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mondoblue 01-04-2010 05:17 PM

Down syndrome and loose stool
 
Hi
I have a 3 year old daughter with Down Syndrome. She has never had a solid bowel movement. It's not exactly diahrrhea but it's always mushy. Sometimes she has violent explosions. She has no pain at all. She also has a great appetite and eats very well. She sleeps 10 hours a night and takes a nap. She looks to be the picture of health except for this problem. The doctor has done lab work and can't find anything. Does anyone have any ideas? I hear that some kids with DS may not be potty trained by 6 or 7.
I can't imagine her going to school with this problem.
Thanks
Diane

T21momof3 05-21-2010 04:14 PM

Re: Down syndrome and loose stool
 
Hi - have you found anything out about this yet? I just read your post and it's exactly what's happening to my daughter who is 4 1/2 and has DS. She has yet to have a solid or formed stool yet too. Her pediatrician says it's just toddlers diarreah and not to worry, but I can't believe that's all it is. It's just not right. I think I am going to have her see a gastroentorologist to see if they have any idea. School is not fun w/ this condition! I warned the teachers and aides at the beginning of the year and brought a note from the dr saying that the consistency is normal for her so they wouldn't send her home thinking she had diarreah all the time. She has started showing a little interest in the potty, but I think it might be a little early for potty training. I have a 3 year old typical child and may just try to potty train them both at the same time next weekend over memorial day. We'll see how it goes.

Karen W. 05-24-2010 05:36 PM

Re: Down syndrome and loose stool
 
Sounds to me like she has a food allergy. My oldest son had what your daughter has, it ended up being dairy products, I'd either by buy milk that is Lactose free for a week or just cut out milk products for a week and see what happens, also write down what she eats each day & also what what her bowel movement were like each day, you maybe able to figure this out on your own, I do have a down syndrome son who is 24 years old, I actually had him potty trained by the age of 3 1/2- to 4 years old- expect for night time. I was very persistant to get him potty trained and once I started the idea -I never turned back. He eventually caught on. He did have two older brothers at the time, He wanted to do everything they did, that went with allot of things he has done in his life, Do you know he rode a bike without training wheels? He noitced his brothers didn't have them so he didn't want them either, The day it happened I had tears in my eyes because I never thought I would see that.
karen

begonia 06-01-2010 11:03 AM

Re: Down syndrome and loose stool
 
[QUOTE=mondoblue;4155735]Hi
I have a 3 year old daughter with Down Syndrome. She has never had a solid bowel movement. It's not exactly diahrrhea but it's always mushy. Sometimes she has violent explosions. She has no pain at all. She also has a great appetite and eats very well. She sleeps 10 hours a night and takes a nap. She looks to be the picture of health except for this problem. The doctor has done lab work and can't find anything. Does anyone have any ideas? I hear that some kids with DS may not be potty trained by 6 or 7.
I can't imagine her going to school with this problem.
Thanks
Diane[/QUOTE]

Hi Diane,
My son with Down syndrome was also born with Hirschsprungs disease. While I AM NOT saying that your daughter has this congenital defect it is something that you can ask about. Hirschsprungs is when some of the nerve cells in your intestines are missing. The larger the segment of "diseased intestine" the more symptoms and problems. I would document how many BM's your daughter has a day. Are the violent explosions occurring after going a day or 2 without a BM? My son did have pain because he got impacted. He was treated for the disorder & is fine now. He is 20. We figured out that he had the disease when he was 6 months old. I know of another individual who had the disease and managed it with meds. I am sharing this as an FYI. Please try not to worry. Many kids with down syndrome have low motility in their bowels and need to take a fiber supplement. What kinds of foods are you having your daughter eat? If you can get her to eat weebatex (sp)? cereal since it is high in fiber -good. Talk about your concerns with your pediatrician. When I brought the Hirschsprungs possibility up my pediatrician he really didn't think it could be....... the disorder is that rare. I do not know what state you live in . I live in NY and we had an aid who helped my son w/ toileting in school. Good luck. I know how tiring the toilet training stage is for parents.

AuntieLeela 06-19-2010 03:35 PM

Re: Down syndrome and loose stool
 
Celiac disease is another possiblity.

