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Post by kimnz on Jan 28, 2005 22:26:23 GMT -5
Hi there,
I am new to this site and would love to hear some of your peronsal information and insight in regards to short segment (the one that about 80% of sufferers get) Hirschsprung's disease.
Our son Jordan who is six years old (and also has ds) has been diagnosed with this, we have had years of constant bowel problems which far exceeded the normal constipation problems that a lot of children with ds have. At the end of February they are going to remove all of his rectum and part of his over stretched sigmoid colon.
Have any of you had a child with this problem and what did they do for your child and also how do you feel the outcome has been? Do you have normal bowel movements now or does the bowel leak? I value your comments. When they did an xray they also found Perthes disease in the left hip, which hasn't had treatment as yet.
Thank you,
Kim
New Zealand
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Post by PaigesMom on Jan 28, 2005 23:04:52 GMT -5
Hi, I am going thru this with my daughter right now, who is 4 1/2. She has severe constipation issues that go well above and beyond what most people with ds have. She HAS NEVER had a bowel movement on her own, without some sort of 'intervention' (and there have been many different types) including during infancy. I have been fighting with dr.'s for years on this. As recent as yesterday I had her at a new GI and they are going to do some further testing - but not yet a biopsy, an ano-rectal myrongimy test, where they measure the pressure inside the rectum by using a bulb which they inflate with air simulating stool to see if he rectum responds, indicating the presence of nerve endings. UGGH. If this test is positive then they will do the biopsy. They said she has 'megacolon', so they think she does, something with insurance not paying for a biopsy until this is done.
I do not have any personal information on the results of surgery, however I have a friend who has a son with DS, who has had a pull thru and he also had an imperforate anus (born without one). He is on a bowel management program and still has some leakage but is definately better.
Good luck. I'd like to hear more about your experiences and how they diagnosed your child with Hirschprungs, if you dont mind.
Debbie
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Post by kimnz on Jan 29, 2005 0:10:30 GMT -5
Hi Debbie, thanks for your posting...in New Zealand we have a free public health system (however if you want to get something fast you can do it via medical insurance).
I had been complaining for years about how far inbetween Jordan's bowel movements were, he would store up for up to 12 days and the stool was very smelly, he would then fill nappy after nappy once it had pushed through. I asked a couple of years ago if it could be Hirschsprung's disease and was told no. I happened to see a paediatrician (in the public health system) who was taking the place of our regular paed for a period of time and she asked if I had heard about Hirschsprung's disease...this was when he was 5 years old. At this time I had had Jordan to the accute assessment unit re not being able to have bowel movement and abdominal distension. I was amazed that finally they were going to do some tests after all this time.
We had to take Jordan all the way to Auckland for the test which was a bowel biopsy under GA, it came back postive meaning negative for ganglion (nerve endings) so he then had to go back for further bowel biopsies to see how far up the absence of ganglion went. The surgeon wanted to do surgery on Jordan November 2004 but it took us a whole year to decide if we wanted this for Jordan (remembering we had come 5 years with this condition).
We have come to the point that we feel Jordan needs this operation as he has got to the point of generally not being able to have a bowel movement unless we use potent medication (eg. huge dose of magnesium hydroxide or picoprep). It then means we have to have him off of school while the medication is working, it also means he can't swim. So we have got to the point that we feel for him to have the best lifestyle we need to have the operation.
I am scared in case he comes out with a temporary colostomy and also in case the anaesthetic knocks off brain cells if you know what I mean! We have done much to help our son develop to his fullest potential in an area where many services are limited...not that this is the same for all over New Zealand and I'm not looking forward to him being under anaesthic for hours. Plus we do not know what the outcome will be.
He is such a happy little man and we love him so much, do not know what I would do without my Jordan.
Feel free to ask me any more questions, I am quite open to sharing anything.
