Re: Tammy- Scope issue/Darla

[Guest guest]

Darla,

At the time we did not have a mito diagnosis and was just a very sick little boy, and the GI felt there were "bigger fish to fry" than to deal with the GI issues. just made him very nervous. He was concerned about the anesthesia and the prep because they were going to do upper and lower. I don't think there is anything more than that.

Tammy

Darla Klein wrote:

Was the issue to do with the anesthesia? Is that what they felt he was too weak for or is there something more I should know about the procedure?Darla: mommy to: Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy,SID, dev. delays, asthma Zipporrah (7 mon.) Mito, strokes, SID, G-tube, asthma, trach issues, disautonomy, hypo & hypertonicity, migraines>>Reply-To: Mito >To: Mito >Subject: Re: Re:all-another ? about Cyclic vomiting ?>Date: Thu, 5 Aug 2004 19:23:38 -0700 (PDT)>>Darla,>>We did not do a pH probe or a scope. We were dealing with Gastro and Neuro >at the time and they all agreed was not strong enough

to do a scope. > was a pretty clear cut CVS kid. We did do serum immunocap testing >for allergies. They did other blood work which clearly showed Mito issues, >however at the time we were told it was normal. Sorry I don't have more >helpful info.>>Tammy-Madelaine and >>Darla Klein wrote:> To those who responded to my question (or others), how were your kids>diagnosed with cyclic vomiting? Did you go through the PH probe and scope?>Did you do other tests to confirm it?>>>>Darla: mommy to: Asenath (4) Mito, CNS Vasculitis, strokes, migraines,>seizures, G-tube, hypotonicity, disautonomy,SID, dev. delays, asthma>Zipporrah (7 mon.) Mito, strokes, SID, G-tube, asthma, trach issues,>disautonomy, hypo & hypertonicity,

migraines>>>>>> > >Reply-To: Mito > >To: Mito > >Subject: Re: Cyclic vomiting ?> >Date: Wed, 4 Aug 2004 22:12:30 EDT> >> >Darla,> >> > >To those who deal with cyclic vomiting, what do you see surrounding the> > >vomiting episode.> >> >I can almost always tell when Emilie is starting an episode. She> >definitely looks and acts different. She gets pale; that lasts for> >anywhere from 15 minutes to a couple of hours. Sometimes her eyes are> >dilated. During one streak where she threw up every day for a week, she> >ran a low-grade fever for about 15 minutes before throwing up. She will> >either be very quiet and drowsy or agitated and combative, saying things> >that don't

make a lot of sense. After vomiting 1-3 times, she's usually> >back to normal in less than a half hour and can eat a meal and keep it> >down fine. She looks and acts like nothing happened.> >> >> >> > -- Mom to:> >Emilie (18), mito--complex IV, cp, ld> >Kaitlin (18), cp, asthma, a few autonomic symptoms> >Ian (22) migraines> >...and wife to Tim, who has a heart of gold> >> >> >> >> >> >Please contact mito-owner with any problems or questions.> >