Editor’s Note: This post is written by a 38-year-old California mom who prefers to remain anonymous to protect her family’s privacy. I have interviewed her and reviewed the court documents that provide evidence that what she has written is true.
My Son’s Sensory Processing Disorder Was Caused By the Hib Vaccine
My son was vaccinated on schedule.
Lyle was born via C-section. The day he was born he had a hepatitis B vaccine and a vitamin K shot. A week later he was circumcised.
He was vaccinated at 2 months, 4 months, and 6 months, exactly according to the CDC schedule.
The day of his 6-month shots he ran a fever of 103 and broke out in a rash.
I called the doctor and asked her about the rash and fever. I was a worried new mom—panicked that my beautiful baby had such a high fever.
The doctor was unconcerned. I distinctly remember her telling me that it was his immune system working after being vaccinated and that if he was uncomfortable to give him Tylenol.
She said to call the office back if the fever lasted more than 3 days.
I still felt worried. Even though the doctor seemed to think this was normal, my healthy baby was now lethargic and burning up with fever. He could barely lift his head. His eyes were glassy.
I went to set up his online medical portal and, looking through his medical records, I noticed that Lyle always had a fever within days of vaccination. I mentioned my concern about the fevers to my husband and we talked about delaying his vaccines.
We never intended to not vaccinate, but we thought if he was having a fever after each vaccine then maybe his system was too immature to handle so many shots at once.
At his 9-month visit the doctor recommended the flu shot. She was surprised we declined. We explained that we were going to wait. She seemed miffed at us about wanting to wait and asked why. We mentioned our son’s fevers. She immediately told us that fever was a normal response to vaccines. We also mentioned our concern that certain vaccines contain cells grown from aborted fetal tissue, something I had uncovered on-line.
“UGH!” The doctor cried. “I hate misinformation! That is a complete lie. The things people make up!”
We thought the doctor, who we had always liked, would agree with us—that it would be safer for our baby to delay vaccines. But instead she reacted with anger and impatience. It was after her strong emotional reaction that we started doing even more research on vaccines.
I found out that the children of my friends who were on a different healthcare plan were receiving fewer vaccines than my son. For some reason this bothered me. Did my doctor’s office urge more vaccines because we were on an HMO insurance plan and my friend’s children were getting less just because they were on a PPO plan?
At the same time, we wanted to make sure our son was protected against infectious diseases and that he got all the vaccines he needed. We did more research, mostly reading the information for parents at the CDC website. We decided that our son would get the flu shot at 12 months and then the wait until he was 2 years old for the DTaP, Hib, and MMR vaccines.
He got vaccinated with the flu shot at 12 months. He had a fever within 24 hours. Again we were reassured that this was normal.
In April 2013 I took my son to his 15-month well baby visit. He tested normal on all markers. My favorite thing at this age was that he was learning to sing. We sang together every night as part of his bedtime routine. I would snuggle him close to my chest in the rocking chair. My husband and I are both musicians and hearing him sing “ABC” and “Twinkle Twinkle Little Star” in his little baby voice along with me brought tears of joy to my eyes.
At that 15-month well baby visit the doctor kept pressing both the pertussis (whooping cough) and the Hib (Haemophilus influenzae type B) vaccines. She mentioned getting those vaccines at least five times in that one visit. She would not let it go. She suggested we do the Hib vaccine then and the DTaP at a separate visit. I finally agreed.
My son was vaccinated for Hib that day.
A week later he spiked a fever of 105, which lasted for 8 days.
Lyle didn’t sing again for 3 years.
Along with the fever, he became extremely lethargic. My toddler, who had been walking on his own for about 5 months, now spent his days lying in my arms. He had no appetite, and would only drink milk through a bottle. He spent his nights thrashing in bed, screaming and arching his back.
I called the doctor in the middle of the night the first night of the fever. She recommended alternating between Tylenol and Advil, which we did. The medicine did not seem to give him any relief.
The next day we brought him to the doctor. The on-call doctor said he possibly had a viral illness and to call the office if the fever lasted more than 3 days. The fever lasted for another 6 days (8 days total).
After that Hib vaccine, our whole world changed.
Lyle would no longer respond to his name.
He started having long staring spells.
He still spoke but only repeated words instead of responding to our questions.
Our days were filled with tantrums, which involved extreme head banging, mostly on the floor to the point that he would get big bruises.
He became obsessed with anything with wheels and would sit there for hours in one spot on the floor playing with trains.
