The journal of a mother raising a very disabled child
Sunday, October 6, 2013
Seizure update
C's seizures are still at about 3 per day. It seems that this new dose (500 mg. twice a day) of Depakote will not be our salvation. Now I'm hoping for a drug level at our next blood test that will allow an even higher dosage.
My daughter's seizures decreased the older she became, from 5 to 10 every day to 1 or so very slight in a.m. She has taken, I think, every horrible Rx for seizure. She has good results from a combination of depakote and tegretol with the important requirement that there be NO generics whatsoever. We recently had generic depacote and she is covered with a horrific rash over her face, breast and groin area. And it doesn't work; the fillers change the med. Consumer Reports has a great article about this. Generic seizure meds may be discontinued in any case. Try her new meds, but ask the Dr to write "Brand Only."
Thank you so much for sharing your seizure experiences. We have also seen a reduction in the number of C.'s seizures over the years. We attributed it mostly to the efforts we made - changes in meds, Modified Atkins Diet. But I do recall hearing or reading that time can ameliorate epilepsy.
I suppose that having dropped to about 3 seizures a day from, at times, one hundred a day, we are eager to achieve a total victory over them. . Your warning to steer clear of generic seizure drugs and in particular generic Depakote has been duly noted.
We'll be sure to heed it if our health fund ever tries to fob some off on us. (It does tend to do that).
We tend to place blind trust in those drug companies. Gross negligence of the sort you've described is the last thing we'd expect.
I hope your daughter recovers quickly and regains her previous seizure control.
2 comments:
My daughter's seizures decreased the older she became, from 5 to 10 every day to 1 or so very slight in a.m.
She has taken, I think, every horrible Rx for seizure. She has good results from a combination of depakote and tegretol with the important requirement that there be NO generics whatsoever. We recently had generic depacote and she is covered with a horrific rash over her face, breast and groin area. And it doesn't work; the fillers change the med. Consumer Reports has a great article about this. Generic seizure meds may be discontinued in any case. Try her new meds, but ask the Dr to write "Brand Only."
Thank you so much for sharing your seizure experiences. We have also seen a reduction in the number of C.'s seizures over the years. We attributed it mostly to the efforts we made - changes in meds, Modified Atkins Diet. But I do recall hearing or reading that time can ameliorate epilepsy.
I suppose that having dropped to about 3 seizures a day from, at times, one hundred a day, we are eager to achieve a total victory over them.
.
Your warning to steer clear of generic seizure drugs and in particular generic Depakote has been duly noted.
We'll be sure to heed it if our health fund ever tries to fob some off on us. (It does tend to do that).
We tend to place blind trust in those drug companies. Gross negligence of the sort you've described is the last thing we'd expect.
I hope your daughter recovers quickly and regains her previous seizure control.
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