Advice please on medicines- clobazam or lamotrigine

[ccnm4]

Myson Nicky is 13 and had a bad fall at 7. He recovered fully but began to develop some seizures that gradually increased in frequency until he was diagnosed with complex partial seizures 2 years ago. His non-seizuring eeg was normal and he has a small frontal lobe lesion on his mri, so his epilepsy was diagnosed as non-specific. He has been on 25 mg clobazam for 1 1/2 years seizure free. However, about 2 months ago he had 2 seizures at school and then that night he had a bunch more seizures that were different, almost rages with manic laughing and crying. He has had a number of these type episodes since then. We began to put him on lamotrigine and he developed even more worsening of these new seizures - possibly based on anxiety about the lamotrigine rash.

Based on the videos we took of him ,displaying these new seizures, and another non-seizuring, normal eeg, our epitologist diagnosed these new seizures as psychogenic seizures. I can understand this based on his anxiety and mine as well. I've made an appointment for a psychologist.

However the question is ..do we continue on the lamotrigine therapy upping it to 200mg, and eventually weaning him off the clobazam ( which worked so well in the past and could have just stopped working because he has grown so tremendously - he has gained 25 pounds and 4 inches in the last 7 months). We upped his Clobazam since his first break through seizures by 10 mg , he is now on 35 mg. Clobazam, which may be continuing to work on the original complex partial epilepsy, which I have not seen any more seizures of since the ones he had 2 months ago? I don't want to put him on a new drug, Lamotrigine, of which he is now in the third week of, if the clobazam is still working? Or would it be better in the long run to put him on Lamotrigine anyway because of the tolerance rates of clobazam? Or are the tolerance rates the same for the 2 drugs, will Lamotrigine stop working too? But what if Lamotrigine doesn't work for him at all? The eptoligist here told me if I am putting him on the Lamotrigine for these new seizures to take him off of it.. but what about the 2 he had in February? Anyway I think the doctors are sick of me and my questions but this is my kid. I'm sure I present a case to them as I have anxiety and always ask questions concerning my son's epilepsy. But I love him so much. Talking to my pharmacist, who is great, she says that she's seen lots of people on lamotrigine and no one except Nicky on only clobazam. She feels the best solution is lamotrigine because of clobazam's tolerance rate but I would love to hear from some people who have been on lamotrigine long term. I would love to hear that lamotrigine has worked for somebody for years!!

 

[Nakamova]

I've been on Lamictal, seizure-free for 3 years. It would be unusual for someone to develop a tolerance to Lamictal since, unlike Clobazam, it's not a benzodiazepine. Benzodiazepines are a class of drugs that have risks related to tolerance, physical dependence, addiction, and abuse. Withdrawal after long-term use can be very unpleasant (similar to withdrawing from alcohol or barbiturates) and needs to be done very, very slowly, even after short-term use. For these reasons, doctors are reluctant to have people, especially kids, take them for long periods of time. Sooner or later -- preferably sooner -- your son needs to switch meds.

Lamictal has a good track record for having the fewest cognitive side effects, which may be why the epileptologist had your son try it. But it may or may not work out for your son. AEDs are unpredictable, and what works for one person may not work for another. In some cases, meds will trigger new seizures. It's not unusual to try 2 or 3 meds before finding the one that works best. So while it's worth giving Lamictal a try, it may be necessary to try another med if it's making things worse.

It is possible that your son's seizures ARE epileptic in nature, despite the negative EEG -- partial seizures can originate too deep on the brain to show up. It's also possible that he has both epileptic seizures and psychogenic ones. This might explain why the clobazam has been so helpful, since it has anti-anxiety properties. And there's the third possibility that the seizures are only psychogenic in nature. Ask your epileptologist if there's even a slim possibility that the tests have missed his epilepsy. And ask what his options would be if he withdraws from both the Clobazam and the Lamictal, and continues to have seizures -- seizures that aren't helped by the psychologist.

One more thing to consider is taking a dietary approach to see if that helps at all. You might want to read RobinN's http://www.coping-with-epilepsy.com/forums/f32/neurofeedback-rebeccas-story-2733/ When meds just made things worse for her daughter, Robin decided to try neurofeedback and a nutritional approach, and has great success.

When is the appointment with the psychologist? Is there a possibility of getting a second opinion from a different epileptologist?

 

[ccnm4]

clobazam wean

Thank you for your advice. I have decided to continue him on the lamotrigine and hopefully, with no rash, get him to 100 mg. That will be at the 8 week mark and then start the clobazam wean. He will go up to 200 mg lamotrigine over the next 8 weeks after that. They have told me to start to wean him at 2 1/2 mg clobazam every 2 weeks at that time. I don't want any rebound seizures; do you have advice on the wean? I will go as slow as needed. At their pace he will be off the clobazam in 28 weeks. I was thinking even slower for example 1 1/2 mg. At 1 1/2 mg every 2 weeks he will be finished clobazam in 46 weeks but I know this is slow but we should not have the rebound seizures or side effects that way.
any advice?

 

[Nakamova]

If you think he can go at the slower pace, it won't hurt, and it may help. Or, you could start him on the pace the docs suggest, and if he starts to have any withdrawal issues, slow down.