Jeff’s KLS Diary

The following is the diary of Jeff Sagel.

FIRST EPISODE Sat., Jan.22, 1994

Jeff is 14 years old and in the 8th grade. He played in a school basketball game and then went to a party at one of his team mate’s house. He had a cold and headache and took Tylenol that his friend’s mother gave him. He called me to pick him up before the party was over. Sun., Jan. 23, 1994 I made Jeff go out collecting for his paper route. The money was due the next day and he’d had a week to collect. Jeff didn’t want to collect- it was cold out and he had a cold. He collected from the minimum number of people required. When he came home, he went straight to bed (6:00 P.M.). Jeff slept all the way through until it was time to get up for school the next day. Mon., Jan. 24, 1994 I got a phone call from the principal around 10:30 A.M. She told me that Jeff kept falling asleep in class. At first, his teacher was scolding him, but then she could see that he couldn’t help it. The principal (Mrs. Fisher) asked me what time he went to bed the night before. I told her 6:00 P.M. and we agreed he must be ill and I picked him up from school. When we got home, he went to bed and I made an appointment for him for the next day.

Tues., Jan. 25, 1994 It took some coaxing to get Jeff to shower and dress to go to the doctor. Jeff didn’t speak to me at all during the ride to the doctor which was highly irregular. We saw Dr. Victor Smith. He said Jeff had a sinus infection and wrote a prescription for amoxicillin. He took one pill when we got home and laid on the family room floor and went back to sleep. At dinnertime, we tried to wake Jeff to see if he wanted to eat with us. He wouldn’t talk and would only walk if we led him by the hands. He could handle one word answers if we asked him a question repeatedly in his face. We called the doctor and the office was closed, so the answering service had the doctor on call return our call. We had never met this doctor. When we related the events of the day to her, she said,’ Well, maybe that’s just his body’s way of dealing with the infection.’ I told her, ‘No, when Jeff is sick, he wraps up in an afghan, watches TV, and complains. We’re going to the hospital whether you want us to or not,’

We took Jeff to Children’s Hospital. There were plenty of people in the Emergency Room, but we only waited about 10 minutes. They took Jeff ahead of everyone else. The did a spinal tap and then a blood test and urine test. The only things that showed up were the topical ointment they used to clean the area for the spinal tap and caffeine from a soft drink he’d had earlier. They sent him home because there were no more tests they would do that night and he might as well go home and get a good night’s sleep. Wed, Jan. 26, 1994 to Jan. 30, 1994 After waiting most of the day for the doctor to call back, Dr. Smith sent us back to Children’s Hospital. During the next few days, Jeff slept about 20 hours a day, waking only to eat and go to the bathroom. The adolescent ward had a refrigerator and microwave where the teens could help themselves. Jeff drank many apple juices and ate many cups of ice cream. When his food trays came to his room, he’d only eat the things he really liked a lot. Our doctor did not come to see him until Friday which did not please us. Jeff seemed like his sense of touch is extra sensitive and he still has a headache off and on. A group of neurologists, psychologists, and pediatricians came in Jeff s room a few times a day and asked him the same questions over and over again. The doctors have a hard time waking Jeff or keeping him awake long enough to ask their questions. They ask him, ‘Where are you?’; ‘Do you know what day it is?’: ‘What’s 100 minus 7? What’s 7 from that? What’s 7 from that?,etc.’; ‘Who is president?’; ‘What school do you go to?’ He knows all of the answers except sometimes he doesn’t know what day it is.

