Posted By Posting
Aug 12, 2008
Mathias Johann - 12/14/05 - GERD, Hypotonia, Sensory Processing Disorder, Dyspraxia; Stopped silently aspirating at 20 months :)
First partial seizure on 7/2; First Endoscopy on 7/16; results: bile reflux gastritis.
New Meds: Zegerid & Carafate
Allergic to dairy
EGID/EE question
Things have been pretty nutty around here recently - and not always in a good way. We found out some additional information from Mathias' endoscopy - I am not sure how this was missed in the first place. He has elevated levels of eosinophils in his stomach only, in addition to the bile reflux gastritis. His pedi has never seen either thing before so he suggested we go outside of TX for a second opinion. Has anyone had any experiences with Cincinnati, Denver or Philadelphia's GI departments? I haven't been able to keep up recently, so I hope everyone is doing well and enjoying the last bits of summer. Libby
Aug 12, 2008
maia m - GERD. Nissen Fundoplication w/hiatal hernia repair.
Mom to
Son (10) GERD(aspiration pneumonias, apnea, tracheomalacia), Food allergy, Asthma
Daughter (6) GERD, Heart Murmur, Food Allergy, Asthma, Mold allergy
You might want to see which one you could get into first! :) Denver (Nat'l Jewish) and Cinci are both very highly recommended for Eos disorders.
Aug 12, 2008
baby quinn's mommy
Mom to a 3 year old baby girl with severe reflux: g-tube, nissen fundoplication. dx: RAD, failure to thrive, DGE, epilepsy, sleep apnea, paraesohphogeal hernia, high lactic acid there's more "unknown disease"... Hospitalized 12 times, PT graduate! ST graduate! OT graduate! Current Meds: singulair, zopeonex, pulmicort, reglan, Keppra, Trileptal, vitamin B6, Veramyst. Current weight: 34 lb. Current height: 39". g-tube dependent, oxygen 1-2LpM all day and night PIC: Ms. Quinn
I always hear good good news about Cinci!!!!! That would be my first choice.
Aug 13, 2008
Patti, mommy to:
Max (3/04), reflux, EE, sinus surgery, asthma Lucy (6/07), reflux
EE Treatment Centers
Sorry to hear that you are dealing with possible EGID issues. Our son has EE and we receive treatment at CHOP (Children's Hosp of Phila). We have been very satisfied with the care we receive. The component I like the best about CHOP is the continuity of care between departments. Nutrition, Allergy and GI all work together to form a plan of care. CHOP does tend to specialize in EE, though. In talking with other parents dealing with EGID's, Cinci has some more experience with EG - which sounds more like what your son may have if eosinophils were only found in the stomach region. Cinci's wait does tend to be several months (up to 6) longer than CHOP's. You will also need to submit an entire packet of materials, including biopsy slides to both institutions before you can be seen. Good luck! Getting a diagnosis is always the hard part, I felt. Now that we know what we are dealing with, things have improved so much. - Patti
Check with your
doctor first!