Anybody on the org suffer from epilepsy? - Ford Powerstroke Diesel Forum
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post #1 of 18 Old 05-07-2012, 07:42 AM Thread Starter
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Anybody on the org suffer from epilepsy?

My 3 year old daughter has been having seizures since 4 months of age. We have been through hell and back with tests and have found no cause or a medication that has worked in subsiding the seizures. Her seizures have lasted anywhere from 5 minutes up to and over 3 hours. The medical bills are piling up and the end of this is nowhere in sight. We have her on a modified diet in hopes of getting her free from meds at some point. Medical marijuana has come up in a couple discussions we've had with our geneticist(s), neurologist(s), and dietician.

I just thought I'd reach out in this community to see if anyone had anything to offer. We are getting quite desperate as she is globally delayed in all areas and we really want to get these seizures to stop hoping for a somewhat normal life for her.

Thanks for reading.

Jim


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post #2 of 18 Old 09-30-2012, 05:13 PM
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research the ketogenic diet if you haven't already. there is a book called honest medicine which talks a lot about it.


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post #3 of 18 Old 09-30-2012, 10:43 PM
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Awe man Jim. I have 3 kids of my own all under 5 and all healthy thank god. I'm sorry to hear that about your little girl. Though I have no answers or real advice I will offer my prayers for your little girl. I wish you and yours the best in this unfair journey. Please keep us all posted.

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post #4 of 18 Old 10-01-2012, 07:07 AM Thread Starter
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We are going through the testing process to see if she can be a candidate for the ketogenic diet. There are a bunch of levels that need to be verified before she can begin...which incidentially, our insurance no longer covers these tests. Our geneticist ordered a DNA analysis a few weeks ago and we just got that bill...there goes another $2,000. Recent changes to our health care no longer covers such things like these tests. I questioned BCBS and our union rep and both verified the coverage. It's not health care insurance anymore, it's coverage. They cover some things, but not nearly what they used to.


Our chosen professions will never make my wife and I rich as we are both public school teachers...our govenor has really gone after the unions on our state and we have suffered because of it.

Thank you for the thoughts and prayers Bryan...we'll get through this one way or another.


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post #5 of 18 Old 10-01-2012, 07:13 AM
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i had read that a compound in cannabis had recently been found to treat epilepsy

Compound in cannabis may help treat epilepsy, researchers say - Los Angeles Times

dont know if u can get it, i read also a father had tried it on his son with a rare case of it and it helped

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post #6 of 18 Old 10-01-2012, 07:23 AM Thread Starter
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We've been on a form of medicinal marijuana suspension since June 26th. She still seizes on her 28-32 day interval.


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post #7 of 18 Old 10-01-2012, 08:15 AM
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That book I mentioned is really worth a read.


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post #8 of 18 Old 10-01-2012, 08:35 AM Thread Starter
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I'm gonna see if I can get it on my nook for iphone app. My local B&N doesn't have it.

Thank you, it looks like a great book!


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post #9 of 18 Old 10-01-2012, 06:58 PM
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I'm not sure if it's been a test done yet, but a brain MRI could possible shed some light. There can sometimes be some sort of abnormality in the temporal lobe that causes seizures and can be caught on an MRI, although rare.

BTW I'm an MRI Technologist, been doing it at a large hospital for about 7yrs and love it



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post #10 of 18 Old 10-01-2012, 07:25 PM Thread Starter
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She's had 3 MRI's of her head as well as 3 cat scans, all came back negative. One of our pediatric neurologists has recommended a pet scan. We're saving for that $1700 tab.


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