The pediatrician on staff suspected viral encephalitis. On Thursday, they started Jeff on acyclovir and something else I don’t recall. The next few days, the hospital did all kinds of tests- CAT Scan, MRI (very upsetting to Jeff), EEG, EKG, more blood and urine tests. They wanted to do another spinal tap and Jeff went crazy. He knew how much that hurt. The hospital staff didn’t want to allow either John or me in the room while they did the spinal tap. John told them if they didn’t allow one of us in the room, they weren’t going to do the test. So, I was permitted to be in the room, but was told to stand in the corner and keep my mouth shut. Children’s Hospital is a teaching hospital and well renowned for the job they do. An intern was the person trying to do the spinal. Jeff was not being very co-operative. There were 2 male nurses holding him down. They told me to hold his hands and try to calm him down. He bit me so I would let go and he spit on the nurses suede shoes so that he would let go and Jeff could get away. The ‘doctor’ got the needle in his back finally, but could not extract any fluid. After about 45 minutes of this, John found the pediatrician to find out what was taking so long and insisted that a real doctor take over. They sedated Jeff and within a few minutes the head doctor completed the spinal tap. While they rolled Jeff back to his room, John informed me of his conversation with the pediatrician. John asked her what the worst thing that could happen would be. She told him that Jeff could die, but they didn’t think that would happen. Then he asked her what the next worst thing that could happen would be. She told him that he could be left a vegetable, but they didn’t think that would happen. So, John asked her what she thought would happen. She told him that they thought he would be left either physically or mentally deficient to some degree. Hearing this was the lowest moment of our lives.

When Jeff was coming out of the sedative, he asked the nurse (Theresa) for a kiss. He would be really embarrassed by this if he knew it. All of the tests were normal except for a slightly irregular EEG. Nothing showed in the spinal fluid. The diagnosis remained: viral encephalitis. Jeff sang 2 songs over and over again when awake. The song from Little Big League-‘When you’re heading for first and you feel a little burst-diarrhea, diarrhea, etc.’ and ‘Doctor, doctor, give me the news, I got a bad case of loving you.’ He watched the movie Aladdin repeatedly. John and I took turns spending the night with Jeff. Whichever of us slept at home, went to work the next day (we are self-employed). Then we’d switch that night. The hospital brought in a cot for us to sleep on. We would not leave him by himself in the hospital and he was checking to make sure we were there every time he woke up. The day before the Super Bowl, the activity director asked Jeff if he’d like to come to a pizza party and paint a Super Bowl shirt. He said yes, but went to sleep and missed it. She brought him a Dallas Cowboy Super Bowl shirt anyway.

On Sunday, John went to his parents’ for dinner as we were getting hungry for vegetables. I was at the hospital with Jeff. All of a sudden, Jeff sat up in bed and said he was better and wanted to go home. He chattered on and on about ‘Did this happen? Did that happen? It was like I dreamed it.’ I called John’s parents’ house, but he had already left for the hospital. Jeff talked to grandma and grandpa on the phone. We watched for John from the window and when we saw him cross the street, we went down the hall and stood outside the elevator doors to surprise John. From that point on, Jeff was much better. The doctors made him stay in the hospital to finish the 10 day course of acyclovir.

Mon. Jan. 31, 1994 to Sat., Feb. 5,1994 During this time Jeff walked the halls and complained that his legs hurt. We attributed that to muscle atrophy from lying in bed so long. It was thought that Jeff’ s staring when awake was grand maul (?) seizures. Our doctor put Jeff on Dilantin. On Saturday, Feb. 5, 1994 he came home from the hospital. Sunday, Feb. 6,1994 Jeff has hives. I took him to Dr. Susan Finney (one of our group of pediatricians). She said Jeff is allergic to Dilantin and put him on a different seizure medicine and Benadryl for the hives. It was upsetting to us that all of the doctors involved didn’t seem to hear what we as parents observed.

Our group of pediatricians were especially remote and not there for us. We could get no answers from them. After Jeff was better (but still rather tired), we quit his doctors. The other members of our family go to Dr. Marc Alexander. He wouldn’t take Jeff until he was in high school. That’s why he was going to the pediatricians. We spoke to Dr. Alexander about Jeff and he agreed to take Jeff. He seems to be really interested. He took Jeff gradually off all medications. He said Jeff was on way too much Benadryl; that even he would be sleepy if taking that much.

