Re: Burping, diarrhea, constipation, Please Help!!!

February 28, 2012

Joni: Has your son been evaluated for GERD?LizMom to Tori, 12 yo

We have had burping (to the point of spitting up) issues for almost 2 years.

Now we have been having diarrhea problems for the last month. Thurs. 2/9 was the 3rd time this happened. At school on 2/9 he had a " regular " BM, then he had a semi regular BM., within an hour he had diarrhea. At this point they sent him home, where he had another diarrhea within and hour. When the 3rd round occurred, I consulted with our GI doc, who ordered an xray. The xray showed constipation, not a blockage. I don't know what the difference is. Doc recommended a clean out, a 238 grams of Miralax with 64 oz. of Gatorade. We did this on Sat. NO results. Called doc on Sat. night, got the other doc in the office and he was not concerned, said we could give him a suppository, or enema or wait till Monday and have another xray. Peds office recommended just waiting till Sunday AM as it could still work. No results. Xray on Monday showed constipation again! Wonder why? Another clean out ordered for Wed., this time with Dulcolax before and after the Miralax. NO results by 8:30PM, so I also gave a suppository! I checked on Nick around 4AM and he was absolutely soaked! Some brown tinge in the diaper, but very little. The next day, he pooped more liquid, never any real " poop " , and even that stopped by late afternoon. Was told to start low dairy, high fiber diet and normal dose of Miralax daily with Dulcolax on Mon., Wed. and Friday at dinner time. (Adjusted diet a little, but not much) No BM's over the weekend, but he had 2-3 urine accidents, not normal for Nick. Someone mentioned that it could be due to the laxatives. Today we have green diarrhea x2, only when he stands to pee, and a little in the underwear. Nothing when he sits on the toilet.

Nick has missed 10 days of school, due to diarrhea or the fear of it this month! He had a great field trip today, but I kept him home, expecting and getting diarrhea! This cannot continue. Called GI again and now he is saying " colon neuropathy " is common in kids with Ds. And, of course, most of these messages from the docs are through the nurses. I wasn't in agreement, and expressed that. Why so suddenly when we had no major problems before this month? The nurse called back and we have an appt. for tomorrow. He has not " seen " a doc, through both of these clean outs.

I am sorry this is so long, but I wanted to give as many details as possible. What do you think? Nick does have the Ds-Autism dx. Thanks for any input!

Joni, Nick's mom

Nick, 14, Ds-Autism

-- Liz DeSantis " The person who follows the crowd will usually get no further than the crowd. The one who walks alone is likely to find himself in places no one has ever been before. "

" Creativity in living is not without its attendant difficulties, for peculiarity breeds contempt. And the unfortunate thing about being ahead of your time is that when people finally realize you were right, they'll say it was obvious all along. " ---Temple Grandin

" Anyone

can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength. " - Reeves " Knowing trees, I understand the meaning of patience. Knowing grass, I can understand persistence. " - Hal Borland

February 28, 2012

Hi - It's constipation. The burping, the reflux he feels (which causes pain) the bloating and the diarrhea. What happens is there is a bolus of waste that is having trouble moving down the Gut because it is so large or hard. The diarrhea is the waste product that is behind that bigger bolus. It gets over digested and slips around it. Given that he had a couple of sort of formed BMs before the diarrhea started, the waste product that is " stuck " isÂ likely up high and having trouble moving down.

Miralax is not a laxative, it's a stool softener (despite it's name). You can give him a couple of doses a day to help soften that stuck stool. A suppository (ducoliax suppository) laxative effects stool that is lower in the gut. If you don't see results from a suppository in 30 minutes, you likely aren't going to.

An oral laxative may help - I'd suggest Senna-S - no more than two tabs. Senna is the gentlest laxative on the gut....doesn't cause the painful cramping.Drinking lots of fluids (water, juice---NOT pop) will help things some. Stay away from pop because it creates gas and bloating that will make him more uncomfortable.Â Activity (walking, swimming) will help things move along as well.

Once you clear him out, you may want to consider using Miralax a couple times a week or even daily to help prevent this again. Another option that is even more proactive is to add benefiber to foods. We're constantly dealing with this ever since we went gluten free for his celiac disease. GF is lower in fiber which makes it a challenge.

