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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