NOTE* Jeff grew 6’ over the summer preceding his first episode and 1 1/2’ from the time he was admitted until he went back to the hospital at the beginning of March. ** Jeff had chicken pox when he was 4 years old. Then he had shingles when he was 10 years old. ** Do either of these things have anything to do with this illness? Perhaps hormones or a chemical imbalance? Perhaps chicken pox virus manifesting itself in different form? ** This episode lasted 7 days.

SECOND EPISODE Fri., Nov. 4, 1994

Jeff is in high school now. School nurse called in late morning to say that Jeff is falling asleep in class. I picked him up from school and called the doctor. John took him to Dr. Alexander who sent them on to Children’s Hospital. In Emergency Room, they did the same tests as last time- spinal tap, blood, and urine tests. Later in evening, he was admitted. He was really hungry by then. We could find nothing to eat except a burger from a vending machine. He ate very little of it.

Sat., Nov. 5,1994 Today is Jeff’ s 15th birthday! He got balloons, three cakes, and presents which he isn’t even aware of. The doctors (Dr. Alexander is not on staff here because he doesn’t take children patients) started Jeff on acyclovir right away because they thought that’s what worked last time. All of the same tests were done again. They also did a hearing test, that tests brain stimulation from noise. It turned out fine. Each morning the doctor would come in the room and say, ‘The good news is it’s not a brain tumor (or some other life threatening thing); the bad news is we don’t know what it is.’ This was so frustrating. Because they can’t find anything physical wrong with him, they believe it must be psychiatric. They have ruled out brain tumor, stroke, heart attack, diabetes, drugs, lupus, mono, narcolepsy, and thyroid problems. This bout is very similar to last time. He sings a lot when awake, this time the movie he keeps watching is Return of Jafar. He has headaches in the beginning and off and on during course of illness. However, this time every time a female doctor or nurse comes in to see him, he wants to play with her stethoscope. It gets so that when a female walks in the room, I hold his hands. He also plays with himself frequently this time. Also, this time he frequently pretends to be eating food. This is very difficult for us to observe. He is grumpy and mostly wants us to wait on him whenever he wants something.

He wakes up again like before on day #9 which is later than last time. The psychiatrists put him on Haldol to help him concentrate even though we voice our misgivings. We are very uncomfortable with this. Jeff is discharged from the hospital on Nov. 14, 1994 after taking acyclovir for 10 days again.

Dec., 1994 We went to see Dr. Ren, a neuro-psychologist as an outpatient for a test they were supposed to do while he was in the hospital. They couldn’t fit him in their schedule while he was there. If it had been done while he was in the hospital, the insurance company would have paid for it. This test costs $800 and Dr. Ren assures me that it will either rule out a physical cause or point to a particular part of the brain that is affected. The test takes 2 hours one day and 1 1/2 hours on the second day. When we went back for the results, he told us that the test was inconclusive and they learned nothing. This was upsetting. Dr. Alexander takes Jeff gradually off the Haldol because it makes him drowsy and masks the symptoms. This episode lasted about 2 weeks and we have no idea what triggered it. John expressed his dissatisfaction with the hospital and was told his comments would be added to Jeff s record.

THIRD EPISODE Sun., Aug. 11, 1996

Jeff fell asleep while driving John’s truck in the morning. Fortunately, the curb woke him up and he was able to get home. Jeff and John are supposed to leave on Monday and go by boat to Marietta on vacation. (Because of our business, we don’t get to go on vacations all together.) Friday Jeff had 2 teeth filled. (He has 17 more that need fillings. He has only had one cavity his whole life until now. Is this because of illness or some medication he had been on?) The dentist (Dr. Wauligman) used xylocaine. Today Jeff told us he feels like he did when he was in the hospital.