Once a social toddler, Lyle stopped responding to his friends and seemed to physically not be aware of his surroundings. He would crash into walls or tables and bang things—like his toys— on the walls, tables, and floor.
At his 18-month well baby visit I mentioned all of this to the doctor and she said that he seemed normal!
I remember calling his name to show her that he didn’t make eye contact. She repeated that it was normal for an 18-month-old to tune out his parent’s voice.
At that visit, like at every visit, they measured his head circumference. When I looked back at his records, I realized that my son’s head circumference grew 34 % between his 15-month appointment and his 18-month visit, which is anything but normal.
We lived this way for a year (head banging, wall crashing, lights flickering, wheels spinning, and toys banging). He also stopped eating any food except macaroni and cheese. I decided to stop seeing that doctor because she was not able to offer any support for any of the issues we were facing with Lyle. It was like she was in denial. We had followed her advice, ignored our instincts as parents, and now our son’s health was in jeopardy. But this doctor’s only comment was that he was normal.
We enrolled Lyle in a local Special Education program as a mainstream student. Being a mainstream student meant that he was there to volunteer his play in the Special Ed preschool class to help the children with developmental delays. He went there two half days a week for about 2 hours.
After the first week of school, the Special Ed teacher approached me and asked if Lyle always banged things and crashed into things like she had observed him doing. I said yes. I told her that our old pediatrician said it was “normal.” Every week the teacher would pull me aside and ask me questions about Lyle. I felt like she was picking on me, and on him, for just being a high-energy kid.
In January the following year we found another pediatrician. This doctor noticed right away that our son had some developmental concerns and recommended that Lyle get evaluated by our local regional center. I mentioned this to the Special Ed teacher. Looking relieved that I had finally figured out what she had been hinting at for some time, she enthusiastically agreed.
Lyle was not normal. The pediatrician who had dismissed our concern about the fevers, rash, and lethargy after his infant vaccines and had basically bullied us into getting the Hib vaccine when we thought it would be safer to wait had been wrong the entire time.
Lyle was diagnosed with Sensory Processing Disorder (SPD) at 26 months of age. He started Occupational Therapy around this time also. It was challenging to get him to therapy due to his extreme behavior issues. At that time he was almost always sick with a low-grade fever.
When he was 3 years old, we had him evaluated by a pediatric neurologist who confirmed his SPD diagnoses and also diagnosed him with ADHD. She spent extensive time looking over his medical records and asked detailed questions about his behavior, fevers, and when/if we had noticed any significant changes.
After extensive blood tests and brain scans, this pediatric neurologist, who had trained at Harvard University and Oxford, determined that our son had experienced something called encephalopathy (brain swelling) and suffered from mitochondrial dysfunction. She said that the unusual change in his head circumference between 15 and 18 months was another sign of swelling. She told us the encephalopathy was caused by the high fever he had following his Hib vaccine at 15 months.
Having this incredibly smart, well-trained, kind, attentive, and thorough pediatric neurologist confirm that Lyle had been brain damaged by vaccines filled me sadness, rage, and relief. I felt heartbroken that I hadn’t been smart enough to know better or strong enough to follow my instincts. I felt angry at myself that I had let this happen to my son. I also felt vindicated—I had known for a long time that Lyle’s behavior wasn’t “normal,” and that there was something wrong after he had the Hib vaccine. The neurologist wrote us a medical exemption and told us it was not safe for Lyle to ever have another vaccine.
She also told us that an infant should never be given Tylenol before or after vaccines, and that the Tylenol may have contributed to his brain swelling. Acetaminophen, the main ingredient in baby Tylenol, depletes the body of glutathione, which is a natural chemical that helps the body remove toxins. Without glutathione the body cannot effectively detoxify harmful substances. So when we called the pediatrician in the middle of the night and she told us to give our son Tylenol, she was basically serving a death sentence to his brain.
We decided to reach out to a vaccine injury attorney. The Vaccine Injury Compensation Program has paid out over $3.5 billion to families whose loved ones have been injured by vaccines. In America vaccine manufacturers cannot be sued if their products harm children. Instead a “no-fault court,” paid for by a consumer tax on every vaccine given, was set up to help families like ours. Our bills were piling up and insurance was not covering most of the therapies we were trying to help Lyle with his Sensory Processing Disorder. After about a year of researching, the attorney agreed to take Lyle’s case. He filed a petition against Health and Human Services on behalf of our son.
