NOTE: July 18, 2007 – Stephen is now 33 years old, married and has two wonderful children. He has been KLS episode free for almost 6 years. We still worry about him when he gets a cold or flu or when he travels out of the country for business. We also worry about his children—will they get KLS? This is why we continue to support the KLS Foundation – to find a cause and then a cure.
The following is the diary of Stephen Maier written during the first ten years that he has had KLS. It was never meant to be published. However, it has become clear to me over the past few years that it is important to share information. It may not be grammatically correct, but it is factually accurate and conveys our questions, emotions, and observations during these times.
Stephen Maier Illness History
The narration and medical history, which follows, is a compilation of the memories of Cindy & Dick Maier and the available medical information that we could gather. The timing and circumstances are from our recollections made during the last of the three episodes that have occurred over the last eighteen months.
Episode l – February 5, 1988
Started Friday February 5, 1988 with a bout of the flu. Stephen came home with a high fever (l03), nausea. During the week preceding this, many of his classmates were ill with the flu. The symptoms that Stephen exhibited were similar to his classmates. Most recovered in 2-3 days but a few of them were sick as long as a week with temperatures dropping to below 98.6 and with long periods of sleep. Some of them had periods of paranoia and violent outbursts. One parent had to sleep with the child because the pillows were going to eat the child (age l7). Another lost the ability to do simple math, alphabet and other basic skills (these later came back).
Nausea and vomiting lasted until sometime Saturday. On Sunday he developed the sniffles. Monday, Stephen developed cough. On Tuesday, the cough was much worse and we took him to see Dr. Charles Brown. We believe it was Tuesday night that we gave him his first dose of NYQUIL. He slept that night and most of the next day and that night we gave him NYQUIL again. Wednesday, we do not remember any change in this condition. Thursday, Stephen slept in the morning and by afternoon Cindy asked him if he felt like eating dinner. He replied that he did and came upstairs to lie on the couch while dinner was being finished. While lying on the couch Stephen fell asleep again so the rest of the family ate dinner. After dinner Stephen was still asleep, so I attempted to wake him. I was unable to get Stephen awake, and he was as limp as a rag doll. We took his temperature rectally and it was 97.
At this point Cindy called the doctor, explained the circumstances. He finally agreed to meet us at the hospital. We wish to add one personal note. During Friday night sometime Stephen asked Cindy nicely to help him to the bathroom and used the word please. He was very cooperative and his eyes had light. When Cindy helped him back to bed he told her thank you and that he loved her and he would be OK. When Stephen was discharged, he was improved but a long way from well. He slept in a cocoon fashion, only arousing for meals and calls from his girlfriend during the week of February 15 through 21.
On the night of February 18, Cindy took Stephen to his Middle School’s basketball game. This was the first time that Stephen had been out since his illness started. He wore sweats and house slippers. Stephen was the starting point guard for his team and an excellent player. Basketball is a game he loves and his attitude was one of indifference at the game. His girlfriend was also at the game and he was more interested in her than the game. He kept his arm around her and kissed her as if they were the only two people in the gym. This was totally unlike Stephen’s behavior. After the game Cindy remembers talking to Stephen in the car on the way home about appropriate behavior.
On February 21 Stephen had his first flash of full recovery. He was back. This occurred about 3:30 that afternoon. Stephen understood that he had been sick. The bounce in his step and enjoyment of life had returned. That night he attended a basketball game that his girlfriend was playing in and went to pizza after the game with a group of friends. When Stephen came home from pizza, he was very talkative about the game and the last two weeks and would remember flashes of experiences and be amazed at other incidents that we related to him. These would trigger other memories and the conversation lasted well into the night. He could remember Cindy talking about appropriate behavior in the car but did not remember what he did to deserve the talk.
By Tuesday, February 23, Stephen had returned to school and played in his first basketball game making two free throws at the end of the game to defeat the top seeded team in the tournament, a team they had not been able to beat all year. Stephen said after the game, which he played about three-fourths, that he was tired and had played the last quarter on adrenaline. We kept Stephen home the next day from school in anticipation of playing again on Thursday. Basketball had again become a very important part of his life.
He returned to school on Thursday, February 25, and played that night and was normal until the start of episode 2. I know it seems odd to let Stephen play basketball after being so ill, but it was important to him and he really was OK.
Episode two – Thanksgiving weekend, 1988
It started during the Thanksgiving weekend 1988. We were visiting Cindy’s sister in Denver, Colorado. During the week of November 21 Stephen was well. Cindy’s sister had two large dogs and a cat that were in the house and Stephen’s nose begun to run and he was sneezing. We gave him a 30mg SUDAFED on Wednesday of that week and it seemed to help. We left Denver on Saturday, November 26 at about 5 am. Stephen’s nose was again running and the sneezing had returned. Before leaving we gave him a TRINALIN REPATAB. The trip is a straight through drive of 24 hours. By the time that we stopped for dinner, we noticed that Stephen seemed very sleepy and not really alert. We arrived back in San Jose about 5 am and pretty much as a family slept through the day
Sunday November 27. When we awoke Monday morning we sent Stephen to school even though we sensed that all was not right with him. WHEN we picked him up after school our fears were confirmed. His friends walked him to the car and said that he was not with it. He could not remember his basketball jersey number and did not know if he was going to play in their first game that night. We took Stephen home and called Dr. Watson and took him in. Stephen missed two weeks of school again and pretty much followed the same stages and patterns as the previous episode in February. The episode did not seem as bad as the previous one and the recovery was quicker. At this time we felt that the only common link between the two episodes was the antihistamines.
Episode 3 – August 29, 1989
Started during the evening. I attended a movie with Stephen. During the show he complained of being cold although he was dressed warmly for the occasion. His girlfriend indicated he seemed grumpy. Wednesday he slept late and was tired after football practice. He went to bed at about 9 PM that night. On Thursday, August 31, Cindy and Stephen went shopping for school clothes. Stephen was extremely quiet. During lunch he did not say much and did not eat his entire sandwich. He went to football practice after lunch, and returned home, finished his sandwich, said he was tired and went to sleep on the couch at 5 PM. He did not get up except to go to his bed. In the morning we had to wake him up and we both sensed that this was the start of episode three.
We called the doctor and he was examined that day. Stephen had a football physical on Friday, august 25, and he was pronounced fit to play. Blood and urine test were normal. He was also given a TB test. BY the following Friday, September 1, 1989, Episode three was well underway. More blood tests and a mono spot were done on Tuesday, September 5. This episode was not as deep as the first two but the same patterns were evident. The duration of recovery was about half the time and the duration of each stage was much reduced. After he recovered, we discussed the start of the episode and he said that he started to feel weird on Tuesday. After talking to Stephen, he remembered that the football field smelled funny and believed that it had been sprayed with something. He was in close contact with the ground during practice. In talking with the principal of Pioneer High School we discovered that the field had been treated with ROUNDUP and PAINT THINNER. Stephen had taken no antihistamines prior to the onset of this episode. Stephen had used NASALCROM, but has been using that since spring of 1989. September 22, 1989
We took Stephen to Dr. Connor Stroud, a sleep disorder neurologist. We were unable to get him in during the episode. We gave the Dr. a copy of our diary on Steve, plus his medical records, and pages 5 and 6 of this packet—we had written down our questions and the stages of the episode. Steve was normal at this time. Dr. could give us no diagnosis at this time. He scheduled an EEG for November, but it was also normal. He asked us to call during the next episode to get an EEG during syndrome.
Stages that we saw:
1. Quiet periods of unresponsive sleep, cocoon in nature, in fetal position. Like the mind and body is not connected, little or no appetite. First Episode 7 days in duration Second Episode 4 days Third Episode 2 days
2. Tired, still sleeping, but with periods of being awake. Appetite returns, coordination poor, eyes are dead. Will respond to direct questions with one or two word answers or grunts. First Episode 72 hours Second Episode 48 hours Third Episode 24 hours
3. Rhythmic hand and finger movements, still sleeping in cocoon and fetal positions. We are unsure of duration of this period in the first two episodes. Eyes are no longer dead. This time it lasted about 48 hours.
4. Responsive but easily angered by any disturbance such as a noise or sibling playing nearby. Still periods of long sleep but not as cocoon like. Much more easily aroused. Duration 24-48 hours.
5. Talking but not coherent, still tired but less hours sleeping. Signs of fear, does not sleep alone. Has us check doors are locked and house is secure. Still not back yet, mind seems to be able to process information in small flashes. Duration 48 hours.
6. Returns about 24 hours after fifth stage in what seems a rush to us but he says he can feel himself returning. There are gaps in his memory which never come back. As he begins to return he becomes excited and wants to talk as much as possible. His coordination though not l00% is very good. The return is like a transformation from night to day
1. Is this related to the very first flu—maybe a virus that has never left his system and is triggered by something?
2. Allergic reaction to chemicals?
3. Psychological, stress, physiological?
4. Is length of time significant; episodes are nine months apart?
5. Time period of episode is shortening. Is body adapting?
6. Manic depressive? Doesn’t seem to fit what we know.
7. Gland disorder?
8. What now?
9. Can you help?
Episode 4 – December 1990
Prior to this episode, Steve had developed an allergy problem. He had taken a course of prednisone and was on amoxicillin for a week for an infection in the lungs. The amoxicillin did not seem to do the job and Steve then took Suprax for a week. His lungs seemed to clear. We had also gone to Los Angeles for the Thanksgiving weekend and did Disneyland, Knottsberry, and Universal Studios. It was a very busy weekend. Steve’s classes at school are very hard and he was doing reading for them during this time. When we returned and during the week he was taking the Suprax, Steve played in a basketball tournament. We knew he was tired and were concerned that he was pushing himself and were also concerned that being so tired would lower his resistance to flu and colds.
December 4, l990, Tuesday – Was overly grumpy about video game privileges being taken away. Went to basketball practice. Came home. While eating dinner Steve would just stop eating or chewing for a few seconds and would get a blank look on his face. Then he would continue. We thought he was just very tired. Steve went to bed at 9 PM.
December 5, Wednesday – Steve got up and seemed to be fine. Went to school. When I got home from shopping at 3 PM, Steve was home and asleep on the couch. He got home at 2 PM. We called a friend who has classes with Steve and asked how Steve was during school. Friend said Steve was fine in the early morning, but in the late morning physics class he was real quiet and friend thought he might be getting sick. Spanish teacher he had at l PM said he was very quiet in class. We took his temperature. It was 98.4 at 4:20pm. Steve did not eat dinner. He continued to sleep. We woke him every l l/2 – 2 hours and had him drink at least 8 oz of juice. We continued the juice throughout the night also.
December 6, Thursday – 8 am – Steve responded to questions. His movements were jerky and he would not maintain eye contact. He had TV on in family room but volume very low. He ate breakfast (omelet and OJ). We told him to go take a shower after he ate. He went downstairs and went to bed. Dick went down and told him to take shower and he responded that he would, but he then lay back down. We then asked him again to shower and waited for him to get in before we left him. He showered and went back to bed. 10 AM – Grandparents came over. Steve responded to them but still does not initiate any conversation. He had more eye contact. Noon – I gave Steve choice of 6 items for lunch. He was able to chose one and ate and drank juice. I asked Steve if he knew what was going on. He said ‘no, but I am trying to figure it out.’ He did not remember eating or drinking anything out of the ordinary in the previous days. 4 PM – Steve moved to family room floor to sleep. He said his back was hurting. He had been moving on his own from his own bed to our bed to the couch. Moved to our room at 5pm when younger siblings came home from soccer practice. Said it was noisy in family room. 5:30 PM – Aunt Tammy and Uncle Tim came by to see Steve. They spoke to Steve and joked with him. He responded and smiled at jokes. I asked if he remembered the joke that he had told us during Thanksgiving week. He remembered it and told Tammy. He smiled at her laughter. I was surprised he could remember it. His grandparents came back and brought him homemade cookies. Steve thanked them when prompted and immediately ate some cookies and asked for a drink. When finished he went back to sleep. When visitors left Steve gave Granny June a hug. 7:45 PM – Asked Steve if he wanted dinner. He said yes and came to the kitchen. He ate. He said he was sick of being in bed but was still tired. Steve changed his sleeping quarters several times before he finally went to his own room. 9 PM – Went to his room and left light on. When I asked him why he gave me an incoherent answer. When asked to clarify, he said something that made no sense at all. It was as if he had been dreaming and couldn’t distinguish between dreams and reality. He then said not to worry about it and turned over and went to sleep.
