9 year old on Trileptal - advice needed

[cdmariscal]

hi all, my son had a grand mal seizure at 4. he did not have a fever or was sick, he simply woke up in the morning and had a seizure. He's never had another one. He is now 9 years old and weighs 65 pounds. He's on trileptal twice daily, 150 mg morning and another in the evening. anyway, we do EEG's 1x a year. they always come out w spikes. so i went to the neuro today and he said we had 3 choices 1) stop giving him Trileptal and hope that he doesn't have another seizure since he only had 1 and has not had a recurrence in 5 years 2) keep doing the same thing since he has not had another recurrence which is 150mg Trileptal in the morning and another in the evening or 3) increase his dosage to 300mg in the morning and 300mg in the evening which is the dosage he is supposed to be taking. he said either decision would be fine since he has not had a recurrence in 5 years. it's a tough call bc his EEG still shows spikes. it's a risk to take him off the meds bc he may have a recurrence but we'll never know if we don't try. from my side, i don't want another seizure, but i also don't like him on meds. he's been on the them 5 years and he's never had another seizure. it's a difficult decision for me. just wanted to get your advice. thanks!

 

[epileric]

IMHO, If he's been having spikes on an EEG but no seizures then I don't see why not try to remove or lower the dosage of trileptal. I see the main concern here to be the seizures, if they're under control then why not see if an AED is necessary?

Also welcome to the site. There's a lot of people with a lot of experiences to contribute their opinions.

 

[Nakamova]

I agree with Eric. After 5 years on meds it's worth seeing if your son can be seizure-free without them. If you decide to have him go off the Trileptal, do the tapering very slowly, since too fast a withdrawal can cause a seizure. And by slowly, I mean over 3 to 6 months (even if the docs say it can be done in a shorter amount of time).

 

[Meetz1064]

this is

something that you as a parent must decide, but if I were in your spot, I would try to take him off the Trileptal, and replace that with good nutrition, and neurofeedback. Using neurofeedback, one can train your brain to not kindle itself (or not seize). Check out the following thread for some really good information on it:

Neurofeedback Rebecca's Story

Also, I would combine the ramping off, and switching onto the diet and neurofeedback, so that you are well-covered. AND DO THE REMOVAL OF THE MEDS SLOWLY. This will make it far less likely that he will seize.

Take care,

Meetz
:rock:

 

[joan]

When you look at my 20 yo sons EEG, he usually only has 1 grand mal a year, the EEG would like like the kid seizes all the time. He doesnt. My daughter 16 with only myoclonics, her EEGs 98 out of 100 times will show normal. Rare we get a spike from her.

IF it were my child, and he had only the one, and 5 year later? Id try to get off the med. You can always go back.

Do you know what triggered the first one? Was he sick? exhausted? hurt?

Not an easy call, I wish you well.

joan*