Kim
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Post by wrblack on Jan 29, 2005 8:44:45 GMT -5
Hi, Kim, Welcome to Unoland. Me, I don't know from nothing about Hirschsprung's. Just wanted to make sure you know about Dr. Leshin's essay on constipation, at www.ds-health.com/constip.htmwhere he writes, among other things, <<Hirschsprung disease is a condition in which a segment of colon directly above the rectum is formed without nerve endings. This condition makes it impossible for that segment to push the stool along into the rectum; the stool backs up just above the rectum and only enters the rectum when enough stool backs up to push the front along (like a train caboose pushing the engine). These babies typically do not pass stool in the first 48 hours of life, and are chronically constipated. Children with DS do have an increased risk of having Hirschsprung disease, and sometimes it can be very difficult for the doctor to tell the difference between Hirschsprung and the normal stooling pattern of a baby with DS. The diagnosis is made by first performing a barium enema on the child, and if that exam is suspicious, confirmed by a rectal biopsy. Treatment is the removal of the segment of colon without the nerve endings (the length is variable from child to child). The traditional treatment was performed in two stages: the first surgery attached the ending of the colon to a specially made opening (colostomy), and then reattachment of the rectum was performed months later. Now, however, many surgeons are removing the involved segment of colon and reattaching the good colon to the rectum in one procedure. This surgery solves the problem of constipation, though children without long segments of colon may have problems with diarrhea and malabsorption for the rest of their lives. Parents of children with Hirschsprung disease may be interested in a parent organization called the Pull-thru Network at www.pullthrough.org . >> That Pullthrough group may well have info on results. Good luck and best wishes, Bob
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Post by kimnz on Jan 30, 2005 13:26:25 GMT -5
Hi there,
thanks for all your information and also your personal letter Bob. I have sent the lady a letter from the pull through association (Teresa) and am awaiting a reply. I have also looked at the site.
It is so nice having the support of caring people and I thank you for your concern. I'll let you all know when we are going off for our operation.
Kim
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Post by alisonzmom on Feb 1, 2005 0:03:30 GMT -5
Kim,
While my daughter doesn't have Hirschsprung's disease, she was born with imperforate anus and required a colostomy when she was just 2 days old. I won't say that my experience with the colostomy was "fun" by any stretch of the imagination, but it really wasn't too bad. She had the colostomy in place for the first 7 months of her life ( Alison is now 22 months old) and to be honest I think the whole thing was harder on me than it was for her! She had one other surgery to create the anal opening while the colostomy was in place. So far we have had no problems with stool leaking and with lots of fruit and veggies ( thankfully the kid LOVES her fruit and veggies!!) we have thus far had no problems with constipation which can so often be a problem for all of our kids with DS.
I hope that Jordan won't have to have a colostomy, but if he does, please feel free to email me with any ?'s you might have.
Barb
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Post by tornadoxs2 on Feb 1, 2005 9:21:32 GMT -5
Hello, i really am so grateful for this site because everytime my Son Benjamin 9 months DS has an issue i come here to look and see if it is common among DS children. My son Ben has not had a normal Bowel Movment from birth and i also have been fighting with Drs to have something done i recently talked to his dr and he has aggreeed to have him see a GI specialist . (WOW what a relief) I am so scared for him i know how uncomfortable i am when i am having bathroom issues and he is such a wonderful baby he rarely cries but now he is getting to the point where he is crying sometimes when he can't go. Thnx again for the info i get on here. Charissa
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Post by Ericsmomma on Feb 3, 2005 18:01:12 GMT -5
Hello,
My son, Eric, who is 4yrs old, was diagnosed with Hirshsprung disease at 1 yr of age. We had chronic constipation since he was born...tried everything imaginable to help him have a bowel movement, but nothing really worked. Finally, I had enough and insisted he have a rectal biopsy, which turned out positive for the disease. He had a temporary colostomy for about 4 months, and then had his pull-thru at the cleveland clinic. He did very well with both surgeries. His bowel movements now are regular, and if i notice him getting some hard stools I just give him some extra fruit. My surgeon in cleveland told me that he may have some "staining problems" with his bms...and potty training may take longer, but heck, we can handle that. If anyone has any questions, feel free to ask me....Dolly
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Post by Claire on Feb 5, 2005 23:52:44 GMT -5
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Post by kimnz on Feb 6, 2005 0:30:06 GMT -5
Claire that looks like a great site, I look forward to searching around it.