December 7 – Friday – Continued to give Steve liquids through previous night. He said at 9am that he wanted to sleep until 9:30 then would eat. He voice seemed better, stronger. At 9:45 I went to check Steve. He was up and showering. He had breakfast—grapefruit, English muffin with peanut butter, cookies, and OJ. Steve seemed better, more in tune with what was happening. He left the kitchen and went down to the family room and began to play video games. A good sign. Only played one game, then went to sleep again. Woke Steve up to go to Dr. Connor’s office. Was checked by Dr. Connor who then gave us a diagnosis of Kleine-Levin Syndrome, a rare sleep disorder. I was skeptical of diagnosis, as Steve was not experiencing anything different from the last time when the Dr. had seen him. However, after reading the material the Dr. gave us on the Syndrome, we are confident the diagnosis is correct. The material described Steve’s episodes so well. Steve was very tired after Dr. visit. He ate then was going to sleep when a couple of school friends stopped by to see him. He sat up while the friends played video games and talked. Steve did play and talked only when directly asked a question, but he did continue to sit up. He ate again while friends were here. Appetite is not a problem for Steve during the latter part of the episodes. Steve continued to be up until about 9 PM with only short periods of sleep. We had him drink a large glass of juice before going to bed and did not wake him during the night.
December 8 – Saturday – Steve had pancakes for breakfast. He had gotten up on his own. He then went back to bed. He continued through the day to sleep interspersed with periods of wakefulness. Sometimes when he was awake you could joke and tease him and he would respond correctly. Other times he said to leave him alone that he just wanted to sleep. Steve became afraid again at night. He called out to his sister from the top of the stairs to find out if she was downstairs. When she answered, he went downstairs and lay down on the couch. When his sister went to bed, he came upstairs and slept in his brother’s room next to our bedroom.
December 9 – Sunday – We had hoped that Steve would be further along in the episode by now. I think we are just anxious for it to be over. Steve got up by himself and ate the breakfast that I fixed. He went back to bed in our room and watched TV. Steve is not very alert during his period of wakefulness. He does have very brief flashes where he seems to really be aware of what is going on around him. His periods of sleep were very quiet today. We are still pushing fluids during the day but no longer at night. When asked how he feels as compared to Friday he said about the same no better or worse. Steve still has a good appetite and mealtime is spent consuming the meal in front of him with little or no conversation. This evening Steve did watch TV and even laughed at the jokes, but his laughter was slow. He slept on the floor in his younger brother’s room again this night.
December 10, – Monday – Steve awoke about 8:00 both Cindy and I felt that he was just a little better this morning, not anything specific but a general overall feeling. Steve slept the entire morning. The sleep was again very quiet. Still giving fluids. Steve ate lunch consisting of ravioli’s with Parmesan Cheese please. The eyes are still not right maybe tomorrow. December 11 – 14 – Tuesday through Friday – condition is unchanged during this period it seems that he might come back at any time but does not.
December 15 – Saturday – Steve is almost recovered. We had our season ending pizza party that he attended. He ate and watched a football game on the large screen. Steve is 95%.
December 16 – Sunday – Steve is back. He experienced euphoria as in the other episodes. Non stop talking. In discussing the start of this episode with Steve he remembers blinking in and out during the thanksgiving trip and fighting off the effects of the syndrome. He said by Wednesday that he could no longer fight it off and he had to sleep the syndrome won.
EPISODE 5 – July 1991
We had been on vacation to the southwest from June 12 – June 24 he seemed fine. June 27 Thursday Cindy dropped him at the Santa Clara Team camp for basketball with his Pioneer team. He returned on Sunday June 30, saying he was exhausted and that Friday night he had asked a team member to watch him because he was feeling like he was getting sick, Saturday morning he said he was fine and that he must have just been tired. Steve did have a small respiratory episode during the week before we left for vacation. Dick went and watched Steve play on Saturday. He said he looked and acted fine and played great.
Sunday – June 30, 1991 – Steve upon his return from camp went to sleep.
Monday – July 1, 1991 – Steve is still sleeping Cindy and I discussed with Steve if he was sick. He said he did not know. Other kids from camp also were extremely tired. Steve went back to sleep and slept the rest of the day. I woke him up at about 4:30pm for his summer league game that night. He is tired and does not look right. He asked if I could take him and Kirk to the game. Steve said to Cindy that if he blinked out in San Jose he could find his way home but would not know what to do if it happened in Pomona where he was scheduled to fly on Friday for another basketball camp. Steve started and played for the first 10 minutes of the game and asked to be taken out. He told his coach that he was not there. His teammate upon seeing him before the game said he didn’t like his eyes Mrs. Maier. Episode 5 is underway.
Tuesday – July 2, 1991- I called Dr Connor’s office this morning and we scheduled an appointment for 11:30am. The doctor took an EEG. The results showed slightly abnormal. Dr made a follow up appointment for Wednesday July 10, 1991. We have started to push the fluids during the day. Steve’s appetite is hearty. The periods of sleep are long but not deep. Steve is easily roused. Wednesday July 3, 1991- Sleep continues, still pushing fluids. Thursday July 4, 1991- Steve rises on his own and states that he is hungry for Hot Dogs that he wants to cook. Cindy makes him Hot Dogs and he gets his own juice. He did not eat hot dogs and eat pizza instead. Said that he would go to Grandma June’s for dinner and went back to sleep until then. We woke Steve up around 4pm and he said that he would shower after watching the show he had turned on.
Friday July 5, 1991 – Steve seems tired today maybe grandma was too much? Steve is not improved. That night he insists that one of us stay in the room with him at all times. Saturday July 6, 1991 – Cindy asked Steve if he felt like he was coming out of the syndrome. Steve said that he has had flashes. The rhythmic tapping has returned. He said he could run a marathon but was too tired. Steve also made a joke ‘Help I’ve rested and I can’t get up.’ Still pushing fluids. Tonight Steve insisted that everyone sleep in the same room. Steve had Cindy turn on the light so he could count heads.
Sunday July 7, 1991- I had hoped with the flashes of Saturday that he would be better but no improvement. Steve was very talkative that night. Sang songs from cartoons and the love theme from Top Gun. Talked and sang songs from the superstars basketball tape that he had seen at Kirk’s. He talked about his grades and a b+ means your lazy and a c means the teacher screwed up. Language got very colorful about the teachers that gave him the b+‘s. Then went to sleep the time for the talkativeness lasted over an hour. After about 30 minutes Steve became very scared. Cindy held his hand and Steve was squeezing and jerking Cindy’s hand. Steve wanted to sleep between Cindy & I. Cindy said that there was not enough room and that he could sleep in her spot and that she would sleep on the airbed. Steve slept the rest of the night.
Monday July 8, 1991 – Steve awoke about 9am and was hungry. I fixed him bacon and eggs with juice. He ate and went back to sleep. I took him with me to get Mike from basketball camp and we talked about how he felt. He has not had anymore flashes since Saturday. He seems more aware but still sleeping a lot. Again Steve is very talkative this night. Tuesday July 9, 1991 – Steve is still sleeping but he much more aware and alert during his awake periods. Steve & I had a small conversation during the day and a much longer this night. He watched all of the all star baseball game. Probably his longest awake period since the episode began. Before he fell asleep tonight he was very restless. A lot of talking and spent a good deal of time trying to make is bed enclosed with blankets sheets and pillows. He no longer seems as concerned about having someone in the room at night. I feel that today is the first day that Steve made a significant step back to normal. Steve asked Cindy what day it was today. From this he was able to figure out how long he has been sick. This is a major step forward.
Wednesday July 10, 1991 – Steve has a doctor’s appointment this morning. He did not want to get up until just before we had to leave. Dr. asked Steve how he felt. Steve mumbled reply. Dr. showed us EEG, but did not seem like he had really gone over it carefully and went to ask his Tech a question about the leads. He came back and said he would have liked to get another EEG today but his tech was booked. When I mentioned I had gotten a computer search done, Dr asked if we would make him copies of the articles. Cindy asked Dr. what he had done saying that she had initiated a computer search and had found another family in Livermore with a KLS son. Dr. said he was going to call colleagues but had not done so yet. We left Dr. feeling like visit was a waste and that Dr. was not that interested in KLS or he would have made inquiries after December episode or surely during this week. We decide to definitely seek other Dr.
Dick had to go to client office so Cindy took Steve first to pick up Michael at Basketball camp then home. Steve would not get out of car to get Michael. Said he would be OK in car but asked exactly when Cindy would be back with Michael. So still feeling some fear. Wanted a watch to check time. Cindy quickly went to gym and told Mike to come to car when finished and then went back to Steve who seemed glad she was back. Steve asked to stop at McDonalds on way home. Ate then went to sleep at home. Thursday, July 11: Steve seemed about the same today. He is more alert in late afternoon and early evening.
Friday, July 12: Steve slept quietly all morning and through lunch. Dick left for client appt. About 2 PM I went to Planetree to get some information. Meredith was home and Steve was sleeping so I left him. I returned at 3 PM and went to bedroom to check Steve. He was sitting up in bed; he smiled at me and said, ‘I’m awake now’ Episode 5 was over.
Steve came out of this episode as in the other ones. He was real excited about being awake. He was shaking and you could see his muscles jerking in his neck and stomach—like all his nerve endings were stimulated. He talked non-stop about what he remembered. One thing that he remembered was hearing Dick and I talking about maybe he would come out of episode on Sunday because we felt that was 2 weeks. He said he knew that he started in episode on Friday and two weeks would be sooner but he could not tell us. Said many times when we thought he was asleep, he was aware of what was going on around him. He could hear everything. He remembered singing and laughed and said he still could not remember Isaiah Thomas’ song from the videotape. He feels like he has thought up many television commercials himself and although when he awakes he knows this is not so, he can tell us which ones he ‘made up’. He said this episode was different in the beginning than the others. He felt it coming on Friday, but felt better Saturday. He did say that playing basketball on Saturday (this is the game that Dick went to watch and thought Steve was OK) that he played really good but it was like he was watching himself play from somewhere else and that he knew his shots would be good. He said it is like your body is doing something but your head is somewhere above watching.
When I talk to family in Livermore, mother says Cory described the same feeling as Steve, like an out of body experience. Interesting. Steve calls his granny June to tell her ‘He is back’. He calls his friends and coach to let them know. By 5 PM Steve is gone with friends to shoot hoops. He is fine. During this episode we connected with a family in Livermore with a KLS son. It was so wonderful to talk to someone who had actually experienced this. It is hard to relate Steve actions to people and have them understand what you are going through. This was so good and encouraging in that their son Cory has not had any episodes for five years. Of course, it also brings more questions. Cory’s episodes were so close together. Not like Steve’s. Would medicine help Steve since he episodes are so far apart? Did medicine really help Cory or did syndrome just go away as it supposedly does. Would medicine affect Steve coordination, mental alertness? If so, would Steve even agree to use medicine, as it ultimately at his age is his decision? We called Cory’s Dr. He is out of country until the middle of August and we are on vacation until end of August. Will call again when we return.
Dr. Stroud called July 19. I was surprised. Maybe he realized that we were angry at his lack of help. He said he had made some calls and that the Dr. he really wanted to talk with was out of country until next month. He left a message for him but told me that Stanford Sleep Clinic did not like that San Jose Medical had a sleep disorder clinic and many times did not cooperate or return calls. He also said he had talked to a Dr. that had used Vivactil, an antidepressant, in a KLS patient with good results but did not know if it was drug or just KLS going away spontaneously. He felt that Steve needed some drug, as it was not acceptable to lose two weeks out of your life each year. He said not enough research had been done. He said that although Steve had indicated to us between episodes that he would not be experimented on, that any treatment would really be experimental as there is no one drug that is proven effective in all KLS persons. He also indicated that his wife was having a baby late August and that if we didn’t hear from him by early Sept. to call him and remind him. Does he not have a calendar to remind him of callbacks? We tell him we may go to Stanford and he does not discourage this. We look up Vivactil in PDR and find that it affects the heart and that is not recommended for athletes. We know we will never give Steve this drug. How can Dr. Stroud say what is and what is not acceptable for our son? If he sleeps 2 weeks and then is OK that is much better than taking a drug that can kill him.
