Elizabeth BOur daughter, Elizabeth, is now 10 years old. At first sight, she appears to be a normal, happy 10 year old. But after watching for a while, one can tell that their is something terribly wrong. Elizabeth has a seizure disorder. Lennox Gastaut has been suggested by one neurologist, but denied by another. Elizabeth has multiple seizure types (partial complex sometimes secondarily generalized, myoclonic, and atonic seizures) and many autistic like characteristics, including many behavior problems. Her functioning ranges from 8 to 36 months depending on the skill.
When Elizabeth had her first DPT/OPV vaccination at age 2 months, she was a smiling, happy baby. I can still remember the extreme high pitch scream after the vaccination that lasted for several hours. She sounded like a wounded animal, crying out for help. She developed a low grade temperature and some redness at the sight. I discussed this with her pediatrician, who informed me that I was an overly concerned Mom because I was older and this was my first child and Elizabeth had had a normal reaction. Her second vaccination was at age 4 ½ months. At this time, Elizabeth was sitting, she was passing things from hand to hand, and getting around by rolling. The afternoon of her second vaccination, she had her first seizure, although I did not know what it was at that time. She was lying on the floor in front of me. I can still see her little left leg shaking for several seconds. I called the pediatrician, who told me this was normal, the sign of an immature nervous system. "Stop worrying!" the office told me. Over the next 2-3 weeks I continued to see these spells, accompanied by a decline in function. One day she fell over in her high chair, unable to sit any longer. She could no longer use her left hand. We thought she had shown a hand preference, not knowing that this did not develop for many months later. One Saturday night, I was holding her hand while it started shaking. She had a temperature and I couldnt stop the shaking. I KNEW that no matter what the pediatrician was telling me, something was very wrong. We took Elizabeth to the emergency room. They told us to stop worrying, she had a little virus. When it got worse that evening, I took her to another hospital, who said she may have had a focal seizure, call the pediatrician on Monday, "Go home and stop worrying!" We got home and that afternoon, our beautiful baby girl had a generalized seizure and stopped breathing. Life has never been the same. For the next month she was hospitalized in two different ICUs. Her pediatrician told us, she was too complicated for him to treat. A resident told me "Vaccinations are necessary Sometimes one cow has to be sacrificed for the goodness of the herd.: I will never forget that moment. I could have slapped that resident. Elizabeth was injured by her DPT/OPV vaccination on August 2, 1986. We now also know that Elizabeth has an immune deficiency known as hypogammaglogulinemia. This is a primary immune deficiency where the body is incapable of producing B cell antibodies against disease.
In 1986, Congress passed the National Childhood Vaccine Injury Act, Public Law 99-660. There are a wide range of disorders thought to be caused or aggravated by vaccinations. Exceptional Parent magazine September 1989 issues contains a copy of the table. This table has been significantly altered in the last several years to make it more difficult to qualify.
Government information is available at::
The current table is located at:
Even though the act was passed in 1986, the effective date for the act in October 1, 1988. That date established a 2 year "statute of limitations" for filing claims. Any vaccination before October 1, 1988, had to be filed by September 30, 1990. This date was extended several times because of the number of claims filed and the limited general knowledge of the Act, but the final date for filing expired on January 31, 1991. For post act cases, those occurring after October 1, 1988, "the effects must have continued for at least 6 months after vaccine administration and the claim must be filed within 36 months after the first symptom appeared. For post-1988 claims involving a death, the claim must be filed within 24 months of the death and within 48 months after the onset of the vaccine-related injury from which the death occurred." This is a quotation from the governments web site for post act cases.
We filed our petition in 1990. Remember, this is not a lawsuit. The process in NOT INTENDED to be litigious, although when you are going through it, it certainly feels that way. The petition consists of an application along with all of the childs medical records for review by the doctors hired by the court. The process is intended for a parent to be able to go through without an attorney. Having been there, I would say it is very important to have an attorney. In Elizabeths case, her medical records consisted of over 1000 pages. Along with her records, one of her physicians signed an affidavit saying that he believed "with medical certainty" that Elizabeth was injured by the vaccine. There are 2 phases to the Vaccine Act process. The first phase is eligibility. The second phase is settlement. Elizabeth was ruled eligible in December of 1993. For us, the first phase was relatively painless, there was not even a hearing. One day, we got a letter, with a court order notifying us that Elizabeth was eligible. The second phase, was, awful.
The settlement process is very complicated. The act only covers those expenses that are related to the vaccination. Also, expenses are calculated after insurance offset. That is, insurance must pay first; the government will pay for after insurance expense. The first thing one has to do is find a life care planner, who will visit your child, and review their needs for the rest of their life. At the same time, the government hires a life care planner who decides their definition of your childs needs. One problem we had, being a pre-act case, was that the name of the game was postponement. Since, for pre-act children, payment starts at date of settlement, not at date of injury. The government can stall till the cows come home and get away with it. Our first attorney, a very nice local guy, could not believe that anyone could act in bad faith. So, this went on for several years. (Also, the longer it goes on, the more they are paid). The government also tends to take advantage of "one case" attorneys. For pre-act cases, there is a 30,000 limit on expenses and fees for attorneys, expert witnesses, life care planners, pain and suffering, and loss of wages. This may seem like a lot, but when something drags on for years, that is not a lot a year. The government attorneys would also set up meetings, via telephone, than fail to show, but you get charged by the attorney. Reasons for excuses and postponements were vacations, marriages, death of grandparents, new evidence, etc. It goes on and on. One Catch-22 is that the longer things go on, the more information is relevant concerning the child (medical records, etc.) When these records are supplied as requested, this is another reason for postponement. For post act cases, the limit is 250,000 and payment goes back to injury, not settlement. There is a theoretical 90-120 day limit on hearing cases, but the only thing you can do if they dont make the limit, is withdraw your petition. So, you wait, and wait, and wait.
