Hirschprungs

[Jackie]

Some one once posted about a message board for Hirschprungs....I have some questions and wonder if whoever it was would either contact me or post the site here....

Jackie mom to emily 24

[wrblack]

To quote the tee shirt my stepson wore first day of school, whatever it was, I didn't do it. I don't know who posted what when, but it was not I.
Anyway, there is a Yahoo group, health.groups.yahoo.com/group/guardiansociety/
<<The Hirschsprung's & Motility Disorders Support Network (HMDSN) are a group of people whose kids suffer from various motility disorders such as Hirschsprung's Disease, Neuronal Intestinal Dysplasia, Intestinal Pseudo-Obstruction, GERD, Short Bowel Syndrome, and the like.

Please go to our website at www.hirschsprungs.info and there you will find out more about us. >>

There's also Dr. Leshin's essay on Constipation, www.ds-health.com/constip.htm
which says, among other things, << Parents of children with Hirschsprung disease may be interested in a parent organization called the Pull-thru Network at http://www.pullthrough.org.>>

I am thankfully quite ignorant about Hirschprung disease. -- Bob

[Jackie]

Thanks Bob....I am following thru on these...what I really would like to find is a message board that I can talk to some other adults with or parents of kids who are older with Hirschprungs.

Emily has developed a few problems recently that I am concerned might be connected with it.

Jackie

[Emilysmom]

Jackie~ Although I'm sure it is quite possible for Em's new symptoms to be related to her history of Hirschprungs, could it also be possible to be Irritable Bowel Syndrome? This could be WAY more info than anyone wants or needs, but I have had that for years.....in fact, it started when I started college! It was one of the greatest times in my life and I had a blast......but certainly a stressful time for me too. Maybe it had nothing at all to do with stress, but it sure was scary and inconvenient to have IBS symptoms in college! I've dealt with this for all those years......graduated in 1983, so it's been a LONG time. This past January, I had a colonoscopy and once again it was confirmed that I had IBS. The doc recommended the following: NO caffiene, LOTS of water, fiber tablets daily, and limited carbonated drinks. It's amazing how much that helps!!!

Susan

[Jackie]

Thanks Susan...sorry our chat got interrupted last night....I have sent a copy of your post to Emilys job coach....hmmmm...she does all the things you say irritate your system......

Jackie

[laurasnowbird]

Jackie,

This is probably redundant, but has she been tested recently for celiac disease? I am given to understand that a clean test doesn't mean that you can't develop it later time.

[Jackie]

I appreciate the advice...but I really do think her current problems relate to her colon surgery 22 years ago....and I was hoping maybe someone could give me some references to long term affects of "pull thru" surgery as they call it. I WILL check out all the other advice I have been given though, cuz these would be easier to deal with.

For those of you who dont know...Hirschprungs is an absence of nerve cells in the colon causing it to remain contracted and essentially constipating an individual all the time. Luckily Emilys was discovered at birth from thinking she had another problem.

Now I understand there is a sphincter test they can do on individuals who are chronically constipated to check for it...then I guess if they dont pass that test...they do some sort of colon biopsy. But the long term effects of Hirschprungs can be devistating if it isnt treated and can cause bowels to rupture or become permanently stretched...and life long discomfort for people so I am glad we got this over with when she was a baby. It happens in non DS people too...and seems to recur in families with a history of it...altho in our family...none.

Jackie

[laurasnowbird]

Wow Jackie, it is certainly a good thing that they found it when she was so small. I have never heard the list of possible complications related to late diagnosis!

I know that most celiacs have loose stools, but my best friend is a celiac and part of the reason she went undiagnosed so long was because she was chronically constipated instead.

I did some searching, and found a list-serve for people with pull-thru experience. You have to send them an e-mail to get on it, so I haven't seen it, but here is the link. www.pullthrough.org/listserv.html They also have a newsletter, but it may be targeted to those whose children are going through the surgery, I can't really tell. This is the link: www.pullthrough.org/ptnnad.html

I found an abstract regarding pull-through surgeries with some U of M doctors who have long-term experience with it. This is the link: www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10873020&dopt=Abstract I was amused to see the name of the surgeon who did Ethan's surgery, (he had a duodenal web that was corrected at 8 months of age) who was BRILLIANT, but not a pleasure to deal with, to put it nicely.

This is a good article from U of M, but maybe Ed would understand parts of it better than I did, LOL! pediatric.um-surgery.org/new_070198/new/Library/Hirschsprung/hirschsprung.html There are numerous references to other articles used in their research that I can't access because I don't have subscriptions to the medical journals.

Anyway, maybe some of this will help. Laura

[Jackie]

wow Laura...thanks....I am going to share this with Ed as he subscribes to medline thru his work.....and you are right he can understand it better than I can....LOL

thanks...
Jackie

[mom2beau]

Jackie,
Hello~My name is Jennifer. My son Beau who is 1yr also had the pull thru surgery done shortly after birth. Back in April he was hospitalized again due to c-diff bacterial infection. His bowls became obstucted again due to what they called sphinter spasms. Since then he is doing very well, but needs to take daily laxitives due his cronic constipation. His surgeon had mentioned to me that if it continues to cause problems (and he said odds are it will at times) he could have Beau come in for Botox injections to relax the sphinter . We havent needed to yet but that might be an option for your daughter.

[Jackie]

Thanks Jennifer...good luck with your son...I will pass this info on.....I have friends who have Botox for their face...LOL...Botox for the Butt...that will be a good one ... ;D .but great if it works.....Jackie