It was the start of Camryn’s freshman year in high school and I couldn’t help but notice how completely and utterly drained she was every single day, even after frequent daily naps. She had always been a very active child who was involved in numerous activities and athletic teams, not to mention the kid had more of a social life than I ever did! Even the simplest of tasks, and the easiest of days began to show extra strain and exhaustion on her.
She began coming home from school and sleeping until she had soccer practice. She would wake up just long enough to make it through her practice and then come home and go back to sleep until dinner time, where she would be up just long enough to force herself to sit up and eat her dinner, and then she would drag herself upstairs and go right to bed for the night. No amount of sleeping seemed to give her any kind of relief from her sheer exhaustion. It was heartbreaking to watch and even more gut wrenching that nobody seemed to know what was happening to her... or why. All I knew is that her entire world had been turned upside down.
Cam had received her 2nd Gardasil shot the week prior to when all of her symptoms began, and in the back of my mind i knew there must be a correlation. I spoke with her pediatrician about it and he advised that it was most likely just normal teenage behavior or perhaps she was a little depressed. My gut feeling was immediately dismissed. I knew in my heart that something had gone very wrong for our girl. This was not “normal” behavior for her and my heart broke for the happy go lucky girl she once was.
We started to see her alienate herself from her friends and she seemed to only be comfortable in our home, or when with her immediate family. Our once overly confident adolescent was turning into an isolated angry, extremely irritable and moody teenager who never laughed or seemed to enjoy herself any longer and it felt as though she were slipping right through our hands. As a mother, I simply wouldn’t stop fighting for our daughter until I got to the bottom of what was going on inside of her body.
I started pushing her pediatrician to do more in-depth testing on her and so he sent her for blood work and an EKG, among many other specialist appointments, and we even made an appointment with a psychologist to have her tested for attention deficit disorder, even though she has always been an outstanding student and her grades never slipped through all of this. I knew that this was not what she had.... but still, I diligently and dutifully brought her to all of her numerous appointments and became more and more frustrated as the answers all came back the same... everything looked “normal”, and yet day by day, our daughter slipped further and further away from us.
By early November 2014 she started complaining that she felt really “weird” when she would laugh. She said she couldn’t really put her finger on it other than to say she felt very weak whenever she would laugh with her friends. I didn’t really know what to do with this information and when I told her pediatrician about it, he laughed and said well... I guess you shouldn’t make her laugh anymore them.
In December of that year, I finally got to witness firsthand what it looks like when the weakness came on when she laughed. I was sitting at my computer and we both began laughing, and suddenly she collapsed to the floor. It was at that moment that I made a vow to myself to keep on pushing until we found out what was wrong with her. I didn’t admit it to her at the time, but I was scared beyond belief of what we may be dealing with.
I decided to keep the appointment with the psychologist, which was about two weeks after her first collapse, even though I knew whatever was going on with her was not psychological. I was desperate, and willing to try anything or talk to anyone at that point. We just needed someone to listen. The psychologist confirmed what we already knew and advised us that she did not have ADD. Right before we were about to leave, I had described to the psychologist what I had witnessed a couple of weeks prior with her collapse when she was laughing with me at home. That was the first time in my life that I had ever heard the word “cataplexy”.
She explained that cataplexy is almost always only present in somebody who has narcolepsy, and that we should get her evaluated as soon as possible with a neurologist. I made the appointment that day and in the weeks that passed while we waited for the appointment I made it my mission to educate myself on narcolepsy with cataplexy. I couldn’t believe it had taken us so long to finally have a lead in the right direction. It seemed so obvious after reading about the disease that this was what she had, and yet all of the providers that we had worked with had missed it.
During our consultation with her neurologist, he agreed that she most likely had narcolepsy with cataplexy and advised it would be confirmed through a sleep study. He immediately started her on a stimulant to help with her extreme daytime sleepiness. Although this helped, it was not the solution that we were looking for. Her collapses continued, which meant there was very little fun or laughter in our home. Our entire family had to walk on eggshells in front of Camryn because the stimulant made her so irritable as soon as it wore off, which was typically around dinner time.
