Re: Motility testing

[Guest guest]

,

son had both upper and lower motility studies done.

For the upper they place special tubing with probes every 1/2 inch down you

esophoagus into your stomach or thru your g tube as was son's case.

For the lower they do a colon prep and colonoscopy. They insert the tubing

after the colonoscopy. You have to keep the probes in for a long period of time

- In 's case it was a 24 hour but it may be different dependending on who

does it.

The probes measure the communication between the nerves and the muscles. In

's case his entire colon is neuropathied.

While the tubing is in they give your body a challenge of food, and

medication and observe if your body is reacting or not.

Also, in 's case we were not refused a compasionate use waiver for

Propulsid and one other medication (can't remember its name) because of his mito

and the potential for cardiomyopathy.

Hope this helps.

Laurel

[Guest guest]

,

son had both upper and lower motility studies done.

For the upper they place special tubing with probes every 1/2 inch down you

esophoagus into your stomach or thru your g tube as was son's case.

For the lower they do a colon prep and colonoscopy. They insert the tubing

after the colonoscopy. You have to keep the probes in for a long period of time

- In 's case it was a 24 hour but it may be different dependending on who

does it.

The probes measure the communication between the nerves and the muscles. In

's case his entire colon is neuropathied.

While the tubing is in they give your body a challenge of food, and

medication and observe if your body is reacting or not.

Also, in 's case we were not refused a compasionate use waiver for

Propulsid and one other medication (can't remember its name) because of his mito

and the potential for cardiomyopathy.

Hope this helps.

Laurel

[Guest guest]

,

son had both upper and lower motility studies done.

For the upper they place special tubing with probes every 1/2 inch down you

esophoagus into your stomach or thru your g tube as was son's case.

For the lower they do a colon prep and colonoscopy. They insert the tubing

after the colonoscopy. You have to keep the probes in for a long period of time

- In 's case it was a 24 hour but it may be different dependending on who

does it.

The probes measure the communication between the nerves and the muscles. In

's case his entire colon is neuropathied.

While the tubing is in they give your body a challenge of food, and

medication and observe if your body is reacting or not.

Also, in 's case we were not refused a compasionate use waiver for

Propulsid and one other medication (can't remember its name) because of his mito

and the potential for cardiomyopathy.

Hope this helps.

Laurel

[Guest guest]

Laurel,

Goodness. I don't think any of that sounds the least bit pleasant. How was he able to tolerate having probes left in and being sedated to have the scopes? Thanks for sharing.

[Guest guest]

,

He had to have general anesthesia for the scopes and colonoscopy which was

scary since we were from out of town. As far as tolerating the probes the tube

was thin and he had to lay still. They had lots of videotapes to watch and he

was so grogy from the anesthesia that he did fine. The worst part was the

anesthesiaologist and the fact that the hospital was in no way prepared for the

ketogenic diet.

Because his GI symptoms have spread through is gut into his espohogus our gi

wants him to go back next June and have them re-done. I really don't think

that we are going to do it.

Happy THanksgiving

Laurel

[Guest guest]

,

He had to have general anesthesia for the scopes and colonoscopy which was

scary since we were from out of town. As far as tolerating the probes the tube

was thin and he had to lay still. They had lots of videotapes to watch and he

was so grogy from the anesthesia that he did fine. The worst part was the

anesthesiaologist and the fact that the hospital was in no way prepared for the

ketogenic diet.

Because his GI symptoms have spread through is gut into his espohogus our gi

wants him to go back next June and have them re-done. I really don't think

that we are going to do it.

Happy THanksgiving

Laurel

[Guest guest]

,

He had to have general anesthesia for the scopes and colonoscopy which was

scary since we were from out of town. As far as tolerating the probes the tube

was thin and he had to lay still. They had lots of videotapes to watch and he

was so grogy from the anesthesia that he did fine. The worst part was the

anesthesiaologist and the fact that the hospital was in no way prepared for the

ketogenic diet.

Because his GI symptoms have spread through is gut into his espohogus our gi

wants him to go back next June and have them re-done. I really don't think

that we are going to do it.

Happy THanksgiving

Laurel

[Guest guest]

Hi Alison,

Miranda has had manometry done. They placed the probes through her G-tube stoma. This was done in the OR since she was also having an endoscopy done. They then hooked all these probes up to this machine and they watched it for hours, It was more then 8 hours...long test. They tried to get her to orally eat a bit but it just made her vomit. Then they ran a small amount of formula though the tube. All the reactions her stomach and intestines had were recorded on the machine. I don't think the test was painful, with the exception of having the probes placed, but thankfully she was sedated. I am not sure how they would do them without a Gtube. I would think maybe they would have to place them like a NG tube, through the nose. Here are descriptions from the Childrens Hospital In Pittsburgh, where Miranda had her testing. http://www.chp.edu/clinical/03motility_services.php

Hope this helps.

-- Motility testing

What does motility testing involve for those of you that have gone through it or your child has??? I've already had an upper GI and gastric emptying study. My motility probs are lower not upper.

Thanks so much. Please contact mito-owner with any problems or questions.

[Guest guest]

Hi Alison,

Miranda has had manometry done. They placed the probes through her G-tube stoma. This was done in the OR since she was also having an endoscopy done. They then hooked all these probes up to this machine and they watched it for hours, It was more then 8 hours...long test. They tried to get her to orally eat a bit but it just made her vomit. Then they ran a small amount of formula though the tube. All the reactions her stomach and intestines had were recorded on the machine. I don't think the test was painful, with the exception of having the probes placed, but thankfully she was sedated. I am not sure how they would do them without a Gtube. I would think maybe they would have to place them like a NG tube, through the nose. Here are descriptions from the Childrens Hospital In Pittsburgh, where Miranda had her testing. http://www.chp.edu/clinical/03motility_services.php

Hope this helps.

-- Motility testing

What does motility testing involve for those of you that have gone through it or your child has??? I've already had an upper GI and gastric emptying study. My motility probs are lower not upper.

Thanks so much. Please contact mito-owner with any problems or questions.

[Guest guest]

I know one thing they are doing for lower gastric motility testing for Maya next time we see GI is a rectal probe study. I think they called it rectal mamometry. It is to test lower GI motility in the lower half of the low GI, if that makes any sense. They are sedating her for it, but only because of her age. They explained it as a small balloon they insert and then test different pressures and contractility in different areas of the colon. She's having it done by her GI at CCF. Don't know if this helps or not.

Holly

[Guest guest]

Thanks Holly. Not really what I was wanting to hear, but thanks. I hope it isn't too unpleasant. I'll definately be thinking of Maya.