Dysautonomia (Autonomic Dysfunction) Community
Need a good GI team!
About This Community:

This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

Need a good GI team!

Hi all,
Since my last post, my daughter got a gtube to match her jtube and had an upright MRI to rule out Chiari malformation (it was ruled out).

The gtube stopped her vomiting (it all comes out the gtube now), but daughter still has terrible pain and nausea and diarrhea with jtube feeds. The marinol and promethazine do MOSTLY knock her out so she doesn't feel the pain while feeding, but she wakes up anyway to run to the bathroom with diarrhea and yell from the pain. She now takes a little immodium to try to stop the diarrhea, but we can't seem to find that sweet spot between diarrhea and constipation. And, she can't get the feed rate up to a sustainable level because it hurts sooooo much.

We thought it was bad tube placement but interventional radiology ruled that out. Our local, well meaning GI (but no motility expert) won't increase her marinol to help with the pain, and we don't live in a medical marijuana state :(

We've never taken her to a motility center, and figure it's worth a try at this point. Hopefully, one that can also pull in docs to manage her Ehlers-Danlos Syndrome.

We're willing to travel from Central Texas if we can do a 1-2 week consult and then go home with ideas/protocols for our local docs. PLEASE tell me if you all have teams you work with that you like!

Please!

Note: Daughter went many times to Mayo/Rochester for POTS and Migraine (before all this GI and EDS stuff got really bad), and they were awful. Pretty much said, 'live with it' and blamed her for failing their pain rehab program.

Cleveland Clinic? Clare Francomano? Anybody? Thanks in advance!!

Here's hoping all are having a good, quiet day!
2 Comments Post a Comment
Blank
612876_tn?1355518095
I'll reply to your message as well when I get a moment, but lest I forget I wanted to toss my two cents in here. Cleveland clinic has been the best bet for me. There's a Dr. Birgisson (do NOT ask me to spell his first name from memory ... It looks Nordic, for what it's worth) who is THE guy for esophageal and that kind off upper GI issues. For stomach and lower, I'm not familiar enough with their GI department to rattle off names, but I know they have good people. I'd go through their website on the GI dept and research different docs and their areas of expertise to know who to request. Of course if you need a hand, as always let me know.
Blank
Avatar_f_tn
Dear Heiferly, thanks, as always! Please let me know how you are.

Blank
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Dysautonomia (Autonomic Dysfunction) Community Resources
RSS Expert Activity
242532_tn?1269553979
Blank
How to Silence Your Inner Critic an...
Apr 16 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Emotional Eaters: How to Silence Yo...
Mar 26 by Roger Gould, M.D.Blank
1344197_tn?1392822771
Blank
Vaginal vs. Laparoscopic Hysterecto...
Feb 19 by J. Kyle Mathews, MD, DVMBlank
Top Arrhythmias Answerers
1124887_tn?1313758491
Blank
is_something_wrong
Oslo, Norway
Avatar_m_tn
Blank
Ball123