Watch his moods and behaviors. People are typically super uncomfortable and can be grouchy.This level of constipation also creates a reflux reaction (the spitting up), which is hard on his esophagus. In re-reading yoru note, I' would definitely recommend daily miralax once he is cleared out. When we dealt with a completely coonstipated boy (you could see no bones or organs for all the stool in him!), we did laxatives from top and bottom.Â This type of constipation will take a number of days to clear out. He's got feet and feet of stool in him. You want to be overwhelmed by the amount of stool that comes out of him to know that it's out - then the maintenance can begin. It's hard.

Joan

Joan Guthrie Medlen, MEd, RD

DownSyndromeNutrition.com

twitter: @jmedlen

Â

We have had burping (to the point of spitting up) issues for almost 2 years.

Now we have been having diarrhea problems for the last month. Thurs. 2/9 was the 3rd time this happened. At school on 2/9 he had a " regular " BM, then he had a semi regular BM., within an hour he had diarrhea. At this point they sent him home, where he had another diarrhea within and hour. When the 3rd round occurred, I consulted with our GI doc, who ordered an xray. The xray showed constipation, not a blockage. I don't know what the difference is. Doc recommended a clean out, a 238 grams of Miralax with 64 oz. of Gatorade. We did this on Sat. NO results. Called doc on Sat. night, got the other doc in the office and he was not concerned, said we could give him a suppository, or enema or wait till Monday and have another xray. Peds office recommended just waiting till Sunday AM as it could still work. No results. Xray on Monday showed constipation again! Wonder why? Another clean out ordered for Wed., this time with Dulcolax before and after the Miralax. NO results by 8:30PM, so I also gave a suppository! I checked on Nick around 4AM and he was absolutely soaked! Some brown tinge in the diaper, but very little. The next day, he pooped more liquid, never any real " poop " , and even that stopped by late afternoon. Was told to start low dairy, high fiber diet and normal dose of Miralax daily with Dulcolax on Mon., Wed. and Friday at dinner time. (Adjusted diet a little, but not much) No BM's over the weekend, but he had 2-3 urine accidents, not normal for Nick. Someone mentioned that it could be due to the laxatives. Today we have green diarrhea x2, only when he stands to pee, and a little in the underwear. Nothing when he sits on the toilet.

Nick has missed 10 days of school, due to diarrhea or the fear of it this month! He had a great field trip today, but I kept him home, expecting and getting diarrhea! This cannot continue. Called GI again and now he is saying " colon neuropathy " is common in kids with Ds. And, of course, most of these messages from the docs are through the nurses. I wasn't in agreement, and expressed that. Why so suddenly when we had no major problems before this month? The nurse called back and we have an appt. for tomorrow. He has not " seen " a doc, through both of these clean outs.

I am sorry this is so long, but I wanted to give as many details as possible. What do you think? Nick does have the Ds-Autism dx. Thanks for any input!

Joni, Nick's mom

Nick, 14, Ds-Autism

February 28, 2012

Joni,I have a daughter, Aubrey, 13, 14 in May that has similar problems. This is going to be fast so pardon errors!The burping could be GERD. Aub has silent GERD and one wouldn't know as she rarely throws up now. Because of her low muscle tone, her system is very, very slow and even with fiber to help sometimes she gets very constipated. When she was younger her stools would get very large and difficult to pass. Because of the pain she developed a condition called "Psychogenic Constipation." She could hold for days to avoid the trauma of toileting, so she has a generic suppository from CVS every day if needed to go. Some days

she can even hold with a suppository. It gets scary when you know there's waste in there that won't come out for days! You'll be surprised though, because when it finally does-it DOES!!! If xrays not showing a blockage? ASK!!!!If my daughter holds for too long and the stool gets larger, the softer stool can leak out around the enlarged rectal opening. (Encopresis?) That is the stage when we know we have to do the two day clean out process and start again...Your son's situation sounds even more complicated in that it sounds like there's different types of stool formations in his body maybe due to the nerve issues. maybe the reason for the wildly different types of bowel movements? Maybe diet is involved? Allergies? New stressors?Aubrey takes 3.5 mls of liquid Zantac (Ranitidine) 20 minutes before

