Has anyone here been dx with it? I think it's a new diagnostic category but it's made up of familiar seizures types, such as tonic, clonic, partial, drop seizures and a few others. It's supposed to start in very early childhood, 2 yrs of age and up. (my friend's started at 14) The brain scans are usually clear so surgery isn't an option. But it's supposed to have a definitive EEG pattern. Nothing has been very effective on my friend but she does take Tegretol.
She was just given Onfi (generically called Clobazam). As the name suggests this is a Benzodiazapine and judging from the doses used it's in the older class of Benzos e.g. Valium as opposed to Xanax or Klonopin. At one time Klonopin was hailed as an anti-seizure med. I don't think it was very effective and fell out of use. All Benzos are addictive and/or habit forming, as well as causing drowsiness. However they are usually quite inexpensive. But I just read Onfi is very expensive.
Something doesn't make sense here. I have been known to be a cynic.
If Lennox-Gastaut syndrome is a new name for familiar seizure types it might be a pharmaceutical marketing scheme to get an old Benzo FDA approval for use in seizure control. They can then rename Clobazam as Onfi and sell it at a high price. They can also urge the Doc's to write the script so that the generic can't be substituted for the name brand. Way too many docs know little beyond what the Reps tell them. I've hit my head on that wall dozens of times. On the plus side most Benzos do reduce anxiety levels which is a known trigger for most seizures. But some benzos reduce anxiety much better than others and I don't know about Clobazam because for some reason it hasn't been used much. Unless it has dangerous side effects it's worth trying.
These are the reasons I asked if anyone here was dx with Lennox-Gastaut syndrome. I don't know if my friend was told she has Lennox-Gastaut but she was given Onfi. I hope someone tried it and that there were no real side effects that made you quit the drug?
I'm sorry this is so long.
She was just given Onfi (generically called Clobazam). As the name suggests this is a Benzodiazapine and judging from the doses used it's in the older class of Benzos e.g. Valium as opposed to Xanax or Klonopin. At one time Klonopin was hailed as an anti-seizure med. I don't think it was very effective and fell out of use. All Benzos are addictive and/or habit forming, as well as causing drowsiness. However they are usually quite inexpensive. But I just read Onfi is very expensive.
Something doesn't make sense here. I have been known to be a cynic.
If Lennox-Gastaut syndrome is a new name for familiar seizure types it might be a pharmaceutical marketing scheme to get an old Benzo FDA approval for use in seizure control. They can then rename Clobazam as Onfi and sell it at a high price. They can also urge the Doc's to write the script so that the generic can't be substituted for the name brand. Way too many docs know little beyond what the Reps tell them. I've hit my head on that wall dozens of times. On the plus side most Benzos do reduce anxiety levels which is a known trigger for most seizures. But some benzos reduce anxiety much better than others and I don't know about Clobazam because for some reason it hasn't been used much. Unless it has dangerous side effects it's worth trying.
These are the reasons I asked if anyone here was dx with Lennox-Gastaut syndrome. I don't know if my friend was told she has Lennox-Gastaut but she was given Onfi. I hope someone tried it and that there were no real side effects that made you quit the drug?
I'm sorry this is so long.