KLS Foundation Discussion Forum

New mom dealing with her son’s KLS episode

2009-06-18T07:17:05-08:00

Hello everyone, my name is Ieesha Anderson and my son was diagnosed with KLS in March. He is 10 yrs old. I am a single mom and pretty much has to deal with this all alone. I really need the support from other mothers on how to cope and deal with this.

Amantadine

2010-09-29T19:45:23-08:00

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

Avanza, Zyprexa and Xanax

2007-08-12T22:06:25-08:00

Just thought I would share some information re: various medications and KLS;

I have suffered from depression / bipolar disorder and anxiety disorders in the past
I had tried many types of anti-depressants but the onset of my KLS happened at the exact time I was started on a new anti-depressant called Avanza. I was warned before I started to take it that I would be extremely sleepy for the first three days - started taking it and next thing i know I am waking up in hospital 3 weeks later (having been committed by my father and girlfriend in a court proceeding!) after being in a sleepwalk-like state (or conscious but believing I was still in bed dreaming) - oh yea, and I was completely mute and if I was asked to knock on a door would knock a few centimeteres away from the door without making contact with it etc etc
In my dream state I remember continuing to take the prescribed Avanza for the 2nd and 3rd days as well as the first. I don’t know if this was the trigger but the timing is uncanny. Also re the flu theory - I don’t remember having any flu like symptoms around my first onset.

re Zyprexa - it is a horrible, horrible drug that will leave you feeling you are fighting your way out of cotton wool the whole time. Maybe it is a great anti-psychotic for people with schizophremia but in so far as treating KLS I would suggest don’t go there. Futhermore while I was in my catatonic state for 3 weeks from my first onset - I dreamt that nurses were giving me medications (of course this was in fact reality) and my mind started to tell me that this was why I was stuck in this horrible dream so I started to pretend to takes the pills, spit them out and hide them in a corner of my room. Guess what - after 4 or 5 days of this going on I became lucid again! I think i was being given Zyprexa and Effexor.

re Xanax - I have used this in the past for anxiety disorder (be careful - it is EXTREMELY easy to become addicted and dependant on this if used for long periods). After as many as 12 relapses in the first 2 years from the onset (each less severe and shorter in length usually) my girlfriend discovered by giving me 2mg of Xanax towards the end of the episode (that horrible time that seems to go on forver where you know you are in an epsisode but struggling to come out of it and back into reality) it seemed to help me come out of it sooner. I am not sure how reliable this suggestion is - I am only putting out there as a possibility.

hope some of this is useful to someone out there…

Can Provigil help KLS?

2010-04-21T18:18:41-08:00

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!!

Lithium

2010-03-02T21:45:52-08:00

Has anyone had good results with lithium? We put my son on lithium 4 1/2 months ago, and his response was DRAMATIC. After about two weeks, he was like a completely different kid. He had come out of a five month episode, and in his own words, ” Hadn’t felt this good in five years”. He started back in school after missing the entire first quarter, and did extremely well, even making the high school basketball team. Then, just last week he went back into another episode. I do have to say it hasn’t been as severe, and I’m hopeful it won’t last as long. ( His norm is frequent episodes - The five month long one was NOT typical at all).