Stanford – Sept. 1991 We have appt with Dr. Guilleiminault at Stanford Sleep Clinic at 10 am on Sept. 9. We do not get to see Dr. G., but are shown to Dr.Clerk. Steve is given a quick physical, height, weight, etc. We then have a discussion of Steve’s episodes. We have given the Dr. all the diary information on Steve as well as all medical information we have including the EEG results that I picked up from Dr. Stroud this morning. After a lengthy discussion with Steve, Dick and I, the Dr. agrees with the diagnosis of KLS and indicates that we can do a sleep study to eliminate some other things such as narcolepsy or sleep apnea. Dr. says Steve doesn’t have any symptoms of this, however.
We make an appointment for this. Dr. wants to use no drugs due to Steve’s age (he may outgrow soon) and the side effects of them. We agree. Later, after leaving the clinic, Steve indicates to us that he does not want to take the time from his sports to do sleep study, as it proves nothing. We leave it up to him. He declines. I call clinic to cancel study and ask them to inform Dr. Clerk of Steve’s decision. I had specifically asked if they needed to see Steve during an episode and they said no. They did not need to see Steve when he was well either.
EPISODE 6 – December 1991-January 1992
Our daughter Meredith contracted Chickenpox on December 10, 1991. Cindy called Stanford and talked to Dr. Clerk about giving something to Steve to prevent him from getting chickenpox. Dr. said nothing could be given to prevent chickenpox, but that we really don’t want Steve to get chickenpox as it could make him sleep again. He said to call at the first sign of an outbreak and he would put Steve on acyclovir to help lessen the course of the virus. We moved Steve to our motorhome to avoid any more contact with Meredith. It did not help.
Steve broke out on December 26, 1991. We call Dr. and get acyclovir. By Saturday December 28, Steve was asleep. This episode was different from the previous ones in that Steve’s sleep was not as deep, other than this change the course and duration of the episode was similar to the previous episodes. I did not keep accurate logs of this episode as we had a house full of sick kids with chickenpox. Our younger son came down with chickenpox the day before Steve. This entry is being done at the start of episode 7. The timing of the episode six is Steve broke out and then went to sleep about 24 – 48 hours into the episode. At about two weeks after he returned. All of the stages were present with no real deviations from the past except that his sleep was lighter. The Stanford doctors did not want to see Steve during this episode, I guess they were afraid of the chickenpox. The acyclovir did not change the length of the syndrome, but the sleep in the beginning was not as deep as prior episodes.
EPISODE 7-May 1992
In reconstructing this episode we feel it started on Thursday May 14, 1992. Steve had been having slight allergy problems; he also felt that he had been overextending himself for a period of a week before the start of the episode. Steve was in the process of having his teeth bonded to fill the spaces left from the orthodontic work that has been done. As part of this process the dentist had Steve place a device to fit over his teeth to bleach his teeth. This device was filled with carbamide peroxide. This device was first used Wednesday May 13 and Steve had his first feeling of not being right Thursday. He said nothing to us then about how he felt. May 14, 1992 Steve relates to us on Sunday night May 17 that he had his first flashes of not feeling right on Thursday.
May 15, 1992 Our water heater broke today and we were without water during the afternoon. Steve is preparing to go out and see Lethal Weapon III with Pat and he is very upset that there is no water so he can take a shower. Still wearing the device at nights. May 16, 1992 Steve UP at nine o’clock and goes to Santa Cruz, Beach Boardwalk; returns home about 5 and goes to dinner and a movie with Pat and does not get to sleep until 1am Sunday. In talking with him later he said he had periods of not being right and was tired. May 17, 1992 Steve gets up early around 7 and goes back to the beach to play volleyball with Pat. We see Steve at the beach about 2pm. When we get home at about 5 he tells us for the first time that he is tired and expresses to us for the first time that he feels he might be getting sick. We discuss the events of the last few days and pinpoint his first feelings of not being right to Thursday May 14. After further discussion Steve goes to bed early on Sunday and we will see what tomorrow brings.
Cindy and I are both concerned and feel that this is indeed episode 7. May 18, 1992 Meredith wakes Steve up late and he dresses and leaves for school. He is still tired. Steve returns from school at 1:30 and tells us that he blinked out during the baseball meeting at school. He is scared he has it again and very concerned over Pat and the senior ball which is taking place Saturday May 23. Cindy calls Stanford to see if they could use drugs to bring Steve up for the ball. I talk with the doctor and relate the situation to him and he feels that this can be done and that he will discuss it with Doctor Clerk when he returns. After sleeping the afternoon Steve awoke. Seemed more aware than before. Said Cindy needed to order a corsage for Pat, her dress was black. Also said he needed a haircut from Ozzie. Explained how he wanted it cut. Lunch consisted of a hot dog. Dinner was hot dogs again; he declined to eat Flank Steak. At dinnertime Steve stood in kitchen while Cindy cooked. Casey, a friend, was over, we all talked and Steve participated then ate his hot dog, but said would sit with us during dinner. He talked during dinner almost normal acting. After dinner said back hurt and would I give him a back rub. Casey left and Cindy went to the bedroom to give backrub and Steve said back was better just hold his hand and be with him. Slept rest of evening in our bed. He went to his own bed when Cindy and I went to sleep. Asked that door to his room be left open and hall light on.
May 19, 1992 Steve seems sleepier this morning. Got up around 8; ate showered and went back to bed. Cindy woke him at 11:40 for his hair appointment at noon. Steve wet his hair and combed it but was grumpy about having to go. He said he is not seeing great. Steve at the barber was good and his haircut went ok. Lunch was a sandwich and cookies. He ate and went back to bed in our room. Steve awoke about 2. Pat came over at 4 and stayed until 6. Steve said he thought he could go to the ball without drugs. Thought he could stay awake. We are not sure. Probably could last for awhile but would want to lie down. Steve went to sleep again in his own bed at 10 with light off and door shut.
Steve’s more awake this episode. Has time and days in sequence and does not seem afraid. Not counting on his fingers but does hold thumb and index finger together as if he is fighting the urge to count. No hallucinations no paranoia. Has trouble focusing on anything for a long period of time. Decisions are hard to make but still much better than in prior episodes. May 20, 1992 Steve awakes and has breakfast and showers. Seems about like yesterday morning. Pat calls about 9. He talks to Pat. Pat arrives here about 10. They are talking and watching Hoosiers in our room. Steve is more awake now than any either Tuesday or Wednesday morning. After Pat leaves at 11 he ate a burrito and returns to bed. Steve continues to sleep but is not as deep as before. May 21, 1992 Steve is still sleeping but the amount is reduced may only 15 -16 hours a day. He is awake for longer periods of time sometimes a couple of hours at a time. Appetite is still strong. Still no hallucinations or paranoia. Steve still has time and memory.
May 22, 1992 Dr Clerk from Stanford returned our call I talked with him first. We explained the episode and he told me that he was not sure that he would or could help us with keeping Steve awake for the Senior Ball. Dr Clerk started to almost scold me for not following up with the sleep study and at this point Cindy broke into the conversation. She reminded him that he had only suggested a study to eliminate any other possibilities but that the final decision was up to Steve. Steve told us after the Episode that he did not want to do the study. Cindy had called Dr Clerk and canceled the study and told the person answering the phone to notify Dr Clerk of Steve’s decision and to call us if there was a problem. Dr Clerk never called us again. Also Dr Clerk said we only called him in crisis (when Steve had chickenpox, episode 6). We had called Dr Clerk when Meredith first contracted chickenpox almost two weeks before Stephen broke out. We wanted to know if there was anything that could be done in light of Steve’s syndrome to help. Dr Clerk said that acyclovir at the first sign of a breakout of the disease was all that could be done and to call him if Steve broke out. When Steve broke out we called Dr Clerk and he prescribed the medication. We also asked Dr Clerk if he wanted to see Steve at that time and he declined. The purpose for our call is to see if there is any way to wake Steve for the Ball. This is not a crisis but just a question. Cindy apologized to Dr Clerk for not calling in between episodes but we had understood that they did not want to see Steve when he was well and they did not want to see him during the last episode. It is normal to call when there is a problem such as the start of an episode and that is all we did. Dr. Clerk also said we should have called Dr Stroud to let him know we wouldn’t be back. Cindy told Dr Clerk we had made is very clear to Dr Stroud after our last meeting that we were very unhappy with his handling of the case and would be going to Stanford and would not return. Dr Clerk still insisted that we needed to contact Dr Stroud. Cindy still doesn’t understand Dr Clerk’s attitude but apologized again and continued the conversation. After further conversation Dr Clerk agreed to prescribe Ritalin but requested that we have a sleep study as soon as Steve was out of episode. Cindy asked about side effects of the drug and was told high blood pressure, heart palpitations and increased irritability. Dr Clerk did not want to see Steve to see reaction to drug and felt that we could administer the drug on Friday and observe the results ourselves. Dr Clerk wrote a prescription for a 2-week supply and said he was writing it for so many days so we would not have to keep calling him. Dr Clerk also changed his mind about the sleep study. He originally wanted to see Steve once he was well, now only when the next episode begins.
Steve is still asleep and no change from Wednesday. Steve is aware of conversation in the house about the administering of drugs to keep him awake Saturday. He is very adamant that he will not take any drugs. He states that this doctor did not do anything to help him and that he would do nothing to help this doctor. He did not even want Cindy to go to Stanford to get the prescription.
May 22, 1992 Steve stayed awake all day. Although he is awake he is still laying down. It is almost as if he is going to will himself to be awake tomorrow. He is still adamant that he will take no drugs. Steve watches movies non-stop all day. He finally goes back to sleep at about 10pm. Cindy and I are truly amazed that he was able to stay awake all day. Cindy picks up the prescription and discusses this with pharmacist since we do not have time to experiment with the drug and the drug could increase irritability. The druggist also said in adults that ritalin could increase anxiety. We feel that we have to use our own best judgment and go with no drugs.
Talked with Dr O’Sullivan of Rochester New York. He seems like a wonderful physician caring and very understanding and willing to discuss our ideas. Too bad he is so far away. May 23, 1992 Steve sleeps almost the entire day as if he is trying to gather strength for this evening. Steve is not real responsive and said that he is resting for the ball. He gets up at 5pm and showers for the ball. He had asked Cindy what time it was and she had told him it was 4:45 and he would need to get up in fifteen minutes. When Cindy woke Steve at 5pm he said it could not be 5pm yet. He did rise and start to shower saying he would need his shave gear and Cindy had to go to the store to get shave cream. Steve was alone for 15 minutes. He shaved and did his own hair but had a lot of trouble getting his contact lenses in. Cindy had him sit still for awhile after putting them in and this seemed to work. When I returned at 6pm Steve was dressed except for his pants and he seemed ready for the evening. Though awake his mind and body is still not connected. All movements and actions take a great amount of thought but are not as jerky as in other episodes. Steve handled the limousine and pictures at Casey and Pat’s houses very well probably better than either Cindy or I thought he would. After Pat’s they left for pictures at Pioneer, Dinner, & the ball.
Casey called at 12.30am and said that they were at Pat’s and the Steve was ‘low on gas’ but would be home soon. Steve returned home at 1am and said that he wanted to go to Laura’s to watch movies with Casey, Pat, & Laura. He took out his contacts and put on his glasses and prepared a bag of clothes himself. We told him that he could spend the night at Laura’s and that we would see him in the morning. We thought he would probably just crash once he got there. Casey called us at 1:30 and said that Steve wanted to come home. Steve said that Laura’s place was not a good place to sleep, the floor was way too hard. Steve asked if he and Pat could return to our house to watch movies. We agreed. Steve ate pizza and they watched a movie and went to sleep.
May 24, 1992 Steve is very tired. Had breakfast showered and slept the rest of the day. At 8pm Steve awoke and started to talk. The pattern of his speech is very strange. It is as if he is very young. He talks about having Pat marry him and sleeping with her. Talking lasted almost an hour. He hummed a song. May 25, 1992 Steve awoke at about 8 and ate breakfast. Steve is back to watching TV and sleeping. He told us Pat was coming over and Cindy said that he could watch TV downstairs in the family room he agreed and went downstairs. Steve ate a very large dinner and finished with a bowl of ice cream. After dinner he was very grumpy and demanded to have more movies. This is a difficult time. He later sang a song.
Cindy in reviewing prior notes thinks that Steve is in stage 5. This is the last stage before he comes out. This would put Steve out on Thursday—2 weeks from first symptoms. So even though this episode started out lighter the time is going to be about the same. Did Steve really fight hard last week to stay awake as much as possible knowing the ball was Saturday? His deepest sleep was Sunday the day after. May 26, 1992 Steve is still sleeping but more alert when awake. He asked Cindy when he would be out. Cindy told him Thursday and he asked what day today was. He was able to figure out that he had two days to go. What will we do if he does not come out Thursday? Back to sleeping and watching movies.
