Hooray Darla and Joey!!!!!!!!!!!!!!!!!!!!!!!!!!! I am so glad to hear that Joey is well enough to go home. We will pray he gets to stay home and not have any...
Keely, I wish you all didn't have to go through all of this too but I understand how you feel. My older son is now being looked at for this disease. It is a...
Heather - my daughter Amy was passing out for a period of approximately two years before Long QT was diagnosed. It looked like she was having epileptic...
Hi Heather, From what I have learned from this group is that a MRI and an EEg can look totally normal but we can see physical signs of change. My 8 yr old son...
maybe you should not have animals!! LOL..so funny. Donna mito mom to 5 mito kids ... From: Kim Smith To: Mito@yahoogroups.com Sent: Thursday, December 01, 2005...
hello all, my soon to be 12 year old zoe (and most probably her identical twin daphne) was recently diagnosed with pyruvate dehydrogenase complex deficiency....
I feel for you. My seven year old son was health up until last April. He has yet to be diagnosed with anything but started with drooping eyelids and muscle...
Hi, Have you tried to do a slow feed at night? By this: Example: 120cc per hour for 8 hours? If you did a slow feed at night and just upped it by 5 cc every...
Heres a link to a photo of Brandon... :) Its interesting that you mentioned the crooked bum crack (lol) Brandon has one but nobody has ever mentioned it... we...
Ive never even heard of these... do you have any info? thanks, Keely ... healthy. ... very ... very ... have ... better ... very ... is ... also ... He ... ...
Unconfirmed mito diagnosis just means that all like 40 specialists he's seen in his life say he has mito, but after a muscle and skin biopsy and every test...
Hi Keely, I wanted to ask you a few more questions since our kids are so close in age. What all developmentally is Brandon doing? Where are the areas he's...
Thank you Anne I really appreciate this a lot. Actually Josh does have a slant board that they are supposed to use at school, but they told me he seams to be...
... is the most reliable place to have them worked on. The results are the most accurate. ... You mean Cleveland, right? They don't do testing for very long...
LOL sorry I should have been more specific! I have heard of unconfirmed mito, I was wondering about the Carnosine, Omega 3 fish oils and DMG that CJ Dir...
Developmentally Brandon isnt doing too bad... his motor skills are mildly delayed (he has AWFUL balance, and fine motor isnt great as he gets tremors quite...
No actually the lab that does the CoQ10 levels is in Cincinnati....I made sure and went through my lab reports to double check..it is Cincinnati....even the...
Just curious,,,who did your son see at Cooks Children's in Ft Worth ? That is where my sons go,,,they see Dr. McGlothlin.Did he have a muscle biopsy ? I know...
Deb, I know,,,its late to be getting back to you. I am so backed up,in my e-mails. Plus I am having some medical problems. My blood pressure is high,right...
Scott Welcome. I am sorry to hear about Austin and Sydney. You have come to the right place. There is lots of information available from many folks who have...
Leigh Disease (Subacute Necrotizing Encephalomyopathy): Leigh Disease is a rare, inherited, neurometabolic (affects the metabolism or internal workings of...
The best advice I can give you is to live every day, that day. No one can make any predictions how this awful disease will effect our children over time. We...
Thank you to all who responded! With the help of a list member who e- mailed me too, we are getting a plan in place that (if it works!) will not require us to...
In a message dated 12/2/2005 1:17:31 AM Central Standard Time, berlydawn4kids@... writes: "Even Shoffner uses four different terms in his report for the...
Leighs and Cox IV can go together but they are not necessarily the same thing. My son has complex I and IV, but does not have Leighs. Leighs means that the...
Hi Thanks for all your help regarding what cardiologists should do given Asher's speedy heart rate and chest pain. I felt like I carried everyone's knowledge...
AReckling@...
Dec 3, 2005 12:58 am
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Anne, Glad to hear the visit went well and that things looked okay for Asher. It's so nice when you get a doc that actually listens to your concerns and tells...
I had to take Sophie to the ER today. It was the first time I have had to use the "treatment plan" letter. She didnt' actually seem that sick to me she just...
I'm sorry to hear that Sophie's been so sick and that you had to take her to the ER. Hope she's feeling better soon. I know about second guessing, I do that...
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