Hello, all

I am writing to request any info you may have discovered about the long-term
side effects of Depakote for seizures. I am the host home mom of DJ. He is
22, with moderate to severe CP and developmental delays, quadriplegic, and
has nocturnal seizures. DJ has been with us for three years. For the past
ten years, he's been on Depakote for infrequent nocturnal seizures. Unless
he is ill, he usually has about one seizure, at about 5:30 a.m. per month. I
have been concerned about the Depakote use as his hair is thinning and his
seizures have increased in frequency lately. Neurologist referred him for
bloodwork and for a bone density scan. Bloodwork was ok, bone scan was
impossible to read as the hardware from his spinal fusion (3 years ago)
dictated that we take a hip shot. This didn't turn out well. In the past few
months, we've been attempting to transition his onto something else while
gradually tapering off the Depakote. Trileptal was given initially and he is
still taking it in addition to the Depakote. He's also tried Lyrica and
Lamictal as adjuncting therapies. Each time we lower the Depakote levels
beyond a certain point, his seizures increase. In addition, they became less
predictable. He began having partial seizures in the daytime, something he
hasn't done before. SO, we put the Depakote level back to where it initially
was and kept the Trileptal dosage as well. He is doing well on this; for the
past month and a half, he's had no seizures.

I am still trying to get a readable bone scan, as neurologist is most
worried about long term Depakote usage because of his ortho issues.
Ironically, his ortho doc is more worried about his seizures and advises
against changing meds that are working on this front. I am unable to access
any records of things he might have tried before for seizures. I feel really
stalled, and obviously have more questions for his neurologist and need to
find someone that can do a readable bone scan. I could use some input from
others who have used Depakote long term about what to watch for and what
might be a better choice. Right now, the balance of what is best on all
these fronts is eluding me....

Thanks,
Sundie R.
Loveland, CO

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