The Rumination Syndrome doctor at Children's Memorial in Chicago is Dr. Chogli. He is excellent. Talk to the nurse and insist (nicely) that she fit you in immediately because the problem has gone undiagnosed and misdiagnosed for x period of time. When I explained that he fit me in within 2 days.
He will then refer to one of the speech therapists that is trained in the diaphragmatic breathing technique. You cannot get to the speech therapist without a referral from a doctor for this specific breathing technique.
Thanks so much. We've been chasing this for 7 years now. Same thing--started with a virus, never stopped. Finally diagnosed at Children's Hosp in Milwaukee but they've been working to find us someone closer to home to help. I'll call tomorrow and keep my fingers crossed.
ReplyDeleteHi! My daughter was just diagnosed with Rumination Syndrome a few weeks ago. We are from central Il, so she has been getting treated at Children's Hospital of Il, Peoria. She also has effortless regurgitation, only it's been going on since she was 1 and started on solids...she's now 5. They want us to start biofeedback therapy (as soon as the referral comes back) but I'm just kind of skeptical with her being so young. I have been thinking of getting a second opinion from Childrens Memorial. I'm just a frustrated mom who doesn't want her daughter to go to kindergarten with a garbage can under her desk...
ReplyDeleteMom of 2: we've gotten the appointment with the speech therapist so will keep our fingers crossed and keep you posted
ReplyDeleteKari: My daughter did a ton of biofeedback at Mayo--never with food and it didn't help her at all. It also wasn't covered by BCBS and even Mayo says that it's a very long term treatment and not a sole treatment. It might be worth a call to either Chogli at Children's or DiLorenzo at Columbus Children's to see if they can refer a speech therapist in Peoria who is familiar with this. Perhaps your diagnosing physician would be willing to do the legwork?
Thank you! Thank you! My daughter who is 17, started throwing up in January 2013 and had to have her gallbladder out, but the throwing up didn't stop. I researched her symptoms and came across your blog. We had gone through the same stuff you had, with all of the tests, etc. Once the final physical test (endoscope) had been performed which showed nothing wrong, we contacted Dr. Chogle and he diagnosed my daughter with rumination syndrome. We just went to the therapist and learned the breathing and she has now been vomit free for the past two days. Finally after 5 months, we feel we may see the light at the end of the tunnel.
ReplyDeleteIf I had not seen your blog I would not have known where else to go except Columbus. We live in northwest Indiana, so going to Chicago was no problem. It was such a relief to find someone else that had gone through this because no one can understand it unless you have lived it
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