Hello all! I just have one silly question today. Gracie is having her G tube changed into the Mic Key button on Tues. Of Course she has to make this ...
Hi guys, The kids are very excited. They just got a call inviting them to be on the MDA Telethon. I am excited because it means that Mito will get told ...
It would be nice if it were only Neocate caused. The only thing with that is that she was doing this BEFORE the Neocate as well. I will definitely talk with...
Back from Mayo...No GI consult for Cole. LP's were a terrible experience for the boys. I do not know what they used to sedate them but my kids are a complete...
Just take a little time and pass this on .Let the Word shine on. Note: forwarded message attached. Just take a little time and pass this on .Let the Word shine...
Has anyone seen specific memory problems in their kids (or themselves)? Where they suddenly can't remember specific words, or recognize specific things, that...
Can anyone recommend a stimulant laxative for my chronically constipated five year old son? I asked the GI about prescribing him Miralax, but he says it's a...
I just got a call from Fran, Dr. Cohens nurse. I had called regarding Gracies sleeping problems the last week or so. (She cannot stay asleep, and is waking...
One of the sleep study results Zipporrah had was that she appears to have restless leg syndrome and the doc said it often occurs due to low iron levels. He...
I am not sure what all information concerning strokes you want to know but I can tell you some things and if you want more info, let me know. (MORE SPECIFICS...
Kilbride, I have mentioned on this list before that years ago when we first put Adrian on D.M.G. - DIMYTHELGLYCINE, one of the first things we notice was a...
I am wondering if any of you have experianced a rash? Logan has this reash at first the Dr.s thought it was fifths disease then they thought he was having a...
Thought this might be of interest, with our kids needing so many needle sticks... http://web.mit.edu/newsoffice/2004/sonoprep.html Julia -- Mom to: Emilie...
Hi!! I have another question!! Joey who is 5 years old, unspecific Mito. Has had a very swollen lymph node on the back of his neck since last Friday. It is...
Hi guys I know this subject has come up a lot, but I can't seem to find the info on it. I don't know what file I put it in. Nothing new for me! LOL Any way...
Hello to all you mito experts; I'd appreciate hearing from anyone who might have a few tricks up her/his sleeve on how to control excessive secretions. This...
I have been in contact today with a very nice gentleman at the regulatory department of Sigma Tau Pharmaceuticals, the company that makes Carnitor, regarding...
Hi all, As Asher has now been 3 months with dx of mito, and as he has continued on the g-tube, and had some recently identified other symptoms (i.e. hearing...
I never knew boulus was better for the liver, interesting. Since Grace has liver involvement this may be what we need to do. Where do you get the portegan,...
Kelly, What a week we have had on Primidone! The girls have been very irritable, throwing huge fits and crying uncontrollably. I spoke with the neuro's...
Does anyone notice that there teeth are sensitive to the cold? It just happened to me all of the sudden. I have had decreased saliva lately and now I cannot...
Well, I am back to the beginning, again, regarding Gracies hypoglycemia. She is always low, but we do pretty good maintaining during the day. Her problem is...
In a message dated 8/17/2004 8:00:59 AM Eastern Standard Time, kilbridek@... writes: His nurse has done some research and has found a lot on Phenobarb...
i just wanted ya'll know that karlee passed at 8:15pm tonite. she went very peaceful with no struggle. we have had a very very hard 4weeks. i know now that she...
Hi all, I know I have been quiet on here lately as many topics I can't relate to yet. But this past weekend I had my first major "crash". It was so bad that...
Hi all, I know that other people have written about children having strokes and/or 'brown-outs' and regressing and losing function... and then sometimes...
"Andrew (and many mito kids) had increased thirst" Ok, wait a minute! Deb, are you telling me Mito children have increased thirst? I had no idea! Is this...
Hello Everyone Just sending out a quick reminder notice that the next meeting of the South Shore Chapter of the UMDF support Group will take place this...
This was years ago for my 7 yr. old- he had a deficiency of something, but I can't remember if the cal/mag/zinc took care of it, or the Cod liver Oil ( Vit A)....
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