Re: I NEED FEEDBACK PLEASE!!!--probably offtopic a little

[Guest guest]

I say off topic because my daughter isn't on the gfcf diet at this

point; I'm trying to decide whether we should try it. But while I'm sorry

you have this problem, I'm glad I'm not the only one. is 21, and

is actually pdd-nos rather than autistic. We fight a never-ending battle

with bm problems or something related. If she doesn't have them even for

a couple of days, or has very small ones, eventually she apparently

experiences a lot of pain, screams, bites her arm, and would bite me

repeatedly except that I've learned to be careful--she is generally very

affectionate toward me and obedient, so this isn't a temper

tantrum. Sometimes soaking in tub helps; sometimes prune juice; sometimes

magnesium citrate; sometimes nothing helps for quite a while. We've been

to the doctor repeatedly, and to two gastrointerologists; very difficult

since she can't tell them where it has hurt and I wouldn't be able to

transport her nor they to treat her during a full-blown episode. Did give

her halcyon once and took her to doctor asleep; just like Noah, " full of

poop " and she'd had magnesium citrate twelve hours before! No one wants

to run any tests, though we did do a colonoscopy--nothing abnormal. Under

doctor's prescription have tried lactulose, mniraLax, metamucil. No

lasting results; sometimes a treatment will work for her for a few days

and a few weeks, then bang--the cycle begins again. Have her on colon

green right now--just a natural product you can buy at a grocery store in

capsules, mostly tsilium (may not be spelling that right; I'm blind so I

don't see the labels unless I have someone spell them.) This has worked

the longest of anything; absolutely no episodes for nine weeks--usually

can't go more than three weeks at most without one. Then

gastrointerologist prescribed miralax; little or no bm but screaming on

and off for a full day within three days of starting it; doctor says it

couldn't have caused the problem, but the insert on the bottle indicates

abdominal cramping and pain as a side effect. Back to colon green; four

more good weeks, but this last week has been more difficult so afraid we

may be starting up again. I want to find our what is causing this and

treat it, not just keep switching to different laxatives; she has been

labeled ibs, but I think this just means they don't have the faintest idea

what's wrong. It's very discouraging because is a very happy

person who loves to listen to music, go shopping and push the cart, go to

church to " sing and praise the Lord some more " , go for walks, swing on her

porch swing--you get the idea! This problem has the potential for making

her life very narrow and miserable, because violent self-abusive and

aggressive episodes that can be safely handled at home can not be risked

in public. Oh, we've also experienced some throwing up--not necessarily

during episodes but when she isn't feeling well--the last six months, but

still the doctors have no suggestions for tests or treatment, other than

laxatives. And it isn't that I've overdone the laxatives; I haven't

wanted her body to become laxative dependent and have been very cautious,

and it bothers me when doctors present solutions involving giving

laxatives long-term that the label says should only be given for a few

days. Sorry, I know this isn't a " poop " list, but this is even somewhat

out of the scope of the normal ibs lists. Wasn't planning to mention it

here, but Trina's post just set me off. If any of you have any leads on

this, may owe you for her future enjoyment of life.

Cheryl