DPT injury-

[Guest guest]

COPING WITH A VACCINE INJURY

Our daughter

Our daughter, , 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 there is something terribly wrong. has a seizure disorder.

Lennox Gastaut has been suggested by one neurologist, but denied by another.

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.

Our Experience

When 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 had had a normal reaction. Her second vaccination was at

age 4 1/2 months. At this time, 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 couldn't stop the

shaking. I KNEW that no matter what the pediatrician was telling me,

something was very wrong. We took 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 2 different ICU's. 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.

was injured by her DPT/OPV vaccination on August 2, 1986. We now also know

that 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.

THE ACT

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.

Information can be obtained from the National Vaccine Information Center web

site :

http://www.909shot.com

Government information is available at:

http://WWW.HRSA.DHHS.GOV/bhpr/vicp/new.HTM

The current table is located at:

http://WWW.HRSA.DHHS.GOV/bhpr/vicp/table.htm

------------------------------------------------------------------------------

--

Even though the act was passed in 1986, the effective date for the act is

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 government's web site for post

act cases.

We filed our petition in 1990. Remember, this is not a lawsuit. The process

is 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 child's 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 's 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 was injured

by the vaccine.

There are 2 phases to the Vaccine Act process. The first phase is

eligibility. The second phase is settlement. 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 was eligible. The second phase, was, awful.

SETTLEMENT

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 child's 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, then 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. On Catch-22 is that the longer things go on, the more information is

relevent 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 don't make the limit, is withdraw your petition. So,

you wait, and wait, and wait.

THE VISITS

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 's care after she turned 22 or we died. My husband

and I are both only children. 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 's doctors. I had to pay for these

visits. The director of the nursing agency providing information to us told

us she them that they would never have another federal contract if they

followed Oklahoma nursing law in requiring at least an LPN to administer

medications. 's 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 7AM to watch

prepare for summer school. We waited, she never came. 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

was not on the bus to protect her. She wanted to observe

without us present. She was quite angry when she found out that

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 is 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 , 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: shoelaw@.... 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 over the

case. With Cliff's 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 outside the

courtroom. During 's testimony I watched . The hearing is

fairly informal and you can come and go. was brought into the

courtroom several times, but we did not keep her there long. We wanted the

Special Master to see that is very developmentally delayed, but did

not want her to disturb the process. cannot sit still quietly for a

number of minutes, yet alone a number of hours.

After a relatively seizure free period, had started to have

seizures again in August of 1995. On the stand, the government insinuated

that I had stopped 's 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 the

Vaccine Act Process is the worst thing that has ever happened to us. "

IN SUMMARY

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.

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 you child will need after you die. This is something we

all put off, because we don't 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, 's struggle will

never be over, as long as she lives.

If anyone needs any further information, feel free to write me either by

snail mail or email at Betsy46@.... I hope this has been of some help and

information to you all.

------------------------------------------------------------------------------

--

A FEW CONSIDERATIONS TO MAKE SURE YOU INCLUDE IN A LIFE CARE PLAN -- VACCINE

ACT OR NOT

I thought I would outline a few things you need to make sure are included in

a life care plan:

Medical Needs

Pediatrician/Internist Visits

Neurological Visits

Opthalmological

Ear Nose Throat

Developmental Assessments

Psychological Assessments

Dental Needs

Hospitalization

Anesthesiologist

Special Needs

Lab/Xray

EEG's

Blood Tests

Emergency Room Visits

Hospitalizations

Orthopedic Needs

Doctor

Xrays

Orthotics

Medication

Seizure Meds

Vitamins (B6, etc.) prescribed

Insurance Premiums

Insurance Deductibles

Diaper/Hygiene Supplies

Care while at home

Custodial Care

Respite Care

Care when leaving home

Staffing level requirement based on function

Job coach

Sheltered workshop

Therapies

Speech Therapy

Physical Therapy

Occupational Therapy

Behavioral Therapy

Occasional Counseling Therapy for parents

Case Management

Special Equipment

Wheelchair

Computer

Therapy equipment

Feeding equipment

Switches

Bed

Communication Equipment

Special clothing or shoes

Home Modifications

Transportation Needs