CHICOPEE, Massachusetts - Crystal and Wayne Butler are going through tough times with their 13-year-old daughter and, unfortunately, it is not because of the normal teenage phase that parents of teenagers usually have to endure. After one round of the Human papillomavirus or HPV vaccine, their daughter Skylee has been experiencing neurological problems and has been struggling even more than her mom and dad.
Crystal's best friend Kate wrote:
"It's horrible what the doctors don't tell you. They make it seem like this shot will prevent HPV which may lead to cancer. But what it really might do, is prevent a few strains of it. They aren't telling anyone how many girls and boys have had unexplainable severe sicknesses and issues since receiving the vaccine. It's horrible.
After the fact, one of the doctors told her she wouldn't even give it to her daughter! There hasn't been enough research done and there are so many kids falling ill to these awful, awful symptoms to what?"
Last December, Crystal wrote:
"I worry about what is next since Skylee gets new symptoms every couple of weeks. She has pain down her whole spine from the top of her neck to the bottom of her tailbone. Her arms, legs, and back are sore and achy.
She gets headaches, is dizzy, and is very tired and weak. She has pressure in her head and numerous vision problems such as the feeling of her eyes needing to roll into the back of her head. She has difficulty reading and writing due to not being able to focus because it causes pain behind her eyes and on the side of her head. The ceiling tiles in school look green instead of white at times. She has rapid eye movement, dry eyes, blurred vision, and words or letters don't make sense to her at times.
She's had x-rays, an MRI, an EKG, and blood-work taken. She's been tested for Lyme, lupus and mono along with other routine exams. Everything comes back negative except for a vitamin D deficiency. She has been to a neurologist, an orthopedist, optometrist, and her regular pediatrician. She also experiences chest pain, shortness of breath and shakiness."
Since the vaccination last August, Skylee has also been to a spine and sport facility, two neurologists, a rheumatologist who said that he thinks that she has chronic fatigue syndrome, a neurosurgeon, and an urologist. She has been to the emergency room twice and attended physical therapy once a week for a month but, because Skylee's symptoms kept increasing, the physical therapist refused to continue treatment fearing that more damage would be done.
Crystal says, "I am trying to absorb everything that I can. It is so hard. We keep getting bounced around from doctor to doctor with no answers and all tests come back negative. It is so frustrating."
Skylee once became unconscious and unresponsive at the ER where she was put in a wheelchair. Her vital signs were normal. When she regained consciousness, she said that she heard everything but felt too weak to do anything.
Three weeks later, at school, her teacher noticed that she had a blank stare. When she asked Skylee if she was alright, Skylee didn't respond. The teacher approached her and Skylee said that she had to force herself to talk. She told the teacher that she didn't think that she could not move because her legs were tingling due to the "pins and needles" effect in both her arms and legs. The teacher called the nurse who brought Skylee to the clinic via wheelchair because Skylee was unable to stand or walk. Within 15 minutes, Skylee was back to normal .
School days no longer normal
Skylee has missed over 30 days of school and when she is there, it is difficult because she cannot concentrate due to being constantly in pain. Crystal says, "She has no idea what is wrong with her and she is an honor roll student who can't read or write and has to have other students do these things for her."
Skylee has been unable to read or write since the first week of December due to the vision problems. She scored perfect on her eye exam, however, and her eye doctor believes that none of her vision problems, headaches, or head pressure are because of her eyes. When she reads, she gets a sharp stabbing pain in her temples and experiences severe head pressure. Words look jumbled and don't make sense to her.
Skylee has had an MRI of her entire spine and the results were normal. She has had two EEGs where doctors found some seizure-like activity. The results were the same: sharp brain waves that look like seizure activity. One doctor, however, does not feel it is seizures because the episodes do not seem like seizures. The same doctor suggested that it may be a chronic pain processing disorder.
Crystal says, "I get nervous because the other mothers (of those injured by the HPV vaccine) tell me not to let her sleep alone due to seizures in their child's sleep. They say don't let her shower alone and stay in the bathroom with her just in case she passes out."
A daily struggle
Crystal has been trying to find any group associated with this vaccine to find out any information that she can. Crystal and Wayne have also had to change their lifestyle.
"I miss a lot of work and I had to cut back time from work just in case Skylee isn't feeling well. It is very hard to have to write all of this. I look at her and she seems fine to me. I then take a look at all of the things I am writing and realize all of the pain that my poor child is in. That is the hardest part about all of this.
She looks fine on the outside but all the pain she is in is just awful. Most people don't realize there is anything wrong with her. No one realizes that she sleeps all of the time. She comes home after school and will sometimes nap from 3 pm to 8 pm and then go back to bed at 10 pm. That is not what a normal or healthy teenager does.
Just going to the store makes her tired. At the mall she has to take breaks often because she gets tired. She gets very dizzy and needs to sit a lot. When she dances, she suffers with severe pain throughout her whole body afterwards. Like any normal teenager, she used to be glued to her laptop. Now, I can't tell you when the last time she used it was."
Hope for the future for all HPV vaccine victims
Crystal is worried about Skylee's future. She says that Skylee's complete recovery, "doesn't look too promising like many of the SaneVax stories I read about the injured. There are girls with new symptoms still showing up seven years after being vaccinated."
Both Crystal and Wayne will not give up hope, however. Crystal wrote, "I have to keep positive and keep fighting for her. I try to keep her away from the stories about the other girls because I don't want her to worry about what could happen. It is hard because sometimes I want her to know more so that if she does experience anything, she will be prepared."
Crystal and Wayne hope that that if they share's their familiy's struggle other families may not have to suffer the way theirs is. Crystal says, "We wouldn't wish this on anyone. It is a daily struggle for Skylee. It shouldn't be but unfortunately it is. You can't sue the vaccine makers directly but you can put a claim with the vaccine injury court. It's very hard because doctors will not say the side effects are caused from the vaccine."
Crystal has put together a list of all of Skylee's symptoms for readers and added, "I hope that we can help others so they will not get this poison and have to suffer the way we do."
Skylee's symptoms after receiving the HPV vaccine include:
Back pain (from the top of the neck to the bottom of the tailbone)
Soreness and an achy back, arms and legs
Her fingers, toes, ankles and neck constantly crack
Weakness (walking the hallway in school takes a lot of energy for her)
Seeing different colors and spots
Her eyes feel like they need to roll into the back of her head
Bouts of energy
Inabilty to concentrate
Shortness of breath
The feeling of having bruises with none visible
Glands feel swollen but don't appear to be
Light sensitivity - She has had to wear sunglasses inside and gets teased at school by both students and staff. She has even had to sit in a closet during class because even with the sunglasses it was still to bright for her.
Abdominal pains (like someone is stabbing her)
Stabbing pains in her head
Sweats (like hot flashes) to the point where she feels the need to remove almost all her clothing
Pains in her legs
Sharp pains in hand and wrist(right)
The need to constantly move her eyes
She has a hard time focusing. She describes the feeling similiar to a camera trying to focus.
Pain at the base of the skull
Feeling unbalanced while sitting and standing
Pains inside her ears