After about 8 months we received word from our son’s vaccine injury attorney that the Special Master (that is, the judge) in the case determined that our son could only have sustained a compensable vaccine injury if he had documentation of regression within 2 months of getting the Hib vaccine. Since his well baby visit wasn’t until 3 months after he had the Hib vaccine and the doctor did not document the noticeable developmental delays that my husband and I pointed out to her, we only had the documentation of the high fever that lasted for 8 days followed by the documented regression about 6 months later. We also had a note from the teacher at the school that our son showed sensory issues (about 5 months after the Hib vaccine). But the judge—who presumably knows more about brain encephalitis than a Harvard-educated pediatric neurologist who submitted written testimony and clinic data on Lyle’s behalf, determined that our son did not have a vaccine reaction because there wasn’t any documented regression within 2 months of the Hib vaccine.
The Special Master also determined that my son’s symptoms of Sensory Processing Disorder were too similar to autism. Since the Vaccine Court (as it is popularly called) will not award damages for autism, the judge demanded that our case be withdrawn.
He threatened our attorneys, who have an excellent track record of helping families (mostly because they only take on the most air-tight cases), that he would fine them if they did not withdraw the case.
The attorneys believe that the judge was afraid of setting a precedent. If our son were awarded damages for what his doctors would verify was a vaccine reaction, then the court would be flooded with parents whose children also got Sensory Processing Disorders after the Hib vaccine. Why a Special Master has the right to determine that there may only be a 2-month deadline for documented regression is inexplicable. Most cases typically accept 6 months as a standard time frame.
Most nights I can’t sleep.
I replay this story over and over in my head and imagine what would have happened if I never vaccinated my son, if the pediatrician paid attention to his developmental delays following the vaccines and documented them, if I had noticed the infant reactions and not continued vaccinating on such an aggressive schedule, if my doctor had been paying attention to the scientific literature and not recommended Tylenol when my baby was spiking fevers…
Would Lyle be able to sit and learn like a typical 5 year old?
Would Lyle be able to eat normally? (Because of his SPD he can only chew soft food.)
Would Lyle have grown up singing and dancing and making friends instead of banging his head, banging his toys, and unable to relate to other children his age?
Would our family be spending more than $15,000 a year out of pocket for his complicated medical needs?
What would have happened if the Special Master in the vaccine injury case listened to the 2 doctors who testified about my son’s vaccine injury? How does that judge sleep at night throwing out case after case after case? Does he really believe my son’s SPD was not caused by vaccines or does he care more about precedence than he does about people?
Lyle is supposed to start kindergarten this year. The encephalitis causes him unspeakably painful headaches. He has behavioral issues throughout the day. Is there a school that can handle and treat my child with the kindness and attention that he deserves?
I sit here on the floor playing with trains with my son. After 3 years of silence he tries to sing again. The words do not flow like they used to. But he sits here and tries and he sings. I know a lot of parents who are still waiting to hear their children speak after a vaccine injury, and I feel grateful for how far he has come.
But I also feel angry.
I hear stories daily of children who lose developmental skills after being vaccinated yet doctors, public health officials, and mainstream journalists—duped by the lie that vaccine injury is not real—refuse to pay attention.
I’m angry that parents like me continue to be told the lie that vaccines are safe and effective, that vaccine injury is rare, and that it is our responsibility to the community to immunize our children.
I’m angry that the Vaccine Injury Compensation Program doesn’t even pretend to be fair, and that they bully parents into withdrawing their legitimate cases because they are too afraid that if vaccines are found to be causing Sensory Processing Disorders the floodgates will open.
I’m angry for every parent whose child has a Sensory Processing Disorder caused by vaccines.
It happened to our family. I don’t want it to happen to yours.
I cannot have any more children due to a medical issue. If I could, I would do everything differently. We wouldn’t circumcise, give the baby Tylenol, or vaccinate.
Jennifer Margulis is an award-winning health journalist, Fulbright grantee, and mother of four. She has worked on a child survival campaign in Niger, West Africa; appeared live on prime-time TV in Paris, France; and taught post-modern literature in inner city Atlanta. She has a B.A. from Cornell University, an M.A. from the University of California at Berkeley, and a Ph.D. from Emory University. Jennifer Margulis is the author/editor of seven books, including Your Baby, Your Way: Taking Charge of Your Pregnancy, Childbirth, and Parenting Decisions for a Happier, Healthier Family and The Vaccine-Friendly Plan: Dr. Paul’s Safe and Effective Approach to Immunity and Health From Pregnancy Through Your Child’s Teen Years.