KLS Foundation Discussion Forum

Vitamin D

2008-10-14T14:04:24Z

My son went in for a check up because he was feeling very fatigued even in between episodes. The doctor at Mayo did a vitamin D test and found an extremely low level, one of the lowest he has seen. He went on 5000 IU’s of supplements per day, within 2 weeks was much, much better. After three months, his level was more in the normal range. Interestingly he also has not had an episode since March when he went to Mayo, where before he seemed to never truly come out of it (a year of fog). He was homebound last year because he could not keep up in school or even wake up to go to school (12 week episode, 8 week episode), now he is back in school and more normal than I have seen him in 2 years and the only thing different is the Vitamin D supplements and melatonin a couple times a week to help regulate his sleep when he needs to.

I wanted to pass this information on since it was such a major difference in my sons life. There is now also a ton of information out there on what a low vit d level can effect..worth checking out, relatives and friends that have seen the difference in my son cannot believe that a supplement could make such a difference, we are all now taking it regularly. This is definitely something to watch, specifically with the episodes and lack of sun during them. The food and multivitamins generally are not enough. My son also goes to the tanning bed 2-3 times a week as an extra source of vitamin D.

Can Provigil help KLS?

2010-04-21T18:18:41Z

I was wondering about what drug to take to help control my KLS…a friend told me about Provigil,he has MS,i know thats completely different but he said it helps him to stay awake!Im desperate,I cant go on sleeping like this anymore,I sleep atleast 20hours a day!!

amantadine with Gabapentine has a positive impact

2013-02-19T06:57:14Z

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. I wish we could subscribe to a study for free to see if it is going to work.

Did somebody have experience with similar medication constellations?

Amantadine

2010-09-29T19:45:23Z

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

Any History of Alcohol Allergy in KLS Family?

2008-05-09T20:30:56Z

Do any of the KLS reporters have a history of alcohol allergy in their family? My maternal grandmother was massively allergic to alcohol - both externally and internally. Even one swallow of alcohol would bring on bizaar behavior and physical collapse. If she came into contact with alcohol, she developed an extreme rash and blisters. As a psychiatrict nurse, she was forced to change specialties when Thorazine was introduced because of an allergic reaction to the medication. Has any KLS reporter developed anaphylactic shock in response to an alergic reaction?

I’m a 44 year old single mother of two. It’s not easy finding information on Adults with KLS

2010-08-10T21:23:23Z

I’ve watched many videos on KLS, YouTube, here and read many articles but they are all on teens. I need more info on adults. This disorder has taken so much of my life away. I’m depressed most of the time during episodes that can last months (not every day but most days) and I’m not there for my kids, I’m broke and almost at bankruptcy and am gaining so much weight I don’t want anyone to see me. I’m coming to the end of intermittent episodes that have been going on since February and now it’s August. I need my life back. Why isn’t there more info on adults?

How old were you when you had your first episode ?

2007-08-09T22:59:26Z

I was 9 years old when I had my first episode.

What happens to you after you come out of an episode?

2012-02-29T17:58:04Z

I just went through a ten day episode and my body has been feeling a lot weirder than it does when it usually “recovers.”

I usually can’t sleep for the next few days as my body adjusts to soo much sleep before. I feel fat/bloated, I have been having to urinate about 10 times a day even when I don’t drink water, I have an excessive amount of energy although I am tired from not being able to sleep, my hands sometimes shake,

this episode I barely ate any food at all because no one was here to take care of me… now I feel hungry literally right after I eat anything. I have been eating all healthy foods and exercising and eating large amounts of food.

Does anyone experience similar problems?

do you leave the house during episodes or recoveries?

2008-09-15T11:52:18Z

i was wondering if any of you leave the house during episodes or recoveries???

when i have my episodes i won’t leave the bedroom. then when i start to recover
i start slowly moving on to the living room. then towards the end of the recovery i start
sneaking out into the backyard very very late at night in the protection of darkness when
the chances of being seen by people is very low. then i gradually start sneaking out onto the back steps during the day if i don’t
see or hear anybody outside.

then eventually i’ll go on car rides with my wife.

but i don’t go out by myself until i’m completely “normal” again.

do others act like that, or do you still go out during episodes/recoveries???

do some of you also become afraid to be around other people during episodes/recoveries???

how do you deal with it??? i’m always so afraid because i can’t tell if somebody is talking to me or if i’m just imagining it. or
i can’t tell if i’m actually saying something, or if i was just thinking about saying something but didn’t say anything. i can’t
tell if what i’m seeing is real or if i’m making it up, or if what i’m hearing is real or if i’m hearing something else. it’s so hard
to tell what’s really going on.

oh and my wife discovered that during my recoveries i’m absolutely horrified of uniforms. she said anytime i see a uniform i panic and go back to bed. apparently one time during one of my recoveries i asked her to go for a walk with me very late one evening after it was dark. but once i got to the door i saw an ambulance outside paniked and went back to bed.

Homeopathy

2009-06-24T07:07:19Z

My daughter has had KLS for the last 4 years. We were lucky that the school noticed her bizarre behaviour and referred her to a behaviour clinic who then referred her to a neurologist who had experience with KLS. It has been a hard 4 years but I am hoping the episodes are over.

I’ve been training to be a homeopath for a few years and had tried to use homeopathy to help. Often it would, but only to “push” the episode later rather then end it completely. The two most useful remedies for my daughter were Conium Maculatum 30 ch and Cannibis Indica 200 ch. The cannibis remedy is hard to get as the raw material is restricted. For anyone who doesn’t understand homeopathy, the raw material is processed into a tincture and then is diluted over and over and shaken to extract the energy signature. Thus even the cannibis remedy has no ability to make one high, and the conium one can’t poison you.

The breakthrough happened when I commented on my online study group and a homeopath in the US suggested using the sarcode (homeopathics made from healthy glandular tissue) Hypothalmus. Due to the Stanford studies we figured that regulating the hypothalmus might help. These remedies are hard to get, I was able to purchase it from Aaronson’s Pharmacy in Vancouver. We chose a 9ch which is regulatory to the hypothalmus. This was 10 months ago and my daughter has been episode free.

Originally her episodes were one week of every month, they they stretched out to three months between episodes but the episodes would then be 3 weeks long. Her longest being 22 days on my couch. It may well be that she just outgrew it, but I’m hoping not.

If anyone wishes to try homeopathics, please visit a homeopath. Unlike regular medicines the homeopath needs to do an assessment to decide which remedy is right and often there are cases where another remedy must be given first to allow the right remedy to work. Otherwise, just trying it yourself may give good results or may do nothing.

I just wanted to share our good fortune with homeopathics. I really think it is the best way for really complex disease.
Theresa