By Leslie Questel, California
Jesse was born on August 17th, 2001. Other than the occasional cold or flu, Jesse was a fairly healthy child. Jesse does have a very mild form of asthma, one which he rarely ever had to seek treatment for. He had been diagnosed and believed by doctors to have ADHD. My husband and I did not believe Jesse needed any medical medication for his condition. Jesse has been able to manage going without resorting to medications for the ADHD.
From time to time, Jesse did have problems keeping his attention focused during class at school. However, he managed to work through these issues to complete his homework and assignments. Before being diagnosed with Narcolepsy (a condition characterized by an extreme tendency to fall asleep whenever in relaxing surroundings) and Cataplexy (a medical condition in which strong emotion or laughter causes a person to suffer sudden physical collapse though remaining conscious), Jesse had no major illnesses or hospitalizations. He participated in and played several sports including baseball and football, although his personal passion was football. It is important to note, Jesse never had any major hits to his head while playing football or baseball. He only had the normal football bruises from time to time on his arms and legs, but nothing major. He was a normal kid playing sports.
On August 13th, 2014, Jesse had a doctor’s appointment during which he received several vaccines. One of them, the one which we feel is the issue, was the human papillomavirus (HPV) vaccine, Gardasil. After his first injection, I started noticing small changes in Jesse’s sleep habits. He began staying up very late and had trouble falling asleep. My husband would come home late at night and early in the morning and stop by Jesse’s room to find him still awake and playing on his game system or phone. When asked why he was not asleep, he would tell us, “I can’t get to sleep” or “I’m not tired.” We initially thought this was just a phase he was going through.
My husband and I also noticed Jesse displayed additional symptoms as time went on. During football, Jesse would fall and later tell us, “My knee just gave out.” We started noticing him sleeping at odd hours during the day while still having difficulty sleeping at night. Jesse began having trouble staying awake in class at school.
Jesse’s sleep issues continued to get worse. He would frequently fall asleep while watching television with the family. Often when Jesse would have friends over, we would find Jesse sleeping and his friends doing whatever while he slept. We told him it was very rude to have friends over and sleep while he should be entertaining his friends. He would tell us he couldn’t help but fall asleep. My husband and I still thought Jesse was just going through a phase typical of those during teenage years.
In the summer of 2015, our family went on a vacation to Montana, by way of Utah, Wyoming and even South Dakota. We visited Yellowstone, Mount Rushmore, Crazy Horse Monument, and many other tourist attractions. Jesse’s sleeping issues continued throughout the entire trip. Things were at the point where my husband and I, along with my husband’s parents, began to understand there was probably a serious health issue involved with his new symptoms. It was not simply because he was a teenager.
We got home from vacation and Jesse began the new school year. It was his first year in high school, freshman year, and Jesse was excited. He could not wait for the high school experience and was extremely excited about participating in the fall football season. Jesse’s issues continued. He was having trouble staying awake during class and staying asleep at night. Jesse was having similar issues on the football field as well. He could hardly stay awake to practice his favorite sport.
My husband and I decided, enough was enough. We needed to have him checked out by doctors.
We took Jesse to his next doctor’s appointment on August 18th, 2016. On this date, his doctor, Loan Thuy Lu, stated she believed his sleeping and other issues were a problem of not being on a proper sleep schedule. Doctor Lu prescribed Melatonin in an attempt to help Jesse sleep during the night. The same day, Doctor Lu advised it was time for Jesse to get his second (HPV) shot. Since my husband and I had no idea this vaccine could have triggered Jesse’s new medical conditions, he received the shot.
After the second shot, things went from bad to worse for Jesse. He continued falling asleep all the time. Along with the issues stemming from his sleep problems, Jesse began having problems with his muscles and again with his knees buckling during football. He could hardly even stay awake and standing at football practice. We began to notice the Cataplexy in Jesse’s face when falling asleep at odd times. It looked like his facial muscles would just give out and then he would quickly fall asleep.
