What should I do now? Need help!

[Guest guest]

Hi~Madison is 5 and mito has been talked to us by her genetics and

the muscle biopsy has also been talked but at our last visit 3 weeks

ago, the dr. felt Madison is just not sick enough. I understand

that BUT in May she finally showed clear partial seizures on an eeg

and was put on zonegran. She had 3 seizures when she was 2 but

always normal eegs until now. She has always complained of her legs

hurting for about 2 years and she fatigues very easily compared to

her peers. Anyways, the past 4 days she has complained every night

of her legs hurting and tonight I found her laying on the kitchen

floor b/c her legs were hurting. The past month she has had about 4

potty accidents-Monday she woke up b/c she had wet the bed. Very

unusual for her. I feel like I should call the dr but what do I

say? Every blood test has been done and all come back normal except

3 weeks ago she had a high level of beta alanine amino acids but then

the 2nd test was normal. I was told it was a fluke. Should I ask

for anything else to be done. I asked for a MRI since she is now

showing clear seizures but the dr said since Madison had a normal one

June 2003 then it would be the same. I do not want to sound like a

crazy mom but my gut is telling me to push for more. My question

is: Is there anything else any of you suggest I say to the dr?

Sorry for so long. Please know I read daily but hardly post b/c I do

not have the knowledge on mito like many of you do. Thanks ahead for

any replies.

Kim