Thanks Kim
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Post by Kristen on Feb 7, 2005 15:44:42 GMT -5
Hi! We don't have that here, but Carter has ongoing "control issues" AKA - he hates pooping if there is any "form" to it, shall we say, and will hold it until he bursts. This started around 18 months which is aroudn when I was told to take him off orange veggies and fruits because he was eating too many and looked like a carrot. Well, long story short, those are the only veggies he liked at the time and less fiber plus really linking his applesauce and dairy...well, you know!
Until you can get the surgery, if you are having hard time with hard stools, try papaya. I have been telling everyone - it is like the miracle food! Gerber makes a papaya dessert or you can steam and smash your own. THe juice works well, too. Just mix some in what he is drinking or some of the pulp in with other fruit or cereal (it really tastes like nothing if you ask me) and it really, really helps! I heard kiwi is simlilar, but papaya is the bomb!
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Post by Jason on Mar 24, 2005 14:21:28 GMT -5
Hi Kim,
My daughter has DS and Hirschprrungs. She was diagnosed at 6 months and had the first stage done shortly after. She had a colostomy for 5 months while her colon healed. Care for the stoma is somewhat tricky but you get used to it.
The reversal went smoothly. One complication was SEVERE diaper rash which took a year to go away. The only thing that seemed to help was a thick cream called Ihle's Paste.
Two years later her bowel movements are more frequent, however she is still on stool softners. She may require enlarging of the anus as the opening is too small and requires excessive pushing.
Good Luck. Jason
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Post by Jackie on Mar 24, 2005 18:45:06 GMT -5
Hi all....subject near and dear to my heart...........Emily was diagnosed at birth....most unusual....25 years ago in Denver. She didnt pass a stool for the first three days....and they thought on xray she has something called intesseptution sp?...where the bowel telescopes upon itself. It rarely occurs until at least the third month of life....so they were very excited and planned a surgery that had medical illustrators...and all sorts of people present. They only found what they thought at the time was a huge muconioum sp? plug...but went ahead and did a biopsy for Hirschprungs even though they were sure they had seen nerve cells..........
At day five the biopsy came back....and no nerve cells were found...so they went in and did a colostomy. Now babies with colostomies ARE fun and games...but we all survived and she had very successful PULL THRU surgery at age 14 months.
She wasnt bowel trained until age 3.......and had numerous "accidents" at night only.... until puberty....it was very embarassing and hard for her...limited things like going to camp...etc. But for somereason ...about the time her periods started....she was able to gain night control.
To this day she has had very little trouble...except for some on going occasional seepage which requires careful attention to hygiene.
At the time...we thought...dang.........first DS...then heart troubles...and now Hirschprungs.........just doesnt seem fair.......what else could go wrong?
I have often wondered if more kids have this than get diagnosed .....because the diagnosis is pretty involved. Also I wonder since Hirschprungs is more prevelant among the DS population than the non DS population...if possibly kids with DS have less than normal cells that allow the bowel to relax so you can have a bowel movement.
The absence of the nerve cells keeps the bowel in a constant state of contraction .
Good Luck and I am sure advances have been made in treatment over the last 25 years. There is a "pull thru" society that puts out some excellent material. I keep losing the site but will see if I can find it.
Jackie mom to Emily almost 25
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Post by kimnz on Mar 27, 2005 1:25:41 GMT -5
Thank you all very much, the information is just great.
Kim nz
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