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Lennox-Gastaut Syndrome - Looking for anyone with experience w/Onfi or Clobazam?

Responses (1)

ic1217 16 Oct 2013

My son is starting tomorrow. He has Lennox-gastaut. He has been taking Banzel for 3 1/2 years.

Schuesslerdj 26 May 2015

Interested to hear how he does. My brother began taking and we were very excited and impressed with the amazing reduction in seizures. Unfortunately for him we are weaning him back off of Onfi secondary to weakness, loss of coordination, drooling, and severe mood swings. Best of luck!

ic1217 26 May 2015

All the side effects you mentioned. My son will have about 1 seizure every 3-6 months. Because he is so disabled, the mood swings were bad but probably not as bad as they could have been had he had more use of his arms- he would hit himself when he got mad. Sometimes just a little tap. Other times hard enough to bruise. His cerebral palsy got worse. His immune system was better. Just a cold in the last 2 years. And just for a few days.

ic1217 26 May 2015

The weakness and loss of coordination, my son has had since he was 7. It may have gotten a little worse but hard to say since he walks so little. The drooling got better. But his teeth got worse even tho we brush and floss daily.

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