This was submitted by Tracy Wolf, the mother of Alexis who has suffered severe side effects from the Gardasil vaccine, this is her story. We thank Tracy for sharing.
In the spring of 2007, Alexis was a happy, shy, and well-adjusted 13-year-old, young lady. She had been diagnosed with type 1 diabetes in January of 2006, but responded to this in the most positive way. Her doctors were so impressed with how well she dealt with it that they recommended she be put on the insulin pump. Through all of this she worked hard, made the honor roll at school and was educating her fellow students about Type 1 diabetes. Her grandparents wanted her to visit them in Germany, but we were reluctant to do this because of the diabetes. Her doctor felt that she was so responsible and mature compared to other kids her age with Type 1, that she should be allowed to go.
In March of 2007, I took Alexis to see her pediatrician for a wellness check up before her trip to Germany and she received her first Gardasil injection. Alexis asked for it to be given in her leg. We did not notice any side effects at that point. In June, we returned to the doctor’s office right before Alexis left on her trip for the 2nd of 3 injections for Gardasil. Again there were no immediate side effects. A couple weeks later she left for Germany. While she was in Germany most everything went well. Her grandparents said she did act a little strange and out of character for her, but nothing they thought to be too serious.
When Alexis arrived back home from her trip, I noticed that she did not experience jet lag like we all had the last time we all went to Germany. Also, I thought it was odd that she didn’t (or couldn’t) cry when she was told that our 12-year-old dog had passed away while she was gone because she had always been a very sensitive child. As time went on more and more strange behavior, very unlike Alexis, started. She was getting in trouble at school and was unable to concentrate or retain anything she learned. I was taking her to every kind of doctor I could think of, but every test came back normal. Things progressively got worse. At this point her personality had changed 100%. She would go through bits of rage and she would scream at me and call me names and tell me how much she hated our family and me. She said she wanted to be taken to an orphanage and be adopted by another family. At this point doctors and school staff were telling me that Alexis was acting out and testing her boundaries. I argued with all of them. I knew there had to be something medical going on, although doctors and the school were not listening to me. She started having massive panic attacks where her heart would pound so hard you could see her chest moving. Sound and movements bothered her. She would talk about “things looking funny or strange.” she said that peoples faces made her sick to her stomach including people on TV and everyone around her. Often, she would look around as if she didn’t know where she was.
Soon I realized that she was not sleeping at all. She stayed up in her room writing notes all night. The notes were nonsense. She became obsessed with food and would eat anything she could get her hands on while we were asleep. I didn’t realize this at first because she was still being pretty responsible with her diabetes and giving herself the insulin she needed to correct for the food she was eating. One day she stuck her tongue out at me and I noticed a huge bump on the side of her tongue. She had no memory of how the bump got there and it was so big it looked like she had bit off a chunk. Looking back now, I think this is when the seizures started in her sleep.
I took her back to see her endocrinologist and at that point her doctor suggested that we see the in office psychologist thinking that maybe she was having issues being a diabetic. I told her that I really didn’t think it had anything to do with her diabetes, but she wanted us to try. On the second visit with her psychologist, the doctor came to the conclusion that Alexis had been sexually molested while she was in Germany. I was so upset and asked her why she thought this. She said that Alexis talked about seeing nudity in Germany (hello, have you ever been to Europe?) Nudity is everywhere in Germany and I talked to Alexis about this for many hours and on different occasions. Alexis swore to me that nothing like that happened in Germany. I spoke to her grandparents about it and they said that nothing like that happened. Seemed like the only one that believed that really happened was the psychologist (months later she apologized for being wrong, but at that point every doctor after that was subjected to her notes. I was labeled as a “mother in denial”). We were sent to other psychologist and psychiatrist. The only thing they knew what to do was throw anti-psychotic medications at her. Nothing worked, she only got worse. She started throwing up everything she ate, and then couldn’t wait to eat more.
By January 2008, I had taken her in to see her pediatrician again and she was given the 3rd shot in the Gardasil series. Things got much worse after that. Two weeks later we were back at her pediatrician’s office because she had lost five pounds in a week, was throwing up a lot, and not sleeping at all. The doctor sent us to the hospital. Alexis was admitted and spent the next four days getting blood tests, MRIs and a CT scan. Everything came back normal. I was told, once again, that nothing medical was wrong with my daughter. They sent her to Kaseman Behavioral Unit. There she was treated like an animal. They put her on many more anti-psychotic medications, none of which helped her sleep or stopped the vomiting. They told her that if she threw up her food she would not get anything else to eat. They seemed to have no idea how to deal with her diabetes and I had to constantly show them how to deal with it. She was not allowed to be around any of the other children and was told she could only be in her room or walk up and down a short hall. They gave her a bucket for the vomit and on the fourth day two nurses witnessed her eating her vomit from the bucket. After five days of being admitted, they said she was stable and sent Alexis home. That day she was not able to keep any food down and she did not sleep at all that night. The notes were lined up on the banister the next morning when I woke up.
