Crohn's Disease

[emmalily]

Hi,

 

A quick update--doing okay after a backslide in the last couple months. Recovered from a resurrenge of OCD with six weeks Augmentin XR.

 

Unfortunately, my GI symptoms that I have had right along have only worsened (and according to tests, it's not because I'm out of balance because of antibiotics nor does it show yeast overgrowth). I've had the rather lame diagnosis of "IBS" this whole time, but I feel like things are getting a little more serious and want to have some more tests on my GI system.

 

So I was just wondering if anyone here or their children with PANDAS have a diagnosis of Crohn's or other inflammatory bowel disease? Just wondering if this would be unusual or not. Seems like it would make sense to look into this as it also autoimmune, can be aggravated by infection, etc.

 

Thanks for your help in advance!

 

emmalily

[philamom]

Did you have an endoscopy and/or colonopscy done? GI doc has just requested it be done on my daughter to check for Chrohn's and other things.

 

Is there a blood test for Crohn's?

Edited January 14, 2012 by philamom

[Ozimum]

You might also check out gut dysbiosis and leaky gut. My PANDAS DS17 has been on a gut healing diet for over 12 months now, along with supplements to strengthen his immune system and he's doing really well. A good integrative dr should know what to do either way.

[EAMom]

Hi,

 

A quick update--doing okay after a backslide in the last couple months. Recovered from a resurrenge of OCD with six weeks Augmentin XR.

 

Unfortunately, my GI symptoms that I have had right along have only worsened (and according to tests, it's not because I'm out of balance because of antibiotics nor does it show yeast overgrowth). I've had the rather lame diagnosis of "IBS" this whole time, but I feel like things are getting a little more serious and want to have some more tests on my GI system.

 

So I was just wondering if anyone here or their children with PANDAS have a diagnosis of Crohn's or other inflammatory bowel disease? Just wondering if this would be unusual or not. Seems like it would make sense to look into this as it also autoimmune, can be aggravated by infection, etc.

 

Thanks for your help in advance!

 

emmalily

 

If my memory serves me right, I think worrieddad has crohn's.

[Worried_Dad]

 

If my memory serves me right, I think worrieddad has crohn's.

 

Great memory, EAMom!

 

Yeah, I was diagnosed with Crohn's in 1990 at Mayo Clinic, although it was "not typical" Crohn's. Now that diagnosis is in question (local gastroenterologist is no longer convinced it fits, based on latest colonoscopy). So I'm back to square one (familiar territory for folks on this forum, eh?). Just started consulting the same LLMD who treats our PANDAS son, and he ordered a bunch of tests. Said he's had other patients originally diagnosed with Crohn's by "process of elimination" who have ended up having a different issue.

 

So I "sort of" have Crohn's - was treated for it for about 20 years (until last summer, when the local doc called that into question). Wish I had better info for you. Emmalily, I'll keep you posted as the LLMD moves forward with diagnosis.

 

Chemar's son has both a TS and Crohn's diagnosis, I believe. She might have valuable insight here: I know she's found a treatment regimen that's been very helpful for her ds.

Edited January 14, 2012 by Worried Dad

[LNN]

Em - tried to PM you but couldn't.

[emmalily]

Thanks for the info everyone. I'm thinking that it's probably just an indicator that my immune system is still out of whack, even in my OCD has gone away. I've been told I have dysautonomia (which can happen along with autoimmune diseases), and GI is definitely a symptom of that, too. Just wanted to make sure it wasn't a common PANDAS thing to have something like Chron's or UC, too.

 

WorriedDad--that is really strange that it's not quite Chron's any more. I really hope they figure something out for you at the LLMD! Thanks for the insight.

 

LLM--I'm so bad about clearing out my inbox...but I just deleted some messages so you should be able to PM me now.