Jesse started telling us that sometimes he would feel awake, but unable to move, as if he was paralyzed. Jesse started hallucinating and having nightmares. At times, I could hear him screaming from his room. I would quickly go to check on him only to find him fast asleep. There was one occasion where Jesse came into my room and told me he heard someone in the house like someone had broken in. I quickly got up and checked only to find no one had been in the house, no alarm was tripped, no doors or windows opened. I believe he was hallucinating.
We scheduled another doctor’s appointment, where the doctor advised us that Jesse displayed symptoms of Narcolepsy and set up a sleep study examination. Upon completion of the study, the doctor diagnosed Jesse with both Narcolepsy and Cataplexy. The doctor prescribed Adderall and Provigil to help keep Jesse awake during the day and Xyrem (HGB) to help him sleep at night.
My husband and I started to study and learn everything we could about Narcolepsy in order to better understand what was going on with our son and how to deal with his newly diagnosed conditions. During this same time period, we joined several online social media support groups. We were learning a lot from other parents who had children with the same conditions.
Also while researching narcolepsy and cataplexy, we discovered several things were causing Narcolepsy in people all around the world. Both conditions seemed to have connections with two vaccines, the H1N1 vaccine, and the Human papillomavirus (HPV) vaccine. Of course, when mentioning this to Jesse’s doctor, she quickly disregarded it.
Jesse has a really hard time trying to deal with the harsh reality of life with narcolepsy and cataplexy. He had to quit football and sports until we can figure out how to manage his medications effectively. Jesse had to enroll in a hybrid homeschool program to catch up from falling behind in school. Jesse is frequently depressed and still having problems staying awake during the day and sleeping at night, despite his medications. Jesse’s hallucinations and Cataplexy seem to be getting worse.
Getting my son to stay on a regular schedule of taking his medications is hard. At times he refuses because he is afraid of becoming addicted to the medication he’s been prescribed. He constantly says the medication does not work anyway.
Jesse has become depressed and has erratic mood changes. He has explained he believes his idea of the future has been swept away. Jesse had dreams of being a professional football player; following in his father’s footsteps in the military, or maybe becoming a police officer. Jesse has expressed that he has seen his future plans crumble before his eyes. Jesse has lost many of his friends and feels alone. He feels his future is impossible to see.
Jesse’s attitude has changed. He has gotten angrier and more depressed. He takes his anger and frustration with this disorder out on everyone in our family. Every day is a fight to get him to stay on track with his medicine. His depression has gotten to the point where he makes comments about wishing he was dead and hurting himself. We are seeking help for this. We are having to now find a family counselor and therapist to help us with him.
There are days where I cry several times throughout the day from being worried about my son or stressed out by his moods and attitudes. I call my husband crying while he is at work as a police officer, which I am sure does not help him at work.
I see this will be a lifelong battle for Jesse to find the will to go on and keep pushing through the obstacles which come in front of him. My husband and I fear for Jesse and his hopes for a prosperous future. We fight every day to stay strong and pray we can continue to be strong for our son. It is not easy. It is extremely difficult to deal with his depression, anxiety, and anger. We only hope for all our sakes, we can get a handle on his condition and beat this.
My husband and I are angry at the fact that Kaiser Permanente and its doctors know the side effects and possible reactions to the HPV shot. We feel they coerced us into believing it was the best thing for our son to prevent cancer in the future. We believe they did not properly warn us about the possible side effects or dangers.
Furthermore, my husband and I are extremely angry that they did not recognize, or even consider the possibility that Jesse’s symptoms reported during his doctor’s appointment after receiving the first shot might be an adverse reaction. When the second shot made his condition even worse, it still was not considered as a possible reaction to the vaccine. My husband further notes that when he asked one of the doctors if the shot could be the problem, the doctors quickly dismissed his question without even researching the possibility.
We are angry and feel Kaiser Permanente could have prevented our son from experiencing this illness in the first place. We believe Kaiser Permanente could have certainly prevented making his condition worse after the second injection.
We are worried Jesse’s condition will continue to get worse while doctors at Kaiser Permanente continue to downplay the potential causes.
We believe that if Jesse’s medical conditions were not triggered by HPV vaccines, the doctors at Kaiser Permanente have an obligation to at least try and discover the real cause so he can be treated effectively.