May 27, Wednesday Steve is still sleeping lightly and watching movies. May 28, Thursday Steve sleeps in morning. Watches movies in afternoon. Has Cindy give him neck rub and says he will be awake after movie. He is definitely more alert but not fully awake. As afternoon progresses Steve becomes more awake and says he is almost there. Later that evening as he is watching TV he becomes euphoric and says he is out of syndrome. He is somehow different than other times when he came out, but we are happy/ May 29, Friday Steve goes to school and seems ok when he leaves. When he gets home in afternoon, he says he still is not right. School was difficult in that he was slow in understanding things. He can joke about it but we sense he is concerned. We certainly are concerned. He goes to dinner with us this night and is slow to respond and to understand jokes made. Difference is so slight that if you didn’t know him you would not notice.
May 30, Saturday Steve wakes in the morning and says he is still not right. Says he has trouble sleeping at night. Says he dreamed the dream that he used to as a child when he had night terrors, but that it did not scare him this time. He said he was aware while dreaming that this had been a scary dream before but that the scary things were not scary now. Interesting. Dick and I are supposed to go to a wedding, but instead I go and Dick stays with Steve. Steve has a graduation party to go to for a good friend in afternoon, but is not sure whether he will go. By afternoon he is feeling more together and has Dick drive him to party and says will call to come home. Again Steve is with good friends that know about KLS and have been through all the episodes with him so we feel party is ok. Steve gets a ride home about 10pm and says he had a good time. Still is not totally out of episode.
May 31, Sunday Steve sleeps in morning and then wakes and says he wants to be normal so badly. Says he is close but time is messed up. Can’t tell if minutes or seconds have passed. Again Steve improves as day goes on. By night he seems almost there. Afraid to go to sleep because of dreams. He has trouble knowing if he is dreaming or if it is real.
June 1, Monday Steve wakes up feeling completely normal. He is excited. We keep him home from school to be sure and let him go to a friend’s house for the day. We call to check in the afternoon and Steve says he is normal. Still excited. Steve and friend come to our house to watch a movie with us and then they leave to play miniature golf. When he returns about 10 PM he laughs and says all the other kids had to go home and he was still ready to play. The euphoria is still with him. He seems really and totally well now. Finally gets to sleep about 12:30 am.
June 2, Tuesday Steve gets up and gets ready for school. He seems fine and says he dreamed but not like before. Leaves for school. I had talked to teachers when Steve went into episode and they had all been understanding and said that if Steve could not take finals they would just average his other grades. Steve is hoping English teacher will not have him make up reading.
Graduation is next Thursday, June 11. Note: Steve is a straight A student and has been since about 4th grade. Teachers have always been good about his episodes, sometimes giving him extra time to make up work and sometimes just forgetting it. It helps that he is such a good student.
EPISODE 8 – JULY 1992 Friday, June 26, 1992
Steve had some dental work done today. He was given two shots of xylocaine (lidocaine hydrochloride). Saturday, Sunday, Monday—- June 27, 28, 29—Steve said he was OK. Cindy noticed very small things like missing basketball shots that he normally made easily, losing a video game to someone he almost never loses to, and being just slightly grumpy. Hoped she was just being overly sensitive.
Tuesday, June 30—Steve’s job that was to start July 1, fell through. He decides to come to Portland with the family tonight. Wednesday, July 1—We are still driving to Portland to visit friends. Steve makes a sandwich in the motorhome and does not know what to do with the open bread. I tell him to put it in a ziplock bag. He is very dense about doing this, but finally figures it out. Cindy comments that he is not acting normal. Seems fine after that though.
Thursday – July 2—Steve states that he has ‘blinked’ out a couple of times today. By nightfall it is apparent that he is entering another episode.
Friday, July 3—Steve sleeps most of Friday getting up to eat and use bathroom.
Saturday, July 4—Steve continues to sleep most of day. We get him up to watch the fireworks in the neighborhood. He sits in chair in front window and watches.
Sunday, July 5—We leave for home. Steve is still sleeping in the motorhome. We drive straight through arriving in San Jose about ll:30 PM. We all go to bed.
Monday, July 6—Steve is still sleeping, but not as deeply. We call and leave message for Dr. Clerk at Stanford who said he wanted to do a sleep study on Steve when in episode. Dr. Clerk’s appointment person calls back and says Steve should be at Stanford Tuesday night at 7PM. Tuesday, July 7—Steve is still sleeping, but not as deep. We explain about the sleep study. He is willing to do this. Dr. Clerk calls at 3PM and says they will be doing an airway study also and will be putting a tube up Steve’s nose and down his throat. Dick says OK but laughs as he knows Steve won’t like it and probably won’t do it. We explain procedure to Steve. He says no so we don’t push it. Cindy takes Steve to Stanford bringing some cookies for him to eat between meals as this is a normal pattern for him. Steve seems ‘wired’ on trip up. He plays radio loud and sings along with rap songs. Keeps changing stations to get best song. Laughs and claps hands together to music. We arrive a little early and Steve wants to stay in car until 6:55 PM. We listen to radio and Steve hunts to find just the right song before we can leave car.
Cindy and Steve check in to Stanford at 7PM. The staff of technicians is very surprised that Cindy is planning to stay the night with Steve. She explains that Steve is afraid at night and never would stay if left alone. The technician suggests to Cindy that the tech and Cindy go to another room and talk. Steve says ‘NO’ and that talking can be done in front of him. Tech explains that patient’s don’t normally have someone stay with them, and that they have no orders to that effect.
Cindy says that’s ok she can sleep in a chair but she will not leave Steve in their care alone. Steve says that his mom can’t leave. This conversation was with two techs one of which recognizes Cindy from when she came up to the clinic to get prescription for Ritalin for Steve in May. She finally says that that is all right and she leaves to get Cindy a cot.
Cindy asks the other tech, who will be putting on the electrodes, (she can’t remember her name) if she has ever worked with a Kleine Levin person before. She has not but says she has read the background material on Kleine Levin. She proceeds to explain the procedure to Steve. Steve is willing to go ahead with the study. The tech then starts to explain about the airway tube. Steve says no way. The tech explains the purpose of the test and what it feels like. The tech starts to place the electrodes and says they will talk about the airway later. She explained each step on the installation of the electrodes and the purpose. Her manner of speaking with Steve is very brusque. There is very little compassion in her approach to working with Steve. Steve complains that the grease pencil hurts. The tech gives the pencil to Steve to mark his own hand to feel it. Steve does this and says, ‘I don’t care what it feels like on my hand I’m telling you it hurts my head.’ The tech says she has to do this and continues marking his head. Steve grimaces but allows the tech to continue. The tech explains that a good contact is necessary for the electrodes to work. The tech uses a cue tip with pumice paste on it to clean the area of contact and demonstrates this on Steve’s hand. Steve flinches at this. The tech starts cleaning the locations marked with the grease pencil.
Steve flinches during the process and the tech brusquely tells him that he can hold still and they will get it done quicker or he can continue to flinch and that it will take longer. Steve does try to hold still but still occasionally flinches with the tech telling him to hold still. The tech explains about the glue smelling and drying the gluing with an air compressor and demonstrates this on his hand. Steve continues to allow this. Steve says he wants some juice and allows Cindy to leave the room to get this for him. The tech installs the electrodes to Steve. The tech explains about the bands that will be around his chest and waist. Steve is concerned that the bands, which are lying across the bed, will be used to hold him down. The tech explains that they will go around his body and that he will be free to move. Cindy also explains this to Steve. Steve at this point in the process still seems willing to do this.
The tech starts to explain the airway again. Steve agrees to try it if the tech agrees to stop if he tells her. The tech agrees. The tech says that they will use lidocaine to deaden the nose during the process. Cindy says she is uncomfortable using lidocaine as she thinks this is maybe what triggered this episode. The tech explains that it can be done without this. Steve says he agrees to try the tube but will not have any lidocaine. The tech leaves and then returns to install the tube. She asks that Steve not drink a lot of juice right now as sometimes people get sick when the tube is inserted. Steve says he is thirsty and continues to sip juice. Cindy takes juice from him and explains the reason again. Steve is concerned about people getting sick from this. The tech explains that the tube does not make them ill, but the idea of the tube does. I explain to Steve that some people can’t handle the idea of a tube up their nose, that it is a head game. Steve understands this and says that won’t bother him. The tech says he can take small sips of juice during the installation to help the tube slip down, but not to drink too much. The tech starts to install the tube and Cindy thinks that the tech got the tube up about to the top of the nose. Steve starts to sneeze repeatedly and says to take the tube out. The tech does. The tech asks Steve to talk to her and tell her what he is feeling. Steve tells her that he does not like the sneezing and doesn’t want the tube.
The tech tells Steve if he were older say 25 he could make that decision but now she would have to talk to Cindy. Steve says wait a minute I’m 18. The tech says if he is 18 which Cindy affirms, he needs to talk to her. Steve is able to understand her implied meaning and says, ’ I Steve Maier being 18 and of sound mind and body do not want a tube up my nose.’ The tech says that is all she needs to hear and puts the stuff away.
The tech says to watch TV and that they will return later to hook Steve up. The tech asks what time will Steve go to sleep. Steve does not know and Cindy says that the time varies, but maybe around 10pm. Before 10 the tech returns to hook Steve up to the cable and says that he can continue to watch TV. At about 10:40 the tech returns to tell Steve that he should turn off the TV and try to go to sleep. Steve says that he is watching the news and that sports news comes on next and that he is watching sports. The tech leaves the room. At 11:00 Steve turns off the TV. Steve tries to lie down but finds it difficult to get comfortable with all the wires. Steve says he wants some of grandma’s cookies, which Cindy had brought, and some juice. Cindy gets these for him. Steve is sitting up in bed eating when a third tech named Terry comes in (Terry had not had any conversation or dealings with Steve or Cindy up to this point.)
Terry tells Cindy in a very rude manner that they are trying to do a sleep study and she doesn’t appreciate Cindy giving her son juice and cookies and talking to him. Cindy explains that there is an eating disorder associated with Kleine-Levin and Steve won’t go to sleep without eating, and will continue to answer Steve questions as he asks them. Terry is very putout and says that she would appreciate him going to sleep as soon as he finishes that cookie. She leaves the room in a huff. Steve finishes the cookie and says he is going to watch Cheers which is on TV at 11 PM. Cindy tries to talk him out of this but Steve says he is going to watch Cheers and then will go to sleep at 11:30.
He is agitated and upset at tech’s attitude. Cindy feels that the best way to handle this is to go along with Steve and hope he calms down. At about 11:15 Terry comes back in room and says I said we are trying to do a sleep study and if we don’t get started the test will be invalid. She speaks in an angry voice. She reaches up and turns off the TV. Cindy tells Steve that it is OK and to try to sleep. He tosses and turns complaining about the wires. He holds Cindy’s hand for a while. Cindy is going to sleep but Steve continues to mutter about the tech turning off his TV program and that she had no right to do that. He was planning to go to sleep after Cheers.
Steve finally tells Cindy that he has to go the bathroom. She says to push call button as he needs to be unhooked. A male tech comes in. He introduces himself as Michael. He unhooks Steve, who is asking him to hurry, as he has to go bad to the bathroom. Steve is unhooked and goes to bathroom and shuts and locks door. Tech and Cindy wait. Tech leaves room and Cindy asks Steve if he is OK. He mumbles an answer but she can’t understand. Tech comes back and asks if his is OK. Cindy says he did answer but he is still in bathroom. Tech leaves room again.
About that time Steve comes out of bathroom. He has undone body straps and has removed the nose electrode and the finger electrode. He says he can’t do this anymore, he wants to leave. He says he has thrown up and has had diarrhea, and that the test is making him sick. Cindy tries to talk him out of this. She tries being really understanding about this with Steve. This doesn’t work. She tries using monetary logic—the expense of the test etc. Steve says she can have all the money in his bank account. She tries telling him that of all the strange things he has done in the syndrome this disappoints her the most. Nothing works.
Steve says if Cindy won’t take him home he will walk. The tech Michael is back and is very gentle with Steve. He says he can put back all the electrodes without any problems. He asks Cindy if he is always like this. She says only sometimes. He continues to talk soothingly to Steve. Shows compassion for him. Steve asks him that since he is 18 can tech make him stay if he wants to leave. Tech answers that even if he weren’t 18 he would never make someone stay.
