Re: *JoEllen*/gastro problems

[Guest guest]

JoEllen -

I just remembered a few more things and thought you might be interested...

1. If you don't know exactly what Chase is dealing with, it may be best to go

to a GI with a good reputation that can cast a wide net (e.g., can diagnose a

variety of problems using various technology and can refer you to a colleague

once he/she is close to the exact diagnosis). I worry about docs that are

highly specialized in one disorder and see everything as a nail -- because they

only have a hammer (such as electrodes for testing motility issues) for

diagnosing our kiddos. Most of the time, our kiddos have atypical/quirky stuff

going on (do not have texbook " nails " ) and, without a really insightful doc,

their problems fall through the cracks. I have read posts from a couple mothers

in this group whose children have motility problems but the tests did not show

" it " . Sometimes, I feel like we are still living in the dark ages of medicine.

There are slim picking for truly experienced/smart/ethical GI docs. Some

parents have been satisfied with Dr. Putnam at Children's Hospital Cinci -

Department of Gastroenterology, Hepataology, and Nutrition. I believe this is

driving distance from you. Also happens to be director of endoscopy and does

them himself -- no outsourcing and totally hands on. The director of the

department is smart and they recognize the immune system-GI link, though there

is still work to be done.

513-636-4415

http://www.cincinnatichildrens.org/svc/alpha/g/gi/fs/default.htm

2. At the beginning, we went the motility route and were looking for a doc

that specifically did " motility " . The problem is that they often tend to rely

on electrodes to determine whether or not there is nerve/muscle damage in the

GI. For our kiddos, the problem is often MUCH more complex and nerve/muscle

damage is not always clear cut. Our GI explained that, with CVIDers, you often

can not pinpoint the reason for the motility problem -- but it is there, even if

the research/technology is not. Our general peds doc (a sharp cookie) thinks

that the motility problems are more related to a messed up microflora/mucosa and

that, if this is the problem, electrodes are useless. Consistent with her pet

theory, our GI doc said to treat the problem like you would a CVIDer with a

motility disorder and, if that does not help, then go forward with more motility

tests. However, for very severe motility disorders oral medication and run of

the mill cleanouts will not do the trick.

Anne has first hand experience with this.

3. We did speak with one nationally known GI motility expert in Kansas. He

explained (via telephone!) that my daughter had a " gut-brain " problem and to

simply medicate her with a sleeping agent. Yes, there are some real wackos out

there. His solution was negligent, dangerous, and criminal. I would not see a

motility expert in Kansas -- or anyone affiliated. Actually, one of the parents

on this list (or perhaps it was the SCIDS group) said that the doc there

permenantly damaged a girl with their motility study.

4. There is, however, one phenomenal GI close to Kansas (I believe he is at

the University of Nebraska) named Dr. Jon Vanderhoof. His expertise happens to

be microflora/mucosa and infecious organisms. He was one of the first GIs to

use oral vanco for GI pathogens/bacterial overgrowth and saved lives. The staff

totally get the GI-immune connection. In fact, HIS nurse that was the very

first person to tell me flat out (no mincing of words) that my daughter had an

underlying immune disorder -- before we ever had any labs done!!! But, he is

far from you.

5. I know that some people swear by Zelnorm but, in our case, we were told to

avoid it. Obviously, every child is different and there are always unique

reasons for using, or not using, this product. The FDA had updated precautions

to now include: " Voluntary reports of adverse events occurring with the use of

Zelnorm include the following: ischemic colitis, mesenteric ischemia,

gangrenous bowel, rectal bleeding, syncope, suspected sphincter of Oddi spasm,

bile duct stone... "

http://www.fda.gov/bbs/topics/ANSWERS/2004/ANS01285.html

Whewww...that was long...

Hope you get relief for Chase soon...

mom CVIder