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HELP** seizures may be metabolic???
Mon, 08/06/2007 - 22:30Comments
Re: HELP** seizures may be metabolic???
Submitted by sushina on Sat, 2008-05-31 - 03:39
yes we did the biopsy about a month ago still wanting for answers also under going gentic testing i remember reading your bloggs.. i hope sams ketones stay high and specific gravity in the right range :)
yes we did the biopsy about a month ago still wanting for answers also under going gentic testing i remember reading your bloggs.. i hope sams ketones stay high and specific gravity in the right range :)
Re: Hypometabolism/Hypothyroidism
Submitted by lorig on Wed, 2008-06-04 - 12:54
My son has had seizures since 34mo, he is now 14.4yo.
We felt there was something more at 10yo, but a quack at a very well known state university thought it was early onset schizophrenia.
He went through a lot of different meds, suffered with hyperammonemia and excess cranial fluid as well as severe mood swings. We tried the modiofied atkins diet and he went into ketoacidosis. Dr. Wendy Mitchell felt he had a mito chondrial disorder, but the bloodwork was inconclusive. She investigated further and found he has a chromosomal disorder of a micro deletion at 15q13.3. This area is where a protein structure that is causing the mito disorder symptoms.
Alex currently takes CoQ10, B100, L-Carnitor as well as Felbatol and Depakote. She wants to remove the Depakote but not at this time. We have an appt with Genetics in September to identify which complex is affected. Feedign him every two hours and a complex carb snack before bed is working at this time.
BTW, my insurance did pay for genetic testing because they didnn't know that the bloodwork was being sent to another lab. The lab covered the bloodwork for my husband and me to be tested, we are not carriers so it was a birth defect.
Take care,
Lori, Alex's mom
My son has had seizures since 34mo, he is now 14.4yo.
We felt there was something more at 10yo, but a quack at a very well known state university thought it was early onset schizophrenia.
He went through a lot of different meds, suffered with hyperammonemia and excess cranial fluid as well as severe mood swings. We tried the modiofied atkins diet and he went into ketoacidosis. Dr. Wendy Mitchell felt he had a mito chondrial disorder, but the bloodwork was inconclusive. She investigated further and found he has a chromosomal disorder of a micro deletion at 15q13.3. This area is where a protein structure that is causing the mito disorder symptoms.
Alex currently takes CoQ10, B100, L-Carnitor as well as Felbatol and Depakote. She wants to remove the Depakote but not at this time. We have an appt with Genetics in September to identify which complex is affected. Feedign him every two hours and a complex carb snack before bed is working at this time.
BTW, my insurance did pay for genetic testing because they didnn't know that the bloodwork was being sent to another lab. The lab covered the bloodwork for my husband and me to be tested, we are not carriers so it was a birth defect.
Take care,
Lori, Alex's mom
Re: Hypometabolism/Hypothyroidism
Submitted by beebs08 on Sat, 2008-04-19 - 05:25
Hi everyone, I'm no expert and I'm learning so much here by checking in every day and reading other peoples' posts. And it was because of this I found references to the above. I hadn't a clue so I googled the two "words" and its been such an education. Maybe you could do the same, and it may take some time but for me its been worth it. I'm armed with so much information I feel my doctors will be shocked. I think sometimes doctors treat symptoms rather than looking deeper. I don't believe in self-diagnosis but so much of what I've read and learned relates to me perfectly and after 30yrs of misery I have a pretty good idea of whats going on.
Hopefully this will help somebody else. Best wishes to everyone. Beebs
Hi everyone, I'm no expert and I'm learning so much here by checking in every day and reading other peoples' posts. And it was because of this I found references to the above. I hadn't a clue so I googled the two "words" and its been such an education. Maybe you could do the same, and it may take some time but for me its been worth it. I'm armed with so much information I feel my doctors will be shocked. I think sometimes doctors treat symptoms rather than looking deeper. I don't believe in self-diagnosis but so much of what I've read and learned relates to me perfectly and after 30yrs of misery I have a pretty good idea of whats going on.
Hopefully this will help somebody else. Best wishes to everyone. Beebs