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

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.   Robert

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.

It is important to know that I wanted my children. I cherish them. I have always believed I was put on this earth to raise my children well, provide them with a good foundation enabling them to achieve great things. No sacrifice is too much. I want them to be good people and I believe that each one of them is destined to do something great with their lives.

We have six children and live in a small house on 4 acres. A few years ago we were set to move into a huge seven bedroom brand new home, but decided it wasn’t worth losing time with our children. Now I work full-time from home and my husband works on per project basis, so one of us is always with the kids. The point is I know who my children are. I am with them all the time. Some families have a family night once a week. At our house we have date night when Dad and Mom get to be alone, because every night is family night at our house.

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.

He was very competitive, but only against himself. Doing his best at all times was important to him. He was an excellent athlete. He excelled in karate, played in the youth football league, and was on the basketball team. But his passion was long distance running. He would run up the same hill everyday and time himself. He was the most comfortable competing against his own personal best. He just got a puppy that he was training to be a show dog and he was serious about it. He always made sure our animals were cared for even when it wasn’t his chore.

Robert’s schedule meant he had to get up first in the morning. I never had to wake him. He set his own alarm, got up, dressed, fed the horse, took care of his puppy, had everything he needed ready and waiting with all his homework completed to be at the bus stop 5 minutes early. Everyday rain or shine, no matter what. He was a clock watcher. He hated to be late and he never needed anything from anyone. He would be so quiet in the morning that I would fall back asleep and next thing I know he was kissing me good-bye and telling his brother to get up on his way out the door. He would run all the way to the bus stop and all the way home even in the heat of summer. One of my sons is notorious for telling me the night before he has a recital and needs to wear a dress white shirt and black pants. Robert was just the opposite. He knows what is happening months ahead and marks it on the calendar, but always says if you can’t make that’s O.K.

Robert is quiet, but not shy. Personable, but not social. Handsome, but not aware of his looks. He was mature, studious, curious and conscientious. He was responsible. I never realized how much he just did without being asked. Robert kept track of my car keys and the baby’s shoes. He always checked the charger to be sure the battery on my cell phone was charged. A thousand little things that made a big difference in our lives. Robert just did things for us all. He was aware of things and took it upon himself to do everything he could. Ask him to do something one time and it was done. I never had to check up on him.

He is very popular and friends with everyone. He never got into little social dramas that play out in the school yard. He would try to smooth everything out, but he seemed to realize other peoples limitations and took it in all stride. He was the same at home. He never fought for the front seat and he used to solve problems instead of wanting it to be fair for himself. He has a 5 year old brother and a 1 year old sister. These two often get Rob’s older brothers frustrated and I have to step in between a baby and a teenager. This was never the case with Robert. He was always very mature with both of them. When they acted up Robert would try to calm them down. If they screamed for something of his, he never used to scream back. Instead he would share or get them interested in something else. I never had to remind him that they were just little kids. This year Robert’s teacher had prizes that the children could earn by doing extra work or being good. Robert was so excited when he brought home a stuffed bunny for his little sister. He told his little brother that he would win something for him next and that they had boy toys, too. Robert didn’t care that everyone giggled when he picked out a girl toy in class, because he knew that his sister would like it. His little brother decided he wanted a bunny, too. And Robert earned several more after that for the three of them to play with.

Robert’s older brother often complained that when I ran errands with Robert we always did something fun afterwards, but whenever he came along we just went home. I admit he was right. I love to do fun stuff with the kids. Robert made running errands so easy, I had time and energy to goof off afterwards. When my older boys came along they complained or goofed off so much all I wanted to do was get home fast.

Robert’s only fault was his bedroom. Robert’s room would make any mother cringe. Robert has never seen a problem with it. He knew exactly where everything was. I have considered tying a rope around myself before going in to put away clothes just in case I can’t find my way out. I tease him that if I get in trouble I’ll tug three times so they can pull me out. I don’t know how he could find anything in his room, but he never had a problem. He claimed he was using everything. When he was little I would come into his room to say his prayers. I’d start to pick up a few toys and he’d say "No Mom, that’s the fort". I remember he would have little people, cars, blocks, and toys set up around the entire room. He didn’t play with a little toy city, Robert built an entire universe and played with it all.

His mental abilities were amazing and he enjoyed "building his brain". Robert could remember every detail of everything forever. He understood difficult concepts with ease. He likes to figure things out. He was doing basic square roots in kindergarten and liked to calculate the volume of spheres for fun. He memorized the value of Pi to the 20th place. The standard "use each spelling word in a sentence" must make sense, follow a theme or at least should contain accurate facts in Robert’s world. For example if the spelling word was lived, Robert would verify the date that George Washington was born and died before he wrote the sentence about when the first president lived. My children all love to read. They read like some kids play video games. Robert was the one who could read and still hear a conversation. He could stop at any point and then come back and pick up right where he left off with no trouble.

