Searching for help

[Guest guest]

Kylie is my granddaughter, and she is now 18 months old. Most of her

life her parents have been trying to get a diagnosis for her

illness. She has seizures that are uncontrollable. Her development

is very delayed,including her muscle development. She also has a

feeding tube and a serious motility problem. At 6 months, she could

roll over and she was able to grab her feet, but now she really

can't do anything. She just lays in one position until someone

changes it for her. Sometimes she kicks her feet a little bit and

moves her arms, and she likes to hold on to her hair, but that's

about it. She has had two muscle biopsies, one at Children's

hospital in Columbus, Ohio and the other at the Cleveland Clinic.

The last one(in Cleveland)was normal, so they said they can take

mito off the table for now. The seizures continue and the doctors

just keep raising the doses of her medicine which makes her nothing

but a zombie. The doctors have said there are no more tests they can

do, but there has to be something. My daughter is so frustrated and

she feels she is killing Kylie with medicine. We will be going back

to the Cleveland Clinic on Wednesday for a follow up appointment,

but we will be asking a lot of questions. Something has got to be

done for Kylie! She has no life! Where can we turn? What can we do?

Please give suggestions if you have any. Thanks.

Joann

[Guest guest]

Sounds like you are in Columbus. We are, too. We have a 3 year old daughter who has been going through the same processes. About 8 months ago another mito family referred us to an "alternative medicine" doctor in Lakewood - outside Cleveland. We thought we had nothing to lose and have been very glad we went to see this fellow. I think he has done the most for our daughter. When we told Dr. Cohen (I am guessing that is who you are seeing at the clinic) about our success with the "alternative" approach, he seemed offended. Definitely made us feel he was interested in success with his guidance, not success in general. I can't type real fast but my wife, Kris, or I would be happy to spend time on the phone with you, sharing our experiences. We live in and can be reached on .

Searching for help

Kylie is my granddaughter, and she is now 18 months old. Most of her life her parents have been trying to get a diagnosis for her illness. She has seizures that are uncontrollable. Her development is very delayed,including her muscle development. She also has a feeding tube and a serious motility problem. At 6 months, she could roll over and she was able to grab her feet, but now she really can't do anything. She just lays in one position until someone changes it for her. Sometimes she kicks her feet a little bit and moves her arms, and she likes to hold on to her hair, but that's about it. She has had two muscle biopsies, one at Children's hospital in Columbus, Ohio and the other at the Cleveland Clinic. The last one(in Cleveland)was normal, so they said they can take mito off the table for now. The seizures continue and the doctors just keep raising the doses of her medicine which makes her nothing but a zombie. The doctors have said there are no more tests they can do, but there has to be something. My daughter is so frustrated and she feels she is killing Kylie with medicine. We will be going back to the Cleveland Clinic on Wednesday for a follow up appointment, but we will be asking a lot of questions. Something has got to be done for Kylie! She has no life! Where can we turn? What can we do? Please give suggestions if you have any. Thanks.JoannPlease contact mito-owner with any problems or questions.