Re:Stacey V.

[Guest guest]

Sounds like it hasn't been the best of weeks for you as well. Thanks

for encouraging my daughter while I was away. We tried to keep her updated,

but didn't have much time to inform her of everything that was happening and

my husband didn't want to talk about it with the kids too much.

Best wishes for your daughter. I hope she is able to get through the

rough time without further issues and that your coming trip will be

fruitful. Take care of yourself. We all know how tiring hospital stays can

be for sure. Keep us updated.

See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into

Mito using a photo collage of my girls at www.heartbeatsformito.org

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...

Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

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.

> >

> >