eosinophilic gastroenterits related to mito?

April 11, 2002

Hi all. A quick update on Jessalyn - her reflux symptoms began to

worsen dramatically in early March and she was maxed out on all

meds. Finally, after she had lost another pound, her Ped GI decided

the fundo and g-tube placement was the only way to go. She had the

surgery on March 22 and is currently doing better after a very rough

couple of weeks in between. She is gaining 1/2 lb/week and I am so

excited! Her geneticist has given her the diagnosis of mitocondrial

myopathy as a starting point. He had another muscle biopsy done at

the same time as the fund/g-tube surgery to check for specific enzyme

deficiencies. Hopefully, we will get a more specific diagnosis

soon.

I am somewhat dissapointed in the results of the fundo. Jessalyn has

always been in extreme pain and I assumed that it was all due to the

reflux. Unfortunately that is not the case. She has still been

experiencing some sort of GI pain that I can't account for. She is

on Neocate only tube fed - bolus during the days and continuous at

night. Her pain doesn't seem to have a pattern except that it is

worse when she has to have a BM or pas gass. Her stools are loose

and watery with a lot of mucous. I read a post on the g-tube site

about a Mom who's son has eosinophilic gastroenterits. I also

noticed this disorder in the symptoms list in the survery UMDF sent

me to complete for Jessalyn. So I guess this disorder must have some

sort of association with mito? Am I right? Does anyone have a child

diagnosed w/ EG or a related condition? The symptoms I have read

about do seem to fit Jessalyn quite well and I would like to take

this to my Ped, but from past experience I know I need to have a

pretty good case made in advance or she will just dismiss my idea.

If EG is associated w/mito in some cases that might help convince her

to investigate it. Thanks in advance for any help.

, Mom to Jessalyn (6 mos old w/mitochondrial myopathy and GI

pain of unknown cause)

April 12, 2002

In a message dated 4/11/02 8:56:15 AM Pacific Daylight Time,

rebeccap@... writes:

<< Does anyone have a child

diagnosed w/ EG or a related condition? >>

Hi ,

(11 years old) was diagnosed with eosinophilic gastroenteritis 2 years

ago and he was placed on Gastrocrom (liquid cromolyn sodium) 4x/day. It has

been a miracle drug for him. Not a single GI/stomach bleed since he went on

the Gastrocrom. He still takes Nexium (was on Prilosec), but I'm going to

ask about trying him off that, because since he started the Bicitra and the

low pro/high complex carb diet for the mitochondrial utilization disorder, he

hasn't been noticing any reflux at all!! (He doesn't have a G tube, but had

a fundo at age 4, and has had many episodes of recurrent reflux since the

fundo.) BTW, also has myopathy, but they don't know the cause..if

it's mitochondrial myopathy, congenital myopathy or if it is related to the

late diagnosis of the ketone utilization disorder.

Hope this helps.

Dena

April 12, 2002