In April of 1995, we were paid the first visit by the government attorneys. Three people came (probably first class) to Oklahoma: the attorney in charge of our case, the home modification expert, and the settlement guy. The purpose of the visit, basically, is to intimidate. At this time, the government finally revealed their version of the life care plan. We were told that if we did not settle, they would make sure it dragged on for a minimum of several years. They would make sure we got a worse judge. Our main concern, was for Elizabeths care after she turned 22 or we died. My husband and I are both only children. Elizabeth is also. After we are gone, there will be no one to help care for her. Their offer a private institution (which I visited), with dirty brick rooms, barbed wire, similar to a bad nursing home in your worst nightmare. By the way, institutions for developmentally disabled people have been ruled illegal in the State of Oklahoma by the Supreme Court in what is known as the Hissom case. Developmentally disabled people are to be served IN THE COMMUNITY. What we wanted was a supported living arrangement, similar to a group home, but with a higher staff to client ratio.
In July of 1995, the government decided another visit was necessary, by their life care planner. The life care planner came one day early, and without my knowledge, spoke with all of Elizabeths doctors. I had to pay for these visits. The director of the nursing agency providing information to us told us that she was told by them that she would never get another federal contract if they followed Oklahoma nursing law in requiring at least an LPN to administer medications. Elizabeths neurologist, who had previously planned on testifying for us, became a witness for the government. According to his receptionist/nurse "they are the ones paying him a lot of money." The next day, the life care planner was to be at our house at 7 AM to watch Elizabeth prepare for summer school. We waited, she never came. Elizabeth boarded the suburban school bus and proceeded to school. A half hour later, she showed up. We found out from the driver, that she had waited at the end of our street, flagged down the bus and attempted to board. The school said Elizabeth was not on the bus to protect her. She wanted to observe Elizabeth without us present. She was quite angry when she found out that Elizabeth was, in fact, on that bus. Our attorney at that time, felt that we did not need to be present. However, it is very important that you be present any time your child is observed by the government. You or your attorney should also be present any time a doctor is questioned. Later, at the hearing, these people distort what is said. If you or your attorney were not there, there is no way to protect against these distortions.
CHANGE OF ATTORNEYS:
At this point, we realized that the government was just playing our attorney for a fool. Through Kathi Williams, the Director of NVIC, we obtained a new attorney in Washington, DC. His name is Cliff Shoemaker, his number is 1-800-593-6721, or 703-281-6395. His e-mail is: firstname.lastname@example.org. I can heartily recommend Cliff to anyone seeking help. First, he is in DC so he has local access to these attorneys and Special Masters in charge of the Act. Second he specializes in Vaccine Law, so he is very familiar with the process.
Things got so bad that because of stall tactics, litigious actions by the government attorneys, and questionable tactics used by these attorneys the Special Master assigned to hear the case stepped down from the case stating she could no longer remain unbiased. The Chief Special master took the case. With Cliffs help, in September of 1995, we had our hearing. We traveled to DC from Oklahoma. The hearing started at 8 AM and continued to almost 8 PM with no lunch breaks, just occasional potty breaks. I was there for most of the hearing while my husband watched Elizabeth outside the courtroom. During Michaels testimony I watched Elizabeth. The hearing is fairly informal and you can come and go. Elizabeth was brought into the courtroom several times, but we did not keep her there long. We wanted the Special Master to see that Elizabeth is very developmentally delayed, but did not want her to disturb the process. Elizabeth cannot sit still quietly for a number of minutes, yet alone a number of hours.
After a relatively seizure free period, Elizabeth had started to have seizures again in August of 1995. On the stand, the government insinuated that I had stopped Elizabeths medication to make her have seizures. Her last blood test, in a hospital in Arkansas after a grand mal on the way to visit my mother, had shown she was in the high therapeutic range. But, I had not received the documentation from the hospital, since it had just happened. (It was in the mail when we returned). We filed the paperwork as soon as we received it, but still, the accusation was there during the hearing. It still gets me angry that someone could say that I would do that to my child. As another vaccine injury Mom put it to me "These are not very nice people." And as my husband puts it "next to the DPT shot that injured Elizabeth the Vaccine Act Process is the worst thing that has ever happened to us."
On April 9, 1996, we received our decision from the Special Masters office. Our settlement was, according to Cliff, like "kissing your sister" not good, but not bad. We then had to go to Oklahoma court to become guardians of our own child, and post a bond to assure that we would not steal her money. Elizabeth received her first check in June, 1996. In retrospect, the one good thing about the vaccine act is that it makes you think about the future of your child and what your child will need after you die. This is something we all put off, because we dont want to think about it.
It is also important to know that you will have to do most of the work and research. Even though our life care planner was supposed to find information about residential placements, it was up to us to do all of the calling, bird dogging (no one ever does anything the first time you ask), getting estimates, etc.
We are very relieved that it is over. Of course, Elizabeths struggle will never be over, as long as she lives.
If anyone needs any further information, feel free to write me at
I hope this has been of some help and information to you all.