Re: Zelnorm

[Guest guest]

Hi Kathy-- I do not know much about zelnorm in kids...so I tried

googling it as " my daughter takes zelnorm " just to see what came up

and I did find one message on it, and then stopped looking because I

have to go make lunch right now... but anyway, here is the msg:

and most take it twice a day, 30 min before breadfast and 30 minutes

before last meal of the day. But, the frequency and the DOSEAGE

really varies greatly among individuals. (See other posts on the 5-

HT4 board) For example, my daughter takes only 1/4 tablet, sometimes

only once a day. As someone else on this board has

stated: " sometimes with Zelnorm, less is more. " Good luck.

Another idea is Bethanecol, as it has increased gut motility as a

side effect.

Zelnorm is not fda approved for kids, and I do not know if

bethanecol is or isn't.

I wish we knew what caused that bloating with miralax. That doesn't

happen to everyone but it does happen to a good number of people and

I'd love to know why.

W

>

> After 5 weeks off of Miralax, Abby became self-injurious and

impacted. I had to just put her

> back on it. She started to go again and the behavior got better.

Here is my question. Off of the

> Miralax her tummy went flatter and looked more normal (even though

she wasn't having very many

> bowel movements). On the Miralax even though she is going daily

her stomach is HUGE, bloated and

> looks abnormal. I have tried everything. Does anyone know about

Zelnorm. Is this safe? I think her

> C. issue does come from a nerve problem or from the muscle issue.

Any comments or help is very

> appreciated.

> Kathy H.

>

[Guest guest]

Hi Kathy,

I have two kids on Zelnorm (one of those is

on Miralax at high doses, as well as Dulcolax too) and thus far we have

not had any obvious side effects or problems. My oldest went on it

first (he's the one on the other meds too) and we saw some initial success

with it, but like everything else we've tried, the improvement seemed to

subside to some extent. However, having said that, Manometry testing

actually showed that the Zelnorm seems to be regulating the contractions

through the colon and his problems are now primarily in the rectum.

His issues have previously been in the ascending and transverse colon.

So while it appeared we had lost the effectiveness, internally it seems

to be improving things some.

Hope this helps.

-- ~~BIG hugs~~

Kass, proud mom to Chance(13-Mito), Madison(9-Mito),

and Abigail(8-Mito)

McNair

Family Updates

"Life is not measured by the breaths we

take, but by the moments that take our breath away" ~Unknown

Hudson wrote:

Hi all,We just got

a prescription of Zelnorm and was wondering if anyone has tried thiswith

their child? Any problems, successes or side effects?

Thanks,Kathy H.

[Guest guest]

Hi Kass, My daughter is on Miralax but Dr. DeMio agreed to try this with her to see if we can

try once again to wean it down. Feel like she has a contraction/motility problem and it could

help. It comes in 6 mg but will try half to start and then work up. Maybe try to wean down the Miralax

if and when this kicks in. Can you elaborate on the Manometry testing?

Never heard of that. Abby has UC but have not done any other kind of testing other than having her

scoped.

Thank you for the ((((((hugs))))))

back at ya !

Kathy

Re: Zelnorm

Hi Kathy, I have two kids on Zelnorm (one of those is on Miralax at high doses, as well as Dulcolax too) and thus far we have not had any obvious side effects or problems. My oldest went on it first (he's the one on the other meds too) and we saw some initial success with it, but like everything else we've tried, the improvement seemed to subside to some extent. However, having said that, Manometry testing actually showed that the Zelnorm seems to be regulating the contractions through the colon and his problems are now primarily in the rectum. His issues have previously been in the ascending and transverse colon. So while it appeared we had lost the effectiveness, internally it seems to be improving things some. Hope this helps. -- ~~BIG hugs~~ Kass, proud mom to Chance(13-Mito), Madison(9-Mito), and Abigail(8-Mito) McNair Family Updates "Life is not measured by the breaths we take, but by the moments that take our breath away" ~Unknown Hudson wrote:

Hi all,We just got a prescription of Zelnorm and was wondering if anyone has tried thiswith their child? Any problems, successes or side effects? Thanks,Kathy H.

