My cousin's two-year-old son has a disease called Eosinophilic Esophagitis, which makes him literally allergic to food. As of right now, he can eat something like 4 foods safely, and mostly lives off an incredibly expensive, nasty tasting formula. She's trying to raise awareness of his disease. It's so unknown, even among doctors, that it took months just to get a diagnosis, and he was labeled failure to thrive as a baby. Please take a moment to learn a little bit about their situation, and to help spread the word so other families won't have to go through months of worry and not knowing why their child is constantly sick and can't eat or put on weight.
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I feel for your cousin, my daughter who is almost 11 months old was diagnosed with EE in May. We are thankfully still on a semi-normal diet, but had surgery yesterday to determine how affective the PPI medication is & will learn her new diet next week when we meet with her pediatric allergist. My daughter is a rare case as it is very uncommon to be diagnosed at such a young age, but our doctor was very proactive.
There are a lot of good resources online and active groups on FB if your cousin needs any information or wants to connect with other EE moms, I can totally PM you my information. It's so uncommon that finding someone who is able to understand is a gift!
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@LuLu Mom: He was diagnosed a while ago (close to when your daughter was, I think), so she's had some time to find a support group and that sort of thing. I know she really relies on them sometimes to help her get through it. The only reason she was able to get a diagnosis so early was because she fought tooth and nail to get doctors to take her seriously. Thanks for the offer of support; if she needs it I may send her your way!
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Wow, I have never heard of it but I"m glad doctors are taking it seriously and are finding ways for them to live in remission.
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Ah, I know it well. It's not a picnic, but luckily most kids I've taken care of grow out of it fairly early on. And thank goodness for all the elemental formulas that have been created. Without them, these kids would be in dire straits.
Anbanan was worried at one point about this, I think.
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Wow i had no idea this existed! This looks so hard
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@blackbird: That's the problem! Even most doctors don't know about it.
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@Mrs. Jacks: when you say they grow out of it, do you mean with continuous use of medicine or completely? I feel like I'm giving my daughter so much medication right now, but so far they believe it is helping eliminating the cells and cure the groves in her esophagus. Is it a lifetime of medicine or could she eventually eliminate the need? (just in general that you've seen, I know that every case is different!)
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@LuLu Mom: some people have lifelong issues, but that's usually the people that are diagnosed older. I just polled my colleagues and we feel that most of these kids grow out of it... And not in a prolonged timeframe. Treatments like swallowed flovent or systemic corticosteroids do a great job of calming the inflammation. If you look on the CHOP or Boston Children's websites, there are whole protocols around reintroducing patch test and skin test positive foods. I hope this helps. With proper treatment, good results are possible!
You know this isn't medical advice, just some thoughts on EE.
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@Mrs. Jacks: thank you! She's on a PPI and swallowing budesonide, and we had a scope on Friday that they said looked better than the one she had in May (no dietary changes) so I'm hoping we are looking at it going away and it wont' be a lifelong issue for her. She loves food and I just can't imagine having to taking it away from her and keeping her on formula. Fingers crossed we won't have to do that.
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@LuLu Mom: what did she patch and scratch test positive to?
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@Mrs. Jacks: eggs, nuts, and possibly milk. They weren't sure if the nuts ran into the milk test.
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@LuLu Mom: @Mrs. Jacks: I hate to be a downer, but that runs completely contrary to everything that my cousin has been told about her son. She has been told repeatedly, by three different doctors who specialize in eosinophilic disorders, that there is NO chance he will grow out of this. EOE is not like typical allergies. Obviously I am in no way an expert, but that was one of the things she was hoping for, so she made sure to ask every doctor she saw to confirm that they agreed on that point.
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@Torchwood: I'm not saying that it is for sure for everyone, I do know some children end up battling for life. But my daughter's EE is already getting better (with dietary adjustments) we just had another scope and they said her cell count had significantly decreased. We are still on Allimentum formula, but we *should* fingers cross be able to switch her to Soy Milk when she turns one. I think it all depends on this severity and amount of the child's triggers, as there are different extremities of EE but there is some hope there.
We have a handful of pediatric specialists we see regularly and they have always been hopeful that there is a chance to control this and possibly grow up of it with age (especially when diagnosed so young.)
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