breakfast and dinner...that helps calm her stomach. This is a genetic component as sister and I have same acid stomach issues...There are so many reasons for colon neuropathy even in typical children/adults...and that is a very complicated diagnosis and to get to the source of problem, even without the low tone issues...but think of it as fun, detective work!!! Seriously! You'll figure it out! :DUPON THE ADVICE OF A NEWLY ADDED DIETICIAN;Whole grain breads, though fibrous, hold on to liquids like a sponge and can cause blockage...eat in small amounts! Apples etc better source, but though it may work for you, it may not work for me?!?!?!She also told us to try adding a teaspoon (start with a tsp and go up slowly for best results) of PLUM SMART (I bought it at Walmart, it is made by Sunsweet prune co?)...we need to

determine the right amount and best time of day to give it to her so that she can go to potty after dinner when she is at home and most comfortable.We are going to start this during Spring Break-some Spring Break eh?!What has also helped Aubrey (and our whole family) somewhat is the addition of PROBIOTICS...I'd use Activia if I could afford it.If anything I've learned, gastros can often be the HARDEST DOCS to deal with! And let's face it, these discussions can get messy and embarrassing to us when we shouldn't feel that way. We are without a gastro now because I was send a report in error where I read him write "re the psychogenic constipation-this is a battle Mother will never win." Well, that was helpful. NOT! Be a proactive advocate and get the info you need without guilt! Thankfully, there's a new one in

town...but try and get an appointment here in Hawai'i!Email me off-list anytime! You can do this! It is hopefully TEMPORARY!!!!Desi To: Sent: Tuesday, February 28, 2012 9:29 AM Subject: Re: Burping, diarrhea, constipation, Please Help!!!

Joni: Has your son been evaluated for GERD?LizMom to Tori, 12 yo

We have had burping (to the point of spitting up) issues for almost 2 years.

Now we have been having diarrhea problems for the last month. Thurs. 2/9 was the 3rd time this happened. At school on 2/9 he had a "regular" BM, then he had a semi regular BM., within an hour he had diarrhea. At this point they sent him home, where he had another diarrhea within and hour. When the 3rd round occurred, I consulted with our GI doc, who ordered an xray. The xray showed constipation, not a blockage. I don't know what the difference is. Doc recommended a clean out, a 238 grams of Miralax with 64 oz. of Gatorade. We did this on Sat. NO results. Called doc on Sat. night, got the other doc in the office and he was not concerned, said we could give him a suppository, or enema or wait till Monday and have another xray. Peds office recommended just waiting till Sunday AM as it could still work. No results. Xray on Monday showed constipation again! Wonder why? Another clean out ordered for Wed., this time with Dulcolax before and after

the Miralax. NO results by 8:30PM, so I also gave a suppository! I checked on Nick around 4AM and he was absolutely soaked! Some brown tinge in the diaper, but very little. The next day, he pooped more liquid, never any real "poop", and even that stopped by late afternoon. Was told to start low dairy, high fiber diet and normal dose of Miralax daily with Dulcolax on Mon., Wed. and Friday at dinner time. (Adjusted diet a little, but not much) No BM's over the weekend, but he had 2-3 urine accidents, not normal for Nick. Someone mentioned that it could be due to the laxatives. Today we have green diarrhea x2, only when he stands to pee, and a little in the underwear. Nothing when he sits on the toilet.

Nick has missed 10 days of school, due to diarrhea or the fear of it this month! He had a great field trip today, but I kept him home, expecting and getting diarrhea! This cannot continue. Called GI again and now he is saying "colon neuropathy" is common in kids with Ds. And, of course, most of these messages from the docs are through the nurses. I wasn't in agreement, and expressed that. Why so suddenly when we had no major problems before this month? The nurse called back and we have an appt. for tomorrow. He has not "seen" a doc, through both of these clean outs.

I am sorry this is so long, but I wanted to give as many details as possible. What do you think? Nick does have the Ds-Autism dx. Thanks for any input!

