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5.13 Story: From: mstopp (Beth Topp)


This article is from the Childhood Vaccinations FAQ, by Lynn Gazis-Sax lynng@alsirat.com with numerous contributions by others.

5.13 Story: From: mstopp (Beth Topp)

[This story consists of excerpts from a much longer story
which is available at: http://www.avn.org.au/robert_s.htm.
Since this FAQ is posted on Usenet, to keep the post length
short, I am excerpting from her story rather than including
it in full. - LG]

Am I writing to you because I would not be able to live with
myself if I
didn't try to prevent other people from having to experience the same
tragedy that our family did this summer.

On May 28,1999 my 10 year old son and his 13 year old brother
received the
first of three "mandatory" Hepatitis B vaccines. My 10 year old son
experienced mental, physical and personality deviations almost
immediately. Five days later the left side of his face was paralyzed
followed shortly by his left arm, then his abominable muscles and
legs. He has been diagnosed with Central Nervous System
demylination/autoimmune disorder from serious adverse reaction to
Hepatitis B. The prognosis and severity of both are unknown. There
are no practice standards of treatment.

Our families story about the devastating effects of the Hep B vaccine
law June 1999

I could not imagine a more difficult task than describing how my son
was before the shot. With every word I feel that bright, curious,
considerate, beautiful little boy getting farther away. My son is
still here, but he's not the same. He changed literally overnight. He
had a thorough physical exam and our doctor said he was in great
shape. A few minutes later the nurse gave him his first "mandatory "
Hepatitis B vaccine. The following morning he was different.
Different looking, different acting. I keep explaining this difference
to all the doctors.

I realize that it is hard to get past the fact that he is paralyzed on
one side, but that for us is only the tip of the iceberg. There is
something else going on here. There is something really wrong with
him. Mentally, physically, and personality wise he is a different kid.

I can't expect a doctor who has never met him to realize what a
dramatic transformation this is because they have nothing to compare
him to. I am hoping that my memories will be enough to help them
understand how much of my child is missing. I hope I can make them
understand how special he is and help them find some way to bring my
little boy back to me. I'm not asking for a miracle, but just to
understand what is happening to him, so maybe I can help fix it. I am
so desperate, I will try anything. If he was dead I could mourn him
and if he was missing I could look for him and if he had cancer I find
the best doctors for treatment and comfort him. But he has turned into
someone else and I don't know what I am supposed to do. I don't know
how I am supposed to do it.

I enjoy my kids. With six of them there is never a dull moment. They
are all good kids, but Robert was always the perfect child. If you
asked the other kids they'd agree. He was the good one.

Since the day he was born, a perfect little angel with a halo of
beautiful white blonde hair and wise blue eyes. He was content. He
didn't have colic or get fussy. He never showed any sign of a temper
and was patient to a fault. He was always so happy and agreeable. He
was a natural athlete, nice, trying to please and very bright.

To say he was very bright doesn't seem to do justice to his
intelligence. He was a straight A student, every year and had scores
of 100 percent on the state tests. His fourth grade teacher encouraged
me to sign him up for our local college and he was accepted, but I
decided a junior college wasn't the best place for a little boy to be
a little boy. He went to the Gifted and Talented Education Program.

Robert loved to think. He was so curious. He was always asking
questions and loved to figure out brain teasers and word problems. His
brothers nicknamed him "Poindexter" and teased him because he would
say "Well, actually..." everytime he corrected you. And he was always
right. But he never bragged. In fact to Robert it wasn't any big
deal. Even though he mastered most things immediately he enjoyed
practicing them as well. To keep himself challenged, he would time
himself and try to get his homework done in record times. I never had
to tell him to do his homework, it was always done. Robert demanded so
much of himself that I never had to worry about him.

Robert was pleasant, calm, agreeable, mature, intelligent, athletic,
coordinated, focused, self-disciplined, responsible, considerate and
so fantastic every minute you had to remind yourself that he was
there...never any trouble. The day before this nightmare began I was
on the phone talking to my sister. I was catching her up on all the
kids and I commented that I always have something to talk about for
everyone but Robert. Robert is always the same, perfect as
always. Nothing new. Straight A's, no trouble, no problems, fantastic
as always. She laughed and reminded me when Rob broke both his arms
all anyone talked about was his brother who hit him with the car. I
told her if all the kids were as easy as Rob, I'd have a lower phone
bill because I'd have nothing to talk about.

You really would have to know Robert to understand how radical a
change there was after the shot. He's not the same anymore in
anyway. He's really ticklish now. And has no tolerance for pain. If
you step on his toe he screams and falls down crying in agony. Then he
jumps up and wants to attack whoever hurt him. He is mean to little
kids. He argues and fights and demands that everything be fair. He
gets lost. He looks lost. He can't do basic subtraction. He can't
remember anything. He forgets what we did yesterday and doesn't have
the ability to think back and remember the last time he went to the
bathroom. He is cold even when it is 90 degrees. He gets exhausted
walking and gets nosebleeds alot. His face doesn't move on the left
side. He can't even close his eye or blink. His face sometimes looks
twisted tight and severe. Other times it looks like it is sliding off
his head. His mouth doesn't work so he drools, has trouble
swallowing., slurs words. and when he drinks it runs right down his
chin. The only thing he likes to eat is yogurt and does this weird
thing with the right side of his tongue licking the spoon. He eats by
putting his face down by the plate.

