Alexis is now 20 years old. Six years have passed since her first injection of Gardasil. Life has changed drastically since then. After the Gardasil vaccine, Alexis developed encephalopathy, Traumatic Brain Injury (TBI) and a horrible seizure disorder that has yet to be controlled. Read the first part of Alexis’ Gardasil journey here.
Post Gardasil Brain Injury
Alexis’ brain injury post Gardasil is in the frontal lobe. This part of the brain controls so much of who we are. This has left Alexis with the mental capacity of about an 8 year old. She gets very confused easily and struggles with short term and long term memory so she requires constant supervision with frequent redirection on everyday tasks. Her skill level of preparing meals for herself and daily personal hygiene is almost nonexistent. She can no longer take showers due to the danger of having a seizure and falling. I have to help her take a bath and make sure she gets clean. I have to assist in washing her hair to make sure it gets clean. I also have to get her clothes ready for her. She can usually dress herself with little assistance.
Post Gardasil Bowel and Bladder Problems
Since receiving Gardasil, Alexis progressively lost bladder and bowel control. She has to wear adult diapers. Sometimes she will put her fingers inside her anus to try to help herself go #2. Although we have discussed this with all of her doctors and with her, telling her it is very dangerous for her and everyone one else, she cannot control herself. We make her wash her hands OFTEN. I wipe things down with Lysol wipes OFTEN.
Post Gardasil Pain
Alexis has often expressed frustration, depression and suicidal thoughts as to her present life and her future. She can be swift to anger and have great mood swings. She will slam doors, throw things, spit at us and call us a variety of cuss words. She is miserable most of the time. She complains about pain constantly. We have been turned away by three different pain specialist because they review her records and tell me she is “too complex” for them to treat. The only thing she has to help her with the pain is medical marijuana in the form of tinctures and vapors. When her head hurts really badly she will hit her forehead with the palm of her hand and say “brain get better, brain get better…” She also complains about all over body aches, sharp pains in her chest, joint and muscle pain. She will tell us that everything looks scary, strange and unusual even herself. The best description she was able to give us was that it looked like the walls were melting and people looked like cartoons. I had to take her out of high school for the above reasons. Her teachers were not very patient with her and they would push her buttons so one day she hit one of her teachers in the arm. The school called the police so I took her out of school.
Post Gardasil Seizures
Alexis’ speech patterns can often digress to repetitive statements over and over. This occurs without the knowledge that she is engaged in that behavior. Her motivation level is very low due to her brain injury. Getting her to do anything is quite the struggle. Almost every task is labored and takes lots of patience from the person helping her. Often at times she will flat out refuse to move and begs to take a nap. She naps off and on all day every day. We really do not know how long she sleeps at night but we think it is no longer than two hours at a time. The seizures happen all the time and they wake her up while she is sleeping. She is usually unable to fall back to sleep, so she wanders the house and searches for food. She has horrible impulse control and she is not able to tell if she is full or not. We have to keep the fridge and the pantry locked up at all times so she does not eat herself into a coma. If she eats a full meal and then has a seizure she will forget that she has just eaten and she begs for food saying that she is starving. We also lock up her medications because she will forget that she has taken them and try to take more even though I store them in those daily dose medicine boxes. She can have many, many seizures in a day. She takes anti-seizure meds and she also has a device implanted in her chest called a VNS therapy. It is supposed to reduce or stop her seizures but so far we have not really noticed a difference. She has had it for 3 years and soon she will be due for a battery replacement that will require another surgery. The battery should have lasted 5-10 years but the doctors have made so many adjustments on the therapy levels that the battery only has a few months left of power.
Alexis having a Seizure in 2010
Six Years and Counting
In the past six years we have had to deal with many people who do not understand the side-effects of the Gardasil vaccine. We have been accused of horrible things. We have had to endure being investigated by Child Protective Services, Adult Protective Services, police, detectives and more. Family, friends and neighbors have turned their heads and left us behind. Alexis’ father has not spoken to her in two years and all the help he had once offered is nonexistent. The government services that should support Alexis and her brain injury are bogged down so she is on a waiting list of over 40,000 people. I was told she MIGHT get services in 2019 when her name comes up next on the list. The way things have been going it is possible that all money and services may dry up and go away before her name even comes up.
Alexis’ inability to live independently will require lifelong care and assistance. I worry all the time about what will happen to her when I am no longer able to care for her. Every day new challenges arise so I can never put down my guard. I have been told by at least two doctors that I should look into some sort of institutional assisted living facility, but I cannot wrap my mind around that just yet. Life is quite different than it was six years ago, before Gardasil. Six years ago Alexis was a normal 14 year old. Starting to wear make-up and get interested in boys…working hard in school and enjoying honor roll. She had her whole life ahead of her and now she spends every day in a living hell filled with pain and misery, begging to be better, begging everyone to pray for her.
Six years ago, before Gardasil, life was very different.
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