Salvia divinorum

2009-09-15T12:52:29-08:00

This is awkward to share but I feel that I should. About a year ago, I was in the grip of a particularly poorly timed episode and I was desperate to make it go away. I tried everything I could think of caffeine pills, energy drinks, anxiety pills, depression pills unsurprisingly nothing worked. Then for some reason I thought of Salvia divinorum. I can’t tell you why I thought of it perhaps it had to do with the brief period of derealization/hallucinations that is similar to my experience of KLS. Or maybe it was the feeling as if my mind was rebooted after using it. (I had only used salvia 2x in my life until that point and although I owned some for a over a year I had no interest in consuming it, but again, I was desperate). Anyway I took some, and I got better within an hour. I thought the recovery was linked to the salvia but I did not know if it could have been a coincidence so I didn’t share the story at that time.
Since then I have had two episodes both ended within an hour of consuming salvia. I no longer think this is a coincidence, however I am not recommending anyone go out there and try without very serious consideration. Salvia can make you hallucinate it will have some sort of psychoactive effect it could be very very bad!!!! Nevertheless, it worked so fast I think the experience should be shared.
I did some research and it seems salvia is a “kappa opioid agonists” (I do not know what this means). Professor Bryan L. Roth, director of the National Institute on Mental Health’s Psychoactive Drug Screening Program, thinks this could have potential uses in treating “Alzheimer’s, depression, schizophrenia, chronic pain.” And many users report an anti-depressant-like effect. Nobody has ever died from using salvia and there is no evidence of toxicity in animal studies. There is also some evidence that it lowers dopamine levels. See http://www.springerlink.com/content/2e2e65wvctqbenvl/. (I AM NOT A DOCTOR I DO NOT KNOW WHAT ANY OF THIS MEDICAL STUFF MEANS – THIS IS NOT MEDICAL ADVICE)
My experience with salvia is that after the brief effects of consumption wear off (lasting no more than 30 minutes) I feel completely better. I am a little warm, euphoric, and have energy). Unfortunately doing this at night makes sleep difficult (but as you know that is a welcomed reprieve).
I am writing this with the hope that one of three things may occur (1) a research reads this and thinks the issue is worth examining, (2) a adult KLS suffer who has used salvia divinorum in the past might consider being a lab rat and reporting on the results… (AGAIN, I AM NOT A DOCTOR, I AM NOT A RESEARCHER, I CANNOT TELL YOU WHAT EFFECT THIS MIGHT HAVE ON YOU – IMAGINE THE WORST!!!) or (3) somebody out there may have had the same crazy idea (and it was CRAZY) and has similar (or dissimilar) results.

If you have questions about what I did or what happened I am more than willing to answer them. If you comment in the post I will get back to you.

Best,
Caroline

Reminder – I think the fact that I chose to try this was stupid and likely a bad decision, nevertheless it worked for me. Just because it works for me does not mean it will work for you! Many KLS suffers receive relief by using different types of medicines. I am not promising you any results this might not work for you this might make you worse!!! I am not a doctor this is not medical advice. I am only sharing this because it worked for me and I hope that this might help others.

Has anyone taken Cytomel (Liothryronine) and had positive results?

2009-01-05T19:09:23-08:00

Given the cyclical nature of KLS episodes it is often difficult to assess if any medications or even changes in behavior are having a positive impact or if a person’s episode(s) just ended as part of the normal course.

Recently we have heard of certain patients who have been using Cytomel (Liothryronine) and beleive it has been having a positive impact

The Foundation does not advocate the use of any specific drugs in the treatment of KLS and recommends that you seek the advice of your medical professional in using any medications.

However, the Foundation would be interested in collecting informal information regarding our members use of this drug and any results. Please feel free to post the result to the forum or to send an email directly to the Foundation.

Important Warning for taking Medications while in a KLS Episode

2008-07-07T15:21:57-08:00

My name is Lori Haller and my 18-year old son, Eric has KLS. He has battled this disease since he was 11 years old. I am sharing this experience so that nothing like this happens to you or your loved ones.

On the first day of an episode, we started Eric on the medication Provigil, in an effort to minimize his KLS episodes. After three days on Provigil, he started convulsing and an ambulance took him to the hospital. I took many articles about KLS to give to the emergency room staff so that they would better understand this disease.

Eric became extremely agitated and physical in the hospital and talked incessantly, which he never does in an episode. He told the nurses that he couldn’t stand having KLS anymore and he wanted to kill himself. With that said, he was then put into the jurisdiction of the police department and transported to a psychiatric hospital. By the time he arrived, the Provogil had worn out of his system. He was in a normal KLS state and did not remember any talk of suicide.

Eric was begging to be taken home. The nurses at the hospital had the security guards remove Eric’s dad and me from his side and we were not allowed to see him until the visiting hour the next evening. We stayed in the lobby all night and all day and NO ONE would answer any of our questions. Meanwhile, Eric’s doctor, the psychologist who diagnosed him with KLS, and two other doctors- both experts on KLS and KLS research called on our behalf, e-mailed and faxed information regarding KLS. They all recommended that Eric be released to his parents immediately to diffuse the fear and horror that Eric was experiencing by being forcibly held and separated from his parents while in an episode. We even sought the help of a patient advocate.

