Can anyone weigh in on pros and cons of Amantadine for KLS?  How about medications where KLS is co-occuring with ADHD?

From all the data point we gathered through the Foundation members Amantadine did not appear to have any noticeable impact on KLS occurrence or duration for the vast majority of patients who tried it.  Initially so patients though it helped but subsequent use did not prevent or shorten episodes.  One of the toughest things in reported success of medications is that because KLS is episodic it sometimes goes away just as you are trying a medication so it hard to say sometimes if the medication had an impact or if the episode was just ending.  Similarly in some case patients feel like they might be getting sick, try a medication and then dont get sick - hard to tell if it was the medication or they were not going to have an episode then either.  Nothing at this point has proven over time to be consistently effective however this is one of the medications that people (including me) tried and the side effects were little to none (however I am a CPA not a doctor) so many did not see a harm in trying.

Hi - my daughter (17 years old when the episodes began and 19 now) had episodes for 18 months lasting 3-10 days every 3-5 weeks.  She was put on Amantadine and the episodes disappeared completely within 2 months of being on the antiviral.  She has been completely symptom free and off all meds for 11 months now.

cathytaylor - 23 February 2011 06:36 AM

Hi - my daughter (17 years old when the episodes began and 19 now) had episodes for 18 months lasting 3-10 days every 3-5 weeks.  She was put on Amantadine and the episodes disappeared completely within 2 months of being on the antiviral.  She has been completely symptom free and off all meds for 11 months now.

Is she still on the medicine and is it still working? I read in a book that Amantadine can abort an episode if given at the beginning on an episode.

No - she is not on Amantadine or any other medication.  All her issues went away and never returned (it’s been almost 2 years now).  She was on Amantadine for 2 months.  Once she was put on it, she never had another episode.

I tried Amantadine during the first 5 days of my sons third episode and it didn’t seem to have any effect but I didn’t start it the first day of symptoms because I didn’t have the medicine yet. He is having episodes every two weeks so beofre the 4th episode is suppose to begin if following the same pattern…a day or two before I am going to start giving him the Amantadine in hopes it can extend his good period. He is also on Lithium which I started during his second episode.

We gave Amantadine to our daughter every day (as prescribed by her doctor) for several months (regardless of how she was feeling).  In the first month, she improved, but was still not quite herself - so the doctor increased her dosage to 300 mg/day (i believe that was the dosage).  Then she improved signifcantly.  Once she was episode free for ~ 3 months, then we tapered the dosage back and then eliminated it all together.  She has been on no medications for over 2 years now with no recurrance of any episode (after having episodes every 3-5 weeks for over 18 months in a row…).  It could have been a coincidence - it’s frustrating that there is no way to tell for sure.  I believe that for our daughter, she was fighting some kind of recurrant virus and she responded to Amantadine.

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?