KLS Foundation Discussion Forum

Anti-anxiety medications

2011-12-02T21:16:51Z

Nearing the end of episodes, my daughter becomes anxious and worried that she is not going to come out of it. She sleeps less and cries more. Do you feel it would be harmful to introduce an anti-anxiety medication, such as Xanax, to lessen this anxiety?

Is there any neurological link between being mute during KLS episodes and being mute within the diagnosis of autism? Do stimulants work on both?

2008-05-14T12:48:29Z

It would be of interest to know which symptoms in KLS overlap or connect to symptoms in other mystery diseases of the brain.

Default Mode Network and Brain Mapping

2009-08-03T06:55:50Z

There is clearly a lot of research occuring regarding the brain and its networks. Although this research would seem to be important for the study of KLS, I am wondering if Stanford or other major teaching/research facilities are participating? If not, why not? Is research far enough along that it would have any information for persons and families who are managing KLS?

Relationship with Bipolar or Sluggish Cognitive Tempo?

2011-05-25T19:01:17Z

Is there any relation between KLS and Bipolar II or Sluggish Cognitive Tempo or ADHD?

seeking a doctor in BC Canada familiar with KLS

2011-04-07T09:21:35Z

My husband has seen an internist specializing in sleep disorders and also a phyciatrist (sp?) and both have come up with a possible diagnosis of KLS. We are now being referred to a Neurologist/Phyciatrist at UBC for another opinion and further testing. It would be nice to find a doctor that has diagnosed this disorder already and is familiar with it. Would also be interested in talking to anyone in Canada living with this disorder. My husband has been suffering with these sleep episodes for about 5 yrs now. They are happening about 2 days a week right now where he sleeps for about 22 hrs a day.

Kelly

Doctors in Arizona and Alabama

2011-01-25T10:10:45Z

We have suspected KLS patients looking for doctors in Arizona and in Alabama. If you have a doctor in these states that is familiar with KLS, please post the contact information for them.

Episodes Without Prolonged Sleeping

2010-05-17T13:53:10Z

Can you be in an extended episode without the many weeks of the sleeping phase. An example my son gets very irritability, lack of concentration. During his episodes he always gets headaches and his eyes hurt. He will always have different events with his episodes such as stomach pains, numbness to his hands, dizziness and currently he breaks out in a rash hive like, red burning rash for no reason. He seems to be in an episode without the deep sleep phase. He spends weekends sleeping, nights sleeping. In the sleeping phase he will usually sleep 2 weeks to 12 weeks sometimes longer. One other point during his episodes he would frequently break up with his then girlfriend of course not remembering when he awakens. Currently he is thinking and saying he doesn’t want to be with her, his now wife. We question him if he could be in an episode with a response “I don’t know.” I would appreciate any input, not knowing where to get any answers.

MAYO CLINIC

2010-10-07T14:57:19Z

Has anyone taken their child to the Mayo Clinic? If so, what was your experience like, and what tests did they do?

Hemochromatosis (or in UK, haemochromatosis) any possible link?

2010-03-01T02:06:46Z

My 18 year old daughter has symptoms of KLS and has 5 or episodes lasting from 10 days to 3 weeks in the last two years . Having had brain scan and blood tests which have proved negative for every other possible cause of her hypersomnia and so ruled them out, I am interested to know if anyone has suggested or looked at a possible connection between KLS and iron overload, or genetic hemochromatosis? I have the condition (as did my father and both sisters have it), my husband must be a carrier as my daughter has two genes and, when her first episode of KLS occurred (it was severe, lasted about 3 weeks and looked like a possible adrenal problem at the time), we discovered her iron levels were high for a girl her age - 300+ ferritin and 85% saturation. She has since begun regular venesections but, though her iron has returned to normal levels for a young woman (40, 55%), she continues with bouts of (less severe) hypersomnia. Before she was diagnosed with HH (GH) she seemed to catch anything bacterial that was going (mesenteric enteritis; UTIs) but not specifically viral ones, though she did start her first sleeping episode with flu-like symptoms.
As there seems to be no other successful treatment, I am looking at medical hypnotherapy as a possible way to go. I shall start a separate thread on this but would be grateful for any observations on either issue. Thank you.

Doctors in Illinois

2009-02-12T19:04:17Z

Someone emailed the Foundation looking for a doctor familiar with KLS who is in Illinois. Does anyone have a name for her?