Guest guest Posted August 1, 2004 Report Share Posted August 1, 2004 Derval, Our son has had chronic constipation and after the Dr.'s kep telling me to keep giving him lots of pitted fruit and less milk products I got a little fed up because 1) he wasn't getting the calcium and vitamins he needs from milk products and 2) this regimen wasn't really working that well. When they diagnosed him with MDS another Dr. gave us a perscription for Mirolax which he says is used to regulate constipation in a lot of toddlers and after a few years the problem often goes away. However, I'm still new to all this and I'm sure there are some ailments related to the MDS that I'm not aware of that may require more treatment and/or testing. That's what's so great about this group - there are so many resources! Anyway, that was my experience in case it helps. , mom to Aidan (2 MDS) and a (7 mos.) rourkedeva wrote: Hi, My friend has a daughter aged three (four in November) with MDS, unfortunately she is not currently online and therefore I am accessing your website for information on her behalf. Her daughter experiences prolonged constipation which appears to cause her lower abdominal discomfort and unsurprisingly is seriously affecting her mood. She often goes for 8/9 days without a bowel movement. My friend has been seeking medical assistance but to date this has not been successful. I would be very very grateful if anyone could offer some advice/direction. Many thanks for your time. Derval Won't you please consider adding your personal story on the MDS website today? http://www.mosaicdownsyndrome.com ************************************************* Become a member of IMDSA at http://www.imdsa.com ************************************************* MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus ************************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2004 Report Share Posted August 1, 2004 WE have gone through this since our Dorothy started on formula at 1 month. We have gone through Karo Syrup, Kondremul, and now Miralax. She has to take something daily in order to have a bowel movement. WE have learned to live with this. You could also use prune juice as an additive to help push things along so to speak! lol. The pediatrician only helps so much. We go to a gastro specialist periodically for advice. This seems to help greatly. unfortunately there are no easy answers for each case is different. Good Luck! Alice Poholsky cell Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2004 Report Share Posted August 2, 2004 All of your questions and replies hit home for me... There is a bowel disease, called Hirschsprung's, my MDS son has it... it is when the nerve cells don't travel the entire length of the bowel in utero. In 's case, it was severe enough to cause a total blockage, but I belong to another e-group for Hirschsprung's, and you would be shocked to hear how many people have to fight with their doctors to get them to take their childs constipation seriously. Many many children with this disease present as having severe constipation...but can pass some feces. Now here's the kicker... there IS a correlation between DS and Hirschsprung's...they find that 2-3% of children with DS have Hirschsprung's! Unfortunately it can only be diagnosed by a rectal biopsy...because they have to test for the presence of nerve cells... but initially an x-ray is done which usually shows the area of blockage, and an enlarged colon from compacted and backed up feces. Many websites have great info on Hirschsprung's now! I dont think links work thru the e-group, but please, look it up and see what you all think about your individual circumstances! ~ANGEL~ Mom to 11 Mosaic Down Syndrome/Hirschsprung's Disease Lance 15, Tyler 12, 9 Jaeda 8 & Shayne 2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2004 Report Share Posted August 2, 2004 My daughter also had constipation problems - what worked best for her was giving her a tablespoon of mineral oil after every meal. This can be increased or decreased as needed. She had difficulty passing stools, and this really helped a lot. My daughter did not mind the mineral oil at all. Don't be alarmed if there is orange coloring in her underwear, sometimes this would happen and I would slack off on the mineral oil. Now, my daughter eats plenty of vegetables and has been off the mineral oil for about 3 years and has not had a problem - I think as kids get older, the constipation gets less and less. Let me know if I can be of any further help. Charlotte Siegmund - mom to Katy -12 - MDS Query for a friend Hi, My friend has a daughter aged three (four in November) with MDS, unfortunately she is not currently online and therefore I am accessing your website for information on her behalf. Her daughter experiences prolonged constipation which appears to cause her lower abdominal discomfort and unsurprisingly is seriously affecting her mood. She often goes for 8/9 days without a bowel movement. My friend has been seeking medical assistance but to date this has not been successful. I would be very very grateful if anyone could offer some advice/direction. Many thanks for your time. Derval Won't you please consider adding your personal story on the MDS website today? http://www.mosaicdownsyndrome.com<http://www.mosaicdownsyndrome.com/> ************************************************* Become a member of IMDSA at http://www.imdsa.com<http://www.imdsa.com/> ************************************************* MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus<http://www.mosaicdownsyndrome.com/discu\ s> ************************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2004 Report Share Posted August 3, 2004 Derval - Welcome to our family! What a wonderful friend you are to take the time to help your friend out with this problem! I strongly suggest that your friend take her daughter to a specialist. Also, please feel free to print this out for your friend and her doctor. Feel free to ask questions any time on behalf of your friend! Sincerely, Kristy Colvin IMDSA President Constipation and Down Syndrome by Len Leshin, MD, FAAPCopyright 1996-98,2003 All rights reserved Constipation is usually defined as the presence of hard or thick, pasty stools which cause discomfort as they are passed. In severe cases, the child has an inability to pass the hard stool on his/her own. The direct cause of constipation is not enough water in the stool. This occurs because of the diet not having enough water-retaining elements (fiber) or because the stool is kept in the rectum too long, allowing the colon to reabsorb more water than usual. In children with Down syndrome, two factors exist to make constipation more likely: low muscle tone and decreased motor activity. Both of these make the colon more likely to retain stool for longer periods, leading to loss of water from the stool. If left untreated, constipation can lead to (1) rectal fissures: tears in the rectum leading to bright red blood on the surface of the stool and on the toilet paper, but not mixed in with the stool; (2) impaction; (3) stretching of the rectum leading to the loss of the sensation of the need to have a bowel movement. This last problem can further lead to the weakening of the rectal muscles (sphincters) and cause the child to have bowel movement accidents (in medicalese, " encopresis " ). The usual treatment of constipation is dietary: increasing fiber, fruits and vegetables. In bottle-fed babies, the introduction of a stool softener is used, such as corn syrup (Karo), malt barley extract (Maltsupex) or lactulose (Diphulac). Lactulose is also used in children and adults. All of these soften the stool by adding water to the stool. Another way of adding dietary fiber is through products such as Metamucil, Citrucel, or fiber wafers. Increasing the amount of fluids the child drinks is helpful; and in older children, decreasing the amount of constipating foods (milk products, bananas, white rice) may also help. For babies who are having a hard time passing a stool, the use of glycerin can be helpful. These can be found as solid suppositories or in liquid form (Babylax), and are useful as occasional measure. For severe constipation, your doctor will usually recommend a medicated suppository or enema; please do not use these without consulting your doctor first. Likewise, avoid other laxatives unless your doctor specifically recommends them. The treatment of encopresis is long and involved, and I won't go into that here. Two special conditions require further mention in children with DS: Hirschsprung disease and hypothyroidism. 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. Constipation is also one of the signs of hypothyroidism, another condition more common in children with DS. Because the signs and symptoms of hypothyroidism can be well hidden in children with DS, a regular thyroid screening blood test is recommended every one to two years, even if the child is growing well. rourkedeva wrote: Hi, My friend has a daughter aged three (four in November) with MDS, unfortunately she is not currently online and therefore I am accessing your website for information on her behalf. Her daughter experiences prolonged constipation which appears to cause her lower abdominal discomfort and unsurprisingly is seriously affecting her mood. She often goes for 8/9 days without a bowel movement. My friend has been seeking medical assistance but to date this has not been successful. I would be very very grateful if anyone could offer some advice/direction. Many thanks for your time. Derval Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.