We called Dr. Alexander and took him to Children’s Hospital again. We saw Dr. Brand in the Emergency Room. They did blood tests, urine tests, diabetes, and thyroid tests. Dr. Brand told us that Jeff has a migraine headache and put him on Compezeen. He wanted to send us home. John’s parents, John, and myself all about jumped down his throat, and told him we want to get to the bottom of this. When Dr. Brand finally got a hold of Jeff’s chart from previous hospital stays, he admitted him immediately.

Mon., Aug. 12, 1996 The pediatrician at Children’s this time is Dr. Mona Mansure. She is a breath of fresh air. She listened to what we had to say and she did not start any medications or tests right away. She said she wants to observe and ask questions before she makes any decisions. Tues., Aug. 13, 1996 Neurologists and psychiatrists came in to make observations. Jeff had an EEG and an EKG. Dr. Vassireddy (a fellow), a neurologist from Turkey told John that they’ve got 3 ideas of what it can be. She tells him that so far it seems most likely that it’s KleineLevin Syndrome. Because of her accent, he thought she said ‘Clean Living Syndrome’. Wed., Aug. 14, 1996 When we asked Dr. Mansure if Jeff was too clean or not clean enough, she looked quite puzzled. When we said Dr. Vassireddy said he probably had ‘Clean Living Syndrome’, she quickly corrected us and we had a little laugh. All tests are negative. Endocrinologist is supposed to visit to make his observations. Dr. Mansure says KLS is looking more likely. Thurs., Aug. 15, 1996 No endocrinologist. All departments are getting together to correlate information. At least they aren’t saying it’s mental this time.  Jeff tells the doctors he has to be home in time for the Cranberries Concert. He’s had tickets for it for 2 months.

This is the first case of Kleine-Levin Syndrome that Children’s Hospital has ever seen. That blows me away. Fri., Aug. 16, 1996 to Aug. 25, 1996 Jeff got to go home today. He’s still sleeping a lot. Dr. Mansure gave me a case history to read. He has much the same symptoms- sleeping all the time, eats voraciously, sings, taps his hands or feet on table or floor. When he wants something to eat, he pretends to eat air food while I’m preparing real food. He watches Aladdin over and over again. He wants to go outside and I’m afraid he’ll wander away and get confused. Jeff was home in time for Cranberries Concert, but he slept right through it. I sold his ticket to one of his friends for half price so he wouldn’t be out all of his money. His cousin works at Riverbend where the concert was, and he got the girl singer to give him a list of the songs in the order they sang them for Jeff. Jay also bought Jeff a Cranberries t-shirt. Sun., Aug. 25, 1996 Jeff tried to work today. We drove him there. He works at McDonald’s and was working the register. A customer came up to the register and Jeff just stared at her. She just stared back. Finally, a manager saw them and waited on the customer. She sent Jeff home. I guess he’s not ready to be out in the world yet.

Tues., Aug. 27, 1996 School started today, but Jeff couldn’t go. Wed., Aug. 28, 1996 Jeff went to school today. He only made it through 2 classes. He says when he’s around too many people, he gets disoriented. He came home and went to bed.

Thurs., Aug. 29, 1996 Today Jeff is better. He said he can see ‘wider’ today. I asked him if he meant he had no peripheral vision before and he said, ‘No, I always had it. I can just see wider. Before when I tried to do word search puzzles, I could only see 2 or 3 letters at a time. Now I can see the whole page.’ Jeff went to see Dr. Bruce Corser at Christ Hospital’s Sleep Disorder Clinic. When I made the appointment, I asked whether or not he had ever seen a case of KLS. He said he had. When we got there, Jeff was still in his noncommumcative state. Dr. Corser asked me questions and pretty much ignored the fact that Jeff was even there. I asked him if Jeff was like the others cases he had seen and he said he’d never seen a case before, but he concurred with the diagnosis. He didn’t want to do a sleep study and had nothing new to offer. This was a big waste of time. After Jeff was well, I spoke with our dentist and told him that it seemed the xylocaine had triggered an episode. He doesn’t want to touch Jeff now. He sent us to Children’s Hospital Dental Clinic to take care of the remaining 17 cavities. This episode lasted 2 weeks and 4 days.

