Hi all .. I just came back from Atlanta last month. My son is 16months old with complex 1 an 4. He is severly affected by this horrible disease he has...
Darla I dont see anything with you making more phone calls!! I know it is frustrating but it seems to me that everything associated with this disease is...
Michelle, My son has done that for years. Does hyper activiety, waking alot at night, and gastro problems precede the crash by a few days? Does speech become...
Donna are you dealing with Sheila or the other lady? I can't remember her name. I find her a little difficult but am never good with accents on the phone so...
Not sure where you are but if you are but in maryland we have DDA developmental disabilites asssociation and they provide us wth 2K that we can use each fiscal...
I live in southern maryland - Charles County - and we are on the WAIT list for the model waiver (spoke to Bridget BUT their are still a lot of people in front...
Hi all- I just wanted to mention that MDA will pay up to $2k for equipment. Call your local MDA office and they'd be happy to give you all the details. We had...
Hi, I have a 3 year old son with Complex 1 and FOD,,, we just got our results from the gene sequencing, and we seem to have a maternally inherited form of...
Good morning everyone, I have a weird question that I am probably over reacting to but here it is any ways. Last night my son came to me and said his nipple...
Thank you to all who responded. It sounds like it would be in Alex's best interest to have it done even if it is just for a baseline. I hope insurance covers...
Hi all, I am in the process of making contact with some folks at NPR and PEOPLE magazine (I have a friend who knows some of the people who write for both...
AReckling@...
Sep 1, 2006 5:11 pm
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I was just wondering how many families have individuals with MD and diagnosis of Mito? I just found out I am positive for the antibody for Myasthenia Gravis,...
Really? {I'm sooo excited-sorry- I'm warped in this whole diagnosis disocvery process) MG was mentioned about a year ago for both my kids, but neither have had...
We were told by Dr. Shoffner that MG is not linked with mito. We were curious as I have family with MG but not mito. Alex did not have the antibodies for MG...
Not angry- frustrated, but more frustrated at Mito. We found out yesterday that Tim is indeed having generalized seizures. Now this a boy who never had a...
Stevie has no language. Just babbling. No hyperactivity, not yet walking. He usually wakes 1-3 times nightly but nothing like "night terrors." Nope! ... at...
I took Sam to see Dr. Z from KKI yesterday. He was very impressed with Sam's progress since May as a result from being on the Carnitor rx. prescribed by the...
I was just wondering what some of you are using for a carseat? Right now we are using a high back booster seat for Audrey but she is out growing it. The...
WHOA....I was on Tributaline with Kris's pregnancy and he is the ONE with autism! I had it 2x once at 20 weeks and once at 27 weeks. Then I ended up going into...
Katie: just to clarify; there is another type of MG that is a genetic defect (dozen or so variants each an altered chromosome) that causes similar symptoms as...
We no longer use a carseat I bought a harness system and it can be used instead of a carseat, but only if your child has the ability to sit up and control...
Certainly I have the info. Visit http://ddamaryland.org/howtoapply.htm then schedule home visit child doesnt have to be present and you have to not be the...
Also united health care has a childrens foundation http://uhccf.org/ is there website they cover things not covered by insurance for children they even cover...
My girls are both in britax martathons and they go to 65 lbs and 41 inches. I know michelle aka momoftwinsandmore has britax huskys and they are awesome. Hers...
Vent all you want/need to, that is part of what we are here for. I will be saying prayers for your family and especially for you to be able to hang on!! Becca...
... In terms of your appt with Dr. Gropman - keep it. It cannot hurt. I think you can simply explain to the physician if he questions it, that you already had...
Hi, I just gave Becca a shower and when I washed her feet, I noticed the bottoms are peeling. Just about the entire bottom of her feet! Very odd, as she's had...
Hello. I am very new to the group, my son is currently undergoing the evaluations from multiple departments to determine the extent of his mito involvement. We...
We don't know Dr. Cohen personally, but you might also want to contact Dr. Haas @ UCSD. He had mentioned to us that he wanted to get more press on mito...
We're just wondering what you all do for getting our mito kids to sleep. Our son has Leigh's disease, and nights are pretty tough. The nights he has slept...
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