The next day, we were told to take her to a new psychiatrist. We did and the doctor was almost in tears. She had no idea why we were sent to her. She could see right off the bat that she would not be able to help Alexis. She told us that she thought we were getting the run around. We went home and called her pediatrician and begged her to help us. She was reluctant but said she would make some calls and get back to us. We were able to get her into the Children’s Psychiatric Hospital at the University of New Mexico Hospital. This was on a Friday night and their psychiatrist would not be in until Monday so they just tried to focus on getting Alexis to sleep. They gave her high doses of Trazadone and she still didn’t sleep. The next morning I went to see her and she was sitting in a chair in the front room and she was slumped over and drooling and moaning. When I walked in, she slowly raised her head and almost in slow motion said, “Hi mommy.” I got her up and took her to her room and tried to get her to lie down and try to sleep. She started dozing off and I thought Yeah, she is going to sleep! But within five minutes her face clenched as if she were in pain, her eyes twitched, and her mouth filled up with saliva. They noticed right away that Alexis was not going through behavioral issues. When the doctor showed on Monday morning I told her exactly what was happening and while I was telling her, Alexis had another “spell.” The psychiatrist noticed right away that she was most likely having seizures. An EEG was done and they found out she was in fact having seizures that were all concentrated in her frontal lobe, the part of our brain that control our personality. She had been having seizures some time and no one noticed, until just then!
Alexis spent the next six months at UNMH. They did every medical test on her that they could come up with: EEGs, CT scans, MRI’s, 2 spinal taps, muscle biopsy, blood tests were sent out all over the United States, plasmapheresis, IVIG, and then some. Everything came back normal. They determined that she was exposed to a virus and her body made antibodies to attack the virus. However, she had not been sick and had not shown any symptoms of having a virus or even the sniffles. The only virus she had been exposed to was the Gardasil shots. They also determined that she suffered brain damage because of the seizures. She now is testing at a 4th grade level and still to this day is unable to attend school. She has seizure activity every day and night, almost constantly. She is in constant pain and no medication seems to help. Every day more symptoms pop up. She has numbness in her arms and legs, headaches, horrible pain, loss of bladder control (now she has to wear adult diapers), constipation (and when she is able to have a BM they are the size of a grapefruit and plug the toilet every time), vision problems, memory loss, brain fog, chronic fatigue, leg cramps, back pain, dizziness, she repeats the same things over and over again with no memory of having said it a million times, she is unable to retain anything that is said to her or that she sees, rapid heart rate, high blood pressure, and more
In 2009, she spent four days in the local Presbyterian hospital for high heart rate and super high blood pressure. All the tests came back normal. In November, I took her to Barrows Neuro in Phoenix. She spent six days attached to an EEG machine and under went another MRI. All the doctors were baffled and don’t know what to do. Her neurologist is very experienced and has never seen anything like what Alexis is going through.
We are all heart broken that a girl who showed so much promise three years ago, had her life as we knew it taken away. She will never be the same. We are pretty much out of options and our next step is getting an adult neurologist to look over her case to see if she would be a candidate for Vagus Nerve Stimulation or VNS therapy. This would mean having surgery to implant a device in her chest that would send impulses to her nerve endings in the base of her skull to try to stop the seizures. Alexis is scared and does not want to have this done, but I feel we have no other choice because none of the anticonvulsants are working.
Lawyers have refused to include Alexis in their class action lawsuits against Gardasil because her first symptoms were more “behavioral”. We now know that her behavior change was due to seizures. I spend most of my time trying to get Alexis special services that our government provides to people who have traumatic brain injuries, but I was told Alexis is on a waiting list of over 47,000 people in New Mexico and it could take up to 10 years for her to receive any benefits because there is no money to support the people in need. This is such a horrible nightmare that I wish we could all wake up from, but unfortunately this is real, very real.
Thank you for taking the time to read Alexis’ story. Some of these things are very hard to talk about and probably hard to read as well, but we all need to know what is happening to our children and be able to make educated decisions.
Alexis will be featured in the upcoming documentary One More Girl.
To read an update on Alexis’ condition: A Day in the Life of Alexis Wolf: Six Years After Gardasil.
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