FOURTH EPISODE-Nov. 1996 Nov., 1996

Jeff saw Dr. Sherman at Children’s. We discussed the best way to take care of the remaining cavities. We decide that since the xylocaine seemed to bring on an episode, we shouldn’t take that route for the rest because it would take so many trips and so many chances to go into sleep mode. So, we decide to do laughing gas and fill all the teeth at once and pull his wisdom teeth while he is out. It’s set for Mon., Dec.16, 1996.

Sun. Dec. 15, 1996 Jeff came home from work early (1:00 P.M.) and went straight to bed. I couldn’t wake him at 6:00 for dinner. I tried again at 10:30 because he’s not allowed to eat after midnight. but could not wake him. Mon., Dec. 16, 1996 Woke Jeff at 6:30 A.M. and told him to get a shower. I didn’t hear the water running, so I went back upstairs to check on him. He was sleeping in the hall on the floor. I woke him again and told him to get a shower. This time he did and dressed very slowly. He slept in the car on the way to the hospital. He slept in the waiting room. He slept on the table while waiting for someone to get things going. Much to my surprise, the anesthesiologist put him out and Dr. Pong pulled his 2 wisdom teeth and filled 17 cavities. It took 3 hours and 45 minutes in the O.R. He slept on the way home. (How do they know when he’s out of the sleep they put him in?)

Jeff can only take Extra Strength Tylenol for pain from wisdom teeth. He cries off and on. saying he wants to die and not to leave him alone. He’s sleeping on the sofa in family room and I’m sleeping in the recliner near him. I have to hold his hand and get fresh ice packs for him throughout the night. This goes on for about 4 nights. Wherever he is, his quilt from his bed is with him. Mon., Dec. 23, 1996 Back to hospital for checkup with Dr. Pong. Dr. Pong wants to write a medical journal article about Jeff- about KLS and dental connections. Maybe they can get research money. Jeff is still sleeping. Tues., Dec. 24, 1996 Christmas Eve. John, Jay, and Gina go to John’s parents’ for Christmas gathering. Jeff and I stay home. Jeff is still sleeping a lot. He’s grumpy when awake. He doesn’t want me in the same room with him. Our electric went out for close to 2 hours. I thought Jeff would be scared so I lit some candles and put them in the room with him. He told me to leave him alone.

Wed.. Dec. 25, 1996 Christmas Day. Jay, Gina, and I go to my parents’ for Christmas gathering. John was bored. Jeff is not good company. Jeff got a flashlight for his car from his aunt. He takes it to bed with him and uses it for a microphone and really belts out the songs.

Mon., Dec. 30, 1996 Jeff slept until 1:00 P.M. He was awake the rest of the day. He wants to escape. He sings. His girlfriend comes to visit. He abruptly decides to go to bed and wants to show Angie where she can sleep. His behavior is inappropriate. He is wrapped in this quilt all the time. It’s not like he’s cold, but like it’s some kind of security blanket.

Tues., Dec. 31, 1996 Jeff slept until 1:00 P.M. again. He ate and went back to sleep for an hour and a half. All he wants to eat is Cinnamon Toast Crunch cereal, and Combos. He’s drinking way too much Pepsi. Angie came to visit and they went for a walk. When they got back, they went downstairs in the basement. Angie came up very upset with him because his behavior was inappropriate. We apologized to her and told her we wouldn’t let them be alone while he was sick again. She left around 7:00 P.M. He didn’t come back upstairs until 8:00. He went to his room and sang some more.

