just getting started with all of this

[Guest guest]

Hello,

I am Mandy. Mom to two beautiful girls. Jaden my 10 year old is

normal developing. Except for mild scoliosis and over active bladder

she is fine. Mikaila on the other hand is my sick little one. She has

Intractable Primary Generalized Epilepsy, Sensory Integration

Dysfunction, Chronic vomiting, Developmentally Delayed, growth

delayed, Hypoglycemic episodes, Learning Disabilities and Reflux. She

has failed Tegretol, Carbatrol, Topamax, Depakote, Dilantin, Keppra,

and Lamictal. She is not a surgical canidate and her neuro doesn't

feel that the VNS will work for her. She just had her skin and muscle

biopsies and lumbar puncture last Wednesday (11-24). To make a long

story shorter after going through many different doctors and

specialists Dr. Shoffner heard about Mikaila and called us with an

appt. We are so lucky to have him here in Georgia. He told us that it

is highly unlikely that Mikaila will get any better but what he

hasn't told us it what we are looking at as far as a plan to help

Mikaila. How long did it take for you all to get your biopsy results

back? What kind of treatments have you done that works? I know that

every child is different. I would love to talk to other moms and read

other children's stories. Please email me with any help you can give.

I guess I am just looking for a little guidence in all of this. I

pretty much know everything else she has but this Mito stuff is all

new and confusing.

Thanks for reading all of this,

Mandy

[Guest guest]

Hello,

I am Mandy. Mom to two beautiful girls. Jaden my 10 year old is

normal developing. Except for mild scoliosis and over active bladder

she is fine. Mikaila on the other hand is my sick little one. She has

Intractable Primary Generalized Epilepsy, Sensory Integration

Dysfunction, Chronic vomiting, Developmentally Delayed, growth

delayed, Hypoglycemic episodes, Learning Disabilities and Reflux. She

has failed Tegretol, Carbatrol, Topamax, Depakote, Dilantin, Keppra,

and Lamictal. She is not a surgical canidate and her neuro doesn't

feel that the VNS will work for her. She just had her skin and muscle

biopsies and lumbar puncture last Wednesday (11-24). To make a long

story shorter after going through many different doctors and

specialists Dr. Shoffner heard about Mikaila and called us with an

appt. We are so lucky to have him here in Georgia. He told us that it

is highly unlikely that Mikaila will get any better but what he

hasn't told us it what we are looking at as far as a plan to help

Mikaila. How long did it take for you all to get your biopsy results

back? What kind of treatments have you done that works? I know that

every child is different. I would love to talk to other moms and read

other children's stories. Please email me with any help you can give.

I guess I am just looking for a little guidence in all of this. I

pretty much know everything else she has but this Mito stuff is all

new and confusing.

Thanks for reading all of this,

Mandy