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Onfi/Clobazam
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beautifulbeautifulbeautifulboy posted:
My 11 yr old son has Complex Partial Seizures. Onfi is basically our last chance before considering surgery (he has damage to the right temporal lobe). Does any have any experience with Onfi? Does anyone know where you may be able to get prescription assistance for it? (already tried manufacturer).
Thank you.
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dancer86442 responded:
Hello,

Welcome to our Community. Did you visit our Drug Info page (Located under WebMD Logo) to learn more about Onfi. There are user Reviews posted, too. On the rite you will see 'Popular Discussions' . Chek out 'Weblinks for Epilepsy'. In 4th or 5th reply by Bruce there is a link for Prescription Assistance. There may be another link so scroll thru the rest of the replies.

Has your DR discussed any 'alternatives' other than Surgery? Such as Diet, neurofeedback or Chiropractic Specialist.

We have 2 ladies here who have had surgery & would be Very Happy to give you Info/Support if DR & You decide on Surgery. Please keep us posted. Know we care. HUGS!

Love Candi
 
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dancer86442 responded:
P.S. There is another link for prescription assistance listed in our Resources.
 
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beautifulbeautifulbeautifulboy replied to dancer86442's response:
Thank you, Candi. We have tried different diets, but ultimately, the seizures are coming from the damaged part of the brain (this has been confirmed by another doctor as well). I'm going to go check out those other links..I will keep you posted.
 
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dancer86442 replied to beautifulbeautifulbeautifulboy's response:
Thank You for your Reply. Sad the diets didn't work. Personally, if he were my child, I would start Learning all I could about Brain Surgery. Yes, it sounds Scary, but, I have been Amazed by the Info that others' have shared about Surgery. DRS/Surgeons have been able to Improve their techniques, thanks to those who were brave enough to have the Surgery. Yes, some people still require medication after the surgery, but, it is a Lower Dose. Others' were able to be weaned off the meds after a yr or 2.

I Hope the Sites/links provide you w/ the Info you need for drug assistance. If not, let me know & I will ask other groups for more Info. HUGS!

Love Candi
 
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hula_dancer73 replied to beautifulbeautifulbeautifulboy's response:
hi have you taked about the VNS with yur doc. It mihgt help him.

it is used as a last ditch effort to shorten szs, their freuqency and severity.

I have one and I am still alive to talk about it. I too have Complex Partial szs. I am also on 3 drugs at high doses BEYOND what the books say about the normal adult dose. I do not know aobut levells for kids, though.

I live in HI and fly in from O'ahu to PHX where I used to live and he takes care of me.

I used to have 10-12 szs a day if not more. The VNS has cut them down to 3-4 a month. I do not know what the drug dosages are for kids is.

good luck on your hunt for a surgeon adn a way to treat his szs.

I have 3 lesions on my left Temporal lobe and can not be operated on becuase they are too close to valuable structures. so they had no choice but to do the VNS.

bring that up at his nest visit and see what his neuro saays.

Good Luck Again,

Nancy
I live on O'ahu in the Waikiki district of downtown Honolulu.
 
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saxofone1 responded:
Hello,

Welcome to the family.

Candi mentions that there a few people on this site that have had brain surgery. I think she is talking about a friend and myself. Am I right, Candi?

If you have any questions in regards to this procedure, please ask them. I will notify Dana, aka clarinet2, so that she can also share her experience with you.

What would you like to know? No questions are trivial or unneccesary.

angie


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