My son was diagnosed with JAE in April of 2017. He responded very quickly to Zarontin once he was put on a full dose of 500 mg/day.
His latest EEG showed no seizure activity. It's possible that the normal results were because of the medication, but he is on a very low dose, given that he had a huge growth spurt and is now 20 lbs heavier than when he began treatment. Optimal dose for his weight would typically be almost 1,000 mg, and he is on half that. In January, he had bloodwork about 8-9 hours after his morning dose, and the blood serum levels were 45 mcg/mL. For this medication, desired therapeutic levels fall within the range of 40 to 100 mcg/mL. And since THAT date he has gained probably about 10 lbs or more. I can only imagine how low his blood serum levels fall just before his next dose of meds.
SO.... The plan is to wean him off the Zarontin and then do a 72-hour video monitored ambulatory EEG.
The doctor told us to cut down to one pill per day (he is currently on 250mg in the morning and 250mg in the evening) for 3 weeks, then to stop the meds. The EEG is scheduled for about 10 days after he's off the meds.
Being a researcher (lol), I saw something online that suggested Zarontin should be tapered down by 10% every 4-8 weeks. So this is WAY different from what our doctor said. Perhaps it's because he's on such a low dose with low serum levels anyway?
I know this is a question for the doctor, but I have literally called him about a dozen times in the past couple of days with questions. I want to trust him, but this is making me wonder. I mean, he's been in his field for a very long time, so i'm sure this isn't his first go-around at this, but still...
Does anyone have thoughts or experiences???
I'm such a worry wart
His latest EEG showed no seizure activity. It's possible that the normal results were because of the medication, but he is on a very low dose, given that he had a huge growth spurt and is now 20 lbs heavier than when he began treatment. Optimal dose for his weight would typically be almost 1,000 mg, and he is on half that. In January, he had bloodwork about 8-9 hours after his morning dose, and the blood serum levels were 45 mcg/mL. For this medication, desired therapeutic levels fall within the range of 40 to 100 mcg/mL. And since THAT date he has gained probably about 10 lbs or more. I can only imagine how low his blood serum levels fall just before his next dose of meds.
SO.... The plan is to wean him off the Zarontin and then do a 72-hour video monitored ambulatory EEG.
The doctor told us to cut down to one pill per day (he is currently on 250mg in the morning and 250mg in the evening) for 3 weeks, then to stop the meds. The EEG is scheduled for about 10 days after he's off the meds.
Being a researcher (lol), I saw something online that suggested Zarontin should be tapered down by 10% every 4-8 weeks. So this is WAY different from what our doctor said. Perhaps it's because he's on such a low dose with low serum levels anyway?
I know this is a question for the doctor, but I have literally called him about a dozen times in the past couple of days with questions. I want to trust him, but this is making me wonder. I mean, he's been in his field for a very long time, so i'm sure this isn't his first go-around at this, but still...
Does anyone have thoughts or experiences???
I'm such a worry wart