Re: Mito and Tachycardia/Keely

[Guest guest]

thanks for the note. Oh yes, she does fatique, and very fast at that. And just like you, our current cardio is not willing to treat it. In additon, Max is dx with myopathy. So her stamina is limited as it is. Her heart rate just wipes her out ever so much faster. And then she also has central apnea during the day.

She does get faint and lightheaded and she cannot stand for any length of time or walk. We will pursue other opinions with other cardios just like you suggested. Thanks again.

rosy

[Guest guest]

one other thing that might be worth considering is a consult with a

neurologist that is experienced with Mito. with the faintness on

standing, all of it could be related to autonomic issues (POTS, or

another orthostatic intolerance = translates to trouble standing

upright for long). there are a few tests that can confirm this, one

being a tilt table test... im not sure if its pheasable to run it on

a 5 year old, but a pediatric neurologist would be able to tell

you... basically they lay you on a table, then stand you up, and

monitor your EKG, blood pressure, and breathing... when i had mine

done after about 4 minutes, my blood pressure was 0 (yep, 0) and my

heart rate was over 160. It ruled out cardiac problems and pointed

to a neurological cause for it. it also gave us direction for how

to adress it and treat the problem.

There is a Doc at the Mayo Clinic (I want to say Dr. Grubb, but I

honestly am not certain, he has been mentioned on the board in the

past) in MN, who is a cardiologist that specialises in this exact

problem. I currently see a card. here in canada that specialises in

it, and i have to say finding someone willing to treat it will make

a HUGE difference in your daughters energy levels and general daily

comfort...

feel free to email me if you want, ive been down this road for

years, and i know its not a fun one!

kschellenberg@...

Keely

> thanks for the note. Oh yes, she does fatique, and very fast at

that. And

> just like you, our current cardio is not willing to treat it. In

additon, Max is

> dx with myopathy. So her stamina is limited as it is. Her heart

rate just

> wipes her out ever so much faster. And then she also has central

apnea during the

> day.

>

> She does get faint and lightheaded and she cannot stand for any

length of

> time or walk. We will pursue other opinions with other cardios

just like you

> suggested. Thanks again.

>

> rosy