my name is Francesca, I am Gaety mother’s, we live in Italy. I hope that you will be able to understand my english ! I thanks you because when I read your messages I always find something of utility and of encouraging.
I am a doctor but, before January ,I don’t know what KLS was. At 27/01/04 (unforgettable day !) Gaety after to have done a very laborious task to school, returned at home with a strong headache, the next day he had also a little of fever (37,7°) and began to have an insatiable need of sleeping and slept wherever he was. I was very worried and I feared that he was pitted by an encephalitis for this I carried him in hospital, where the clinicians made to him a lot of controls that all negatives resulted. Gaety was always worst and he began to have the hallucinations and the sexual disinhibition. The psychiatric diagnosed: acute psychosis, the infettivologyst was sure that Gaety was sick with a viral encephalitis and that after 15 days all the symptoms would disappeared by themselves. I was sure that he had not a psychosis because I saw an insatiable need of sleeping and psychotic symptoms, included the hyperphagia, appeared if he cannot sleep. He didn’t want people in his room , he did’ nt support to hear to speak a lot of persons because he said that heard our shouting but he didn’t understand the meaning of our words, he wanted to be calm and to sleep. After 15 days he was discharged from the hospital with diagnosis of viral encephalitis and returned at home with a short therapy of cortisone and risperdal that began at home. He had always the same symptoms. After three days he did not improve yet, so I decided to let him sleeping without awaking him ever not even to eat. Gradually he stopped taking the cortisone that seemed me useless, I left the Risperdal. He slept for four days almost 22 hours every day, he awaked spontaneously alone to go in bath or because he was starving , he slept a lot but during the short time he was awake, he was well and wanted also to study! After 4 days he awaked and took again his normal life, he didn’t remember what he said and did when he was in the hospital. All it seemed ended. Gradually it stopped taking the Risperdal too. At February 12 we should go in tribunal for the procedure of adoption (Gaety entrusted at us for law from 11 years but he is not our natural son). Some days before this day, he began to say that he didn’t support our high shouting and that we should speak at low voice. At February 12 , coming back home from the tribunal, he went to sleep in our car: another crisis of ipersonnia was begun! I carried him in a skilled center for the diagnosis of the illnesses of the sleep and the polisonnografia confirmed the diagnosis of KLS. Gaety suffered the same symptoms again and he was worry about his strong need of sleeping, if he wanted to be awake he had also sexual disinhibition but, this time, he had not hallucinations, I believe, because, if the need of sleeping became too strong for him, I said him that it was better sleeping than trying to be awake. When it was discharged from the hospital it was February 18, in the evening I gave him again 1 ml of Risperdal. He slept at home for 48 hours, he awaked spontaneously at February 22 and took again its normal life. During the second crisis I make do him a lot of hormonal dosages and I’m waiting for the results. This time I didn’t suspend Risperdal.Now he is well, and I turned to a psychiatrist for understanding if Risperdal is a useful therapy. It seems that it wasn’t ever used it in this pathology. I wrote You this long story because I’d like to know what you think about it.From 10 days my son is sleeping again I am DESPERATE, HELP ME ,I DON’T KNOW WATH I CAN DO ,HE IS SO YOUNG !Thanks, Francesca.
ITALY