Steve asks that electrodes be removed. Tech says of course and to let him get something to remove them and the glue. He continues to be nice to Steve. When electrodes are removed, Steve and Cindy leave.
Cindy asks tech Michael on way out if Dr. Clerk will call her tomorrow. He says he will. When Steve and Cindy get to car, Steve is stuttering. He has never stuttered in his life even during episodes. He is shaking and crying. He is so scared and upset. He says he is sorry that he couldn’t stay but that there were things happening in there that Cindy couldn’t see and that it was a bad place. He says to remember way back when Cory (another KLS person) said the pillows were going to eat him he couldn’t understand that, but now he could. He said if he had been made to stay he would have been dead in the morning. (Steve was confused on the pillow eating—it was a friends son who had the flu that Steve had when he first come down with KLS that felt the pillows were going to eat him) Cindy hugs him and says that they are going home.
Steve chants San Jose, San Jose over and over again until they are on freeway. When they get home Steve goes straight up to bedroom and wakes Dick. He says he is sorry but he couldn’t stay and did Dick still love him anyway. Dick assures Steve he loves him and that it is all right.
Steve wakes his younger brother and says he needs him to sleep in the family room with him. Brother goes with Steve. Cindy goes down to check him and he says he is sorry and he knows she is angry. Cindy says she is not angry and she loves him very much. He gives her a hug and snuggles down in the covers and goes to sleep.
Wednesday, July 8 Steve sleeps very deeply the next morning and early afternoon. He begins to awaken in late afternoon and talks about how scary Stanford was and how the electrode installation hurt and how the tech Terry turned off his TV. We tell him it is over and it is ok. He calms down. His girlfriend comes over and they watch TV together.
Dick and Cindy discuss the sleep study without Steve being present. Cindy can’t understand first how the Dr. Clerk could think that she would just leave Steve alone there. If he had read any of Steve diary he would know that Steve is always afraid at night and always sleeps with someone even in our own home. She didn’t understand the attitude of the techs. We decided that although first tech was very brusque maybe that was just her personality. She did, however, explain everything to Steve and answered all his questions fully. She was not compassionate and did not give the impression that she wanted to know more about KLS to understand Steve better. The tech named Terry was just plain rude and nasty. She did not try to talk with Steve or Cindy to compromise in any way on when he would go to sleep. Cindy felt that her and Steve were a big bother to her. We did not fit their routine exactly. No one should have her attitude and work with sick people. The tech Michael was great. He spoke soothingly to Steve and treated him very gently. Perhaps if he had handled Steve throughout the evening, Steve would not have been so agitated and upset.
Dick and Cindy agree that had Steve been handled better from the outset, the test might have been completed. We leave two messages for Dr. Clerk to call that day. He called back at about 6PM. He wanted to know just why the test was not completed. Cindy talked with him. She said when her and Steve first got to the clinic the staff was surprised she was staying and she would have thought that Dr. Clerk would have expected this as KLS persons are paranoid. He wanted to know what Dr. told her KLS persons had paranoia. Cindy said no Dr. but she has personally talked to the parents of two other KLS persons and they were both afraid. (Perhaps paranoia was the wrong word for Cindy to use, but as a lay person, she was meaning afraid) Cindy said she had also read it in the literature. Dr. Clerk said paranoia was not written about in any of the literature, that KLS involved an eating disorder and sexual disinhibition not paranoia.
In any event,Dr. Clerk had Steve’s records including the detailed diary and should have been aware of Steve’s fear. Cindy told him the techs were not nice to Steve, except for Michael who was great. She said that they treated Steve like a rational adult who was just being ornery. Cindy said Steve is not rational during these episodes. She told Dr. Clerk about how rude Terry was and his comment was that maybe she had had a bad day, that he had heard good things about her. Cindy told him that was absolutely no excuse for their treatment by her. Dr. Clerk said perhaps that there was just a personality conflict between us. I said I had never met her before; she just came into our room and started scolding me. I said she should have never have spoken to me like that. He asked that we write this up and send him a letter about it.
Cindy said that Dr. Clerk just stated that KLS involved an eating disorder and that obviously Terry knew nothing about this. Why had she not been prepared for this? Cindy said she thought it would have been nice if Dr. Clerk had been there when Steve checked in and perhaps he could have alerted the staff to the special problems that might come up. He said he had patients to see in the morning and couldn’t be expected to be there at night also. Cindy said she thought Steve was also a patient.
Dr. Clerk then said this was the second time he had had difficult dealing with Cindy. Cindy said the last time she had talked with him was in May when we wanted to wake Steve for the Senior Ball and that he had scolded her for not letting the San Jose Dr. know we were not coming back. She said she and Dick had made it perfectly clear to Dr. Stroud that they would not be coming back and that really Dr. Clerk had no right to scold her about something he was not involved in. Cindy also said that perhaps if Dr. Clerk were a more understanding Dr. and more compassionate that they would get along better. She said she wanted to make it perfectly clear now that the Maier family would not be back to see him or his clinic. Cindy felt that Stanford had a great reputation but did not follow through with kind treatment. She said their treatment was ‘shitty’. Dr. Clerk wished her and Stephen good luck in finding another Dr. but felt that Cindy would have to change her attitude first. Cindy said that if she were not her child’s advocate, who would be, that her attitude was fine but perhaps he should look at his attitude. The conversation ended.
Dick and Cindy discussed this conversation extensively and decided that other than using the word ‘shitty’ she had been fair to the Dr. and that we had not received good treatment at Stanford from the techs (except for Michael) nor from Dr. Clerk. We are now without a Dr. We are concerned that if Steve continues to have episodes only 5-6 weeks apart that he will need medication.
We will need a Dr., but will look for one willing to work with us and not be upset because we have read as much literature about KLS as possible and certainly have more hours of observations than any Dr.
Thursday, July 9 Steve sleeps at night until mid morning then is awake for most of the day until l0 or 11 at night. HE watches movies on TV most of the time. He always showers when he gets up or at least before Patricia comes over. Friday, July 10 Steve is up mid morning. Patricia comes over in afternoon and they watch TV. In late afternoon Steve wants to go with Patricia to get an ice cream and pick up her mom from work. We have him shave first then allow him to go. Steve is functioning fairly well during the day now. If you didn’t know him and you spoke with him you might think he is normal or at the worst just very slow or slightly retarded.
Saturday, July 11 Steve continues same pattern, but seems much more awake.
Sunday, July 12 Steve is very awake today. In the afternoon he is asking about medicines to stop this KLS. We tell him we are trying to find a Dr. to at least talk about medicines with and that it will be his decision. He says he needs to read all the articles we have before making a decision. A little later I find Stephen and Patricia in the living room reading the articles (Patricia has already read them for herself). Steve has some questions about some of the articles. We discuss them intelligently. He is almost completely out of the episode. Another friend comes over and we enjoy a long conversation among all of us. Steve is still a little slow getting jokes.
As the evening progresses, Steve gets better and better. He says his shower this morning went well. Steve has let us know that in all other episodes, showers were hard, that somehow his mind gets confused when he showers. He says time is also pretty well sorted out. By end of evening we feel Steve is out of episode but will reserve judgement until tomorrow morning as mornings are normally his hardest time.
Monday, July 13 -Steve is well again. This episode though similar to the rest is the first one that does not last two weeks from the first onset of the syndrome. This is a very hopeful sign. The periods of sleep were not as deep as the May 92 except for the day after the Stanford incident. I feel this was due to the stress of the situation.
Cindy has made a contact with a new doctor.
Wednesday, July 29, 1992 We go see a doctor recommended by a friend of a friend. His name is Dr. Greg Clark and he works in Los Gatos. He is very nice to us and listens carefully to what we have to say. We tell him about our experience with Stanford. He was a fellow at Stanford with Dr. Clerk. He says he is not surprised by out treatment there. The clinic has been looking for a director for some time. Dr. Clerk was made director after being a fellow for only one year and was not really capable of handling the assignment at this time. Dr. Clark felt that if sleep apnea or narcolepsy was Steve’s problem, Stanford could have handled it, but at this time they were not able to handle unusual cases.
It was nice to have our feelings validated. Dr. Clark has not treated or seen a KLS person before. He does know about the syndrome. He sets up another appt in two weeks to discuss medications. He will be out of town part of this time.
Wednesday, Aug 5, 1992 We meet Cory McCormick and his brother. Cory has had KLS and is now OK. He got it at age 10 (very early) and was finally put on Tegretol for 18 months during which he had no further episodes. He then went off the medicine and has been OK for five years now. It was interesting to hear Steve and Cory compare how they felt. Very much the same. His older brother also recalled some of the things that Cory did and many were the same as Steve. Great visit, great kid.
Wednesday, Aug 12, 1992 We meet with Dr. Clark again. He says lithium is the drug most often used. He described side effects and how closely Steve would have to be followed with this drug. A great concern to him and to us was Steve’s active sports life. Dr. emphasized how important it would be for Steve to stay hydrated so that body did not use drug to replace salt. Steve was very concerned about this. We talked about Tegretol and its side effects that are not nearly as bad as lithium. We decided to go home and think about it and let him know in a day or so. Our big concern is that school is starting in two weeks for Steve. He will be in Claremont, CA, a six-hour car ride away. If he takes any of the drugs, will it trigger an episode?
Steve seems to be very sensitive to any new drug in his body (antihistamines, xylocaine, etc we feel trigger an episode). Steve feels he cannot risk taking any drug now. He wants to begin school on time and get used to the school, new friends, etc. before ‘blinking out’. He talks to Dr. Clark and tells him he would like to take Tegretol but not until he has another episode. Dr. agrees to do whatever Steve wants. He says he will consider Steve his patient even if we don’t call him for months. We all like the Dr. Now we play the waiting game.
August 28, 1992 We take Steve to Claremont McKenna College down south. We all hope for the best.
EPISODE 9-April 5 – 15, 1993
This episode is upsetting in that the only trigger is nine months. Both Cindy and I have thought about any link and none shows up. The good news is that it is clearly the lightest episode to date. Santa Clara Univ. has been very good at responding to our needs and with exception of one professor all has gone well. Thank goodness he is not at Claremont. Steve recovers after ten days and finishes the Quarter with 2 A’s and 2 B+‘s. Most of the patterns of the previous episodes are present at the about the same times. His sleep patterns are shorter and there is much more awake time between periods of sleep. Singing, tapping, fear are all present but not as pronounced. He comes out not as abruptly as in the past but once out has burst of talking and energy.
EPISODE 10-Tuesday July 27, 1993
Steve is playing basketball at Paul Moore Park. He is hit in the head around the right eye. He comes home and tells of the blow and we look at his eye. Everything seems all right. I have one brief flash of—I wonder if this will trigger an episode. ] Thursday July 29 Steve still seems ok Cindy says that Steve seems funny. I did not notice anything but as it turns out Cindy is right on with her diagnosis. Steve has muscle spasms in this back and is incapacitated for the next three days. Monday August 2 Steve returns from Morgan Hill where spent the night with friends. He re-injured his back while putting gas into his car.
Tuesday August 3, 1993 Steve awakes in the morning and tells us he has some good and some bad news. The bad news is that he is sick but the good news is that he has been sick since Thursday and only Cindy and Patricia noticed anything. If this is so that means he was able to function for 5 days with little notice. This episode is very light so far. It will be very interesting to see how the episode evolves. He is still awake till about 10pm he leaves his door open tonight to sleep. He is able to play board games with Patricia during the afternoon. I need to ask her how he played. His appetite is increasing. When Steve is awake he is remarkably alert—not nearly as slow as in other episodes. I would compare him to the final days of most of the previous episodes. I am truly amazed at how light this episode is.
Wednesday August 4 Steve sleeps until almost 11 am he seems not as good as he was yesterday maybe the effort of keeping himself up is catching up with him. Appetite is more pronounced. Back to watching movies. There are no other symptoms. Still trying to observe where we are in the episode process. Will reread the logs and try to compare. We are scheduled to leave for Benbow on Friday August 13. I hope that he is out by then. I will ask to Cindy to review these notes and add her thoughts to mine.
Cindy Notes: Steve’s speech pattern and tone of voice caught my attention Thursday. He spoke for about a minute in the ‘baby voice’. He then was completely normal. I attributed it to his back spasms and just being a kid who has to be waited on while convalescing. Saturday Steve asked for some simple thing to be explained to him and then said ‘OK’ in a childlike voice. He was normal acting after that. I did not notice anything else until he told us he was sick. After that he went to bed seemingly relieved we knew and would take care of him so he relaxed. He eyes are amazingly clear—there are lights on back there this time.
