8-yr-old son miserable, HELP!

[Guest guest]

Hi, my name is Diane and I am new to this group (heard about it from the NY

Times article). My son is almost nine and has been on an adult daily dose of

Miralax since he was 2. At the time, his problem was just constipation, but we

couldn't seem to get it controlled any other way, so we finally started the

Miralax despite the warning that it was not for kids. I have tried repeatedly to

wean him off, but every time we have ended up with a cessation of pooping and a

traumatic cleanout before he can poop again!

In the intervening years, his gastro problems have just grown and grown. He

spent years having severe intestinal pains, sometimes so bad that I felt like I

was comforting a woman in hard labor (without any of the upsides of that!) Lots

of painful and explosive gas. Then he developed terrible reflux, which ruined

an entire summer, and only then became somewhat controlled by Prevacid. (He

recently went off after years of taking it daily and now the reflux is starting

to come back.) We seem to go through cycles of things being pretty good for a

period of months and then getting bad again.

Currently, our biggest problem symptom is the " need to poop " feeling. He will

feel an intense sensation of needing to poop, whether he does or not. I have

often wondered whether all these other symptoms are actually side effects of the

Miralax, or at least having such runny poops all the time.

He has had all the tests and the doctors say there is nothing physically wrong

with him. They say it is " psychological " or " behavioral, " and maybe it is, but

that doesn't mean he is not really suffering. He is already seeing a

psychologist for anxiety and was recently diagnosed as PDD-NOS. The folks at

Kennedy Krieger who diagnosed him tell me that gastro problems are extremely

common in PDD kids. They couldn't explain why. He does have lots of sensory

issues, and I wonder if his gastro problems are essentially a sensory problem?

He is supposed to start Occupational Therapy soon, but nobody has ever suggested

that it is supposed to help his gastro problems.

His last turn for the worse did coincide with both discontinuing Prevacid and

discontinuing probiotics, which he was taking both morning and night. His doctor

seemed to think that if he ate yogurt, the probiotics were unnecessary, and they

are SO expensive and not covered by insurance or even tax-deductible (being

OTC). Now I'm wondering if he should go back on?

I apologize for the length of this post. Please, if anyone has any experience

they would be willing to share, I would really appreciate it. Even if you don't

have answers or suggestions, it would help just to know that someone else is

having similar issues! We are feeling very alone with this.

Thanks so much,

Diane

[Guest guest]

Diane wrote: the probiotics were unnecessary, and they are SO expensive and not covered by insurance or even tax-deductible (being OTC). Now I'm wondering if he should go back on? It is my understanding, if your doctor prescribes, they are tax deductable, and I believe you can submit to your insurance company.Wellness Practioner's support this area. To: miralax Sent: Sun, May 27, 2012 9:32:08 PMSubject: 8-yr-old son miserable, HELP!

Hi, my name is Diane and I am new to this group (heard about it from the NY Times article). My son is almost nine and has been on an adult daily dose of Miralax since he was 2. At the time, his problem was just constipation, but we couldn't seem to get it controlled any other way, so we finally started the Miralax despite the warning that it was not for kids. I have tried repeatedly to wean him off, but every time we have ended up with a cessation of pooping and a traumatic cleanout before he can poop again!

In the intervening years, his gastro problems have just grown and grown. He spent years having severe intestinal pains, sometimes so bad that I felt like I was comforting a woman in hard labor (without any of the upsides of that!) Lots of painful and explosive gas. Then he developed terrible reflux, which ruined an entire summer, and only then became somewhat controlled by Prevacid. (He recently went off after years of taking it daily and now the reflux is starting to come back.) We seem to go through cycles of things being pretty good for a period of months and then getting bad again.

Currently, our biggest problem symptom is the "need to poop" feeling. He will feel an intense sensation of needing to poop, whether he does or not. I have often wondered whether all these other symptoms are actually side effects of the Miralax, or at least having such runny poops all the time.

He has had all the tests and the doctors say there is nothing physically wrong with him. They say it is "psychological" or "behavioral," and maybe it is, but that doesn't mean he is not really suffering. He is already seeing a psychologist for anxiety and was recently diagnosed as PDD-NOS. The folks at Kennedy Krieger who diagnosed him tell me that gastro problems are extremely common in PDD kids. They couldn't explain why. He does have lots of sensory issues, and I wonder if his gastro problems are essentially a sensory problem? He is supposed to start Occupational Therapy soon, but nobody has ever suggested that it is supposed to help his gastro problems.

His last turn for the worse did coincide with both discontinuing Prevacid and discontinuing probiotics, which he was taking both morning and night. His doctor seemed to think that if he ate yogurt, the probiotics were unnecessary, and they are SO expensive and not covered by insurance or even tax-deductible (being OTC). Now I'm wondering if he should go back on?

I apologize for the length of this post. Please, if anyone has any experience they would be willing to share, I would really appreciate it. Even if you don't have answers or suggestions, it would help just to know that someone else is having similar issues! We are feeling very alone with this.

Thanks so much,

Diane