The psychiatrist assigned to Eric finally arrived 18 hours after Eric was admitted. He evaluated Eric in five minutes. He said that he had treated someone with KLS before (an obvious lie). He said Eric was depressed and needed to stay the legal 72-hours in the lock-down ward. He made this decision even though he had the authority to release Eric to us immediately. He said Eric “needs group therapy when he is here.” He would only allow us to talk with him for five minutes because he said we were wasting his time. I responded by saying “Wow”. The doctor mimicked me and left. We then hired an experienced attorney who handles such matters.

When we went to see Eric in the lock-down ward during the visiting hour, he was emotionally distraught; he was sick to his stomach and was throwing up on the floor. Eric begged to be sedated so he could sleep through this nightmare. We later learned Eric could not sleep nor eat when he was in this facility. He was put in seclusion in a tiny room for 16 hours because he cried for his parents too much. The staff told us he needs to learn to be “more independent” from his parents. They still did not understand or care about KLS, it’s symptoms or the patient’s needs.

Eric was finally released three days later, only 12 hours early from the 72-hour hold, probably from the pressure of a lawsuit from our attorney.

Once a person utters the words suggesting that they will harm themselves they can legally be held for 72 hours. Eric’s episode lasted 13 days. He is fine now, but he was very traumatized for months after this experience. My hope is that you learn from our story. If you wish to find out more details, please feel free to contact me.

Lori Haller, Eric’s mom
Placentia, California, USA
Loerry2 at yahoo dot com

steroid treatment

2010-08-11T18:32:11-08:00

My son was recently diagonosed with KLS. he started out having a positive test for MONO. I took him to the Er and they started him on a Medrol steroid pack . With in a few hours of giving him his first dose through his IV he was awake for the first time in days. He continued on a decreasing dosage of steroids and was fine. When he finished his steroids he went back to sleeping. Has any one else used steroids ? He went on another decreasing dosage of Medrol Steroids and he came out of it. Each time he came off the steroids he started sleeeping. I took him to an Infectious disease dr. she blamed it on the steroid use. We weaned him off . This is before we learned he had KLS. He has episodes every 6 weeks almost to the day. I can count it on the calender.
Ann

Has anyone tried Acupuncture??

2010-10-10T14:38:06-08:00

Hello, I am the mother on the Forum, who has a 16 yr. old son, who has had KLS since 4th grade. It was diagnosed this summer, with doctors speculating it started when my son had a virus in the 4th grade and 2 weeks later, his first KLS episode appeared. Ever since, he is hit with an episode every 4-6 weeks, which lasts for 6-9 days. However, the episode he is in right now is the worst. Because Zach also experiences very painful stabbing feelings in the back of his Adam’s Apple area with each episode, he was admitted to Children’s Hospital in Boston for 4 days on Sept. 21st. He was at the beginning of an episode and the doctors wanted to perform an endoscopy, bronchoscopy, manometry, CT-Scan, while he was in an episode to see if they could see any anatomical or structural explanations for the pain he experiences in his airways and esophagus, which makes Zach unable to talk or eat for a full KLS episode. He claps once for Yes and twice for No, because talking is so painful. He has no appetite and it is too painful to eat. The doctors at Children’s Hospital found nothing anatomical. Diagnosis - brain chemistry imbalance. Airways/esophagus issues related to KLS. He only has these throat problems when he has a KLS episode.
To make a long story short, we suspect the time in the hospital, has now caused Zach to have the worst KLS episode he has ever experienced in 6 years. It is now Oct. 10th, almost 3 weeks later…he is still asleep, has lost 8 pounds, has not been able to concentrate to do one bit of homework when he is awake, but he is starting to talk or croak somewhat. But there are days he is asleep 18+ hours a day.
The doctors have tried Trileptal…he was allergic to that and it kept him up all night, flipping his circadian cycle. He is now on Tegretol, but we have no idea if it is doing anything since he is in an episode, so will not know until later if it shortens or reduces the frequency of his almost monthly illnesses. Depakot could be next. One of our doctors has wondered whether any of the KLS sufferers on this site or parents have ever tried acupuncture for their child?? If so, were there any effects?? Did you feel like you went to a good acupuncturist?? Thank you if you have had any experience with acupuncture and KLS and are willing to share.