Weaning off Zarontin (ethosuximide)

Elljen

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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
 

Nakamova

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What is the reason for the taper and the EEG? Is it the hope that your can go med-free, or do they want to provoke a seizure in order to get a sense of the type and location in the brain?

If it's the former, then the taper should be "low and slow" -- stepping down at small increments over a long enough time to give the brain to adjust at each level. The lower initial dosage level can also be a factor, as well as the length of time an individual has been on a med. (In your son's case, a year is relatively brief.) At minimum, unless there's an drastic reason to do so, the taper should occur no faster than the ramp-up did.

If it's the latter scenario though, perhaps there's less concern about the likelihood of a seizure occurring, because that would be a useful outcome.

Regarding your son's dosage -- some folks achieve seizure control at levels outside the recommended range, both on the low end and the high end. I've had that experience with so-called "sub-therapeutic" levels. So even though your son's dose is low, it may be enough to control his seizures, regardless of his weight increase.

I urge you to be a "squeaky wheel" with your son's neuro, and keep pressing for answers and reassurance about the taper schedule. A crucial part of the doctor's job is to make sure you are comfortable with the decisions being made about your son's health.
 

Elljen

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Thank you for your informative response.

This is to see if he has "outgrown" his seizures. My understanding is that most kids with JAE do NOT outgrow it (vs kids with CAE). However, the doctor said it's not unheard of and that every case is different.

When he began meds about 18 months ago, he tapered up pretty quickly. Started at 250 mg once per day for, if I remember correctly, 2 weeks. Then added the second dose. So He was at his current dose within less than 3 weeks of beginning to take medication.

I guess it's a bit tricky to do a long taper because he's only on 2 pills per day. The capsules are only available in 250 mg, and they can't be broken in half. So the doc had planned us to go to from current dose of 2 per day, to 1 per day for 3 weeks, to none. I guess I could throw in a couple of every-other-day single doses for a few days. Not sure if it matters or not.

I honestly suspect that he is just having success at a sub-therapeutic dose, as you've experienced. But the doctor's thought was that, IF he is indeed outgrowing it, better to try weaning now than wait until he's closer to driving age (which would be in two years).

I agree with your comment about pushing for answers. I guess I'm hesitant to push for a longer taper just b/c then we potentially run into ski season, and if he has a seizure then he has to put off skiing. Skiing is EVERYTHING to him. OMG, you can't even imagine. Skiing is what gets him through the drudgery of winter/school. He pours over ski magazines. Studies ski trails. Watches ski videos. Talks it. Dreams it. He would be crushed, no doubt fall into a depression of sorts, if he can't ski.

We figured if it doesn't work, taking him off the meds, then maybe we'd have time to get him back under control by ski season.
 
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Nakamova

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With the size of the capsules, it sounds like you don't have much choice. Plus there's the incentive of being off meds sooner rather than later. So during the next 3 weeks of tapering, your son should be careful to avoid any extra stressors (like fatigue) and should pay attention to how he's feeling.

It's a good sign that he responded so quickly to the Zarontin -- that implies that he would be equally responsive to it or to other meds if he had to go back on medication. Fingers crossed that he won't need to though.
 

Elljen

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Alas, he's a naturally anxious kid and prone to insomnia. Ugh! Not ideal. Last fall, we started him on a small dose of Zoloft (having tried therapy, biofeedback, etc). He is doing much better on it, but he does sometimes struggle with sleep and is a bit of a worrier. He's the type of kid for whom you have to let him know that its really OK for him to not get a perfect grade. I know some parents would love that, lol! Still, the Zoloft has helped a lot with the anxiety and sleep (which was partially due to a fear of not being able to sleep). And he loves his biofeedback before bed.

We do need to travel one weekend for an event that has a bit of a late night. Not tragic, though.

I desperately hope that he doesn't relapse, especially during ski season as I know it could be months before a relapse could occur. Maybe the 72-hour EEG will give us peace of mind, although I know it's not a guarantee.

Now I need to stop researching. I keep finding anecdotal stories about how kids who were weaned off meds while in remission then struggled to regain the remission if they relapsed. And I even found one icky study that had ALL JAE kids relapse after withdrawal, with less than half regaining remission on their previous dose of meds. Granted that study had about 8 people in it, so I know better than to rely on it at all.

Someone kick me off the internet! :rolleyes:

Thank you so much for your response. I know there are zero guarantees either way, but it helps to get some feedback and thoughts. It means a lot to me.
 
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My child also has JAE and is Zarontin. I’m wondering how your son did off of the meds?
Also, did he have side effects at the beginning? My kiddo is frequently naseous/dizzy/exhausted. She’s on 500mg/day.
 

Elljen

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He did OK off the meds, and we didn't notice any seizures. He didn't either (supposedly they don't always know when they have absence seizures, but he knew when he had them as he wasn't totally out of it -- more like things foggy with him sort of stuck staring in the distance and not really hearing us).

After he was off the meds for a while, he had a 72-hour video EEG. The EEG did, unfortunately, show some spikes. His neurologist said he had 2-3 epileptiform discharges per day, with each one being about 1.5 seconds. She said in many cases of absence epilepsy, they often occur much more frequently and are longer. In fact, the issue when we met to discuss the results was weather to try keeping him off meds or put him back on. If the discharges were 3 seconds or longer, they’d want him back on for sure. But with them being so short and infrequent, it was really our decision. The caveat was that rarely, when people are off their epilepsy meds a while and then have a recurrence, the original meds occasionally don't control the seizures as well as they did prior to stopping the meds.

We felt, and our son agreed (at 14 years old, we wanted him to have some input), that since he felt fine on the meds and didn't want to chance anything, especially as high school and driving are on the horizon, that we'd just continue the medication.

How long ago did your daughter start taking the Zarontin. I don't think my son had any noticeable side effects when he started, but I'm sure many people do. He started at 250mg and then went to 500 mg. This was when he was 12 years old and about 85 lbs. He'll be 15 in three months and is just over 120 lbs, and he's still on the same dose, which is pretty strange as his blood serum levels are extremely low. The thought was to keep him on that dose unless he had another seizure, so the neurologist figured that he must just do well on a sub therapeutic dose.

That said, at our next visit with her, I do want to discuss possibly raising his dose as his serum levels were crazy low even before he reached this weight. I really, really don't want a breakthrough at any time, but especially now that he's starting high school and is just over a year away from driving.

As to what your daughter is feeling, my son has had some of that, but he actually just seems prone to it. He was certainly exhausted when he was diagnosed, but he has a long history of insomnia and was going through a nasty bout of it at the time (possibly contributing to why the seizures manifested then, although we don't know). He is prone to headaches, and he had a nasty bout of them about four months after he was diagnosed, but he had already been on the Zarontin for a while without problems then. He also has some hard core carsickness, and shortly before he began having seizures, that stopped responding to dramamine to the point that he needs Zofran before any long car rides. But that started before the seizures.

How old and how big is your daughter? I'm sorry she is (and you are) going through this.
 
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