Thank to all here

[Guest guest]

I have to Thank all here who got me through with words of wisdom and

support during my melt down a few weeks back. Im doing much better

now, that i got that all off my chest. Matts doing a bit better,

and regaining some strenght. We are taking him off of Adderal XR,

(thank you Suhad for that info about Adderal) Matts doc agrees that

is more than likely what is causing his tactacardia, we are going to

try Strattera and if that doesnt work we will try ritelin, and we

are starting the new med at low dose and will work our way up if

nessacary. Matt will finally have some restictions for gym class

now too thanks to our neurology and metobolic team. And i know the

school not just our family will be greatful for that. We did take

Matt for his mtdna blood test and should have the results by the

middle of April from Athena Lab. On another good note the Dr. Marks

Matts metobolic specialist at ST s hosp in Phila Pa is

working on getting the Barnett Center for Mitochondrial studies and

research,(including fresh muscle biopsy and mtdna blood test) back

open and asked me if i would be interested in helping..the only

thing holding them back from opening is money, fundraising, and i

told him count me in, even though ive been perty tired myself, i

think and my husband agrees that if i do something towards helping

it would help me instead of me feeling so fustrated and helpless, at

least i would be doing something that might actually help. I guess

in the long run alot of my fustration and fears are because i feel

so helpless this disease is a ticking time bomb, and im sick of

holding my breath with worry. Thanks again to all of you here!!

HUGS, Barb