Mon., Jan 7,1997 School started today, but Jeff couldn’t get it together enough for school. Yesterday was really good. He spent all day cleaning his room. I think he overdid it. Tues., Jan. 7,1997 Jeff went to school today- all day. He went to bed as soon as he got home and slept until 6:00. He did homework until 10:30. His eyes looked bad when he went to bed. Wed., Jan. 8, 1997 Jeff couldn’t go to school today, but got better as the day went on. Brad came over to help him get caught up on his school work. Thurs., Jan 9, 1997 Back to school again. He’s finally better.

*This episode lasted 3+ weeks. While we were afraid the anesthesia would cause an episode, he started into it before we ever got to the hospital. It would seem that this one was brought on by stress.

FIFTH EPISODE Tues., April 8, 1997

Jeff came home from work early and I was upstairs paying bills. When he came upstairs, I sad, ‘Hi. Jeff, how are you doing?’ He said, ‘Not so good, mom.’ He started crying. I put my arms around him and cried with him. ‘I don’t want to be sick. I don’t want to miss my prom and my ACT test.’ I told him to go to bed and maybe it wouldn’t happen. He went to bed, but couldn’t sleep. Wed., April 9,1997 He felt fine Thurs., April 10, 1997 Jeff came home from school feeling bad again. He slept awhile and watched TV awhile. He said his legs itch like at the beginning of an episode. He had scratched his leg until it bled. He said his eyes kept wanting to close, but he’s not really tired. Fri., April 11, 1997 Jeff didn’t go to school today. He slept until 11:00 A.M., but was awake the rest of the day. He says he feels weird. Sat., April 12, 1997 Jeff seems okay. He thinks he’s still going to be sick, but he told us sooner. However, it never happened! *Jeff made it to prom. He took Angie bowling after prom because his friends were going to a hotel party and he was afraid there would be alcohol there. * Jeff did miss his ACT test on Sat., the 12th.

SIXTH EPISODE Tues., June 17, 1997

Jeff came home from Mike’s house at 7:00 A.M. throwing up. He slept until 3:30, went to work from 5:00 until 8:00 and then went out with his friends at BW3. Wed., June 18, 1997 Jeff came home from spending the night at Jim’s and went right to bed at 6:30 A.M. He slept until the next day. Thurs., June 19, 1997 to July 11, 1997 During the night Jeff woke up screaming and crying, ‘Don’t leave me. You promised you would never leave me when I was sick.’ I held his hand until he calmed down. He was paranoid to be left alone. He slept most of the time. He ate 2 gallons of ice cream over one weekend. He ate a whole loaf of cinnamon bread in one day. He always had his quilt wrapped around him. Angie comes to visit at least every other day and stays for about an hour and a half. She has been very understanding through all of this. He sings and watches movies when he is awake and doesn’t say much to anyone. If there is too much commotion in a room, he goes back up to bed. It’s good that he’s not missing school at this time.

This episode lasted 3 1/2 weeks and we don’t know what triggered it. During this episode. we contacted a doctor in Boston who wrote a chapter in a textbook about Kleine- Levin, the receptionist asked what it was about and said she’d have him call me. We were willing to go Boston, if the doctor thought it was worthwhile. Instead of the doctor calling back, the receptionist called and said that the doctor said we should find a neurologist in Cincinnati. That was disappointing. You’d think that someone who had done research on such a rare disorder would at least be interested in talking with us.

SEVENTH EPISODE Sun., Sept. 7, 1997

Jeff and Angie went to a family picnic with us. They didn’t come straight home afterwards. When they did get home, Angie was driving his car and had her sister follow them in Angie’s car. They came in the house. Angie pointed up the steps to Jeff and he went up to bed. She didn’t say a word to us and just turned and left. Mon., Sept. 8,1997 Jeff was fine in the morning. When I asked him why Angie was so upset, he told me he didn’t know. He left for school just like any other day. The school nurse called me at 12:30. She wanted me to pick him up from school. He had a headache and she thought he was whoozie. He slept in the car on the way home. The symptoms are the same as before, sleeping, singing, eating, and this time he watches Tommy Boy at least once a day while wrapped in his quilt. It is difficult to get him to take a shower, but once in the bathroom, I confiscate his quilt and wash it. This one lasted 4 weeks and was triggered by Jeff’s poor judgment.

