Age: 0.53
Sex: M
Vaccine: DTAP, HIBV
Symptoms: Nervous system disorder, Nystagmus, Optic atrophy, Screaming, Visual disturbance
Clinical narrative: My family has lost eight years that could never be given back to us ever. We lost these years because while my son was suffering we could not take him out in public without him freaking out and causing a scene that drew attention to us as if we were an outcast. I have ruined my work history for taking off so many days for court from his behavior in public. I missed many days due to school meetings trying to find a placement for him, endless arguments to get adequate education for his needs. While disability act was begging to get involved, because he was being denied to entering into deaf blind schools, doctors kept telling us he could see and hear fine. Numerous doctor's appointments all contributed to my attendance record, only to hear the same thing that he was fine and nothing was wrong, he could hear and see just fine. Not to mention repeatedly moving from state to state searching for help to tell us what was wrong with him. His big brother had lost what might have been the best years of his life, from age 12 to age 20, he had fell behind in school due to court (1 year long trial, unnecessary), he had to quit school to watch his brother so I could work. Sitters wanted 400 to 500 dollars a week (I could not afford). He had to make new friends almost every year because we had to move to find help to diagnose his brother and to find a school that would educate him. This all led him into a state of depression and suicidal, once he had heard his brother was going to die. I repeatedly asked the doctors if he had nerve damage that was related to his shots, or because I had too many ultrasound examinations during my pregnancy. After 3 years of asking, I assumed they might be right. I have always thought that the doctors were not telling me everything or were hiding something from me. The first pediatric neurologist I took my son to said that his nerves that connect his hearing and eyesight to his brain have been damage or not developed right. That doctor refused to put that in writing and later denied even saying it altogether. Pediatric Ophthalmologist and Pediatric Audiologist kept telling me for 6 years that nothing was wrong with his eyesight and hearing. That he could hear and see fine, despite the fact that he was running into walls and things, and he was even flat out saying that he could not see. I was repeatedly told he was hyper, an active little boy and I would just have to deal with it. No tests or blood test were done until he was age 4, only 2 MRI's were done. The two doctors that had MRI tests done said that the MRI was normal and that there was nothing they could do for us. I contacted an attorney who said that it would be too hard and take too long to file for malpractice's. I called a scientist who asked me to have several tests done and get back to him with the records of the results. So, I told my medical doctor he asked if I had his phone number or a way to get in contact with him. When I gave him the scientists information, he kept it and said that he lost it, and that the scientist wouldn't be able to help. I couldn't contact the scientist again. I was hoping that someone could give him some vitamins or shock his nerves to stimulate them. I then contacted an acupuncture doctor who said that he wouldn't be able to do anything for us until he was age 12. I have been refused records unless I had a court order, told his records were damaged in a flood, told his records were thrown out, and some records were even taken from me and they lied to me saying that they didn't take any when half of them were missing (total of about 200 pages). When ever he had doctors appointments they were scheduled several months apart 3 to 6 months. A hospital took over one year to tell me that my son didn't have a progressive degenerative neurological disorder from one skin biopsy and refused to see him again. I have been told he may or could have multiple symptoms including spasmus nutans, nystagmus, observed optic atrophy, behavior with poor vision, extreme night blindness, esotropia, observed retinal dystrophic changes, ushers, Mohr-Tranebjaerg, AD/HD, ODD, and mental retardation. Yet, all of his blood tests were normal, chromosome tests were normal, physical appearance is normal, he has no birth defects, he has no family history of anything (excellent family health history), mentally he is smart and capable of learning. Everything was normal with his behavior until he was about 7 months and then our nightmare began. Three neurologist refused to give an evaluation on him, one gave him Rispadal medication that almost killed him. When he was 7 years old, I was told that he was legally deaf and legally blind, and that he would lose both his hearing and eyesight, that nothing could be done to stop it from happening. I was told that whatever he has it is degenerative, that it would get worse and may even cause death. He was placed into a deaf blind school. Every individual education plan that was ever made for him stated that he was functioning at a mild to moderate level of mental retardation. My son is illiterate because he only had one year of school that took into consideration his hearing and eyesight problems out of 8 years, he is not mentally challenged. I have always known that something was not right and that 35 to 45 doctors who couldn't agree or figure out what was wrong with him were not telling me the whole truth. I went to another neurologist and an acupuncture doctor. The neurologist said that she was guessing but that he might have Mitochondria disease and is currently treating him with vitamins. He takes Levocanitine and Co enzyme Q 10, 3 times a day and B complex once a day. He has stopped screaming at night, his shaking at night has went down to only 1 to 2 times each night. She stated that he was not having seizures as the other doctor thought. The acupuncture doctor who looked over all of his records and told me that he had an allergic reaction to his vaccine that damaged the coating on his nerves. He informed me that he could rejuvenate his cells and get all of his hearing and eyesight back. I was told to contact you to let you know what has happened to my son. His blood is still being tested overseas for Mohr-Tranebjaerg and I am waiting on a report from a doctor that states that he does not have Ushers disease. There is no doubt in my mind that he had an allergic reaction to his vaccination and that all of the doctors that knew this lied to me and did everything they could do to cover it up for 5 years. I am sure that the attorneys I contacted, that refused to file a case on his behalf, along with all the doctors he had seen in 4 years knew that the statue of limitations for this crime was 3 years. It is a shame that these doctors would be willing to watch my son die in order to avoid admitting that they made a mistake, by trying to do something right that turned out to be something very wrong for my son. The doctors can try to play God all they want to but nothing can change what is God given to us. My son was not meant to live his life suffering like this. I have spent 8 years trying to keep all his records and completing my research to find out what really was going on with my son and why I was given a run around by all these doctors, at the same time trying to provide a healthy family setting for my sons to grow up in, so I am providing you with a copy of  his records so you can at least show some decency and take a few hours out of your life to fill out your own forms. I have more important things to do with my time, like publicizing what has been done to us, so it doesn't happen again or to at least inform the public of what could happen to them, if it isn't happening already and they don't know about it.