My 24 year old daughter has a "most likely" mito, MELAS/MERFF diagnosis. Jenna, her brother, sister and I have had some abnormal labs, symptoms and a family...
I think Jenna was 16 or 17 when she saw Freeman. She had surgery @ 15 and the autonomic symptoms became profoundly worse after that. He was mostly helpful...
http://pedbase.org/m/myoclonus-epilepsy-and-ragged-red-fibers/Â If you look at this site it has a list of the symptoms.. They sound like they are describing...
Tony the past couple of weeks had been getting hit in the head with balls and tennis racket between home, school, and church. Tony is still having balance...
Good morning,   Grace was admitted on tuesday am at the cleveland clinic for vomiting. They tested her for c-diff it came back postive. She takes no...
My son is 7 and weighs about 55 pounds and is, unfortunately, nowhere near potty trained. I am just not sure he has the body awareness yet. We are ok in...
I just went on the website we use: www.northshorecare.com. If you look under baby diapers (instead of youth diapers), you will see they make a junior size...
Hi Lori, We ... From: lori cutillo <loricutillo@...> Subject: Re: [Mito] overnight diapers To: Mito@yahoogroups.com Date: Friday, November 20, 2009, 1:07...
Hi Wendy--- Yes I strongly believe that there are metabolic imbalances that doesn't show up in lab work at times. Me and my daughter are prime examples of...
So a lot of bigger kids here are not potty trained? Do you think this is due to feeding tubes or something else going on with their bodies? Joshie is 5 and...
Daniel is not trained because of severe cognitive disability. He is totally care dependent. I doubt it has anything to do with the mito. Believe me, if I...
Sophie is 5 1/2 and doesn't seem to have any sensation. She is not even aware if her diapers are wet or soiled. I have been told by her docs that this is most...
Our son is 8 and not completely independent. He just had four accidents yesterday/BM and bladder. He also wears a pull up diaper at night and when he is ill...
Hi Lori, We used to have this exact problem as well. What I ended up doing was adding a Poise pad inside a Huggies Goodnight diaper to help absorb. ...
my son Matt is now 13 years old and has no bladder and occasional no bowel control when he sleeps, he finally weighs 71 pounds, which has been a struggle to...
Hi all. My daughter is 12 and has never been potty trained. We got semi close a few times, but then she regressed again. We haven't tried again in 3 or 4...
Jessica - My almost 6 year old daughter is not trained - she's had the basic (not going to ever do it again) urology workup. She is minimally aware of...
In our case metabolic labs can vary so much that they aren't very helpful. This isn't unusual with mito. "Staring seizures"??? sounds like she is describing...
She'll be in my thoughts and prayers! Hugs, Lee ________________________________ From: Brian Kenney <cle17g9@...> To: Mito@yahoogroups.com Sent: Fri,...
Well. It's not very straight forward and purely my own investigation and theory.....my DD has low results on EMG for tibialis anterior nerve (foot drop); this...
Deb,  Do you mind telling me what do you mean by "state insurance".  Is that medicaid?  Thanks Leigh ... From: Thats2seven@... <Thats2seven@...> ...
My 3yr old had a very serious case of C-Diff last March (was developing toxic megacolon) and we treated her with IV flagyl. It cleared the infection, but was a...
My daughter is 3 she started waking up with a dry diaper at 9mo.. Yes, 9mo! At 10 mo she was hospitalized and the nurses were shocked when they came in to...
Sheldon is 8 and still in diapers. We've never made much progress, he seems to have no idea when he has to go. He's nonverbal, has chronic diarrhea, and is...
Hi everyone still here at clinic with Grace question in regards to regression during illness ,she is not drinkink very much iv dependent. She will eat some...
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