I am so grateful to have found this site! It has already helped answer so many questions for us, but it also generated more questions that those already well into the KLS life experience can hopefully help to answer. My son was finally diagnosed after dozens of trips to every kind of medical specialist available&  the continual accusation that I was suffering from Munchausen by Proxy-  a truly nightmare filled experience! About a year ago he caught a virus which led him to sleep about 7 days. Then 4 months later the same thing occurred and he slept for 10 days. Then in July of this year he again caught a virus & proceeded to sleep for 3 1/2 months. He was awake for about 6 weeks, but not quite back to his awake like self. Now he’s back to a deep sleep cycle.
He has had trouble with high triglycerides & high blood pressure in the past, but he had corrected that with dietary changes & physical activity. However when he’s in his deep sleep cycle he craves nothing but high fat, high sodium content foods. When we work to ensure that those types of things are not available, he just doesn’t eat which stresses me out even more. Has anyone else dealt with this? Is there any way to force physical activities during a sleep cycle? Just getting him up the stairs from the basement requires a nap.
How do you help others understand the condition better? We had a family gathering yesterday & my son was included in spite of being deep in his sleep cycle. His eyes were open & he offered a 1 or 2 word comment to the conversation from time to time. Of course because he looks like he’s awake even when he’s not they think he’s faking. Is there anything available to share that gives anicdotal experiences like this, so they can understand more than just the formal information that the medical community has provided?
Also, some of my son’s friends have talked about holding a fund raiser to help fund research for KLS-  have any of you ever conducted any fundraising events? How do you go about getting something going? Where should the money being raised be sent to do the most good?

Hello.  My son is now 13 years old and had his firs KLS episode when he was 12 in October 2009.  He is currently having another episode.  As you said, it is a nightmare filled experience.  His episodes last from 10 to 14 days.  This would be his 7th episode.  Before his first episode back in oct 2009, he had braces put on his teeth.  He was also hit very hard in football and he had a bad ccough and cold.  Not sure what triggered the first episode.  He also craves high fat foods. I do find he enjoys blueberries.  We also make him high protein shakes and he takes a multi vitamin and a Vitamin C pill.  He sleeps for about 18 to 20 hours a day during the episodes.  We will no do any physical activity.  He is also very child like.  At this point we have been fortunate that the episodes only last a maximum of 14 days.  I don’t know what I would do if it was for over 3 months.  I’m waiting to hear if there is anything that could possibly prevent these episodes.  One thing I will do is get him a flu shot.  It is possible that some kind of virus was the trigger to this condition

Thanks for your response-  it is great to know that we’re not alone in all this. Alex is on his 8th day of sleeping & is showing no signs of that ending any time soon. He is taking a mega dose of Vitamin D because his body was completely void of that when we started testing him to figure things out. He refuses to take his vitamins, but he will drink V-8 fusions, so at least he’s getting some vitamins in spite of the lack of quality food he is consuming.  You’re very fortunate to have a pattern that you can work from-  for us, it’s hard to know what to expect. We are suppossed to keep track of each days activity, or lack there of, to see if there is a pattern that we’ve somehow missed. Just before he enters a deep sleep cycle he starts to turn sort of an ashen color-  have you noticed anything like that with your son?

Today would be the 7th day for Joshua.  I have not noticed in change in skin color.  He does enter and exits each episode gradually. On day 1 he gets a bit confused.  He wakes up during the night in a confused state.  On Day 2, it gets worse.  he begins to cry because he realizes what is happening. By Day 4, the symptoms have fully taken over.  The doctors here in Toronto Canada have perscribed a drug the might possibly prevent or reduce these episodes.  I will get back to you about what drug they are perscribing.  I was also told by the doctors that this could go on for up to 10 years before it goes away on its own.  They also said that each episode could also be the last episode.  Wouldn’t that be wonderful.  I’m very worried about giving my son medication that may or may not work.  I need to know the side affects etc.

Our doctors have wanted to place my son on medication as well, but based on everything that I’ve read- nothing helps & in most cases it just makes things worse. I asked Alex’s doctor to give me information about tests on adolescents who had been given the recommended drugs & he said that no information was available, all research had been done on adults & that they did not know the long term affects. Alex was once given medication for another condition-  I trusted the doctor & in the process nearly lost my son to liver failure. Gratefully his liver improved once the medication was stopped. From our understanding KLS generally runs 4 - 12 years & then they are able to lead normal, healthy lives, so at least we know that even though right now things are tough, our sons still have bright futures ahead!

Eating sweets and other things that patients like is very typical with KLS – I believe it goes along with the general lack of inhibitions which comes across in various forms, but the consistency seems to be that patients eat and do things they like most and don’t want to do anything they don’t like.  In terms of exercise it depended greatly on the episodes – in deeper episodes I slept 20+ hours a day and did very little – other than ask for fast food, chocolate, etc when I was awake.  In a couple of the less severe episodes I was able to even play basketball – although I was later told (did not recall much ) that I often did not guard my man or did not always get back on defense etc – ie was still a bit spacey.  My family tried to steer me toward healthier options that were also things I liked in terms of food – as working off the 10 pounds at the end of the episode and getting back into shape was frustrating – would miss portions of the season only to come back out of the episode with a clear head but physically out of shape.  Medication at this point is also a hotly debated issue – I tried a few with no apparent impact then stopped at 22 and had episodes till 27 and have not had one in the last 9+ years.  There are some that we will hear about from time to time, none of which have been proven to be effective consistently.  Given the episodic nature of the illness it is hard to tell if a medication worked or the episode just ended on its own? Did it prevent an episode or was I not really starting one?  Sorry there are not better answers at this point but we continue to search for a cause and a cure.  Fundraising was also mentioned in this string of posts.  The members of the Foundation have held various fundraisers – including movie nights at a local theatre, dinners, running races/athletic events, the funds have been sent to the Foundation which has continued to sponsor and provide seed funding for research; promote awareness at conferences and through the website; and next summer will be putting on the first global KLS conference in San Francisco.  One idea that I recently had in talking to a new member that wanted to attend the conference but for which the cost was going to be an issue was to fundraise to be able to attend the conference.  While personal fundraising does not technically have the tax benefits to the people donating if anyone is interested in this type of directed fundraiser and would like to work with the Foundation you can contact me or the Foundation.