 9 months now, and I'm finding that I'm just now ready to give it away. (Anyone want free Elecare?)

For a couple months, I've been feeling like it was time to do the last food trial I'm comfortable not doing in a doctor's office--dairy. (For the record, Asher's reactions to peanuts and eggs are so volatile and his lab work predicts that he probably won't outgrow these allergies, so I'm very reluctant to try those at home or, er, ever.)

This past week, I made Kirstin's delicious sugar cookies, but I used real butter instead of our usual Smart Balance substitute (oh my goodness! I forgot how delicious butter-based cookies are!). Every day, Asher gets 2 sugar cookies to see if there's a threshold for the reaction.

And, so far, so good! He doesn't show any signs of gastrointestinal distress, which is always my primary concern and will stop a food trial. He does get a slight red rash around his mouth, but once I wash his face, it goes away. And, if that's all that happens, I'm comfortable with calling the trial a success in another week.

I like to think this disorder is behind us, but I've been on enough support group listserves to know that this may not be the case. Still, I remember as a member of those listserves and as a more participant of our local EOS support group, wishing that I heard more success stories.
I suspect that there are more like mine, but as our kids get better, we forget walking up and down store isles in tears, wondering what we could make for dinner, or missing trips because packing all that food was just too hard, or sitting at the computer, crying as we read other families sharing their stories.
We just get busy, and truthfully, I feel a little guilty when I think of the families who started this journey around the time we did. We met some wonderful, generous people (you can see them and Asher in the video below, which was done as a fundraiser for this great site). It's hard to think about how as they lost foods, we gained more. But, I've been thinking that as someone with a success story, I owe it to these people to share our story.


Carrie said...

A dear friend of mine's son is on Elecare. I couldn't believe how expensive it was/is! What a huge milestone for your family :)

Carrie said...

Um ... did you like my use of grammar in that last comment. Have no idea if that's "legal" ... but I haven't taught English in over 2 years so my brain must be melting!!

Kate said...

I often wonder about how Asher is doing. This is great news!!

Jessica said...

I'm so happy to hear this! What great news. I hope that he enjoys his butter cookies as much as you do :)

Tim and Jennifer said...

I had no idea! I'm glad he is getting better.

SLP said...

You are a great MOM! Knowing how much you enjoy food, I think that makes Asher's illness even harder:)

That said, when I read your line about the sugar cookies the scene from Julie & Julia came to mind where Julie has this long ode to BUTTER - how can we live without it. I am glad to know that Asher can now have piece of world with butter, for that truly is a gift!

Much love,

Heather said...

Hooray for Asher! Hip hip hooray for YOU!!!! You are such a good Mama. What better butter introduction than sugar cookies?!

Sheila said...


Brooke Peterson said...

Every new food step forward is a success. It is amazing how much we take for granted when we can eat whatever we want without thinking. I am so happy for you and Asher.

Bee said...

Wow, Emily, I had no idea that Asher dealt with this. It sounds like a difficult thing to deal with with your child. I hope he continues to do well with the new foods, especially butter! After watching Julie and Julia I remembered how awesome butter is.

jaredandmatisse said...

You are such a fantastic Mom. I am so happy you have one less food to ask about at restaurants. You are moving up in the world. Bring on the butter

Nuestra Familia said...

That is a really cool video. So excited about this huge milestone for Asher. Big hug to your family. Hope to see you soon.
Cooler weather=Zoo!!

Celeste's mom said...

Hello, I found your blog when "google-ing" for info on Elecare and BCBS. My daughter also has EE and we have BCBS insurance and live in AZ (and LDS). Last time I talked to them they still don't cover it. Well, I wanted to ask you how old is your son now and how much progress has he made regarding the foods that caused a reaction before. So far my daughter has outgrown only two foods out of like 20 and I find it so hard to feed her. Anyways, please email me to know about your story.