People stare at him constantly. This attention is really hard to
take. He never wanted to be the center of attention when he deserved
it and he really doesn't want it now. That's hard for all of us to

He can't handle the simplest of tasks. It's things like putting items
in the diaper bag to bring in the house. First he picked up everything
and then picked up the diaper bag. He wasn't able to get the zipper
open because his hands were full. Instead of putting the stuff down
and opening the zipper, he was stumped. He started to carry it all
inside, but dropped a few things on the ground. He was almost to the
house when he decided to go back and get the stuff he dropped. He then
dropped more stuff when he tried to bend over. Finally he took the
empty bag in the house and made several trips back outside to get the
stuff. I put it in the bag and then went out side to shut the car
door. Afterwards he had to lay down and said he didn't know why he
was so tired.

We went to a block party at our local ice cream shop. They sold raffle
tickets for all sorts of prizes donated by local merchants. Robert had
three consecutive tickets, 513, 514, and 515. They raffled off over 60
prizes in between songs. My son stared at these three tickets for the
entire evening. He held them in his hand in front of his
face. Everytime a number was called he would look at each of the three
tickets. Even if the number was 247, he had to look at each of the
three tickets to see what the numbers were. Everyone else was talking,
listening to the band and having fun except Robert. He stood in one
spot and had to focus entirely on three consecutive numbers. After
watching him do this for over an hour, I asked him what his numbers
were. He looked at them and turned to tell me but couldn't. Then he
showed me the tickets so I could look for myself. It is awful to see
him like this. My sweet, brilliant, dynamic, little boy. My heart was
breaking for him. It scared him and he seemed to withdraw like a
turtle into his shell. His shoulders slouched and his chin went to his
chest and he wasn't there. I asked him what was wrong and he said he
was cold. We went to the car to get his jacket even though it was a
beautiful summer evening. He stumbled a few times on the way to the
car so I took him by the elbow to guide him. He put on his jacket with
the collar up and hid in it.

He seemed to feel a little better and I asked if he wanted something
to eat. The only thing he orders at this place is a corndog and
rootbeer. He has lived here his entire life and that is all he has
ever ordered, he loves it. His brother wanted chili cheese fries so I
gave Robert some money and he just stood there. I told him to go
inside I would follow him in there. He stumbled on the step and then
barely had the strength to open the door. There was no line so we
didn't wait at all to place the order. Robert stood at the counter
looking completely lost. When the girl asked him what he wanted he
looked at me, but I told him to go ahead and tell her what he
wanted. He struggled and came up with chili cheese fries. The girl
asked if that was it and Rob just stared at her. Then he said "yes,
I'm not hungry". I said "I thought you said you were hungry?" He said,
"Yes, but I can share the fries". So I pushed a little more by asking
"Fries? What happen to your usual corndog and rootbeer." He looked so
relieved as if I had rescued him, "That's right, I'll have a corndog
and a large rootbeer." It was then that he realized there was
something wrong with him and others could tell. He was tucked back
into his jacket before the girl handed me our change.

I keep a log of what each day is like. Sometimes it seems that the
harder the day the less I can write down. I suppose it is self
preservation on my part to avoid any thing that would put me over the
edge. Some days I feel so close. Especially when we have to interact
with doctor's or the medical profession. The system makes them appear
apathetic and detached. But I haven't met a single doctor or nurse who
wasn't truly affected by Robert's pathetic state. They are sorry. That
is the worst. I want them too fix him and they are sorry. We ended up
in a urgent care bed after Robert collapsed during a doctors
appointment. The fourth doctor we saw asked me about his situation,
then asked what he could do for me. I almost lost it when I told him
"How was I supposed to know? I'm not a doctor." He didn't get mad or
walk away. He touched my arm and told me he was sorry and wanted to do
what he could. I couldn't get angry so I am sad and it just hurts.

The same goes for everyone I've called for information on what
treatment is available. I keep calling and reading and trying to find
something on how to cure my son. I've talked to doctors, experts,
advocate, parents, and others like Robert. People are so kind. They
listen, they care and then they say they are sorry. And I wait...I
keep waiting for them to continue. But they don't continue. So I
repeat myself and say my son was seriously injured by the Hep B
Vaccine and I thought they might have information that could help
us. Anything at all, please. They say they are sorry again. Some give
me the name of a lawyer or tell me about the compensation offered. I
thought they said this because the cure was expensive. All I am
interested in is my son's health and making sure he gets better. They
listen as I go on and on. They are kind and they understand. They are
sorry. Sorry doesn't bring him back. Compensation won't do it
either. We need a doctor not a lawyer. So I keep searching and
praying. I pray that if I ever receive a call from a desperate mother
I will have something to tell her besides sorry.

Please don't say you are sorry. Just bring Robert back.


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