Generic Name: Onfi for Lennox-Gastaut Syndrome (clobazam)
Onfi for Lennox-Gastaut Syndrome Reviews
"A caregiver review. Started our adult daughter on Onfi for LGS (Lennox-Gastaut syndrome). In my opinion, there is an interaction between Onfi and psych medication. It appears that the interaction amplifies many of the Onfi side effects (physical and behavioral). Since Onfi was the only new variable in her medication regimen, what we observed was more than mere coincidence. Please carefully read the FDA-listed side effects of the medication. Onfi is the neurology team’s new and favorite drug. They can’t or won’t acknowledge that the listed side effects are the result of Onfi. Neurology will go out of their way to blame everything else under the sun."
"Justin became very shaky, weak, lost stability that he has not gained back. He went into massive seizures when on the drug. After two hospitalizations, we took him off. It has been over a year, and he continues to have difficulty with standing up in the mornings and walking all the time."
"This has been the best medicine for Lennox-Gastaut Syndrome in our son's 11 years. It was tough going for about 6 months of severe highs and lows of crying to laughing hysterically. But getting through that has been amazing. He's more vocal, his pupils are not staying dilated, and he seems to understand more. I would tell any parent looking for help to please give this medicine a try."
"I’ve been taking Onfi and had about five seizures a year now. The side effects are I can’t walk good, sometimes get mad very fast and I can’t even stand be around people anymore. I want to get off this drug. I’m starting to take magnesium, zinc, d3, b complex, omegas have not had a seizure since June and sorry that the doctors trying to keep me on this drug ."
"It has an opiod effect. I forget words I've know all my life. I am more fatigued. My doctor prescribed it for me "because". I haven't noticed any effect. Coming off the drug, my foot and upper leg get shaky. It is also a very expensive drug."
"The worst of 32 tried over the past 41 years."
"Worked really well for several months, then breakthroughs. Adding Banzel now."
"It works really well and causes less seizures and makes me happier and relieves stress."
"I've been on Onfi for 6 months and no change, I'm having more warnings and massive seizures so it is not a good drug for epilepsy. The side effects are sedation and fatigue I'm on 5mg"
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- Lennox-Gastaut Syndrome
