Advice Desparately Needed for a 3 YO DS Digestive System

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Advice Desparately Needed for a 3 YO DS Digestive System
« on: April 13, 2008, 08:52:50 PM » by AndysJess

One of my good friends has a 3 yo ds with major gut issues. When he was five days old, a kink was discovered in his intestines. They had to cut the damaged portion out and he had a colostomy (sp?) bag until he was almost a year old, when another surgery was performed to knit his intestines back together. Of course, he has had nothing but trouble since then. For at least a year, my friend was having to do at least two enemas a day on her little boy. It has been one thing after another.
Anyways, she called me last night for some advice. Basically, it seems that the portion of his gut that is missing is the one that either produces or stores the bacteria needed for digestion. So, obviously, it has to be replaced. Whatever they are giving him has stopped working. She told me that he usually has a two week cycle. He will be ok for two weeks then have a couple of days or so where he is in constant pain. Those couple of days has now turned into over two weeks now. She is trying to get a referral to a nutritionalist to try to adjust his diet to help.
Last night, she was desparate for some other option. I recommended Tummy Tune-Up and lots of fiber...limited sugar and yeast. It seemed logical to me that if his body is not producing bacteria on it's own, that he would be in a constant battle against candida.
So, does anyone have any other advice or recommendations? This is a desparate situation. Options the medical field has to offer seem to have been exhausted. This poor little boy struggles constantly with his digestion. His body also lost whatever it is that gives him the urge to push...he takes laxatives every day.

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Helpmeet to Andy for over 10 years. Mama to Drew, Dylan, Cullen & Avery...new baby due in May 2010

Re: Advice Desparately Needed for a 3 YO DS Digestive System
« Reply #1 on: April 13, 2008, 09:32:54 PM » by MommyGus

I don't have any medical advice. I wish I knew what to do to help him. But I just wanted you to know our family is praying for him and his family.
In HIM!
MommyGus

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4yo DD: "Mom can I have a cookie?"
MommyGus: (being silly) "Say 'You are the best mom in the whole world'"
4yo DD: (being very sweet) "I love you Mom...In the best world...I love you"

Re: Advice Desparately Needed for a 3 YO DS Digestive System
« Reply #2 on: April 13, 2008, 09:54:10 PM » by CountyCork

Gluten trouble? Ask Yooper, she'd know!
Hope they get some answers, it's so sad to see little ones suffer!

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Re: Advice Desparately Needed for a 3 YO DS Digestive System
« Reply #3 on: April 13, 2008, 10:04:03 PM » by DHW

You can find information about his condition by googling Short Bowel Syndrome or Short Gut Syndrome. There are many aspects to this condition, but invariably malnutrition is a side effect. He is probably deficient in quite a few nutrients. Lab work could be ordered and then probably IV drips would be the most efficient way to replace the missing nutrients.

I was just doing some reading on this because of this blog: www.samuelbackus.com. In his case, he also had a tremendous impaction that just cleared this past week. Note: diarrhea can be a symptom of constipation or impaction - only the liquids can pass through. He also had an ileus (the intestines become paralyzed temporarily) and was quite ill and in awful pain. His mom is using breastmilk to heal his gut.

My heart goes out to this little fella and his mom, AndysJess. She will need to be a warrior on his behalf to make sure he finds healing. Praying.

« Last Edit: April 13, 2008, 10:42:31 PM by DHW »
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