By Roxie Fiste
Imagine for a moment having a daughter with everything going for her. She’s bright, outgoing, athletic, kind and compassionate. She excels at everything she tries. No parent could ask for more. All parental bias aside, this was our daughter Brittney before Gardasil.
When Brittney received her first Gardasil injection in June of 2007, we were told that the only real risk involved was the possibility of her fainting shortly after the shot was administered. She didn’t react within the 15-minute window during which the medical staff monitored her, so we thought we had nothing to worry about.
When she passed out the next morning on our family room floor and got up wondering what had happened, Britt chalked it up to the possibility of being dehydrated. This had happened to her once several years before, so she didn’t think much of it. She was so unconcerned she didn’t even mention the incident until over a week later. By this time, she had experienced two other unusual episodes.
The first occurred eight days after her HPV vaccine injection. She had what we now know was a partial seizure. Three days later, her legs gave out while she was at a water park. Hammering pain spread up and down her legs for 15 minutes, then disappeared. As a parent, I was beginning to think the incidents were related, but was not sure how to connect the dots. I began to keep a diary of the unusual things Britt was experiencing.
Sometime late June, or early July, our doctor reassured us that what Brittney was experiencing had nothing to do with Gardasil. We were relieved – at least we could relax on that score.
In late July, we took Britt to Myrtle Beach for a belated 21st birthday celebration. During this week, Brittney began to lose control of her emotions off and on. She would be completely normal, then suddenly explode. She would scream at us that we were trying to upset her, or prevent her from living her life. She had never acted this way. Both my husband and I were shocked at her unprovoked outbursts. We spent the entire vacation walking on eggshells when she was present. It seemed the most innocent remark could set her off. The only thing that seemed to soothe her during that week was going to the ocean and walking the beaches.
In August, she had another ‘episode’ as the doctor called them, this time in the company of several college chums. One of them had a sister who experienced many seizures while growing up. She told Britt’s boyfriend at the time that it looked like Britt was having a partial seizure.
Unfortunately, the boyfriend would not accept this reality and shoved an inhaler in her mouth while she was unconscious and depressed it. Britt came around quickly, choking on the aerosol. She told me about the incident, but since her boyfriend kept telling me it was an asthma attack, I was confused. She also mentioned the incident to her doctor, but nothing was investigated at this point.
In late August 2007, Britt received her second injection of Gardasil – again with no reaction during the 15 minutes of post-vaccination observation. But, within a week she began to have nagging issues with head pressure, like a cap with too tight of a band around her head. Over the next couple of weeks this progressed to the point where she could barely open her mouth because the muscles in her jaw were so tight. She began falling down for no reason. Over the next three weeks, she began to experience blurred and/or double vision. She was extremely sensitive to light of any type. The pressure in her head was so intense, she was passing out daily. She developed a swelling that appeared to be filled with fluid at the base of her skull. Swelling began along her spine as well. With all of the other symptoms severe pain was raging through her body. As soon as her doctor examined the swelling, she was sent straight to the hospital.
Many tests were done, but nothing showed up on any of them. Britt was sent home with a couple of pain tablets. The resident on call felt she had some sort of brain virus and that it would go away in a couple of days.
From this point on, Brittney’s health deteriorated quickly. She couldn’t read anymore because the words seemed to jumble up or run off the pages. She could no longer tolerate light or sound of any kind. Her brain wouldn’t process thoughts normally. We had to speak in whispers when near her or go up to the third floor and speak very softly. Her hearing was so sensitive that she could hear sirens over two miles away and conversations several rooms away. She couldn’t sit in the same room with a television or radio on. Her pain was so bad, she cried all of the time. We bought noise cancelling headphones so she could tolerate trips to the doctor’s office. She had to have wrap around dark glasses – regular sunglasses were not sufficient to protect her from the severe sensitivity to light. Her nervous system became so sensitive she felt every little bump in the road magnified 100 fold while riding in the car.
Her face would droop to one side like it was sliding off her skull. Seizures and stroking migraines began to happen 24/7. Her stomach was upset all the time. She could hardly keep anything down. She lost sensation in her legs, became completely bedridden and simply longed to die.
Over the next three years, Britt was seen by over 60 doctors, including Johns Hopkins Hospital, the Cleveland Clinic and the University of Cincinnati Hospital. None of them could help her. She was so sick to her stomach, she could eat nothing but three ounces of protein drink at a time, sometimes with a little pudding. Not one doctor suggested we have her stomach looked at. They simply dismissed it as being stressed, over-reacting to life, or conversion disorder.
Just to give you an idea of what our new life is like, I will briefly touch on a few events:
- December to May 2008 – Britt was totally bedridden and seemed to be wasting away. I was feeding her with a baby spoon just to keep her alive.
- Spring 2009 – We found an alternative chiropractor who recommended Okra Pepsin3 and Multizyme supplements to help settle the lining of Britt’s gastro-intestinal tract. After several months, Britt was able to eat many organic and natural foods for the first time since her second Gardasil injection. At the same time her physical health declined until she was bed-ridden again.
- 2010, Spring – We started working with an alternative researcher who was willing to try to help with some of Britt’s other issues. He suggested CoQ10, vitamin K Complex, magnesium, calcium and Vitamin D3 supplements. Britt’s sensitivity to light and sound diminished and some of her pain was alleviated. She had a boost of energy for the first time in three years. Her seizure activity nearly disappeared.
- October 2010 to January 2011 – Brittney seemed to improve. The Researcher made more modifications to her diet that seemed to mitigate some of her more severe symptoms.
- January 2011 – She was exposed to a virus. Her immune system could not handle it. She physically crashed, bed-ridden once again.
- March 2011 – Britt’s grandmother sent over what we thought was homemade chicken and dumplings. Brittney gained 60 pounds over the next 24 hours due to citric acid being in the broth. Seizure activity picked up again as well.
- May to June 2011 – Her symptoms calmed down a bit, but she was still struggling with nausea and vomiting. Her abdomen and stomach swelled to the point where she looked like she was six months pregnant.
- 2011 June/July – We finally found a gastroenterologist who was willing to examine Britt’s stomach. She was horrified at what she found – Gastroparesis, a damaged Vagus nerve in Britt’s stomach which prevented normal digestion and emptying of her stomach.
Last summer, 2012, we started taking Britt to another alternative medical doctor. She is now on weekly Basic Vitamin/Mineral IV therapy, plus hormone neutralizing drops, which have made a positive difference – she now has an immune system!
It has been a long haul, but gradually Britt is getting back some semblance of the life she had before Gardasil. After months of treatments, she has been able to handle larger crowds at the theater, at a very busy restaurant, and even a mall full of people. She still has a long way to go, but her strength is growing daily. She is now able to play her favorite music with the speakers up without suffering. She only has to wear sunglasses when she is actually outside. She is walking short distances on her own, despite the lack of feeling in her legs.
Nearly six years ago Gardasil changed our lives forever. I think perhaps Debra Ginsberg came close to explaining our new life when she said:
“Through the blur, I wondered if I was alone or if other parents felt the same way I did – that everything involving our children was painful in some way. The emotions, whether they were joy, sorrow, love or pride, were so deep and sharp that in the end they left you raw, exposed and yes, in pain. The human heart was not designed to beat outside the human body and yet, each child represented just that – a parent’s heart bared, beating forever outside its chest.”
Gardasil may be the right choice for some young girls and women, but for us, it has done little except put us on what seems like a never-ending roller coaster ride. Perhaps someday the ride will end so we can resume our normal lives.