EPISODE EIGHT Thurs., April 23, 1998

Jeff and I had dentist appointments today. We were to see a new dentist because of a change in insurance. This new dentist office is inside Sears at Northgate. (That’s a bit odd) We waited 50 minutes and then tore up the forms we had filled out and left. Later, Angie followed Jeff home because he told her he thought he was getting sick. Fri., April 24, 1998 Jeff got up and went to school, but turned right around and came back home. He says he is sick. I’m worried about school because he is a senior and there are three weeks of school left and then exams and graduation. He very well may miss it all. I hope Elder will let him graduate.

Sat. & Sun., April 25 & 26, 1998 There is no doubt in my mind that he is sick, He said to me, ‘I can clean myself myself’ I said, ‘Are you dirty?’ He said, ‘Yeah, I’m dirty.’ Very strange. He only wants to eat and sleep. When he wants to eat, he wants to eat right now. It’s like I’m not allowed to take time to prepare it. He taps his feet and eats air food while I prepare his food. Mon., April 27, 1998 When I called school to say that Jeff wouldn’t be coming today, I left a message for his guidance counselor to call me. When Mr. Mueller called back, he said he would talk to Jeff’s teachers and see if he had enough grades for the quarter or if they would require him to make up work over the summer. He said he’ll keep in touch and let us know what’s going on. He sings. The movie of choice this time is Happy Gilmore. I’m sick of that movie. He’s watched it at least 2 times a day. John’s mother came over to help me recover the sofa seat that the dog scratched a hole in. We asked him to help us turn it on its side and he said he didn’t know if he had the strength.

Mon., May11, 1998 Every night he breaks up with Angie. Finally, on Tuesday night, she said he was really mean and she wasn’t coming back until he was better. When I went to bed, I stopped in his room to say good night. He said he was sorry he was so mean. I told him he hurt Angie’s feelings. I asked him why he broke up with her. He said he was thinking about it before he got sick and didn’t see any sense in waiting. I asked what was going on in his head, and he said he was trying really hard, but the bad guys were still winning. That night he stayed up all night. He was up when John got up at 4:30 for work. John called me downstairs to talk to him. I told him he had broken up with Angie every day and he said NO. He called her at 8:00 and talked to her for about 2 hours before she had to go to work. She came to visit after work. Wed. he slept until 4:00 P.M. Thurs. he finally was good enough to read the paper and I called school.His guidance counselor said I could pick up some notes and a test for religion class and I should turn them in on Monday. He was exempt from exams and was fine for Baccalaureate and graduation on May 25 and 26.

**This episode lasted 3 1/2 weeks. Jeff thinks it was triggered by something in the carpet at Angie’s apartment. He laid on the floor and went to sleep and he said he remembers it smelled funny.

March 2001 – Jeff Sagel It has been way too long since we have updated you about Jeff episodes and I apologize about that. Jeff had been using Almodine with great success but he only used it when he felt an episode coming on. It did seem to stop it in all cases except one. He was not in near as deep as all the other times and was very unhappy about the bordom he endured the entire 4 weeks of his episode. He did have 2 episodes after the last one posted on the diary page and then started using the almodine. Next month Jeff will be episode free for two wonderful years. He now thinks he can control the onset of them and belives he will never have another one. Carol and I pray that he is right but when can you be sure … Jeff is convinced that his episodes are a result of life choices he makes, eg alcohol consumption, excessive lack of sleep, etc. We also hope that this is true but Carol and I think there other enviromental triggers that we may not yet know about. Jeff is now 21 and completing his junior year at college. His episodes have not affected his schooling and have been fortunate that the last 2-3 episodes occured when school was not in session

KLS Foundation

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