Hi Cassidy!
Thanks so much for your email! I know the mom I'm dealing with can really
relate to parts of what you said. Hopefully, this info will make it so that
she only has to see 30 docs instead of 35! The amount of conflicting (and
sometimes just plain unsound!) advice that she's gotten is crazy. I know
this hasn't come up in her discussions w/ docs, and she's all about doing
research and bringing up anything that's a possibility. She just wants to
see her little guy stop suffering.
Thanks again! I will keep the list posted after her appt at the Miss. BFing
clinic tomorrow.
Amy
On Wed, Feb 24, 2010 at 2:32 PM, Cassidy Hotz <[log in to unmask]>wrote:
> Hi,
>
> I am a new voice here. I'm Cassidy, an LLLL in Fayetteville, AR. I am
> getting ready to head to Las Vegas next week for CLC course. In July I am
> taking the IBCLC exam. I've been a Leader for 5 years and couldn't be more
> excited about lactation! Since I am new, I have avoided posting thus far,
> preferring to read and absorb as much wisdom as possible. I do think that I
> might have some useful info for you on this one, though.
>
> My son has a rare GI disorder called Eosinophilic Esophagitis. You can find
> info about it at www.apfed.org. Eosinophilic GI Disorders (EGID) cause a
> host of trouble, including many of the symptoms that the baby you mention
> seems to have. Reflux, swallowing trouble, food allergy symptoms, failure to
> thrive, etc can all be traced to EGID activity. My son was almost 3 at
> diagnosis, though his first symptoms were at 2 weeks old, and by that time
> he had developed secondary complications (neuro-developmental delays,
> behavioral trouble, physical and learning delays) due to the pain and
> incapaciting symptoms of EE. It literally took us taking him to 35 doctors
> of various stripes (including specialists at the local Children's Hospital)
> before we threw in the towel. I knew in my gut that it was EE (after many
> late nights researching on the internet), so we flew him cross-country to
> The Children's Hospital of Philadelphia's Center for Pediatric Eosinophilic
> Disorders.
>
> If the baby has had an EGD with biopsy, then his mom should check that his
> biopsies were checked for eosinophils. In the esophagus, any number more
> than 25 is indicative of EE. For other parts of the Gi tract, the accpetable
> levels of eosinophils vary. Some pathologists cannot accurately read eos
> in biopsies, so if he has been biopsied and they continue to be unable to
> find answers, a second opinion on those biopsies might be a good idea.
>
> If it turns out to be an EGID, then he may or may not tolerate
> breastfeeding. I've known kids on both sides. He may tolerate Elecare,
> Neocate, or he may have to have his formula imported (there is an elemental
> in Germany that is different than either of the others; I knew of one kid
> who could only tolerate the German version), or have his formula custom
> mixed from modules.
> My 6 year old is newly weaned from formula (after 3 years of nursing and
> three years of formula), eating 35 foods, and developmentally/behaviorally
> on cue. He is also doing well in school. :)
>
> I really hope they can figure that little guy out soon. Let me know if you
> (or anyone) needs more info.
> Cassidy
> LLLL in Fayetteville, AR, USA
>
>
>
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