Re: can anyone help us? Michele

[Guest guest]

You are in our prayers.

Geri-Anne and family-

-- In Mito , luvmybully2@a... wrote:

> Kim,

> thanks and i did just call the neuro, he said not a seizure but

that it

> could be the mito destroying the hypothalamus since we ruled out

meds and

> infection and seizures. he recommends a chest x-ray to rule out a

fungus infection???

> he said it sounds like central brain dysfuntion ( jess has

complete grey

> matter deteriation due to the mito) and there is nothing he can do

for it. we know

> we are getting to the end with her, but still thats hard to hear.

thanks

> again ,

>

>

>

> Michele mom to , 9 yrs old, mito- DNA deletion, intractable

seizures,

> dysautonomia, MR., pdd, g-j tube, 02 dependent, BI-pap, ketogenic

diet since

> 3/01, perm. foley cath for bladder dysfunction, heart rhythm drops

during

> sleep. oh and lover of anything barbie, power puff girls, and

loves to sing even if

> you can't understand the words.....lol