NEED HELP, MITO SPEC OR OUR REGULAR NEURO???

[Guest guest]

Davonne

Hello from another Tennessean! I'm in Memphis though...other end of the state!

On one hand I would think that Shoffner would have told you if you could do something more about the seizures. My son also had Complex I and IV and although he did have siezures, he didn't have the typical kind, which are what I am assuming Karlee has. You might try Neurontin...most of the mito kids I know of who have tried it have had good success, including our . Its a siezure and pain med... had been in a five day demented state and we tried it and it brought him out...we had him on it four months before he died. We have to keep increasing as time went on though but it helped so we did it.

The only other thing I can think of is there is a neurologist in the Birmingham area named Lane Rutledge who sees a lot of mito pts (for a dr who isn't a mito spec) several on this list have and do see her. Or if seizures are the overall enemy of Karlee's health, then you might just look for a seizure specialist.

welcome to the group...so sorry you have to be here!

deb...mom to three great adopted kids... (07.04.96-05.26.03) with Mitochondrial Disease, Gaige age 5 with High Functioning Autism & dysfluency and Bliss age 3 with very very mild Cerebral Palsy.http://www.heartliftersgallery.com/http://www.lifeofloveproject.org/

[Guest guest]

HI EVERYONE! I WOULD SOME FEEDBACK ON WHAT TO DO FOR KARLEE.

WE LIVE IN KNOXVILLE, TN AND WE HAVE 2 NEURO'S HERE. THATS IT. I

REALLY DONT THINK OUR NEURO KNOWS ALOT ABOUT MITO DISEASE. BOTH

NEURO'S ARE IN SAME PRACTICE. KARLEE IS STILL HAVING LOTS OF

SEIZURES. SHE IS TAKING PHENOBARB,KEPPRA,KLONIPIN,TOPOMAX,AND DIASTAT.

HE TOLD US A COUPLE OF WEEKS AGO THAT THE SEIZURES WERE NOT GOING TO

STOP BECAUSE HER MRI OF THE BRAIN HAD WORSENED SO MUCH. SHE HAS

REALLY WENT DOWN HILL IN 2 MOS, WE SEEN DR.SHOFFNER IN MARCH AND HE

SAID THERE WAS NOTHING WE COULD DO FOR HER, HE SAID HE WAS SURPRISED

THAT SHE WAS ALIVE. I LIKED HIM A WHOLE LOT, HE WAS VERY HONEST AND

VERY CARING. I JUST FEEL LIKE I SHOULD REACH OUT IN ANOTHER DIRECTION.

WHAT WOULD YOU PEOPLE DO???????????

I DONT WANT TO BE MISSING SOMETHING THAT COULD HELP HER EVEN JUST A

LITTLE. I HOPE YALL DONT MIND, I JUST WANT TO MAKE SURE I HAVE DONE

WHAT NEEDS TO BE DONE.

WE ARE GOING TO TRY TO GO TO THE CONFRENCE, DO YOU THINK THIS WOULD

HELP ME?

THANKS SO MUCH AND HAVE A GOOD SUNDAY!

DAVONNE

MOMA TO KARLEE BETH 19MOS OLD-COMPLEX I&IV,KAITLIN 8YEARS OLD, AND

KARSON 3YEARS OLD AND HUSBAND KIP{WHO WORKS ALOOOOT}