|Nov 28, 2010|
Mom to Stanton - 2 year old with GERD, DGE and MPI
KML723 Cincinnati info I posted this under your question about our trip to Cincinnati Children's....but wanted to make sure you saw this! Ginger
Sorry for the delay! We've been out of town for Thanksgiving and I didn't have my computer. I've been able to read posts on my iphone, but for some reason can't respond unless I'm on my computer. Cincinnati was our 3rd GI to see. We started at South Alabama Children's and that GI ordered the upper GI, small bowel follow through, PH probe, scope, etc. He said my son's symptoms matched EE and after the scope he felt confident it was EE.....but when the tests returned negative it all became a guessing game with him.
The second GI we've been seeing is really nice and is at Oschner's in New Orleans. (We live in Missisippi on the gulf coast so both New Orleans and South Alabama are about an hour away). That GI again felt confident Stanton had EE and wanted to redo the scope. So we did and again it was negative. She did get us on elecare and referred us to an allergist at Ocshners. He only looked at the lab work from the GI's scope and said the numbers were all normal and he didn't really have anything to offer us! ugh....so - the GI at Ocshners said she wanted to refer Stanton to one of the 8 - 10 week feeding clinics. These clinics are all very behavioral in their approach - and my mama gut says the medical isn't resolved.
So - my developmental and regular pediatrician worked to get us referred to Cincinnati. We LOVED it! We were there for about 4 -5 hours and saw several different specialists and therapists and the GI. Cincinnati has over 25 pediatric GIs and they all have sub-specialities. Based on the medical records we sent, they matched us to the GI Dr. Pentiuk. His focus is getting to the root of the symptoms. What we got from Cincinnati was a true muli-disciplinary evaluation. Then those same 9 drs and therapists all sat a table and talked about Stanton. The GI then came in with an outline of what our next steps should be and specifically what to do. No other GI has done this for us. He said that Stanton has 4 seperate issues going on and layered on top of one another can be confusing as the digestive system is all connected and working together. He said our focus should be first GERD - which we feel is under control with our current meds. Our second focus should be correcting Stanton's obvious gastroparesis (no other gi ever mentioned this) so now we are trying a new med for that. Our third focus should be the skin prick allergy testing (they were surprised this had not been done). And finally - once all of the above is settled - work on Stanton's PTSD. He has experienced tons of trauma over these last 2 1/2 years.
The team approach in Cincinnati was also truly child centered. Child Life and play therapists were in the mix everywhere we went. Even the ER! I was throughly impressed.
They said we can travel back and forth and they can become my team - or they can consult with who we see locally - or we can just email and call with quetions along the way. so.....yes .....It was worth the trip!