Re: JoEllen/gastro problems

[Guest guest]

Hi,

I didn't follow this original thread, but I wanted you to know that my

son, Asher, the non-PID kid in our house has gastroparesis and

intestinal dysmotility. He has mitochondrial disease and that's what

caused this.

If you want to know more, just email with Anne on the subject or check

out Asher's website at: www.caringbridge.org/fl/asher

I'm mostly a lurker on the PID board b/c my other son and my PID are in

good control. The mitochondrial disease is much more difficult for my

family.

Good luck,

Anne R

JoEllen/gastro problems

Jo Ellen,

I have gastroparesis which basically means that my stomach muscles do

not work properly. They use the gastric emptying test to diagnose

it. What you need to know about that test is that it is very

unreliable. You can have a normal test even if you have

gastroparesis. There are just too many variables. The symptoms you

are describing are exactly what I have. I suggest you see a motility

specialist to help find out what is going on. These type of G.I.

issues are as complicated and varies as immune deficiencies so you

need a specialest to figure things out.

Kim, mom to , CVID

This forum is open to parents and caregivers of children diagnosed with

a

Primary Immune Deficiency. Opinions or medical advice stated here are

the sole

responsibility of the poster and should not be taken as professional

advice.

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[Guest guest]

Kim, thank you for your help. I'm sure you can understand how frustrated we are

with the " unknown diagnosis. " How do I find a motility specialist? In

Richmond, VA, we have only a few ped. GI doctors. I have thought all along that

it is a motility issue. Chase has had these issues even as an infant. Did you

have the GI tracer capsule test (swallow capsule and then take a picture 5 days

later?) Is this a waste of time and money? Also, if you don't minds, would you

please share your medicine/treatment for this disease? Thanks again.

-------------- Original message --------------

From: " kaclight1 " <kaclight@...>

Jo Ellen,

I have gastroparesis which basically means that my stomach muscles do

not work properly. They use the gastric emptying test to diagnose

it. What you need to know about that test is that it is very

unreliable. You can have a normal test even if you have

gastroparesis. There are just too many variables. The symptoms you

are describing are exactly what I have. I suggest you see a motility

specialist to help find out what is going on. These type of G.I.

issues are as complicated and varies as immune deficiencies so you

need a specialest to figure things out.

Kim, mom to , CVID

This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to: /messages

[Guest guest]

Kim,

I know of three motility experts in the country. I think it's worth it

to go to one of them if you can afford it. Even for one visit so they

could consult with your local docs. We saw Dr. at Boston's

Tufts-NEMC/Floating Children's Hospital or Dr. DiLorenzo

at Columbus Ohio Children's Hospital and, then there's one in Kansas

City but I don't know his name but I can get it if you need it. They

actually have tests for the intestines to see how and where the

problem is. There are some medicines that help some people - zelnorm is

new and doesn't have nasty side effects; reglan is old and well known

but can have nasty side effects. Unfortunately, my son, Asher, motility

problems are so severe that he ended up with a g-tube and a cecostomy

tube (the cecostomy tube is to flush out his intestines once a day -

Asher literally got to the point he couldn't have a bowel movement w/o

an enema so we opted for the cecostomy tube rather than the colostomy

bag). Asher's motility issues are pretty severe.

Good luck,

Anne R

Re: JoEllen/gastro problems

Kim, thank you for your help. I'm sure you can understand how

frustrated we are

with the " unknown diagnosis. " How do I find a motility specialist? In

Richmond, VA, we have only a few ped. GI doctors. I have thought all

along that

it is a motility issue. Chase has had these issues even as an infant.

Did you

have the GI tracer capsule test (swallow capsule and then take a

picture 5 days

later?) Is this a waste of time and money? Also, if you don't minds,

would you

please share your medicine/treatment for this disease? Thanks again.

-------------- Original message --------------

From: " kaclight1 " <kaclight@...>

Jo Ellen,

I have gastroparesis which basically means that my stomach muscles do

not work properly. They use the gastric emptying test to diagnose

it. What you need to know about that test is that it is very

unreliable. You can have a normal test even if you have

gastroparesis. There are just too many variables. The symptoms you

are describing are exactly what I have. I suggest you see a motility

specialist to help find out what is going on. These type of G.I.

issues are as complicated and varies as immune deficiencies so you

need a specialest to figure things out.

Kim, mom to , CVID

This forum is open to parents and caregivers of children diagnosed with

a

Primary Immune Deficiency. Opinions or medical advice stated here are

the sole

responsibility of the poster and should not be taken as professional

advice.

To unsubscribe -unsubscribegroups (DOT)

To search group archives go to:

/messages