KLS Foundation Discussion Forum

Simon 29 from england

2009-06-26T13:22:01-08:00

Hi everyone, just a quick hello to everyone on the site:) my name is Simon im 29 and im from England, I was diagnosed with KLS in Oct last year.
Im currently in a 9 months long episode with varying states of conciousness. Will beat this off in the end tho!:)

Hope everyone is well and episode free!

Sandra - 15 years old - from Iceland

2009-06-26T02:00:45-08:00

Hello

I am a mother, which daughter ( Sandra, 15 years ) just got the diagnose KLS ( the first diagnose was: Confusional migraine ).
She is first person in Iceland with this diagnose.

She has now had 4 x 10 days of sleep, since Christmas 2008.
It seems like the tricker is every time we are going to travel. So now we will try to stay at home (Iceland) the rest of this year and see if it can help her.

I would like to know if you know or heard about anybody with KLS in Denmark ( or other European Contries ) ?

Well, we will now sit down and read all the informations we can find about KLS.
- what a reliefe to see some of the videos, cause it is just like Sandra and now we know she is not alone !

Hope you are all doing well out there.

Lots of regards from Iceland

Lene

Homeopathy

2009-06-24T07:07:19-08:00

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

Mom of KLS girl for 4 years

2009-06-24T06:58:16-08:00

Hi all,
I’m Theresa and I live in Canada. I’ve been the mother of a daughter with KLS for the last 4 years. We tried a lot of things over the years and not much worked. However I think we have finally beaten it using homeopathy. She’s 9 months without an episode and we are crossing our fingers. She is now 19 and living on her own and I was really worried about how the episodes would affect her. She’s had a couple of scares where the “aura” of the episode is looming but then it dissipated.

I just wanted to say that as hard as it is to deal with, I really was grateful to know that her condition wasn’t fatal and didn’t cause her pain. For those two blessings I’d gladly care for her sorry teenage carcass on my couch for up to 3 weeks at a time.

Probable KLS son

2009-06-18T06:54:14-08:00

My name is Sheila and my son Kevin was just given a probable diagnosis of KLS. He is 14. He also had an irregular EKG while in the hospital with a prolonged QT interval. I was wondering if anyone else has had a similar cardio issue?

I am also looking for advice for reasonable accomodations for a 504 plan. He will be a freshman in the fall at a pretty rigorous high school.

I am very thankful to have this forum for support.

possible diagnosis

2009-06-22T09:40:44-08:00

Thanks for all of the info that you all share! Our son is 12 yrs old and has had four episodes since mid-January. He has been episode-free since April 27th! Ironically, while the doctors (Dupont and CHOP) think that it could be KLS, they still tested him for other health issues since heart problems run in our family. They found that he had two abnormal tests and one specifically could be helped by just taking Folic Acid and B12 vitamins. He hasn’t had an episode since taking these even though we didn’t think it was related. I noticed that another person noted the same odd test results in a prior forum note. A recent magazine article also discussed problems with B12 defiiciencies which have some similar symptoms to KLS. Just something to mention if you’ve never had this checked. Thanks again to all of you! You got us through some rough months!

New to KLS

2009-06-22T06:30:59-08:00

My name is Ieesha Anderson and my son Karmen jr. was diagnosed with KLS in March. So all this is very new to me as I had never heard of it before knowing that my son had it. I am blessed that they diagnosed him right away and he didnt have to suffer without us knowing exactly what was wrong with him.

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.

What Medications - Treatments have worked?

2008-12-25T23:28:03-08:00

As I have read in many other posts, what may work for one person, may not work for others - but I thought it may be helpful if we shared what medications or treatments which have been beneficial for us.

I have been taking Lithium and Provigil on a daily basis for a couple years. Over a period of time, I have mildly increased the dosages. Taking this meidication on a steady, regular basis, regardless of being in an episode or not, has definetely reduced the frequency and severity of my attacks. Not a cure, but an improvement. Sometimes, when an attack is starting to end, I will take Ritalin. Sometimes this is helpful, but not always. I am a 46 year old male (suffered from KLS for 6 years so far) - which is not typical for many of those with this condition, so I am not sure if this regimen would be appropriate for others.

Anyone else have any success with medications or other treatments?

Headaches

2007-10-26T11:05:20-08:00

My husband is currently having an extended episode but he has been complaining of continual headaches during this episode. It is currently up to 26 days and we wondered if other KLS sufferers experience headaches during their episodes or if this is unusual?
-C