Narcolepsy and Cataplexy
By Mom from Florida
My daughter hates it when I speak about the new medical conditions she has been suffering through since being vaccinated with Gardasil so I have chosen to remain anonymous to help keep the peace. I chose to give her this vaccine in an effort to help protect her. I struggle with that decision every day.
She had just finished a great soccer season. She had turned 13 already and like always time had slipped away from us. I was a month or 2 late on getting her annual check-up. Her pediatrician had been discussing the HPV vaccine, Gardasil, with me since she turned 11 years old. I put it off and put it off and then finally agreed to move forward with the injections we thought would protect her from cervical cancer.
Within a month or so, I started to notice changes with her. I even mentioned to people that all she ever wants to eat was junk food. It was like a switch was flipped in her body. She was an easy kid that loved food and always ate all sorts of foods including her vegetables. She traded in all of her good eating habits and frantically searched for junk food in the cabinets. I caught her eating leftover holiday candy that was months old and never thrown away; and boxes of cake mix by the spoonful and never mixing it into a batter or baking it. She would eat the whole box of dry mix…… in one sitting! She would take cocoa powder and mix it with sugar and melt it into syrup and eat it by the spoonful.
She suddenly had a new love for pasta. She wanted it day and night. Bizarre food behaviors that I had never seen exhibited before became the norm. She was always stick figure skinny and I would mention to her you better watch what you are doing all that is going to catch up with you.
While this was going on I also noticed that she would sit around the house a lot. She was always active in sports or horseback riding and now she would just sit on the couch. She never walked around the house – she always used to run through the hallways. This all stopped.
She also became emotionally hypersensitive, crying over the most minor of things. She would burst into tears if she didn’t like what I was making for dinner or couldn’t find something to wear. I mentioned this to people but just chalked it up to changing hormones and her now being a teenager. This behavior went on for a while.
She then developed insomnia. She kept saying, “Mom, I’m not sleeping at night.”
She would come home from school and take naps. I would let her nap because I knew she wasn’t sleeping at night. I then started to exercise with her thinking that maybe her body is just not tired and that’s why she couldn’t sleep. It didn’t help. She could barely muster up the energy to walk around
After about 4-6 weeks of trying different relaxation techniques to help her get some sleep, and with things getting worse, I took her to the pediatrician. It had been almost a year since her prior visit. She had gained 30 pounds. I knew she had put on weight, but she wore it well and I never imagined it to be that amount. Even the doctor questioned how could this be right?
He recommended she take some vitamin melatonin to help her sleep and sent her in for her 2nd dose of Gardasil. She let out a blood curdling scream when they jabbed her – something she had never done before. She had always been one of the toughest kids I knew. Typically, she would just suck it up.
After about a week with no success with the melatonin, I would catch her falling asleep constantly. She would take a 2 hour nap after school and would then go to bed at 9pm. She would start to tell me a story and her eyes would start to close and her words would become garbled. Her speech became so distorted it was like she was drunk or on heavy drugs. It would last for about a minute and would then just go away.
I wondered if she was doing drugs. A friend of mine said she’s not the type, there’s something else going on.
She developed a buckling in one of her knees and with her lack of activity I told her she probably just needed some strengthening exercises in her knee.
While sitting at family dinner one night she lifted her glass up and her hand started to tremble almost dropping the glass. She then got up and started walking to her room, her knees gave out and she grabbed onto the only thing she could, the wall. With her arms planted on the wall above her head she slid down the wall and collapsed on the floor. She laid there speechless for about a minute and then said she was so tired. I helped her to bed.
She slept until the next morning and got up and said she was still so tired. I let her stay home from school and sleep most of the day away thankful that she was finally getting some rest and maybe she could get over the insomnia.
The following morning she had another garbled speech eyes closing episode. I packed her up and took her to Joe DiMaggio Children’s Hospital emergency room in Hollywood, FL. I described these episodes as almost seizure like. The ER doctor went through her history and got to the question of recent vaccines.
I snapped my finger and pointed at the doctor and screamed out GARDASIL!
The doctor looked at me and said, “I guarantee that has something to do with what’s going on.”
She spent 7 days in the hospital undergoing every test imaginable. They even wanted to remove her braces because they were causing interference on some of the tests. She kept having trouble with her knees buckling while in the hospital and having episodes of eyes closing and garbled speech. The episodes were getting worse.