Joni, Nick's mom

Nick, 14, Ds-Autism

-- Liz DeSantis"The person who follows the crowd will usually get no further than the crowd. The one who walks alone is likely to find himself in places no one has ever been before."

"Creativity in living is not without its attendant difficulties, for peculiarity breeds contempt. And the unfortunate thing about being ahead of your time is that when people finally realize you were right, they'll say it was obvious all along."---Temple Grandin

"Anyone

can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength." - Reeves"Knowing trees, I understand the meaning of patience. Knowing grass, I can understand persistence." - Hal Borland

February 28, 2012

Joan,Appreciate your medical semantics sooo much better and the added info we've needed, too!!!! Wish I had seen your info, my reply would have been shorter!Mahalo!Desi To: Sent: Tuesday, February 28, 2012 9:50 AM Subject: Re: Burping, diarrhea, constipation, Please Help!!!

Hi - It's constipation. The burping, the reflux he feels (which causes pain) the bloating and the diarrhea. What happens is there is a bolus of waste that is having trouble moving down the Gut because it is so large or hard. The diarrhea is the waste product that is behind that bigger bolus. It gets over digested and slips around it. Given that he had a couple of sort of formed BMs before the diarrhea started, the waste product that is "stuck" is likely up high and having trouble moving down.

Miralax is not a laxative, it's a stool softener (despite it's name). You can give him a couple of doses a day to help soften that stuck stool. A suppository (ducoliax suppository) laxative effects stool that is lower in the gut. If you don't see results from a suppository in 30 minutes, you likely aren't going to.

An oral laxative may help - I'd suggest Senna-S - no more than two tabs. Senna is the gentlest laxative on the gut....doesn't cause the painful cramping.Drinking lots of fluids (water, juice---NOT pop) will help things some. Stay away from pop because it creates gas and bloating that will make him more uncomfortable. Activity (walking, swimming) will help things move along as well.

Once you clear him out, you may want to consider using Miralax a couple times a week or even daily to help prevent this again. Another option that is even more proactive is to add benefiber to foods. We're constantly dealing with this ever since we went gluten free for his celiac disease. GF is lower in fiber which makes it a challenge.

Watch his moods and behaviors. People are typically super uncomfortable and can be grouchy.This level of constipation also creates a reflux reaction (the spitting up), which is hard on his esophagus. In re-reading yoru note, I' would definitely recommend daily miralax once he is cleared out. When we dealt with a completely coonstipated boy (you could see no bones or organs for all the stool in him!), we did laxatives from top and bottom. This type of constipation will take a number of days to clear out. He's got feet and feet of stool in him. You want to be overwhelmed by the amount of stool that comes out of him to know that it's out - then the maintenance can begin. It's hard.

Joan

Joan Guthrie Medlen, MEd, RD

DownSyndromeNutrition.com

twitter: @jmedlen

We have had burping (to the point of spitting up) issues for almost 2 years.

Now we have been having diarrhea problems for the last month. Thurs. 2/9 was the 3rd time this happened. At school on 2/9 he had a "regular" BM, then he had a semi regular BM., within an hour he had diarrhea. At this point they sent him home, where he had another diarrhea within and hour. When the 3rd round occurred, I consulted with our GI doc, who ordered an xray. The xray showed constipation, not a blockage. I don't know what the difference is. Doc recommended a clean out, a 238 grams of Miralax with 64 oz. of Gatorade. We did this on Sat. NO results. Called doc on Sat. night, got the other doc in the office and he was not concerned, said we could give him a suppository, or enema or wait till Monday and have another xray. Peds office recommended just waiting till Sunday AM as it could still work. No results. Xray on Monday showed constipation again! Wonder why? Another clean out ordered for Wed., this time with Dulcolax before and after

the Miralax. NO results by 8:30PM, so I also gave a suppository! I checked on Nick around 4AM and he was absolutely soaked! Some brown tinge in the diaper, but very little. The next day, he pooped more liquid, never any real "poop", and even that stopped by late afternoon. Was told to start low dairy, high fiber diet and normal dose of Miralax daily with Dulcolax on Mon., Wed. and Friday at dinner time. (Adjusted diet a little, but not much) No BM's over the weekend, but he had 2-3 urine accidents, not normal for Nick. Someone mentioned that it could be due to the laxatives. Today we have green diarrhea x2, only when he stands to pee, and a little in the underwear. Nothing when he sits on the toilet.