He was the only one who understood the principle of savings and got excited by compound interest. He is the kid in the family who always has money. He cracks up when his brothers blow their allowance on the latest fashion and then wear it a few times before handing it down to him. He has the best wardrobe in the family and never spends a penny. It seems that I am always having to buy clothes for everyone but Robert. His brothers are relentless when they need new shoes. Robert will mention it once and then never again. If I forget he’d wear the tread off the bottom and never say a word. Robert is happy with any shoes that fit and doesn’t comprehend how going to the mall buying expensive stuff you don’t need is fun.

The junior high gifted class will study the stock market next year. Robert wanted to get a head start. He began learning about investments and reading everything he could. By the second week I couldn’t answer most of his questions, so I decided we could learn together. Robert is always so good and I would realize every once in a while that I didn’t do enough with him because he was never a "squeaky wheel". This summer I was really looking forward to being with him and having a fun time. He got out of school one month before his brothers and we planned to research the stock market on the internet. I opened an account with E-trade. First we were going to upgrade our computer and learn how to access our account. He was so fired up about this and was pouring over money magazines. He saw how he could be a millionaire and I never doubted it for second.

Making money wasn’t Rob’s goal in life. He wanted to go to Mars. He was going to work for NASA, anything to do with outerspace. Last year Robert attended US Space Camp for astronaut training. It was his first big adventure away from home without his older brothers. He had to take a plane and was picked up at the airport then taken to the training center to register. I was nervous but Robert was a man with a mission. He didn’t just have fun trying out all the stuff. He was serious. He studied hard, worked hard and trained hard the entire time. He beat out second year kids for space shuttle crew positions and learned so much. He graduated and returned home wearing a space flight suit with awards and pins. We were so proud of him. And he was so proud of himself. He spent most of his return flight in the cockpit comparing notes with the earth bound captains.

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 take.

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.

All night people he has known his entire life were staring at him like he was from another planet. He is wearing an eye patch and he looks like something out of Phantom of the Opera. It is the worst when he is happy and tries to smile. He trips, stumbles and falls constantly. He wants to wear his NASA flight suit from last year all the time. He complains about being so hot at night he sleeps with bags of ice in his armpits, but he doesn’t have a fever. Then he is freezing and wears a down jacket in the heat of the day. He asks to go to the store with me, then doesn’t want to go inside once we get there. He reads very slowly and if you interrupt him he starts over. He has to finish the page he is reading and then folds the page in half to mark his spot. If he loses his page he will have to start the book over because he can’t tell what part he read and what part he didn’t so he is unable to find his place.

Physically some days are better than others. He feels pain in the base of his skull and neck all the time. Every once in awhile he has a sharp piercing pain and then usually gets a headache over his left eye. He can’t handle any light or noise or stress and will have to lay in bed until the next morning. He sleeps for days at a time and gets up for brief periods angry and wild. His joints are stiff and ache. He is weak all over and can’t use the can opener or open a poptop can. He seems to bruise easily, but he does falls all the time.

He lost the ability to move his left arm for almost a week, he still can’t open it all the way. It won’t extend at the elbow and his muscle in his upper and lower arm are rock hard. He feels everything much more. He passes out from the pain of drawing blood and can’t stop shaking afterwards. Somedays he feels sore all over and says it hurts when you touch him.

Last week we were back in the hospital and it was really scary. A few days after his left arm was paralyzed, he started having severe stomach pains. From his belly button to his left hip bone felt like it was being pulled and he was doubled over in pain. He urinates all the time. Despite the frequent urination, he still felt as though he needed to go to the bathroom a few minutes after he went. The more he tried the more it hurt. I left a dozen messages for his doctor and then called the neurologist who had me rush him to the emergency room. His blood tests were abnormal and the Xray showed that he was packed full of fecal matter. He couldn’t remember when the last time he had a bowel movement was. No one could get a hold of his doctor. The neurologist wanted to have a spinal tap and MRI done, but needed our doctors OK first. About 1 am I decided that Rob would be more comfortable at home and since nothing was going to happen until the next morning anyway, I took him home. The next day after sitting in hot baths and lots of water, Robert had a small painful bowel movement. And we began looking for a new doctor.

