Alexis
- on 02.24.10
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In March of 2007 I took Alexis to see her Pediatrician for a well check up before her trip to Germany. That is when Alexis recieved her first Gardisil injection. Alexis asked for it to be given in her leg because she prefered shots in her leg. We did not notice any side effects at that point….Because gardisil is a 3 part injection we had to return to the doctors office right before Alexis left on her trip, for the 2nd injection in June of 2007. 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 jett lag like we all had the last 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 yr old dog had passed away while she was gone. She had always been a very sensitive child. As time went on more and more strange behavior very unlike Alexis was happening. She was getting in trouble at school and was unable to concentrate or retain anything she learned in school. I was taking her to every kind of doctor I could think of. Every test that was done came back normal. Things progressivly 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 me and our family. She said she wanted to be taken to an orphanage and be addopted by another family. At this point doctors and school staff were telling me that Alexis was acting out and testing her boundries. 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 would have what looked like huge panic attacks…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…people on TV and everyone around her….she would look around as if she didn’t know where she was.
Soon I realized that she was not sleeping AT ALL. She would be in her room all night writing notes. Nonsense notes that never really made sense. She became obessed 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. 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 BIG almost like she had almost bit off a chunk. Looking back now, I think this is when the seizures started in her sleep.
I had taken her back to see her Endocrinoligist and at that point her doctor suggested that we see the in office Psycologist 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 2nd visit with (Cindy Peterson) the Psycologist…she 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 Alexis was a teenager!! 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 it was Cindy Peterson (months later she apologized for being “wrong”!!! but at that point every doctor after Cindy Peterson was subjected to her notes and I was labeled as a “mother in denile”). Cindy sent us to see other Psycologist and Psychiatrists. The only thing they knew what to do was throw antipsychotic 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 gardisil series. Things got much worse. Two weeks later we were back at her Pediatricians office…she had lost 5 lbs in a week and was throwing up a lot and was not sleeping AT ALL. The doctor sent us to Presbyterian hospital. Alexis was admitted in and spent the next 4 days getting blood tests, an MRI 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 kinds of antipshchotic medications, none of which helped her sleep or stoped 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 tell them and show them how to deal with it. She was not allowed to be around any of the other children there and was told she could only be in her room or walk up and down a short hall. Since they would not give her any food if she vomited they gave her a bucket. On the 4th day 2 nurses witnessed her eating her vomit from the bucket. After 5 day of being there 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 that and I tell ya, that lady 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 arround. 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 Childrens Psychaiatric Hospital at UNMH. This was on a Friday night so since their Psychiatrist would not be in until Monday they 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 lay down and try to sleep. She started dozing off and I thought “YEA, she is going to sleep!”. Within 5 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. On Monday morning when the doctor showed up I was telling her exactly what was happening and while I was telling her Alexis had another “spell”. The psychiatrist noticed right away that she might be 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 brains that control our personality!!! She had been having seizures for so long and no one noticed, until just then!!!
Alexis spent the next 6 months at UNMH and Carie Tingley. They did every medical test on her that they could come up with. EEGs, CT scans, MRI’s, 2 spinal taps, muscle biopsy, tons of blood tests sent out all over the United States, Plasma Phresis, IVIG…every test you can imagine 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, 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 shot. They also determined that she suffered brain damage because of the seizures. She now is testing at about a 4th grade level and still to this day is unable to attend school. She has seizure activity every day and night, almost constant. 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, cronic fatigue, leg cramps, back pain, dizzyness, 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…….
In 2009 she spent 4 days in Presbyterian hospital for high heart rate and super high blood pressure. All test came back normal….In November I took her to Barrows Neuro in Phoenix. She spent 6 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 Alexis is going through…..
We are all heart broken that a girl that showed so much promise 3 years ago had her life as we knew it taken away. She will never be the same. We are pretty much out of options…our next step is getting an adult Neurologist to look over her case and see if she would be a canidate for 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 before they get big. 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 law suits because her first symptoms were more “behavioral” in the begining but we now know that was due to seizures!!!! I spend so much time these days trying to get Alexis special services that our government provides to people who have tramatic brain injuries. I was told Alexis is on a waiting list of over 47,000 people here in New Mexico and it could take up to 10 years for her to receive any benifits (that she desprately needs NOW) because there is no money in the fund to support the people in need. This is such a horrible nightmare that I wish we could all wake up from!! Unforunately 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.
Kristin Clulow