[Guest guest]

What is UC? I'd Stop the mira lax at once. Hudson wrote: Hi Kass, My daughter is on Miralax but Dr. DeMio agreed to try this with her to see if we can try once again to wean it down. Feel like she has a contraction/motility problem and it could help. It comes in 6 mg but will try half to start and then work up. Maybe try to wean down the

Miralax if and when this kicks in. Can you elaborate on the Manometry testing? Never heard of that. Abby has UC but have not done any other kind of testing other than having her scoped. Thank you for the ((((((hugs)))))) back at ya ! Kathy Re: Zelnorm Hi Kathy, I have two kids on Zelnorm (one of those is on Miralax at high doses, as well as Dulcolax too) and thus far we have not had any obvious side effects or problems. My oldest went on it first (he's the one on the other meds too) and we saw some initial success with it, but like everything else we've tried, the improvement seemed to subside to some extent. However, having said that, Manometry testing actually showed that the Zelnorm seems to be regulating the contractions through the colon and his problems are now primarily in the rectum. His issues have previously been in the ascending and transverse

colon. So while it appeared we had lost the effectiveness, internally it seems to be improving things some. Hope this helps. -- ~~BIG hugs~~ Kass, proud mom to Chance(13-Mito), Madison(9-Mito), and Abigail(8-Mito) McNair Family Updates "Life is not measured by the breaths we take, but by the moments that take our breath away" ~Unknown Hudson wrote: Hi all,We just got a prescription of Zelnorm and was wondering if anyone has tried thiswith their child? Any problems, successes or side effects? Thanks,Kathy H.

[Guest guest]

Kass wrote: Hi Again Kathy :-) I feel for you trying to wean off the Miralax!! I have heard that the Zelnorm can be a wonder drug for some kids/people and make a real difference. I heard from more than one person that if your not seeing results within a month or so, it's probably not going to work....just so you have some idea of how long you need to keep trying it. I'll be praying that it is exactly what your Abby

needs. How old is your Abby?? Chance is taking 6mg 2x/day (he weighs 120 lbs) and my Abby is taking 4mg 2x/day (she weighs about 70 lbs). Our GI based the dose on weight if that helps. The manometry testing is pretty incredible, though not a fun test to put our babies through. It's only available in 4 places in the country.....Cincinatti Children's, Hopkins (I think), Boston, and now here in Fort Worth, Tx (we are actually in Dallas, but see several docs in FW). Our GI is brand new here, from Cincinatti, and they set up the Manometry lab for him which is pretty huge because it's VERY costly machinery. Wonderful for us though because we thought there'd be no option but to go out of state and we've done so much of that already. The testing involves catheters that are either placed through the nose, down into and through

the stomach, and into the small intestine....or through the other end up into the large intestine. My Abby had the upper, while Chance had both the upper and lower at the same time. These catheters (about the size of a pH probe) are placed very carefully under anesthesia to ensure they are where they need to be. The catheters have small holes in them and when the testing takes place (24 hours after placement so anesthesia can wear off) saline is pushed through them. As the stomach and intestines contract, the holes are occluded, and the computer the catheters are connected to is able to read that information. The result is a graph that shows exactly how often and how effective the contractions are, whether the contractions are propagating (moving from the top to the bottom), as well as whether the issues are nerve or muscle related. The first two hours of the testing are done fasting, second two hours are done after they eat a meal

(so they can see what the contractions look like when food is introduced), and the final two hours they actually administer different medications (in our case they did Erythrimiacin for the upper testing and a laxative for the lower) to see what the GI tracts response is. It was NOT fun...pretty grueling really.....but we now know what parts of the kids GI tracts are not working and that in their case it's a nerve issue. This way we can make decisions about surgical options down the road and know, for example, that as severe as Abby's reflux is, if we did a nissan fundoplication we WILL cause more problems than we already have. We also have a little better idea what kinds of medications might help, as well as what kind of plan we need to have in place to try and stop the progression of things. We had tried virtually everything before doing this testing. Neither kiddo is

controlled even on massive doses of medication....not to mention the supplements we have them on, the typical things we all do for constipation, and chiropractic care weekly. I HATE the medications, and the GI ones are only a small part of all that they are on, but control is so vital for the kids to slow the progression of the disease they have. Madison will be seeing this new GI next month for the first time and we'll find out if he wants to do the testing on her also (I suspect the answer will be yes). Not looking forward to it, but very grateful it's available so we truly know what we're dealing with. Hope this helps!! -- ~~BIG hugs~~ Kass, proud mom to Chance(13-Mito), Madison(9-Mito), and Abigail(8-Mito) McNair Family Updates "Life is not measured by the breaths we take, but by the moments that take our breath away" ~Unknown Hudson wrote: Hi Kass, My daughter is on Miralax but Dr. DeMio agreed to try this with her to see if we cantry once again to wean it down. Feel like she has a contraction/motility problem and it couldhelp. It comes in 6 mg but will try half to start and then work up. Maybe try to wean down the Miralaxif and when this kicks in. Can you elaborate on the Manometry testing?Never heard of that. Abby has UC but have not done any other kind of testing other than having herscoped.Thank you for the ((((((hugs))))))back at ya

!Kathy