Community Forum Archive
ONFI ANYONE?Tue, 01/06/2015 - 23:21
Topic: Lennox Gastaut Syndrome
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♡
My granddaughter is on Onfi,
Submitted by email@example.com 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.
My son has been on onfi for 1
Submitted by hopeful2_5a2fdce735363 on Tue, 2017-12-12 - 10:00
My son has been on onfi for 1 1/2 years at 10 mg a day (5 mg am and pm). In 10 years, he has been intolerant of any medications with severe side effects and even critical care hospitalizations from adverse effects. They prevent his absence seizures from progressing to tonic clonics and he has not had one since taking onfi. He still has atypical absences weekly in the mornings or when he has a virus or tired, etc, but the intensity and frequency is dramatically reduced by onfi. As usual with benzo's and my son, it robs him of motivation, reduces his IQ performance, and slows him processing speed to super slow, but it has the least serious side effects of any meds so far. Even though he gets black box warning side effects or loses all muscle control from other benzo's, he does not get this with onfi and I understand it is the only benzo that works on a different GABA mechanism. He functions well below his norm on medication, but still functions within the norm, maybe lower norm though. In puberty, his seizures became so severe, he had to be medicated and a medication had to be found even though none could be found through 8 years of trials before. Onfi is the first for him to be tolerated, actually helps and doesn't worsen condition, but has usual side effects.
Hi, my son was diagnosed with
Submitted by firstname.lastname@example.org 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 https://www.facebook.com/ana.c.ingco I have a good news to you for your son