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Hi! I am so glad that I found this group. I have been dealing with

so many unknowns for 8 months. My daughter is still not diagnosed.

But after saying she had one disease and accepting it, now they are

pretty sure that it is Leigh's disease. I am waiting for the

muscle/skin biopsy results. But I have so many questions... She

doesn't seem to be degenerating as the disease states, so I don't

know. I've only been checking out this group for a week or so, but

have noticed that a few of you have children with this disease and I

guess I just wanted to get more information that is real life, not

text book. I have no idea what to expect in regards to my daughter,

Lily's extent of development. Let me explain... I'll try to make the

long story short!!! She was basically a 'normally' developing child

until 1 years old. Although she didn't learn to crawl until 11

months. Right after her b-day, she got the flu real bad(1st time),

but she also got her MMR shot (to blame??!). Within 2-3 weeks she

had regressed back to a newborn state. No head control, couldn't

even sit, or roll over, floppy, screaming bloody murder, and lost

control of right arm/hand. Had 3 MRI's should white matter in the

basil ganglia. Dr's refused to tell me whether it was permanent

brain damage or anything. What is it? MRS showed those high levels

of whatever which made them think metabolic. Plenty of tests, no

diagnosis. They first thought it was 3-methylglutaconic aciduria.

Now, no. They think it's Leigh's disease. They had put her on 3ml of

Carnitor 3x a day. That is it. Nothing else. She is now 20 months

old. Currently, she eats fairly well although I do feed her

Pediasure and carnation instant breakfast daily. She is still using

a bottle, but not a sippy. She can hold her head up again, and can

roll over. Plus, she can push herself up on her hands/elbows, and

she is gaining control of her right hand! She cannot sit on her own

yet. So, that is my story. Sorry it is so long, but I have so many

questions and does this sound familiar to anyone, and if so can you

give me any hope on if she'll ever be able to sit, crawl, or even

walk? And lastly, this is terrible, but I am now going through the

anger stage again and putting it towards Lily. I love her put I hate

the problem and blame her. I hate myself for it, but sometimes I

just don't want to deal with it. Any advice? Okay, I'm done

rambling! Thanks for your help!

Amy

mother of Lilyann 20 months; suspected Leigh's

and Austin 4 years; don't think he has it...