SpecialMom1996 06-22-2010 09:19 AM

Re: Down syndrome and loose stool
 
My son was Dx with IBS but at 14years continues to have issues and isn't toilet trained fully. He is habit trained.

TysMomHL 08-06-2010 02:45 AM

Re: Down syndrome and loose stool
 
[QUOTE=T21momof3;4250600]Hi - have you found anything out about this yet? I just read your post and it's exactly what's happening to my daughter who is 4 1/2 and has DS. She has yet to have a solid or formed stool yet too. Her pediatrician says it's just toddlers diarreah and not to worry, but I can't believe that's all it is. It's just not right. I think I am going to have her see a gastroentorologist to see if they have any idea. School is not fun w/ this condition! I warned the teachers and aides at the beginning of the year and brought a note from the dr saying that the consistency is normal for her so they wouldn't send her home thinking she had diarreah all the time. She has started showing a little interest in the potty, but I think it might be a little early for potty training. I have a 3 year old typical child and may just try to potty train them both at the same time next weekend over memorial day. We'll see how it goes.[/QUOTE]
My son is 16 and has Down Syndrome. He had diarrhea for 11 years before we found out he had Celiac Disease. Left untreated - they won't get the nutrients they need and will have esophageal refux and behaviors to do GI tract pain. I had a new kid once he was diagnosed. Also left untreated - you can get cancers in the GI tract. Not trying to scare you but I feel guilty for letting a dr tell me he had toddler diarrhea and not getting a second opinion. On the RARE front he now had Hodgkin's Lymphoma. I have only been able to find a couple cases of DS and HL. Good Luck all!

vickiharvey 08-21-2010 02:38 AM

Re: Down syndrome and loose stool
 
My son had that problem, but it turned out to be because I was giving him megavitamins. If this isn't the case, maybe she is allergic to something she is eating.

theguy91 02-08-2013 04:22 PM

Re: Down syndrome and loose stool
 
Hello Mondoblue,

I feel for you. My son will be 6 years old in March and he has had exactly the problem you just described for the whole of his entire life. It is so bad that he was basically expelled (they sent a letter home from the department of health and human services saying he cannot come to school with loose stool because that indicates that he could possibly be contagious, which is total B.S.) from school in early December. We have been taking him to specialists and yet we still have no answers. Earlier today we just got back from an endocronologist and his bloodwork ruled out the possibility of celiac disease. At this point we have no idea and yet each passing day where he is not allowed in school and with the developmental services that they offer he is suffering and falling more and more behind where he could be. A this point, I'm looking for any ideas and or leads at this point, no idea where to go from here. Seeing a G.I. specialist is next in our plans, but his next available appointment is a little ways out.

Seriously, any help is useful at this point.

SpecialMom1996 02-08-2013 05:09 PM

Re: Down syndrome and loose stool
 
[QUOTE=theguy91;5130345]Hello Mondoblue,

I feel for you. My son will be 6 years old in March and he has had exactly the problem you just described for the whole of his entire life. It is so bad that he was basically expelled (they sent a letter home from the department of health and human services saying he cannot come to school with loose stool because that indicates that he could possibly be contagious, which is total B.S.) from school in early December. We have been taking him to specialists and yet we still have no answers. Earlier today we just got back from an endocronologist and his bloodwork ruled out the possibility of celiac disease. At this point we have no idea and yet each passing day where he is not allowed in school and with the developmental services that they offer he is suffering and falling more and more behind where he could be. A this point, I'm looking for any ideas and or leads at this point, no idea where to go from here. Seeing a G.I. specialist is next in our plans, but his next available appointment is a little ways out.

Seriously, any help is useful at this point.[/QUOTE]

