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.