Nick has missed 10 days of school, due to diarrhea or the fear of it this month! He had a great field trip today, but I kept him home, expecting and getting diarrhea! This cannot continue. Called GI again and now he is saying "colon neuropathy" is common in kids with Ds. And, of course, most of these messages from the docs are through the nurses. I wasn't in agreement, and expressed that. Why so suddenly when we had no major problems before this month? The nurse called back and we have an appt. for tomorrow. He has not "seen" a doc, through both of these clean outs.

I am sorry this is so long, but I wanted to give as many details as possible. What do you think? Nick does have the Ds-Autism dx. Thanks for any input!

Joni, Nick's mom

Nick, 14, Ds-Autism

February 28, 2012

Is he on gf/cf or any other kindaa diet???if ys then he might had an accidental

intake in school and it'll take a while to clear out....

-original message-

Subject: Burping, diarrhea, constipation, Please Help!!!

Date: 28/02/2012 10:22 pm

We have had burping (to the point of spitting up) issues for almost 2 years.

Now we have been having diarrhea problems for the last month. Thurs. 2/9 was the

3rd time this happened. At school on 2/9 he had a " regular " BM, then he had a

semi regular BM., within an hour he had diarrhea. At this point they sent him

home, where he had another diarrhea within and hour. When the 3rd round

occurred, I consulted with our GI doc, who ordered an xray. The xray showed

constipation, not a blockage. I don't know what the difference is. Doc

recommended a clean out, a 238 grams of Miralax with 64 oz. of Gatorade. We did

this on Sat. NO results. Called doc on Sat. night, got the other doc in the

office and he was not concerned, said we could give him a suppository, or enema

or wait till Monday and have another xray. Peds office recommended just waiting

till Sunday AM as it could still work. No results. Xray on Monday showed

constipation again! Wonder why? Another clean out ordered for Wed., this time

with Dulcolax before and after the Miralax. NO results by 8:30PM, so I also gave

a suppository! I checked on Nick around 4AM and he was absolutely soaked! Some

brown tinge in the diaper, but very little. The next day, he pooped more

liquid, never any real " poop " , and even that stopped by late afternoon. Was

told to start low dairy, high fiber diet and normal dose of Miralax daily with

Dulcolax on Mon., Wed. and Friday at dinner time. (Adjusted diet a little, but

not much) No BM's over the weekend, but he had 2-3 urine accidents, not normal

for Nick. Someone mentioned that it could be due to the laxatives. Today we

have green diarrhea x2, only when he stands to pee, and a little in the

underwear. Nothing when he sits on the toilet.

Nick has missed 10 days of school, due to diarrhea or the fear of it this month!

He had a great field trip today, but I kept him home, expecting and getting

diarrhea! This cannot continue. Called GI again and now he is saying " colon

neuropathy " is common in kids with Ds. And, of course, most of these messages

from the docs are through the nurses. I wasn't in agreement, and expressed

that. Why so suddenly when we had no major problems before this month? The

nurse called back and we have an appt. for tomorrow. He has not " seen " a doc,

through both of these clean outs.

I am sorry this is so long, but I wanted to give as many details as possible.

What do you think? Nick does have the Ds-Autism dx. Thanks for any input!

Joni, Nick's mom

Nick, 14, Ds-Autism

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February 29, 2012

We noticed from a young age that Jackie was often constipated. At that time, (maybe around age 3?) our pediatrician recommended white grape juice.

After many years (Jackie is now 11), my husband and I have it down to a science.

Every day, we give her a glass of white grape juice mixed with water (about 1/3 water, 2/3 juice). We keep tabs on when she has a BM and if it's been more than one day, we give her the white grape juice "straight up" (no water) and usually within a few hours we have results. It's amazing to see this thing work the way it does. If we go more than 2-3 days without giving her white grape juice, she gets backed up and the stool is hard and very uncomfortable for her to pass. I don't know if this will work for anyone else but it really helped Jackie. White grape juice is liquid gold in our house LOL

To: " " < > Sent: Tuesday, February 28, 2012 3:05 PMSubject: Re: Burping, diarrhea, constipation, Please Help!!!