August 12, 1993 Steve came out of episode today—two weeks from day we first noticed symptoms. He did go through the same stages—just very light. He did some singing, very little paranoia. He said he was much more aware of time passing—said the episode seemed longer because he was more aware of time.
EPISODE 11 – Monday, November 1, 1993
Steve tells us after school that he may be getting sick. Patricia had noticed something about how he looked on Friday. He had been watching for symptoms since. He felt ‘funny’ like he might be going into an episode. He had talked to three of his four teachers about the syndrome. He had written his class schedule down for us and mapped out his practice schedules for his girls’ basketball team. He wanted Dick to go to practice to meet girls in case he does really blink out. He also said he wanted to start taking Tegretol if he was really going into episode. He even signed a paper saying so in case he couldn’t make that decision later.
Tuesday, Nov 2 Steve is supposed to do a drop off errand for Dick before school today. When he is ready to go Cindy asks if he is OK and does he want to drive or should she take him. He opts for Cindy to drive—bad sign. After school he says his shower was strange this morning as it had been yesterday. He was able to put contacts in, but had trouble cleaning his ears with Q-tips. These are all things that have felt strange to him in each episode. He said he was able to participate in class discussions today, but felt if he took midterms and came across a problem he didn’t know answer to he would not be able to figure it out or handle time. He has two more midterms on Thursday. It is hard to tell a teacher that you can’t take the midterm because you can’t figure out wrong answers. It is like in the morning when he awakes, if his glasses are on the night stand where they should be and his toothbrush and toothpaste are in the right place and the shampoo and soap are in the shower, he can get up and do those things. However, if anything is out of place, even a little, he can’t find them. Can’t take shower if no soap because he can’t ‘remember’ how to get new soap, etc.
We call Dr. Greg Clark as we feel it is time to start Tegretal. Dr. Clark has moved to Oregon. We are referred to Dr. Sid Choslovsky or Dr. Stroud. Well, we have seen Dr. Stroud and didn’t like him and won’t go back there. Our choice is Dr. Choslovsky. We hope he is as nice as Dr. Clark was and will cooperate with us in what we want.
Wednesday, Nov. 3 Steve is about the same. Functioning almost normally to anyone who does not know him very well. He does not go to school this day. Thursday, Nov 4 Still no school. Feels would not be able to handle class discussions. Still coaching basketball team—Dick notices he had trouble explaining things to girls. This is not real noticeable to anyone but us. Friday, Nov 5 Talked with grandparents today. Played volleyball in evening. Patricia said he did pretty well. I noticed a couple of childlike comments from him. Saturday, Nov 6 Went to watch Michael play soccer in early morning. Steve was a little grumpy and righteous about leaving trophy ceremony early to make Cup Tournament. Helped coach soccer team in Cup Tournament. Seemed more tired as afternoon went on. Went to movie that night. Steve said he enjoyed movie, but he found himself ‘creating’ next scenes. He has done this in all prior episodes. Sunday, Nov7 Seemed more tired today. At morning soccer game got mad at bad call ref made and called him a ‘bag of shit’. He was of course red carded. Steve would never have called a ref a four-letter word if not sick. He was quiet the rest of the day. Before going to bed he asked what time dr. appt and asked to be awakened at 9:30, said he was crashing and not sure how good he would be tomorrow. Said he had trouble seeing last 24 hours. Tunnel vision is back.
Monday, Nov 8, 1993 Steve up for Dr. Could not get contact lenses in. Wearing glasses. We see Dr. C. He is nice and easy to talk to. He seems interested in KLS and more specifically in Stephen. He asked Steve a lot of questions—how he felt going into episode, how felt during an episode. He wanted to know how we felt, what else was involved besides sleeping-we told him of paranoia, eating disorder, hallucinations, colorful language etc. He agreed to try Tegretol and reassured us of its safeness. Steve started taking Tegretol that day. (200mg twice a day) When we got back from Dr., Steve went to bed and slept for rest of day except for dinner.
Tuesday, Nov 9, 1993 Steve slept heavily all day and night. Got up only to eat and go to the bathroom. Wednesday, Nov 10, 1993 Steve is still sleeping soundly all day. In evening he was in his upstairs room and all the family was downstairs. Steve called us to have someone come up. He was scared. He had us leave our bedroom door open that night so he could call us if needed.
Dr. C called and wanted article that stated Tegretol worked; he could not find it. We said we would fax him copy. However when we began looking for it all we could find was tegretol being tried and not working, then going to lithium. We could not believe it. Read articles again. We all remembered or thought we remembered reading article. Could we have all misread this? Mass hysteria or something?
Thursday, Nov 11, 1993 Steve was up most of the day Thursday. He watched movies or dozed through them almost non-stop all day and evening. His speech pattern was very childlike; he was extremely grumpy of noise including conversation. He would leave room in a huff if you talked too much. We had birthday party for Nov birthdays. All the family was over. Steve stayed in his room. He ate dinner after everyone else—said he waited for Patricia. He did talk politely to grandparents that night—just very short conversations. Friday, Nov 12 Steve was much more awake today. Said at lunchtime that he thought he would be ok on Sunday when Dick and Mike got back from soccer tournament in Bakersfield. Steve wanted me to get movies that evening. He specified Red October, Bodyguard, the Jean Claude Van Damme about Nowhere to Run, also Falling Down. I asked what that was about and he said a man that get tired of rat race and traffic and does something about it. (When he finally watched this movie on Saturday he said it was dumb and hard to understand.) Steve had seen all the other movies before—some several times—which makes it easier to him to understand them. Steve had me leave both his door open and my door open that night ‘in case we need to protect each other Mom’.
Faxed letter to Dr. C stating can’t find article. This embarrasses me; can I have been so dumb as to misread something that important.
Saturday, Nov 13, 1993 Steve slept until 10 or 10:30 that morning. He got up and ate, then watched TV pretty much all day. He was grumpy off and on. We discussed what to have for dinner. Steve chose fish & chips over pasta. Fish place was closed so Meredith went and got Togo sandwiches. Steve was able to tell us what # he wanted and what we should get for Patricia. He and Pat watched TV and went in spa this night. Pat left about 11:30 and Steve left our doors open again. Sunday, Nov 14, 1993 Steve was up about 10. He had breakfast and I told him to shower, as he had not showered yesterday. Then he watched movies with Patricia. He was awake all day either watching TV or laying with eyes closed listening to conversations. He was grumpy again but not as much as before. We joked about what he felt like to dinner and I poked his arm and said he felt like meatloaf. He laughed. Steve did not eat much dinner—and meatloaf is a favorite of his. When Dick got home he asked Steve is he was out yet and he said ‘no not yet.’ But Dick noticed much more alertness over Friday when he left.
Monday, Nov 15, 1993 Steve woke up early about 8:15 and seemed almost all the way back. He was ‘awake’ for about one hour, then went back to bed ‘for a while’ he said. He then slept and/or pretended to sleep the rest of the day.
Dr. C called to check on Steve and to let us know he had still been trying to get in touch with various Drs. It was really great to have him call; he does seem to be interested in Steve. After Dick and I are in bed, I hear Steve who has shut his door. I get up finally about midnight and Steve is grinning ear to ear. He is awake. For Real. He said he knows because his legs hurt. I have never heard this comment before and I ask him about it. He says they always hurt—like the adrenaline racing through his body when he finally wakes up has nowhere to go and it all goes to legs. Interesting.
I finally go back to bed about l:30 am and Steve still stays up. He has looked at class schedule to next quarter and also looked at notes and tapes I picked up today at Santa Clara. Tuesday, Nov 16. Steve is still asleep when we get up. We are afraid that he may have slipped back, but when he gets up at about 8:30 he is still awake and doing fine. I called Dr. C’s office and left message that Steve woke up late last night and was out for good.
GENERAL NOTES Dick was real surprised at how fast he popped out this time. The beginning episodes were more like this. Asleep one hour, awake completely the next. Then episodes began to change…didn’t wake up so spontaneously. We like him popping out better. Steve was functional for first week. Not so that he could go to school all week but at least so he could function at home or out with us when he didn’t have to think or figure things out. Steve still was afraid of being alone at times. He didn’t sing at all this time, but I did hear him humming one night for quite some time. We did not notice any counting on his fingers or rhythmic tapping. He did have episodes of being really grumpy, but not as rude as other times. He did eat more than he normally does, but he had asked us in the beginning of episode not to keep sweets around and to try to have ‘good’ food to eat which we did. Even at that he gained some with eating and just lying around.
Episode 12 – January 28, 1994
Friday, January 28 – We hosted breakfast for girl’s soccer team. There was a lot of leftover food—rolls, muffins, etc. I had put it all on kitchen island. Steve slept through breakfast, got up about noon. He couldn’t seem to understand where food came from or why it was there. I explained about soccer breakfast (although he already knew about it) and that food was leftover. It took him awhile to understand. Michael mentioned that day that Steve had reacted in a slow way to something else the day before. Later in the day Steve seemed fine. We watch him so close that it must seem to him that he is not allowed a bad day without us worrying about it.
Tuesday, February 2, 1994 >From Steve’s notes given to us in March, he noted he slept only 2 hours this night. He had had a very bad cold and cough. Cindy sat up with him most of the night as he was coughing so much he couldn’t sleep. He would suck on a cough drop but would not take any cough medicine, as he was afraid it would trigger a sleep episode. Wednesday, February 3 1994 Steve had appt with Dr. Choslovsky due to cold/flu. Dr. C. put him on erythmyicin. He also had Steve double his Tegretol to avoid a sleep episode since he had such a bad respiratory problem. Steve had also started taking prednisone prescribed by allergy Dr. (Biederman). He also began to use the Pulmo-Aide machine, but had run out of Proventil. He had to see Dr. Biederman to get more. Steve slept about 6 hours this night. Steve notes he was dizzy this morning.
Thursday, February 4 Steve notes indicate he was dizzy again this morning. Steve saw Dr. Biederman and got prescription for Proventil and prednisone. Dr. said he did right thing by starting prednisone and machine. When Steve got prescription filled for erythomyicin pharmacist said it would react with Tegretol keeping tegretol in system longer. He suggested Steve check with Dr. Steve called Dr. C but he was not in that day. He explained the problem and another Dr. changed prescription to amoxicillin.
GENERAL NOTES When Steve started double Tegretol we noticed he seemed more tired and not as sharp. He was the same way when he first started Tegretol so we hoped he would adjust as he had before. We were worried though as he had had the slow day of the soccer breakfast etc. He was also fighting a very bad cold/flu/cough and was not sleeping all night. February 4, 1994 Steve got a call in late afternoon from someone seeding boys’ basketball tournament. Steve talked with them for a very long time and was really animated. Patricia, Dick and I sat in family room and listened to conversation and laughed at some of his comments and how excited he seemed. We wondered aloud if he had gone through a mini episode (slow last week, animated this week). Did Tegretol suppress episode? When asked about it Steve did not feel he was in episode.
February 6, 1994 Today is Steve’s birthday. His cold/cough is better but not gone. We went to Chevy’s for dinner and Steve seemed ok. He was tired and still had a cough but was not slow. February 9 We sent a letter to Dr. C for mail away prescription for Tegretol and also noted our observations about Steve having a slow day and an animated day.
February 10 – March 1 Steve is functioning but seems tired all the time. There is no spark to him. He has been going to school, coaching girls’ team and working some afternoons at Parks and Rec. We don’t push him at home about chores etc as he seems so busy and tired. He is coming home late from Pat’s each night 11-12. Wish he would get more sleep.
March 2, 1994 Steve got up and ready for school today, but seemed to hang around longer than normal. I asked him if he was going to school and he said yes, but didn’t leave. After handing our younger son Michael his lunch to saying goodbye Steve was still there. I asked if he was waiting for a hug and a lunch. He laughed, said no, hugged me and left. When he got back from class he came to Dick and I with a couple pages of notes he had made about the last month and about what was going on in the next couple of weeks. He said he was sick again and that he had been very tired the last couple of weeks off and on and that he had kept himself going by saying just get through this one class, just get through this one practice or game. He said now that he did not think he could keep it up.
