mic blockage

[Guest guest]

Hi Laurie,

Are you seeing a GI specialist? gets constipated like that and it

can go on for days. That's why we started the Miralax...it is a stool softener

and laxative. It does take a few days to work but once it starts working it

keeps working. You just have to keep giving it to them. sweats and

shakes when he has a bowel movement. His doctor used to tell me he was

" withholding " a bm because he knew it would hurt. That may have been true at one

time

but I can tell when he's trying. I can see when he " pushes " that it goes up

more than it goes down. He hiccups and gags sometimes before he actually

poops. With the pseudo-obstruction disorder, his bowel doesn't have the proper

motility. If you think of it like a worm inching along, instead his kind of

goes

back and forth instead of moving along the way it's supposd to. Maybe

something like that is happening to Mic. You might ask your doctor what he

thinks.

Hyman is a doctor that specializes in pediatric gastrointestinal

motility disorders. He has published several papers and you can access many of

them

by just typing his name and pseudo-obstruction or gastrointestinal disorders

in any search engine [like Yahoo]. Your doctor might be interested.

Terry

[Guest guest]

In a message dated 1/24/2004 7:42:24 AM Eastern Standard Time,

mick8_7@... writes:

..Anyway, his blockage was soft, I have never seen it soft and he couldnt even

push it out soft.I was shocked.He cried and cried and sweating and took along

time to get out.

Oh Laurie!!! That poor baby!!! I just hope this all gets solved quick!!!!

Donna

[Guest guest]

Hi Laurie,

I know that the info for Miralax says to use for only two weeks. But, Dr.

Hyman is the one who told me about it and he knows . He said it was

absolutely safe to use indefinitely given 's GI history and problems.

Pseudo-obstruction usually is more a matter of " ruling out " other problems at

first. had several surgeries because they [the doctors, mostly

surgeons]

were so convinced that there must be an obstruction or some other anomaly that

could be corrected surgically. There wasn't. Each surgery was a failure in

that it did nothing to improve his GI situation, motility-wise. Finally,

Cisapride was introduced by Janssen Labs as a motility drug and was available on

a

" compassionate need " basis only before it was approved. Our GI doc got

in the program and he started taking it. It was a godsend! His

motility

improved enough to where we could give him small feedings of a special formula

every couple of hours into his g-tube instead of him having to be hooked up to

an enteral feeding pump all day. Cisapride was finally approved [as

Propulsid] and he took it for several years until Janssen took it off the

American

market because so many doctors were prescribing it for people without checking

to

see what other drugs they were taking. Propulsid interacted with certain

other drugs and there were a few fatalities. People started suing and so they

pulled it off the market. It is still available in Canada, Mexico, Europe and

Asia. We keep a supply for emergencies [occasionally 's GI system stops

working altogether] that we get from Mexico. While the Cisapride/Propulsid

helped with the motility as far as emptying his stomach, it didn't do a lot for

his pooping. That has always been a problem. Dr. Hyman did extensive

testing on when he was very young and determined that it was

pseudo-obstruction syndrome. His bowel acts as though it is obstructed, but it

is not.

Eventually, after stool softeners, laxatives, and enemas, he would produce a

bowel

movement, but it took a massive amount of pain & effort and was horrible for

him. The Miralax has definitely made a positive difference but it is not a

cure. If your doctor thinks there is any possibility that Mic may have this or

something similar, email me privately and I will share whatever information I

have with you. Sometimes these things are more a matter of being " managed "

rather than cured, if you know what I mean.

Terry