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ONFI ANYONE?
Tue, 01/06/2015 - 23:21Topic: 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 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.