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
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