Side effects of Felbatol?

By Anna Sallee from Van Buren, AR on January 10, 2006
Category: Felbatol (Oral)

There have been some changes in my 15-yr. old son's condition since he began taking Felbatol less than a year ago. He has intractable seizures and PDD-NOS. The first few months of taking Felbatol, his seizure control was greatly improved for the first time in his life. The only immediate side effects we saw were sleeplessness at bedtime and a 10 lb. weight loss, which he needed anyway. The sleeplessness was treated by our psychiatrist with Seroquel, which seemed to take care of it. All was well for awhile.
Then, out of the blue, my son had 2 separate episodes of Status Epilepticus that each lasted more than 40 minutes. They occurred within 2 weeks of each other. The only thing that stopped either of them was Diastat; the Ativan that usually works was totally ineffective. Our neuro increased the dosage of Felbatol from 600mg 3 x a day, to 1200mg 2 x day and 600mg at bedtime. The target dose was to be reached at the end of 2 weeks, by the neuro's schedule.
From the very 1st day of the increase, the seizures increased in frequency, severity, and length. By the time my son was admitted to the hospital for an emergency video-monitored EEG, he'd been having the seizures nearly every day for 2 weeks. At the hospital, blood levels were done, but I was told we'd have to wait about 10 days for the Felbatol results. The other levels (for Lamictal & Gabitril) were in the therapeutic range.
That was almost a month ago, and after repeated requests for the Felbatol results, the dr. told me that they "don't really measure Felbatol that way". I don't know why I wasn't told that to begin with.
In the meantime, the seizures have worsened, accompanied at times with hallucinations that keep my son (and me) awake all night, because he's afraid to sleep. That's also a 1st for him; he's never hallucinated before at all. We've had to call an ambulance on 2 occasions because even after the Diastat stopped the seizure, my son was incoherent. I call our neuro daily to report seizures, and to voice my concern that the increase of Felbatol may be to blame, but it seemed to fall on deaf ears. Finally, after 2 more weeks of this, our neuro called me herself and apologized for her lack of response and she decreased the Felbatol back to the original dose: 600mg 3 x a day.
My son has also broken out in an odd rash from shoulders-to-toe, for no apparent reason. That appeared after taking Felbatol for a month or so. Our pediatrician didn't know what it was, but prescribed lotion, which has been ineffective. The rash is little, hard, red bumps that don't seem to itch.
Sorry this is so long, but I wasn't sure how much information to share with you, so I figured too much is better than not enough.
Thanks for your attention, and I look forward to hearing from you soon.
Sincerely, Anna
Mom to Tyler, 15, with Intractable Seizures & PDD-NOS. Felbatol, Lamictal, Gabitril, Risperdal, Seroquel, Ativan, Diastat, & VNS.

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