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Suggestions for myelination and seizures - Please help

myelination epilepsy marijuana

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#1 Lydiaunicorn

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  • Location:Portland, OR

Posted 03 February 2015 - 09:31 PM


I am seeking ideas to help my 2-year-old daughter. She was born with low whilte matter/ hypomyelination and a thin corpus callosum. She also has hundreds of short (5 second) tonic seizures everyday, is developmentally delayed and is unable to hold up her head. Seizure reduction is my main goal but I'm also interested in other things like calming her nervous system, reducing inflammation and supporting brain health. She has no diagnosis and is a mystery to the doctors. I am at the end of what they can do for her and have come here seeking new ideas, even if they are just to support her overall well-being. Stack suggestions? Is that too general of a question?

 

WHAT WE'VE TRIED:

We've tried everything the neurologist has suggested for controlling the seizures but nothing has worked: topiramate, keppra, lamotrigine, phenobarbitol, prednisolone, vigabatrin, clobazam, peridoxine, ketogenic diet and she has a Vagus Nerve Stimulator.

 

MEDICAL MARIJUANA:

The only reprieve she had was last December thanks to medical marijuana. We tried a dozen strains before finding one that worked. She went from 70+ seizures to just ten a day. But it only lasted two weeks. It was definitely not a change in the medicine (same jar), and not a tolerance issue (we increased, it didn't help). No one knows why it stopped working. But I will say that her seizures have looked shorter and less clustered ever since we tried the marijuana oil. Although they have also increased in number since then (about 70/day to 200+/day). She is not on marijuana oil now. We stopped using it when it wasn't helping her seizures anymore. Any ideas about this are welcome too.

 

Thank you so much for your time.







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