He had not been able to complete his reading for school; he couldn’t focus or concentrate. He was so frustrated that he cried. We called Dr. C’s office and told them we were sending a fax to Dr. C. and asked that it be given to him that day so he could call us today as we knew he did not work on Thursdays. We did not hear from Dr. C. We were concerned about medicine. If medicine was causing Steve to be tired all the time should we keep up double doses or should we drop to single dose twice a day to see if this is just medicine or if it really is Kleine-Levin.
Thursday, March 3 Steve sleeps late this morning. He has no school on Thursdays and Tuesdays. When he wakes up he is still very tired looking. Eats breakfast; then eats potato chips, cookies, and candy. This is a bad sign. Spends the morning lying on bed watching taped movies on TV with the sound turned down low (another KLS sign). He dozes through a lot of the movies, but they are ones he has watched many times. Steve says we have to pick up Pat from SJS at 1:15. He gets up and showers before we have to go. I drive and Steve sits very still in car. He does tell me where to park to wait for Pat but that place is full and we park close by. When she doesn’t come right away, he gets out of car and walks to corner to watch for her. When Pat comes, Steve gets in back seat and lets her sit up front. We stop at drive through McDonalds to get them lunch. Pat is getting over bad cold so after lunch they both fall asleep watching TV. When I talk to Steve in early afternoon and ask what time he needs to be at Championship Tournament game for girls he says he doesn’t think he can make it—he is just too tired to get up. Dick goes upstairs to talk with him and finds him touching his fingers to his thumb—a definite Kleine-Levin symptom.
Steve cannot make game and Dick and I reschedule Dick’s appointments so he can go coach girls. While Dick is gone I have to pickup Mike at school. Steve says he is fine alone. We have seen no signs of his being afraid of staying alone or being in the dark. Friday, March 4 Steve is grumpy today. Eats breakfast, then watches movies. He is watching ‘Little Mermaid’. When he is in an episode, Steve prefers to have TV on watching movies from VCR. Movies are always ones he has watched many times or they are children’s movies like Mermaid. We leave Steve to watch TV.
During lunch Dr. C calls and talks to me re Steve. I tell him we feel Steve is definitely in syndrome. Eating junk food, touching thumb to fingers etc. Dr. C. talks to Steve also. He feels we should stay on double doses of Tegretol. Steve and Pat wake up and eat dinner with family, then go back to TV. When I go in to give Steve his Tegretol he won’t take 2 pills. He is belligerent about it. I didn’t argue I just gave him one pill and left room. Saturday, March 5 Steve sleeps late again. I went shopping. Dick at home working. Tim and Tammy come over at 4 to do taxes. After appt. we are upstairs visiting at about 5:30 or 6 PM when Steve and Pat go into kitchen then come back out again. Steve asks if there is any dinner yet and if not if there will be or should they just eat something. I tell him we will get pizza later. Steve and Pat go back to TV. After dinner when I bring Steve a pill he wants to know why he is not getting two pills. I tell him he refused to take 2 pills last night and said he was not going to keep up with double dose. He didn’t remember doing that. I got him another pill.
Sunday, March 6 I bring Steve his pills while he is eating breakfast in his room (pizza). He grumps at me when I pick up his glass of milk to give him as my fingers touched the inside of glass. I tell him my hands are clean and leave room so he can’t continue to grump at me. Watches TV and sleeps off on and off throughout day. Steve eats popsicles when awake. Gets upset when there are none left. I tell him Dick is going to store and will get some more. Steve is dozing by TV when two of his friends come by to see if he wants to play hoops. They did not know he was sick again. When they go into room I ask Steve if he would like to sit up and visit a little he says ‘no’ and wraps blanket around himself and turns away. Boys are not offended as they have been through this many times with Steve and know he reacts like this. Pat here in afternoon and evening. When dinner is ready Steve gets up. He says he will get his own drink but doesn’t. He looks at meat (London broil) and says is doesn’t look good. Pat says she will cook his pieces some more so they are not so rare. He eats then gets up and leaves table and Pat to go back to bed.
Usually he never leaves Pat at table. Later that night after Pat leaves he is eating muffins and milk. I bring him his pills and say something like ‘Here are your two pills’. Steve takes pills but gets mad and says if I want to give him pills fine but don’t say two pills like he was a little kid. I say OK and leave room. When Steve gets grumpy like this I try to leave the room or just let him go on. I know he is frustrated by being in episode, being watched, being catered to, but sometimes I get tired of dealing with him too. Steve is sleeping by himself with his door closed. This is a big change from the earlier episodes.
Monday, March 7 I talk with Brent at SCU and he tells me finals begin Monday March 14. There is no way Steve will be ready for finals—we don’t even know if he will be awake. Brent is going to talk with professors to see how to arrange makeup work and finals during break between quarters. He will call us back Friday. Steve is not as grumpy this morning. By late afternoon I am able to tickle toes and get a laugh. He is talking a little to me. I told him he wasn’t getting well because I haven’t rubbed his legs and tickled him. He laughed a little. I watched the end of ET with him. He was not hungry and did not eat dinner.
Tuesday, March 8 When we got up this morning about 6:30 Steve came out of his room grinning and gave me a hug. I asked if he was awake now and he said yes he woke up last night and was awake most of the night. He had apparently talked with Patricia on the phone until about 1 am, then watched TV. He went back to bed then to get some real sleep. I had to leave at 7:30. When I got back at 11 am Steve had gone to get his hair cut. He came back right after I got home and was fine. He plans on going to school tomorrow.
Steve said he had not felt good in about a month. Was not really sure when he went in episode. He couldn’t remember much about classes Wednesday, March 2. He couldn’t remember much about his basketball game Tuesday night March 1. He remembers being there, but nothing about the game.
Episode 13-May 1994
Steve gets bad cold around the 18th of May. We worry that this will cause an episode. May 28-31 – I notice that Steve has times when he is not sharp. I am concerned that he may be going to sleep. Dick has not noticed anything. He says Steve’s coordination is great. They have been playing video hockey. I ask Patricia if she has noticed anything. She hesitates then says she doesn’t think so. I am not convinced.
June 1 – Patricia says she thought about it and Steve was slow at understanding something she told him on the phone. I have noticed a few more times. Also I have noticed times he sounded childlike—these are just a few seconds with a different tone of voice or cadence. Dick now says he has noticed but that coordination is still good. Steve is going to school and studying. He says he is OK.
June 2 – Steve admits he might be getting sick, but says that at this time he thinks he can still take finals next week. He says his dreams started getting strange about a week ago. We are hoping he stays awake for finals and is sharp on test days. Maybe since the last episode was very short, this episode will be only a few minutes of being slow not going to sleep. He continues medicine as directed.
June 3-5 – Steve stays home to attend Patricia’s soccer tournament, while rest of the family goes to beach for weekend. I call each day. Steve is apparently doing fine. I talk to Patricia to confirm and she says he is doing well.
June 6 – Steve has first final today. He seemed really fine today. Final went well. June 7 – Steve’s hearing seemed super sharp today. He kept commenting on things Dick and I said even when we were talking softly in another room. This was very noticeable in early episodes. He seemed a little slow in responding or understanding some things in the early afternoon. Was more normal in evening.
June 8 – Steve got up early to go to final. Seemed OK. In the afternoon he said he did OK on final in accounting. As afternoon progressed he seemed to be tired, not real sharp but not bad. Is he pumping himself up for finals, then kind of sagging?
June 9 – Steve’s last final. Yea we made it through the quarter.
June 10-16 – Steve seems fine most of the time. Occasionally he asks a dumb question or repeats a question that was just answered, but then he goes back to seeming OK. On Sunday morning June 12 we had loaded the van with stuff for the dump as we had been doing minor remodeling. Steve was going to drive but I felt he had had some slow moments while loading the van and I said I would drive. He got angry and said he was fine and I was just being paranoid. I felt it was better to be safe, although observing him during the drive and back he was fine. Maybe I was over reacting. During this time Steve has not really wanted to talk about being sick. It must be frustrating for him.
June 17 – Steve comes up to make lunch and he seems ready to talk about KLS and if he is in episode. He said sometimes he feels really good, but sometimes he feels a little strange. He never notices himself being slow. He said he has not missed any medicine, and that last episode he did miss some days. He said when he had the cold he had some really scary dreams and some really bizarre dreams (as in early episodes). His dreams lately have not been anything out of the ordinary according to him. Steve has continued to work for Parks and Recreation and seems to be handling it fine. We can only just watch him at this point. Steve is leaving for some more training for Parks and Rec. He asks me to call Dr. to get warts taken off. He will decide about numbing medicine at the time. June 18, 19, 1994 – Steve seems fine these two days. He has Parks & Rec training on Saturday, then comes to his Grandma’s birthday party. I notice nothing unusual in anything he does. Sunday is Fathers Day and again Steve seems perfectly fine. Dick says coordination is great—Steve won all video games played this day. Again I notice nothing unusual.
EPISODE 14 – August 1994
I am not really sure this is a real episode. Dick and I are on vacation and the kids are all at home. When we return around August 22, Steve tells us that he had a few 2-3 days just before we came home, when his brother and sister and girlfriend said that he was blinking out. He did not notice anything himself. We watched him very carefully over the next couple of weeks and noticed nothing. Steve had missed several doses of Tegretol before the kids noticed anything. When they said something to him, he was careful not to miss any more doses. Was this an episode? Who knows?
EPISODE 15 – NOVEMBER 1994
Steve came home from school today, November 2, and said he was sick. We thought he meant he had the flu, but no such luck. He was going to sleep. He said he had noticed himself slipping on Monday, October 31 at school. He made sure that he turned in his schedule to Academic Accommodations at Santa Clara that day. He finished school and tutored his section as scheduled from 3-5. He also played indoor soccer that night. Tuesday, he worked at the Senior Center all day and then had basketball practice with his girls 8th grade team. During this time I had talked with Steve for extended periods a couple of times. I noticed nothing. His girlfriend also said she had not noticed anything. We are both usually extremely sensitive to very subtle changes in Steve when he is going into an episode. We asked Steve if he could just be over tired as he is ‘burning the candle at both ends’. He laughed and said he didn’t think so, but he could not remember ever being just overtired.
November 3 – Steve wakes about 11:30 am and showers and eats. He says he is in an episode and would I call the University and arrange for his classes to be taped and to call the person in charge of tutoring and let her know he most likely will not be able to tutor on Monday. He watches Gilligans Island on TV and I recognize some of the childish laughing he does during the show. He is able to converse with us, however, in an almost normal manner. Dick went to basketball practice with Steve. He said he could tell Steve was not normal—-not sharp—but doubted that anyone else could tell. He told Dick that his short term memory is off which is why he can’t go to school, but that bb practice was so ingrained in him for so many years it was easy to do even when sick. He had to talk with an administrator at practice about a girl he had cut from the team. He did fine, but told Dick later that he had to ‘pump’ himself up for that. We know he can do this for short periods. When Steve went to bed Thursday night he had me check his room for spiders as he always says he can’t see during these episodes (sort of tunnel vision). He also had me leave the door slightly ajar in case he needed us.
November 4, 1994 – Steve was much deeper today. Got up about 11 am. Did not shower. Slept most of the day in the family room. He did not even attempt to go to basketball practice—Dick went for him. He was very grumpy when awake. Noise from the other kids bothered him. He even grumped at Patricia. He went to bed early and left door ajar.
November 5 – Steve still very sleepy. He did shower, but then wrapped in a blanket and slept on couch in family room most of day. His boys’ soccer team played their final game today. Dick went and coached in Steve’s place. One of the boys suffered a broken leg during the game. When Dick came home and told us team had lost and Jason broke leg Steve did not seem that interested. He was again very grumpy. Got angry with siblings playing hallway soccer—they made too much noise and the light hurt his eyes. He finally went to his room by himself. He would not eat with the family for dinner. Said he was not hungry, but we felt he did not want to join us as we were all talking. He did come to the kitchen and ate after everyone left and it was quiet. Then he went back to his room. Pat left early and Steve was still in his room. Dick and I went to bed but Steve came in our room after a few minutes and asked where everyone was. I told him Pat went home, Meredith went out with her boyfriend, and Michael was downstairs either asleep or watching TV. Steve asked if Mike would come and sleep in his room. Mike agreed and brought his blankets up and slept on floor in Steve’s room. This seemed to alleviate Steve’s fears and he slept the night.