Joni,

I have a daughter, Aubrey, 13, 14 in May that has similar problems. This is going to be fast so pardon errors!

The burping could be GERD. Aub has silent GERD and one wouldn't know as she rarely throws up now. Because of her low muscle tone, her system is very, very slow and even with fiber to help sometimes she gets very constipated.

When she was younger her stools would get very large and difficult to pass. Because of the pain she developed a condition called "Psychogenic Constipation." She could hold for days to avoid the trauma of toileting, so she has a generic suppository from CVS every day if needed to go. Some days she can even hold with a suppository. It gets scary when you know there's waste in there that won't come out for days! You'll be surprised though, because when it finally does-it DOES!!! If xrays not showing a blockage? ASK!!!!

If my daughter holds for too long and the stool gets larger, the softer stool can leak out around the enlarged rectal opening. (Encopresis?) That is the stage when we know we have to do the two day clean out process and start again...

Your son's situation sounds even more complicated in that it sounds like there's different types of stool formations in his body maybe due to the nerve issues. maybe the reason for the wildly different types of bowel movements? Maybe diet is involved? Allergies? New stressors?

Aubrey takes 3.5 mls of liquid Zantac (Ranitidine) 20 minutes before breakfast and dinner...that helps calm her stomach. This is a genetic component as sister and I have same acid stomach issues...

There are so many reasons for colon neuropathy even in typical children/adults...and that is a very complicated diagnosis and to get to the source of problem, even without the low tone issues...but think of it as fun, detective work!!! Seriously! You'll figure it out!

UPON THE ADVICE OF A NEWLY ADDED DIETICIAN;

Whole grain breads, though fibrous, hold on to liquids like a sponge and can cause blockage...eat in small amounts! Apples etc better source, but though it may work for you, it may not work for me?!?!?!

She also told us to try adding a teaspoon (start with a tsp and go up slowly for best results) of PLUM SMART

(I bought it at Walmart, it is made by Sunsweet prune co?)...we need to determine the right amount and best time of day to give it to her so that she can go to potty after dinner when she is at home and most comfortable.

We are going to start this during Spring Break-some Spring Break eh?!

What has also helped Aubrey (and our whole family) somewhat is the addition of PROBIOTICS...I'd use Activia if I could afford it.

If anything I've learned, gastros can often be the HARDEST DOCS to deal with! And let's face it, these discussions can get messy and embarrassing to us when we shouldn't feel that way. We are without a gastro now because I was send a report in error where I read him write "re the psychogenic constipation-this is a battle Mother will never win." Well, that was helpful. NOT! Be a proactive advocate and get the info you need without guilt! Thankfully, there's a new one in town...but try and get an appointment here in Hawai'i!

Email me off-list anytime! You can do this! It is hopefully TEMPORARY!!!!

Desi

To: Sent: Tuesday, February 28, 2012 9:29 AMSubject: Re: Burping, diarrhea, constipation, Please Help!!!

Joni: Has your son been evaluated for GERD?LizMom to Tori, 12 yo

We have had burping (to the point of spitting up) issues for almost 2 years.Now we have been having diarrhea problems for the last month. Thurs. 2/9 was the 3rd time this happened. At school on 2/9 he had a "regular" BM, then he had a semi regular BM., within an hour he had diarrhea. At this point they sent him home, where he had another diarrhea within and hour. When the 3rd round occurred, I consulted with our GI doc, who ordered an xray. The xray showed constipation, not a blockage. I don't know what the difference is. Doc recommended a clean out, a 238 grams of Miralax with 64 oz. of Gatorade. We did this on Sat. NO results. Called doc on Sat. night, got the other doc in the office and he was not concerned, said we could give him a suppository, or enema or wait till Monday and have another xray. Peds office recommended just waiting till Sunday AM as it could still work. No results. Xray on Monday showed constipation again! Wonder why?

