Yesterday at school Joey's kindergarten teacher send Joey to the nurse because he looked VERY pale. In the nurses office they sat him down and had him take...
Hi I have a daughter named Leah. She will be 7 the end of April. She started to get her baby teeth later than usual and also she is now just having a loose...
Your Name
sorehead@...
Mar 1, 2005 4:53 pm
47847
Kinda sounds like a migrane to me. Migranes often make you very nausious (sp?) wich could explain his paleness. When Grace gets them she is often very pale and...
Jennifer We have been doing the ketogenic diet now for over 6 years. My daughter has PDH which has responded well to this diet. Her seizures are under control ...
Mito is in the md family. The MDA has helped us with a lot including a wheelchair, muscle biopsy and this will be J.D.'s 5th year a camp that he loves. Love, ...
Just a thought off the cuff here... but I would maybe check his sugar and/or blood pressure too... deb...mom to four great kids and wife to one amazing guy! ...
they are the same thing...Mito is covered by the Muscular dystrophy Association... it is not a true form of MD>..but the MDA now covers about 35 neuromuscular...
Hi everyone My son who is 15 months is highly suspected of a leighs syndrome, a recent MRI shows more damage in the brian stem he is also hypotonic now with...
hi martin. i have a 5 year old daughter who was dx with leighs at age 2. she is nonverbal and nonambulatory. however, she is very aware of everything and...
Dear Martin, I'm sorry I have no experience to help you with, but you are in my prayers. Donna From: martin f To: Mito@yahoogroups.com Sent: Tuesday, March 01,...
Hi Beth tried you on your own e mail it didn't go through. Hi Beth Thank you for the reply, the doctors might as well gave him a death note today, we are...
Lisa, Different smells can mean different things. If the burps smell like vomit, I'd bet that your DD was refluxing. Sweet smells can be a sign of diabetes....
Yesterday we found out that our son will be getting a muscle biopsy done in
Atlanta with Dr. Shoffner. Would someone please tell me where it's done, and
how...
Good Morning Kristine, My son J.D. has his done about 4 years ago in Atlanta by Dr. Shoffner at the Children's Hospital - used to be Scottish Rite. Dr....
We went down last April, but had friends down there that rallied together with their entire Sunday School to get us hotel room and meals (we were not aware of ...
Hi Martin F Welcome to the group. Sorry to hear of your son's diagnosis. My nephew, Aristotle, has been diagnosed with Leigh's. He has lesions on his brain...
Tamara, i couldnt believe when i saw your post, my Matt last Friday was rushed to the ER, he was at school, gym class turned white as a ghost is the way the...
My Caden will be having a muscle biopsy done in Atlanta in 2 weeks (by Dr. Shoffner). We are searching for flights right now, so I am glad to hear about the...
Hi Laura: It just smells like the food she had eaten. So I guess may be vomit. I took her to her doctor and he put her on Zantac for reflux. He didn't even...
Your Name
sorehead@...
Mar 2, 2005 5:19 pm
47866
Vickie, Don't think community bathrooms but community kitchens. It was nice and the shuttle takes you to the hospital. Traffic in Atlanta is horrible. ...
I mean being diagnosed with a mito myopathy (complex I) and beckers or duchenne md on top of that thx myst Darlene Graham <ddgraham@...> wrote: Mito...
Mysty, Complex I can be confusing and can mimic beckers and duchenes but hey, anything is possible. J.D. was misdiagnosised with cerebral palsy and like...
My 8 month old daughter had her biopsy done in Atlanta in the middle of January. We live in Georgia and my daughter was already in Scottish Rite. She was...
My daughter has Complex I and Complex IV deficiency which was diagnosed by the geneticist. But does the geneticist treat the disorder or are there mito...
Thanks so much Darlene for the information! It was a big help. I just called the MDA clinic, and because Devin (6) has Carnitine Deficiency
and the LHON...
Hi Rod, I appreciate your reply. I thought that was so nice that your friends made
sure you were well taken care of while there! God bless them! As for the...
Good luck to you and Caden! I'll say a prayer that all goes well. I think we'll be getting a hotel as well. My children would love to stay and
the RMH, but my...
Hi Kristine, Our son Jack had his biopsy in Atlanta with Dr. Shoffner last May. We live outside of Boston. The people at Dr. Shoffner's office were very...
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