She wouldn’t let me video tape her and the doctors were never around to witness this. By day 5, there was talk of a discharge without a diagnosis. The doctors recommended my daughter stay home until some test results came back. I was told she would be discharged with a safety plan that included a walker and wearing a bike helmet around the house so she wouldn’t hit her head if she collapsed.
They sent in a 3rd neurologist. I told the doctor to sit here for an hour and WATCH my daughter. I said,
“If you discharge her, I will drive straight to Miami children’s hospital. I don’t care if they start repeating tests, she’s not going home! Especially with that ridiculous safety plan!”
Shortly after, my daughter had a full blown seizure-like episode in front of the doctor. The doctor questioned her a little more about her symptoms and diagnosed her with Narcolepsy with Cataplexy.
Narcolepsy is an autoimmune disease that causes your sleep/wake cycle to be disrupted. Cataplexy is a common symptom of Narcolepsy which causes loss of muscle tone resulting in her collapsing. Cataplexy also causes hypersensitivity to emotion which explained why she was previously bursting into tears over nothing.
The doctor started to discuss emotion induced cataplexy and my daughter stated when she laughs or gets upset she gets weak and her body gives out. She ordered a spinal tap and a blood test to confirm the diagnosis.
I asked the doctor if she thought this was related to Gardasil and she answered, “Absolutely.”
She was given immunoglobulin therapy (IVIG) as this has been known to help with auto-immune disorders and discharged on day 7.
People that I knew thought because she was discharged, then she must be better. The therapy did nothing. She was no better than the day I took her to the hospital. As a matter of fact, she was worse. She continued to collapse at home. I likened it to anaphylactic shock. After she would collapse and while lying on the ground unable to move, she would beg me to take her back to the hospital. I called the doctors and was told to give it a week. Nothing changed.
She had missed weeks of school at this point. I returned her to the neuro. As there is not a specific medicine for narcolepsy she was placed on ADHD medicine for performance enhancement during the day, and sleep medicine at night. Her insomnia still remains to this day.
The doctor had ruled out any incidence of contracting the strep virus or trauma with my daughter and started to explain how narcolepsy is induced. It takes a genetic predisposition and an environmental component to induce the disease. A hormone in her body has been depleted. It’s called orexin, it’s also known as hypocretin. Currently there is no medicinal method to restore this hormone in the body.
The spinal tap ultimately revealed there was a genetic disposition to the disease in her body and the blood test led to 100% confirmation of the disease. Many of my family members had never heard of the disease let alone knew any family members that ever had it.
The doctors point to the vaccine as the environmental factor triggering her conditions as all other sources were ruled out. They said to me the vaccine has been known to cause autoimmune disorders. Because she was having insomnia before the 2nd dose and wasn’t being treated by the doctors before the 2nd dose, they will only put in writing that her disease was enhanced by the 2nd dose of the vaccine.
But, they acknowledge that all her symptoms with exception of insomnia were brought to the forefront after the 2nd dose. Enhanced adverse reactions after the second and third injections seem to be a common occurrence with HPV vaccines and this is exactly what transpired with my daughter.
She lives her life on a vicious cycle of meds to keep her awake and meds to make her go to sleep. Struggling all the while as even with meds she is about 75% of the kid she once.
I have tried vitamins, holistic care, & chiropractic care, and nothing other than prescription meds have helped this child. Without medicine her symptoms have become debilitating. She can stay awake for only 2-3 hours a day and those aren’t quality hours. She can barely walk as she is exhausted or the cataplexy sets in and she collapses. Still to this day she has to nap during the day and when she laughs or gets mad her body gives out on her. She has learned to recognize how this feels though and catches herself before she collapses. She still craves junk food as we all do when we are exhausted. We reach for carbs in an effort to boost up the energy level.
Prior to this diagnosis she was a strong healthy kid with the exception of being born with a congenital cataract and sadly losing vision in one of her eyes. I feel as if lightning has now struck this poor child twice as she now struggles with life and with school as this is a very hard disease to manage.
One decision has changed her life. Hopefully not forever as Narcolepsy has ongoing research and I am hopeful that a cure will be in the works very soon. The doctors think 5-10 years.
Currently she is struggling in school and almost all of her activities that she used to be actively involved in have ceased.
Until there is a remedy I will continue to try and “fix her” as her life has been stolen away from her.