Oh, how I know that note! Everytime we have a new teacher we deal with that so I give them the run down of what a sick BM actually smells like for my son. Then they know I'm serious. You can also get a dr note saying that the diareah is part of his disability and he isn't contagious. They are legaly required to educate your child under IDEA. The GI will do many nice things like take blood, stool, and run tests for bacteria, parasites, etc. What they won't do is anything allergy testing. Keep a food log with BM log on the same page so you can see the connections (ex. my son reacts quick to irritants within 30m-1h). If you suspect wheat then just to a 6 week trial elimination of wheat and that included checking your condiments because they use flour to thicken them sometimes. Celiac's test is false neagtive a lot. It doesn't really matter what the test says. If your gut says it's a problem just do it. Other common allergies are nuts, milk, soy, eggs, corn products, food dye, food preservatives, and artifical flavors. Feingold program has done all the research for you for food addatives, if you want something easy to follow. Probiotics are helpful too. We have used Culturrelle and recently switch to Innate Choice Probiotic Sufficiency. I've heard good things about liquid probiotics too. plant based probiotics are best. Avoid antibiotics at all cost. Going to the chiropractor will boost the immune system more naturally (and it's good deep pressure input if you have sensory issues too). It's freuent at first but once the muscle start to hold the vertebra in place you can go less often. It take 2 years to replace the good bacteria that antibiotics kills. Ask the GI to check for small intestine bacteria over growth. If your child has that the BM will small like death and there will be lots of gas even when not eating gassy food. Another thing that helps for school is give lots of oatmeal and beans. The soluable fiber will soak of the excess liquid in the GI tract and make the BMs not as loose. These are also pre-biotics (food for the probiotics to eat). Omega 3 is helpful as well because it's an anti-inflamitory. Usually the GI tract is inflamed. This will help the skin and brain too. Omega 3 is good all around. "what's eating my child?" by Kelly Dorfman has some good recomendations for how to chose suppliments for kids.

We've made lots of progress since I posted in 2010. :) You will get there.

theguy91 02-08-2013 05:27 PM

Re: Down syndrome and loose stool
 
Thank you so much for your response. I am going to start implementing a lot of what you said immediately. Tyus eats a lot of yogurt already, but not many beans or oatmeal. That will be easy to adjust because he LOVES both of those things. Your idea of a journal is wonderful too. Thank you again so much.

(I may unfortunately not be able to avoid antibiotics. I've always been one of those parents that tries to let my kids immune systems do their jobs, but that plan has Tyus averaging about 1 1/2 hospitalization a a year, which is taking a toll on both us and on him. Getting to the point where at first sniffle he's in to the doc. His stay last February was 19 days with his O2 crashing from 83 to 32 in an hour. Scary as heck.)

SpecialMom1996 02-08-2013 07:50 PM

Re: Down syndrome and loose stool
 
[QUOTE=theguy91;5130377]Thank you so much for your response. I am going to start implementing a lot of what you said immediately. Tyus eats a lot of yogurt already, but not many beans or oatmeal. That will be easy to adjust because he LOVES both of those things. Your idea of a journal is wonderful too. Thank you again so much.

(I may unfortunately not be able to avoid antibiotics. I've always been one of those parents that tries to let my kids immune systems do their jobs, but that plan has Tyus averaging about 1 1/2 hospitalization a a year, which is taking a toll on both us and on him. Getting to the point where at first sniffle he's in to the doc. His stay last February was 19 days with his O2 crashing from 83 to 32 in an hour. Scary as heck.)[/QUOTE]

obviously within reason. my son didn't have any oxygen issues. hadn't had penumonia since he was an infant. chiropractor can help boost immune system though and maybe you'll end up with less antibiotics. A friend of mine swears by apple cyder vinegar 1 T at first sign of illness. I put mine in a cup of warm water with some honey like tea but I've never had the kids finish theirs. Ecchineasia wellness tea is good. it have zinc/ vit C in it too. you can find more immune boosting ideas at natural news. GI health is a big one though. one of the first place bacteria and virus' end up at. we did probiotic suppliment because my son wouldn't eat yogurt or kefir and seurkraut is made with cabbage which cause instant problems. but it is alway pre-measured and you know how much they are getting. keep them in the fridge so they stay alive. ;) Another good think since he likes yogurt would be to make smoothies with bananna. bananna binds things up. you can put oatmeal in there too. berries are sometimes a problem due to the seeds. mango is another generally safe fruit. apples hit or miss. cause problems for mine due to the excessive pectin but for others it helps due soluable fiber. citris is generally tolerated as long as there is no reflux. one thing about yogurt is that the pastruized ones don't have live cultures even if the package says so because pasturization kills them during packaging. you can empty the probiotic capsule into any cold food including yogurt or a smoothie. My other son likes his on his PB and J.


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