Another clean out ordered for Wed., this time with Dulcolax before and after the Miralax. NO results by 8:30PM, so I also gave a suppository! I checked on Nick around 4AM and he was absolutely soaked! Some brown tinge in the diaper, but very little. The next day, he pooped more liquid, never any real "poop", and even that stopped by late afternoon. Was told to start low dairy, high fiber diet and normal dose of Miralax daily with Dulcolax on Mon., Wed. and Friday at dinner time. (Adjusted diet a little, but not much) No BM's over the weekend, but he had 2-3 urine accidents, not normal for Nick. Someone mentioned that it could be due to the laxatives. Today we have green diarrhea x2, only when he stands to pee, and a little in the underwear. Nothing when he sits on the toilet.Nick has missed 10 days of school, due to diarrhea or the fear of it this month! He had a great field trip today, but I kept him home, expecting and getting diarrhea! This

cannot continue. Called GI again and now he is saying "colon neuropathy" is common in kids with Ds. And, of course, most of these messages from the docs are through the nurses. I wasn't in agreement, and expressed that. Why so suddenly when we had no major problems before this month? The nurse called back and we have an appt. for tomorrow. He has not "seen" a doc, through both of these clean outs.I am sorry this is so long, but I wanted to give as many details as possible. What do you think? Nick does have the Ds-Autism dx. Thanks for any input!Joni, Nick's momNick, 14, Ds-Autism--

Liz DeSantis"The person who follows the crowd will usually get no further than the crowd. The one who walks alone is likely to find himself in places no one has ever been before.""Creativity in living is not without its attendant difficulties, for peculiarity breeds contempt. And the unfortunate thing about being ahead of your time is that when people finally realize you were right, they'll say it was obvious all along."---Temple Grandin

"Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength." - Reeves

"Knowing trees, I understand the meaning of patience. Knowing grass, I can understand persistence." - Hal Borland

February 29, 2012

Hi Joni:

My daughter, Milly, is 24 years old and has had issues with constipation since

she was a baby. I remember my poor husband (I just couldnt'do it!) giving her a

suppository when she was just 1 month old!

I've been very fortunate to have a wonderful GI specialist who deals with many

people with DS and other special needs. Years ago, he explained to me in

details about the " poop train " , much as how Joan describes it. I would treat

her for constipation, then stop because I thought she had diarrhea, but that is

not what it was, she was still constipated, the loose stool was moving around

the main hard stool.

He instructed me to give Milly enough Miralax (here we call it Lax-a-Day) to

reduce her poop to liquid (i.e. lots of liquid) to clean out her system, and

after that (VERY important) to give her enough of it to result in a BM at least

ONCE A DAY for SIX MONTHS. this is to give the bowel time to regain its

elasticity and appropriate size (the constant constipation causes the bowel to

stretch out). We now manage her constipation with the Lax-a-day, a fiber-rich

diet, and, if she has not had a bm for more than 2 days, we add Lactulose for a

day. It's a constant issue, and will always be an issue for her. It's just how

she is made - low muscle tone (the bowel is a muscle), lack of sufficient

exercise, her prescribed meds. Note: the more Miralax we give her, the more

liquid she should drink, or it will not work the way it should.

Excess gas is also a constant problem, she swallows a lot of air, we give her

GAS=X for that, 3 times daily, plus she now takes Lansoprasole for GERD. There

is no specific treatment for excess gas (at least not any that I would want to

undertake!).

I also find that when she is gassy, or has some menstrual spotting, or really

needs to pee, that her signals get " crossed " , and she doesn't know what to let

go first! It stresses her out, and she holds everything in, it's a tough

process and I can't explain it to her.

I do like some of the other ideas from other parents! I'll have to try the

white grape juice for sure.

Sue, Mom to Milly, DS + PDD-NOS

>

> Â

> >We have had burping (to the point of spitting up) issues for almost 2 years.

> >Now we have been having diarrhea problems for the last month. Thurs. 2/9 was

the 3rd time this happened. At school on 2/9 he had a " regular " BM, then he had

a semi regular BM., within an hour he had diarrhea. At this point they sent him