We did get 1 big answer today. Allie's corn allergy is not the reason she doesn't eat orally. I kind of knew this but just hearing these words come from Dr. Edmonson was somewhat settling. We all knew that removing corn from Allie's diet would not miraculously make her eat food - that is too far fetched. However, we did think we would at least see a slight increase in her oral intake - but we didn't. What we have seen since removing corn from her diet is her eating fluctuates more than before. On a good day, Allie might eat a hog dog for lunch but then not eat anything significant for the next 2-3 days.
Dr. Edmonson could not tell us how Allie's severe corn allergy is affecting her body, however he did say that it's most likely not affecting just one organ. He said that it's more likely her corn allergy is affecting her body as a whole and we could see the effect in one or all of these ways:
1) growth
2) development
3) speech
4) other activities
So basically, he's saying her growth could be stunted because of her corn allergy, she could have developmental and speech delays because of her corn allergy. Hmm...seems strange to me but who knows. Since nobody really knows how this allergy is affecting her, Dr. Edmonson would like us to keep her corn & gluten free until the end of April and see if anything with her changes (eating, growth spurt, development, speech or other activities). If nothing changes, we can start feeding her corn products again. He said that if being corn free for that long shows no changes, then there is no good reason to keep her corn free.
Dr. Edmonson said it's such a fine line right now as to what is better for her - letting her eat whatever she wants whenever she wants or keeping her corn free. He said that no doubt her allergic reaction was severe but our main problem is her oral eating so according to him, if Allie wants a specific food item and it has a little corn in it, we can let her have it. However we need to keep her corn free as much as possible.
I asked Dr. Edmonson about re-testing Allie for her corn allergy and he said he didn't recommend it. Based upon her reaction the first time, he said he has no doubt it was a true reaction. In addition, he does not want to test her for other food allergies. He feels that the testing we did already is enough and he doesn't feel there is any need to do further testing. We will follow his advice and keep her away from that doctors office for a while :-)
Allie's weight hasn't changed since the end of November. She is still 24.6 pounds. Her height has also stayed the same for the past 2 months - still 33 inches long. She has once again fallen farther down the chart for her weight and she's even farther off the chart for her height. Is this due to the corn allergy??? I doubt it. We know Allie isn't getting enough calories right now and we are working on bumping up her calorie intake.
Our goal - keep Allie gluten & corn free and see if she grows. Our other goal - increase her calories and see if she gains weight. Let's say we do both and she grows.....which one is causing her to grow. I'm stuck right now because we are continuing to make two big changes (keeping her corn free & adding calories) and both of those things have the same ending goal. So what do we do? Allie needs the extra calories for brain development so that takes the cake. I hate making too many changes at one time because then you never know what is actually the true reason things are changing. We had this same issue with her going corn free and taking her off the backpack during the day. Her behavior got slightly better but we don't know if it's cause she's corn free or if it's because she no longer has to wear her backpack and pump during the day - which she absolutely hated. (if you remember I video taped her tantrum because she didn't want to wear her pump). Anyway, there is no doubt about adding extra calories to her tube feeds - that's a must but I'm still sitting on the fence about the corn. Do I let her eat corn and see if she grows with the extra calorie supplements or do I keep her corn free and then not know why she is growing.....hmmmmm...decisions.
If you have thoughts or recommendations, please weigh in - my eyes and ears are always open. At least today I found out her corn allergy is not what's causing her eating issues - that is one step in the right direction!! So - what is causing Allie to not eat orally???? The search continues....................
Here are a couple pictures of the girls dressed as a fire fighter. Congrats Matt on becoming a volunteer fire fighter again!!!
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| Allie trying on daddy's hat - it's so heavy she had to hold it |
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| Chloe loving the hat |
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| Chloe all dressed up and not able to move |
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| Allie a little overwhelmed in the gear |
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| Yes - Allie is still in there! |
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| Daddy & his girls. |
Jodi... I didn't even finish reading your post and I have so many things to say... For sure, i need to comment on this: "it's such a fine line right now as to what is better for her - letting her eat whatever she wants whenever she wants or keeping her corn free." That is exactly where I am at right now with Mady.
ReplyDeleteIf you have time one of these nights, I would like to call you. Just for support for both of us. I think we would have a lot to talk about. :)
Jodi I am in shock right now. Madison and Allie are the size, exactly. But they are over a year apart in age. I always knew you had a big battle waging, but I guess I never "got it" until today. Madison was at the doctor yesterday and she is 24 lbs 5 oz and 33 inches tall. She will be one on Friday.
ReplyDeletePraying for you guys to get something figured out!