Martha - posted on 10/28/2009 ( 2 moms have responded )
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my son has seizures and they foud out he has frontal lob epilepsy and cpt1 condition i am trying to find more info and how to hadle these situations he has i know some because they found that he had the epilepsy since he was four months oldso now i have to find out more about this cpt1 he has how do i help my son deal with this as he gets older and for myself to keep his safe
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Jennifer - posted on 10/30/2009
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Do they have a reason for the epilepsy, such as a stroke or lesion. I'm assuming they have already done an MRI. . My son has right frontal lobe epilepsy stemming from a stroke. What does his siezures look like? Their are plenty of good meds out there and most people respond very well to them. CPT1 is a mitochondrial enzyme. I'm not sure about the specicific area it has to do with carnitine and long chain fatty acids and the outer membrane of the mitchondria (organelles in each cell that is responsible for energy production) Their is a board at www.parents-2-parents.com that deals with mitochondrial disease. Josiah has a carnitine deficiency and we supplement with carnitor or levocarnitine (not over the counter as it isn't the correct formulation). Call you epilepsy foundation for more info on the siezures. I'm not sure how old your son is now. He may outgrow the siezures and then be more free to do things without the constant surpervision. What type of siezures does he have? Grand Mal, drop attacks, etc. Hugs to you. We drive 5 hours to see the Brain Institute in Miami. They are worth the drive.
Kathy - posted on 10/29/2009
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Contact your local epilepsy foundation. They can help with information, but that's about it.
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