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Tue, 01/06/2015 - 23:21
My 14 year old disabled son is currently on Phenobarbital Depakote Topamax and the new dr we saw yesterday added Onfi cause he's been having drop attack seizures and they are having us wean him off the topamax. We had a really hard time finding it no pharmacy had it here they had to order it. Ive read good and bad as with any medicine. Just looking for some personal reviews from any of you. Thanks for any info in advance♡


Hi, my son was diagnosed with

Submitted by on Mon, 2015-06-08 - 07:05
Hi, my son was diagnosed with LGS since 3y/o 9months  and now he is already 18 y/o.  I've done a great risk for my son I stopped all his anti-eplieptic drugs when he was 10 y/o because I'd been unemployed that time and cannot afford to buy those medicines.  He started with Phenobarbital and  when he started to shown other types of seizures like drop attacks his medicines were increase and another type of aed added like valproic acid and topamax. His neuro were experimented which meds worked with him.  For now he is free of anti-epileptic drugs and have great improvement.  Let's talk you can chat to me through FB  I have a good news to you for your son

My granddaughter is on Onfi,

Submitted by on Fri, 2017-07-28 - 11:00
My granddaughter is on Onfi, keppra, vimpat. She is 4.5 n has been on them since 1.5. They have done nothing for her seizures.  She has CDKL5, along with LGS with 20 something disabilities. IF U have a doctor that is ok with CBD oils, talk to them.  A friend who has a  daughter with up to 20 seizures daily, took her off all meds n started the oils.  She is now down to 6 seizures weekly.  Meds cause stomach problems n doctors don't know all the answers. Do what is best for ur child.  I would get him off pheno n topamax, long term is bad.

Onfi 20mg a night saved me..

Submitted by Ashash1316 on Tue, 2017-11-28 - 14:47
Onfi 20mg a night saved me...was controlled for a while but at 32 more meds were needed and onfi helped a lot. Some docs will like to assure you that the sedative part of this benzo has been removed but trust me it has not. If you go that route he will be tired. 

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