Stress really takes a toll on Robert and I try to keep him as calm as possible. We tell him he looks fine and treat him as normal as possible. He can’t handle it when he can’t get the words out or when his fingers won’t move right. He just shuts down, with his chin to his chest. When there is too much going on like several people talking and the radio on one side , TV on the other he loses it. He starts talking about something totally unrelated to the conversation and then looks at you like "Why did I just say that?". When he realizes that others notice it too, he feels sick and will lay in the fetal position, eyes open instead of sleeping and says nothing if you ask him what’s wrong. I don’t let anyone talk about this in front of him, because I don’t want him scared or feeling stressed. It is worst after a doctors appointment, because the things they ask him and have him do make it obvious that there is more going on than Bell’s Palsy and it is getting worse. I had to turn my head and bite my lip when a pediatric neurologist asked him what day it was and he looked at me to help. He got the addition and after minute the multiplication, but cannot remember how to subtract 7 from 24. He knew that he should know how to do this yet he still couldn’t figure out how to do the problem or any subtraction. He can’t tell you if a word problem can be solved, let alone begin to find the answer. The terror he feels at the realization that there is something wrong with his brain is too much. He sleeps for at least a day. He sweats and his body is rigid while he sleeps. I tried to wake him and wasn’t able to for several minutes. I almost called 911.

I pray we find a doctor able to put Robert’s health before all other concerns, political, financial and the rest of the crap that make it impossible to be a good doctor these days. We are still searching for a primary care physician who won’t hide from us, but I am trying to prepare myself for the long road ahead. I don’t trust anyone and feel paranoid. I start to analyze everything people say and do, searching for hidden agendas.

Robert has always eaten well and has always drank water. He would rather drink water instead of soda at home and he’d probably drink it all the time if they didn’t charge for it. He thinks people who pay for bottle water are crazy when it comes out of the tap for free. Now I am making certain he has the right amount of good proteins and vitamin supplements everyday. He has a terrible sweet tooth, which is odd because he never ate a lot of sweets. I try to give him lots of rest and no stress at all. It is hard because it means not going places as a family. The worst place for him is in the van with all of us and the baby starts crying and his brothers start messing with each other and then Robert will start to rock and make a noise like "BAM" over and over, louder and louder until everyone is just staring at him and he doesn’t have a clue as to why.

I haven’t mentioned his behavior because it is the hardest for me to deal with. I don’t want to make excuses for him, but he never did this stuff before. I know it isn’t his fault so I don’t want to say how "bad" he is. At the same time, I need to help him get it under control in case it is this way for the rest of his life. God, help me...how do you find the strength to discipline him when he isn’t aware of his unacceptable behavior and calling attention too it stresses him out and makes him ill.

I struggle with every decision. I speak to my parents, doctors and friends but no one can tell me any answers. They don’t know what to do anymore than I do. When I wake up in the morning I would try to see how Robert was before planning my day. Now I have learned to take it minute by minute. It changes that quickly. He has never been sick before , so he can’t tell how he feels. Weak spells, dizziness, stomach and head aches catch him totally by surprise.

We tried to play it off. We told him was better and treat him like normal, but he knows. What can I say when he asks, "Why me?"....How does a mother explain something like this to her child? I want to know "why him?’....With each day that passes it is more difficult to be brave. He missed summer camp and the annual trip to Mexico with his Grandparents. He mentioned football season which starts in August. He still intends to play football in college and wondered if missing a season is going to hurt his chances. Somedays he can’t climb on to the examination table at the doctors and he is concerned about playing football in college. We had no choice but to tell his older brothers the truth. I needed their cooperation and understanding because I devote every minute of the day to Robert. At the same time Robert’s temper is out of character and they can’t take it personally. I asked my boys to treat him as normal as they could. They can’t do it. They all sit next to him and touch him. If he is in the bathroom they check to see how he is. One of the boys wasn’t able to face him for three days because his eyes would fill with tears. They told Rob the next day they had hay fever and that’s why their eyes were red and swollen.

Two days after he developed Bell’s Palsy I began to feel like I had a tight band around my chest. Sometimes this band just cinches up and I can’t breath in or out. I think my heart has stopped. I want to cry, but I don’t cry not yet. I can’t start because then I can’t stop. Sometimes the band is looser, but it is always there like a tightness on my heart. Somedays I don’t think I can stand another minute. I can’t bear to see another friend who doesn’t know about Robert and try to explain what has happened. Every night the phone rings and rings. Our family and close friends needing to know if there has been any change. Anything happen that day to give us hope and get us through tomorrow? How much longer will they call? How much longer will I answer? How do we get back to living again? I talked to people who have been going through this for years? How do they do it? How can they get up everyday and face this? How do they justify doing anything else, when their child requires so much? I can’t even consider going to get my hair cut or buying that purse I was planning on getting before Robert’s shot. If I feel this way, I can’t imagine what Robert is going through.

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.

Beth Topp mstopp@as.net

(Robert’s mom)

[Vaccination]  [Hepatitis vaccines]