VNS/uncontrolled seizures

[Guest guest]

Hi everyone,

My daughter has rett syndrome and tests positive also for mitochondrial

disease.

At age 9.5 she began suddenly having 8 to 10 grand mal seizures a day,

thanks to puberty and the flu.

To make a long story short, we are down to 2 or 3 complex partials a

day, plus one grand mal. And we've been through all the meds we can

try.

We are considering doing VNS strongly. We just don't think the keto

diet will help, as it's so restrictive, and because she tests

borderline for mito disease.

I'm wondering if any of you have gone the VNS route, and if so, would

you mind telling me if it helped with seizures at all, even making them

shorter, and if you were able to decrease meds over time? The high

amounts of meds we are using is causing great fatigue.

[Guest guest]

Hi everyone,

My daughter has rett syndrome and tests positive also for mitochondrial

disease.

At age 9.5 she began suddenly having 8 to 10 grand mal seizures a day,

thanks to puberty and the flu.

To make a long story short, we are down to 2 or 3 complex partials a

day, plus one grand mal. And we've been through all the meds we can

try.

We are considering doing VNS strongly. We just don't think the keto

diet will help, as it's so restrictive, and because she tests

borderline for mito disease.

I'm wondering if any of you have gone the VNS route, and if so, would

you mind telling me if it helped with seizures at all, even making them

shorter, and if you were able to decrease meds over time? The high

amounts of meds we are using is causing great fatigue.

[Guest guest]

Our granddaughter (Rett Syndrome and Mito complex III) tried the Keto diet

before Mito diagnosis was known - it was NOT helpful to her. She has a VNS

for her seizures which was very helpful initially. She also is the

" puberty stage " sufferer of increased seizure activity. She still has

daily seizures but I can't imagine what her situation might be without the

VNS! We had the honeymoon phase when her VNS was new - with rare and mild

seizure activity. The medication has remained essentially unchaged but she

has grown in height and weight significantly so I believe that she is

probably on a much lower dose of meds that she might have been without the

VNS. She is 10.5. Good luck in your decision making process.

VNS/uncontrolled seizures

Hi everyone,

My daughter has rett syndrome and tests positive also for mitochondrial

disease.

At age 9.5 she began suddenly having 8 to 10 grand mal seizures a day,

thanks to puberty and the flu.

To make a long story short, we are down to 2 or 3 complex partials a

day, plus one grand mal. And we've been through all the meds we can

try.

We are considering doing VNS strongly. We just don't think the keto

diet will help, as it's so restrictive, and because she tests

borderline for mito disease.

I'm wondering if any of you have gone the VNS route, and if so, would

you mind telling me if it helped with seizures at all, even making them

shorter, and if you were able to decrease meds over time? The high

amounts of meds we are using is causing great fatigue.

Please contact mito-owner with any problems or questions.