Re:Asenath in Hospital--Hello to LEah

[Guest guest]

Hello LEah

Thanks for your note. Tana also went into the hospital Saturday night and

is still in. We've had a terrible month. Tana has been in status seizures

for a month and is now under very heavy sedation and ventilator assistance

to stop the status seizures. We hope to begin to wean her off this stuff

tomorrow. Then we will be going out to kennedy Krieger hospital in

Baltimore, MD for a further workup on her metabolic problems. Hope your

family gets better soon too!!

Stacey Vogele,

Mom to Tana 3.5 (undiagnosed), Cristina 14, Kali, 12

Re: Upper GI/lower follow through results

Thanks. As with everything mito related, this is so complicated. We

don't have any suggestions from docs yet, his ped mentioned that we

might need to feed him easy to swallow foods but she is waiting to

hear from the motility specialist in Boston.

So do meds like Prevacid make digestion even harder by blocking

stomach acid? Would a fundo make it even harder for weak esophagus

muscles to get food into the stomach?

>Reglan and erythromycin are about the only meds available in the US that

>may increase motility. Some people have tried Zelnorm in females.

Propulsid

>is available in some areas for compassionate use. It has been linked to

long

>Q-T though.

>

>Prilosec, Prevacid, Nexium, Protonix, Aciphex, etc. don't stop

>reflux. They do

>nothing at all for reflux. That is not why they are prescribed. They are

>prescribed to increase the pH of stomach contents. This decreases the

>damage caused by stomach acids.

>

>As far as I know, the only thing that MAY stop reflux (other than

outgrowing

>baby reflux) is a fundoplication. This might not be the best thing

>in a kid with

>really slow motility and it does not always work--my daughter is testament

to

>that.

>

>I would try grinding food and see what happens with that. I would be

hesitant

>to give lots of water. That can actually cause harm with some motility

issues.

>

>What have your docs suggested?

>

>

>

>

>

>

>

>Please contact mito-owner with any problems or questions.

>

>