My son has KL for two years now, from 13 years old (he is now approaching 15), very long episodes, from one to 3 months, often with only about a month symptom free in between. We started Amantadine last year, 100 mg a day. It made his episodes much lighter, depression and other psychiatric changes accompanying the episodes much milder. We kept giving it regardless if he was in episode or not. The whole summer for 3 months he was symptom free. Then an episode started in October. While on Amantadine 100 mg). A doctor decided to stop the Amantadine two weeks into the episode. Full blown episode developed until the end of November (sleeping 16-18-20 hours, heavy depression and lethargy, mutism, can’t do much during waking hours).
Then we decided to start the Amantadine again, 200 mg, and right away the episode reverted into a lighter episode between the end of November and beginning of January, sleeping 14 hours a day, light depression, less lethargy, no mutism, able to study with tutor).
It is usually very difficult for my son to go out of episode, it lingers for some months, sleeping 12-14 hours, occasionally 16, and he feels very tired.
Then in the beginning of January we got prescription for 300 mg Amantadine in the morning and together we started Gabapentine before bed, 100 mg for 2 weeks, 200 mg for two weeks, then we are supposed to go up to 300 mg and stay there. The effect of the combination was astonishing. It started working since day one, by gradually diminishing the sleeping hours, and by making him more alert and less tired and lethargic during the waking hours. When we arrived at the dose of 2 gabapentine, his depression lifted away, and we still stay at 200 Gabapentine. The episode is lifted and now, February 18th, and we have a completely clear time, and a boy who completed his school semester with the high grades he always had ( he has not been regularly gone to school for 2 years now, he only goes between the episodes and works with tutor). I still see some depression, but the usual sense of humor is back, and there is plenty of time for friends. Next week we will ask the doctor if we should go up to 300 Gabapentine or we should stay at 200 since it is helping.
We don’t know how it is going to work if we keep giving it. We don’t know if it would prevent an other episode, if it only would make the episodes easier, if it going to be useful when he comes out of the episodes,or it would stop working altogether at some point. If it works, it means that we have some sort of glutamate and GABA malfunctioning which needs to be regulated.
Our doctors think that we need to add something to take care of depression and mood swings, but not before we build up the full dose of 300 mg Amantadine with 300 mg Gabapentine and see how the combination works.
The doctors are thinking of giving him lamictal (because of similarity between KL and bi-polar; my son also has the reversed circadian sleep pattern at the end of the episodes, where he can’t sleep during the night and sleeps during the day at the end of the episodes, followed by a very short (one day) and very mild hyper mood (not mania yet, but some similarities).
I am not sure we should give lamictal, since these mood changes and the depression are strictly attached to the sleep episodes, and are gone as soon as the episode ends.
I want to try Transcranial Magnetic Stimulation, but it is still experimental for adolescents and it is hard to make insurances to pay something. THere are no studies like that for adolescents in the New York area.
Did somebody have experience with similar medication constellations?