Zelnorm

[Guest guest]

Hi all,

We just got a prescription of Zelnorm and was wondering if anyone has tried this

with their child? Any problems, successes or side effects?

Thanks,

Kathy H.

[Guest guest]

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