We finally had our appointment for her sleep study to confirm the diagnosis, and by that time it was not a shock when it came back that she did indeed have narcolepsy with cataplexy. Although I was pretty sure the diagnosis would be confirmed, hearing it sent me through a whirlwind of emotions. What did this mean for our daughters future? Would she ever be able to play sports again? Would she be able to drive...to hold down a job... to have children? It was a grieving process and I needed to learn to let go of the hopes and dreams I once had for our daughter, and start living one day at a time and only focusing on getting her the help she needed, with the right medications. She went through a myriad of medicine combinations, none of which seemed to do much for her except to put a Band-Aid on her sleepiness. Her collapses became more and more frequent in nature and as time went on they were definitely starting to affect her day today activities. During her spring soccer league going into her sophomore year she could barely play 4 to 5 minutes on the field, and then she would come off and collapse. I lived in constant fear that she would collapse on the field, or basketball court. It was heartbreaking to watch as a parent and I knew that something more had to be done... I just wasn’t sure who to turn to or what to do at that point. It was about that time when a mutual friend reached out to us via Facebook and told us about Dr. Emanuel Mignot through Stanford university in California. He told us that if he were to give us a piece of advice as a fellow parents of a child with narcolepsy, that he would recommend our family reach out to Stanford and set up an appointment to meet with Dr. Mignot. He advised that he may be able to prescribe a medication that could help our daughter, as it had helped his own.
It was all I needed to hear. It didn’t matter how much it cost or what we had to give up... we would do anything to give our daughter her life back. I made the call and her appointment was scheduled for September, which seemed a world away. Waiting it out seemed to take forever, while her symptoms seemed to be getting worse. I began to believe that she would never be able to truly participate in sports in the way that she once had. Even though I educated her coaches, some never truly understood what this disease did to her and continued to put the same high expectations on her as they had before her symptoms started. It was hard to watch her struggle to be the same player she once was when her body just physically could not keep up.
When the day finally came to board the plane to head to California, we had a great support system with us. Her grandmother, her aunt, and myself all flew out in the hopes of getting our girl better. Her cataplexy was worse than ever while we were there, but we remained optimistic. Dr Mignot lived up to our expectations. He spent over an hour with Camryn, answered all of our questions (and I had a journal FULL of questions), and then we spent an additional 2 hours with his research assistant (who also had narcolepsy... for the past 20 years). We left with a new, somewhat controversial prescription... and returned home with a renewed sense of hope for her future. Dr Mignot advises that most likely what had happened is that Camryn’s immune system was compromised when she received the 2nd dose of Gardasil (she had previously had mono and most likely wasn’t at 100% when she received the immunization). As fate would have it, Camryn is a carrier of the narcolepsy gene (we had her tested prior to our trip to CA). This means that unfortunately for her... all the stars were aligned that fateful day i decided to go ahead with the Gardasil vaccine. Had i known ANY of this- i would have refused. Her immune system was down, she was a carrier of the narcolepsy gene... and when she received the Gardasil injection, her own body began attacking the hypocretin in her body- making it non-existent... and this, bringing on her narcolepsy/cataplexy full force. Our family has absolutely NO HISTORY of any type of cervical cancer. As a mother, I will never forgive myself for making the decision to follow our pediatricians recommendation to give our daughter the Gardasil vaccine. We will never give it to her younger sister as we do not know if she is a carrier of the narcolepsy gene. Also of note- on 8/4/16, I made a formal report to the Vaccine Adverse Event Reporting System in regards to what the vaccine has robbed our daughter of. The decision on whether or not to give the Gardasil vaccine to a child is a very personal one. It is one that the government should absolutely NOT be a part of. Unless, of course they want to take responsibility of unforeseen trauma that the vaccine brings.
Throughout the entire process, I felt that educating her coaches, teachers, friends, and family on what narcolepsy with cataplexy was, and what it did to her was of the utmost importance. I never wanted her to be... or feel... misunderstood. We were lucky to have such an amazing school district to work with. They worked with us on an appropriate 504 plan that allowed for anything she may need to be successful in high school.
The next three years each showed a marked improvement in her health and functioning. She was the captain of the varsity basketball team in her junior and senior years, and was most improved on her varsity soccer team in her junior year. In her senior year of high school, Camryn won numerous awards including the Dick Gray Profiles in Courage Award as well as the Perseverance Award for her high school. She also made first team WAC for basketball, as well as breaking a school record for hitting seven 3 pointers in a single game. She also managed to make to section 2 records of seven or more three-pointers in a single game and also 40 or more three-pointers in a single season. Her overall GPA in HS was a 94.8.... simply phenomenal considering just a few years before she was falling asleep in nearly every class, couldn’t focus on her studies, and was getting absolutely no sleep at night. I can’t say enough for the hard work and dedication that this kid has put in. She earned everything that she has received.
She is a success story, but that does not mean every single day isn’t still a struggle for her. Because of the Gardasil vaccine, our daughter will have to be on 3 very strong medications for the rest of her life... and will still only perform at 70% of her potential. I ask you.... was it worth it? If even one child is robbed of their future- is it worth the cost?!