November 6, 1994 – Steve got up about 9 a.m. and fixed himself breakfast. He then went back to his room to lie down. We have been making sure Steve continues taking his medicine during this time. He got it himself one day but took pills from wrong day. We give him the pills now so we know for sure that he gets right dose. Steve got back up around 11 am when Pat came over. They went downstairs to watch TV. Steve seems slightly more alert today and is less grumpy. He ate dinner with the family and seemed more alert later in the evening. He still had Michael sleep with him this night.
November 7 – Steve got up about 10 am. Steve seems more alert today, but still very non-functional. He did some joking around and walked around the house several times. This is a good sign, but the ‘walkies’ do not continue. He is grumpy but not nearly as much. He had Michael go to sleep with him, but he kept TV on. I went in room and told him Mike had to get up at 6 and needed to sleep. He turned off TV. About 11:30 PM Mike came in our room and said Steve wanted me in his room. Mike went to his room and I took a blanket and pillow to sleep in Steve’s room. About 2:30 am Steve told me he was ok to sleep by himself and I could go. He even said I could shut my bedroom door.
November 8, 1994 – Steve got up about 11am and showered without being told. He did not eat. When Dick and I ate lunch we asked if he were hungry. He did not want to eat then but wanted McDonalds later. Pat came over about 2:30 and went and got him McDonalds. He is still not back. Dick and I have reservations to fly to LA tomorrow for a conference. We decide to wait until tomorrow am to see how he is before I cancel my flight. Steve is in bed in his room by 9 PM. About 10pm he decides he wants to go downstairs and watch TV and sleep on sofa bed. We make up bed and leave him watching TV. The next morning, TV is off, lights are off and Steve is asleep.
November 9 – Steve is up about 9:30 am. He goes up and fixes himself breakfast—hot dogs and takes his pills. He is still in syndrome. He lays on sofa bed in family room and watches TV, Raiders of Lost Ark, Stars Wars. Steve mentions that he thinks he needs to drink more liquids. He almost always has water or juice with him but he feels he isn’t drinking it and asks us to make sure he does. I make OJ and make him drink a big glass then get him a popsicle. He seems happy now. He makes a PB&J sandwich for lunch, but when Pat comes later he has her make him a fajita, then he has another sandwich. Pat goes to work and Steve continues to watch TV.
When I get ready to take Dick to airport, Steve says he is OK to stay alone, but asks just when I would be back. He is OK when I get back after about 45 minutes. Steve eats dinner with us and takes pills. Pat and Meredith are here when I take Michael to hockey game and pick him up at 10 PM. Dr. call while I am gone and says he got fax, he is going out of town, keep medicine the same. He asks Meredith about Steve. She tells him he is still asleep but she doesn’t pay much attention to him now so she can’t give details. I go to bed about 12 after checking Steve. He is still watching Star Wars. About 2 in the morning I hear Steve coming up stairs then doing down. I hear him again a little later and I get up to see if he is OK. He is back in family room on sofa bed, lights out and TV off. When I ask if he is OK, he says Yes, I’m awake and can’t sleep. Then he says I should have gone with Dick to LA. Oh well. He has folded clothes from dryer and straightened family room. He said he would have vacuumed but he didn’t want to wake everyone. He is awake and the excess energy or adrenaline is kicking in. After a bit, I go back to bed.
NOVEMBER 10 – When I get up at 6:30 am, Steve is just coming upstairs and says he is going to bed in his room, but that he is just tired from being awake all night. He is always afraid to go to sleep after he wakes up, as he worries that he will go back in syndrome. Several times in the later episodes he has not been sharp for a few days after waking and this bothers him. Steve wakes again about 11 AM. He is not sharp, but he has also been awake all night. Later I realize that Steve is not only not sharp, he is back in syndrome. Sleeps most of day.
NOVEMBER 11 – Steve sleeps most of day. When I go pick Dick up at airport, Patricia has Steve shower and shave. He is up when we return. Steve eats dinner with us and makes a few jokes. It is Dick’s birthday and Steve puts candle on cake and says one is enough. After dinner Steve and Pat go to watch TV. Steve is more alert but still in KLS.
NOVEMBER 12, 1994 – Steve sleeps most of day again. He watches TV in evening.
NOVEMBER 13 – When Steve gets up about 9:00 am, he declares himself awake. He remembers being awake late Wednesday night or early Thursday morning, but says he does not know what happened. He knows he was awake almost all night then slept the next morning, but when he awoke he was back in syndrome. He said that was real depressing to him. We continue to watch him all day and evening. He is fine. The true test will be tomorrow morning—will he still be OK?
NOVEMBER 14, 1994 – Steve is still awake when he gets up. He goes to school and discusses makeup work with professors. He is still OK when he finishes school. Life is back to normal.
EPISODE 16, MARCH 6, 1995
Late February we noticed that Stephen seemed slow at times, then he was fine. We convinced ourselves he was OK. Patricia asked Steve at dinner one night if he was OK. He reacted by making a face. She said, ’ well you don’t tell your parents when you think you are going to sleep.’ I asked him if he was sick and he very nastily said that if he was sick he would tell us and that he did not want to be asked about it. I backed off and just watched him over the next days. He had good days and bad. On Sunday morning, March 5, he said he was sick. He stayed home and watched TV all day. Sunday night Steve asked me to call the school and let them know he was sick. I faxed a letter to Dr. C. to let him know and to ask about how to change medicines. I called Planetree to order med search but they are closed Mondays.
Dr. Choslovsky called in afternoon and said he had done literature search that morning before getting fax and had already ordered copies of new literature. At least one was on lithium. He said we would need to taper off tegretol and then start lithium. I told him we probably would wait until summer. He also had Stephen begin taking three tablets twice a day. This is up from two twice a day.
Tuesday, March 7 – Steve gets up around 10AM and fixes himself breakfast and then comes down to watch TV. Star Wars and Lion King played most of the day. Steve dozed off and on but was not really asleep. Steve has me check his room for spiders before he goes to sleep. Wednesday, March 8 – Steve sleeps past noon. He gets up and fixes two hot dogs and chips and a drink and takes them downstairs and puts on TV. After he eats he goes to sleep on couch. He is not just dozing this day, but sleeping soundly for long periods of time. Grandma June and Grandpa come over and bring him cookies. Steve thanks them then gets up and goes upstairs. He does not return while they are there. After they leave he continues to alternately watch TV and sleep. He eats hot dogs for dinner. He takes pills without fuss.
Thursday – Saturday, March 9 – 11 – Steve continues to sleep until about noon or 1 PM. He gets up and eats, takes pills, then comes downstairs to watch TV. Dozes off and on during movies. Grumpy at times. Sunday, March 12 – Steve sleeps late again. Watches TV after eating. When Pat comes over he continues to watch TV with her. In the late afternoon, he goes upstairs and seems to sleep soundly in his room. Later he comes downstairs and watches TV some more. He seems slightly more alert now. He does not get grumpy when I ‘pet’ his unshaven face. These are good signs. Steve is still up when we go to bed.
Monday, March 13 – Steve gets up around noon and says he is OK. He cleans up his room and sorts laundry. He seems real animated—excited about being awake. Talks about his girls’ BB team. Remembers talking to vice principal at school about awards ceremony coming up at end of month. He is OK all day. Question is will he be OK when he wakes up tomorrow.
Tuesday – March 14 – Steve is fine when he wakes up. He calls school to arrange to get notes from classes and make arrangements to take makeup finals. He plays bb in the evening. Wednesday – Faxed a note to Dr. C that Steve is awake. I told Steve to call Dr. C and arrange blood test, chest xray (for city). He said he would but is off to Santa Clara University.
EPISODE 17 – OCTOBER 23, 1995
Steve called us in Denver on Oct 28 and told us he was in episode. He felt he had been in it since October 23 (Monday). He had continued to go to school that week and had taken midterm. He did not do well on it. When Steve had gone to Dr. C last time (Sept 27?) Dr. C said that if he thought was going into episode he should begin taking tegretol as well as lithium as he felt that tegretol lessened episode.
We came home Oct 31 and found notes from Steve about his medicine and also that he had started taking prednisone for allergies. We were adopted by two kittens that we are trying to find home for—they stay outside during day and inside Meredith’s room at night and are never in rest of house. He is in the middle of midterms and also interviews for job. Steve has been playing indoor soccer, basketball, touch football. He did not coach the 8th grade girls basketball team this year as he was concerned about doing too much since he knew he would be going through interviews. He has been getting at least 8 hours sleep each night.
Nov 1, 1995 – Steve slept until about 9 am then got up and warmed up spaghetti for breakfast. He said he had taken medicines. He showers about noon and seems more alert, but he almost always is this was in afternoon. Steve continues on about the same for several days. Dick and I feel strongly that Tegretol is dragging Steve down and we have him stop taking it. He continues lithium. Seems to improve after a couple of days without tegretol.
Nov 8 – Steve is awake in evening. We will see what tomorrow brings.
Nov 9 – Steve is awake, but seems very shaky. Could be result of going off tegretol? We remember he was shaky after going off it last year.
Nov. 10.- Steve is OK. Shakiness has almost gone. Now to play catch up at school and also to get back to interviews. Ernst Young has sent Steve an offer in the mail without second interview. Steve visits office and likes it, but will visit SJ office next week and make a decision then. He also interviews with Arthur Anderson but although they like him, their offers have already been made while he slept. If someone turns them down Steve would get offer. I think he will take Ernst & Young’s offer anyway. Both companies know about KLS and are ok about it.
EPISODE 18 – JULY 1996
Unfortunately this episode was not followed closely. It was a much lighter episode. Dick and I were involved in helping Dick’s dad who has Alzheimer’s while his mom had surgery. It was a very bad time for his parents. We also had reservations for camping at the beach over July 4 week. Michael, Meredith and Patricia took care of Steve. Steve was able to come over to the beach with the kids as he was by then coming out of the episode. He was still grumpy at times—playing volleyball he got upset over some little things—not like his usual self. Kids returned home before us. When we got back Steve was OK.
EPISODE 19 – APRIL 1997
In April 1997 after Steve and Pat were married, Steve went to sleep again. Granny and Grandpa June took cookies to their apartment. Can’t find any documentation for this though. I may have left it to Pat.
EPISODE 20 -MARCH 1998
Steve is asleep again. Pat said he started getting sick on Monday. They played basketball on Tuesday night. Pat said Steve shot really well but did not talk to anyone. When he got home he went to bed and slept. Seems deeper than last episode. Pat remembers that 2 weeks ago Steve was punched in the head at another basketball game. She had been watching for sleep signs. It is also the time of year that Steve often get sick. Any correlation? It is a really bad allergy season due to ‘El Nino’. Does this have anything to do with it? Meredith and friends went to see him on Saturday. He did not want to see them or talk. However when she got ready to leave she said she would be back in May (after school) and Steve gave her a hug and said goodbye.
On Monday Pat had a game after work and did not want to leave Steve alone for that long. I went over Monday afternoon and fixed dinner and some chicken and noodles for him to snack on and stayed until Pat got home about 8:30 PM. Steve watched movies and napped on the couch. He helped me empty the dishwasher and ate dinner with me. The next day Pat brought him to our house for the day. Steve stayed in Meredith’s room and watched movies. I checked on him often. He went upstairs periodically and got cookies and milk. I fixed him lunch. However I then discovered that our hamster Animal Jerry was missing and I got very upset and went to Meredith’s room and moved stuff from under the bed and everything out of the closet floor to look for Animal. This seemed to bother Steve. He wanted quiet. I eventually found the hamster.
I continued to go into Steve’s room and check on him. He knew I was still upset over losing the hamster. My mom called and was coming over with my sister from Denver and bringing Steve snickerdoodles. I went in and told Steve and he said, ’ I should have stayed at home. At least there I would have had it quiet and been able to rest.’
He was polite to Granny June and Dianna when they came, but did not get up. He had dinner with us and Pat and even helped clear the table. He thanked me when they left for home and took some movies and cookies. He did not come back to stay again.
I guess it was pretty active at our house that day! Steve and Pat came over on Saturday to watch the Stanford BB game. I went out and brought home dinner. They watched part of the next game and then went home. Steve said he was tired. Before they left, he helped me look for a battery for their smoke alarm so that they would not have to stop at a store on the way home.
1998 to June 2006 Steve continued to have episodes. His last episode was in September 2001. He went into episode just before the Towers were hit by terrorists. He could not understand what was happening on the TV and decided that the TV could only be used to watch movies. Steve has been episode free since that date. We are knocking on wood and crossing our fingers that it never comes back. Do we quit worrying? Of course not—we just try not to think about it.