About Sarah...

When Sarah was 6 months old, she went to the Dr. for a routine physical and received the third set of childhood vaccinations.  The first couple hours afterward were about the same as previously, she was tired and slept.  It was about four hours after the Dr. visit that she began to have problems.  Sarah was eating a jar of baby food, peaches.  She was sitting in her walker when she suddenly raised her arms, stiffened up and let out a very high pitched scream.  It was frightening, but, brief.  Deciding she had pinched her leg or something, I continued to feed her.  About 20 minutes later, it happened again and continued to happen every 20-30 minutes.  Her father came home from work and we decided to take her to the Urgent Care.  The place was packed and at this point the screaming and stiffening was happening every few seconds.  It took quite awhile to be seen, they asked us to wait in the hall because the noice was disturbing the other patients.  The Dr. could not determine a cause and didn't seem concerned.  He said for our own peace of mind, we could stop by Children's Hospital and have her looked at there.  The nurse at the desk overheard and had taken her history.  She said, "Didn't you say she had her shots today?",  "When you get to Children's, be sure to mention it, that may have something to do with this." 

Sarah calmed down in the car and we began to head home.  A block down the road, she started again.  We went straight to Children's Hospital.  She was, of course, calm there.  She had one 'episode' that a nurse did see.  For precaution's sake, Sarah was admitted for observation.  She seemed better.  It was the next day, almost exactly 24 hours after her shot, that we found out she wasn't.  I was feeding her a bottle and as always, she had her little hand wrapped around my hair.  She screamed and stiffened.  This time was different.  Her eyes rolled back in her head and she began convulsing.  My mom was in the room and she ran out for help.  A nurse came in and they called a team in case she needed help breathing.  The nurse took Sarah from my arms and I turned in fear.  However, Sarah's little fingers were still tightly wrapped around my hair and I wasn't going anywhere.  This brought me back to her.  I held Sarah's other hand, told her it was OK, "I love you, mommy is here".  The nurse was great, she told us it was a Gran Mal seizure and that she looked OK, her color was good and she wasn't choking.  The nurse explained Sarah would be tired for quite awhile afterward, the seizure takes so much energy from every muscle.  It lasted about a 1 1/2 minutes, but, seemed like a lifetime.  

Using a heplock in her foot, Sarah was started on  Phenobarbital to control the seizures.  The Neurologist came in later in the day and discussed her condition.  She was doing OK.  The Dr. had reviewed her history and thought it probably due to a reaction to the Pertussis in the DPT shot she had received the day before.  Pertussis Encepholopathy, brain damage due to the vaccine.  He explained the stiffening or jerking and screaming were Myoclonic Jerks, another type of seizure.  The extent of her injury was yet to be seen and could not be predicted.  All that could be done was continue with the medicine and monitor her.

Not knowing much about the condition, we continued the medication and were glad the seizures were under control.  Prior to this, she had become quite vocal.  She had quite a few sounds and had even giggled a couple times.  Now, she wasn't as verbal.  She had begun to roll over.  Over the next couple months, my mom had done some research about seizures and Epilepsy.  The Epilepsy Foundation had sent her some information which she passed on to me.  One of the suggestions was to apply for SSI.  We did, but, Sarah was denied.  By the time Sarah was 8 months old, I was still sort of in denial but, decided to check into what we could do.  Sarah was not crawling.  She was working a pretty good commando crawl on her belly and could roll.  The big flag seemed to be that she could pick up things with a pincer grasp.  Given a few raisins, she would put them in her fist and open it when she got to her mouth.  She wasn't progressing like other babies her age.  Her pediatrician said we would have to wait and see how Sarah progressed.  He thought she might outgrow the seizures and pick back up on her development.  Finally, I decided to make some calls to see what was available in the way of assistance for her.  The Epilepsy Foundation put me in touch with our county Board of Mental Retardation and Development Disabilities (MRDD).  I began taking Sarah twice a week to a class with other parents and children with special needs.  She had a teacher that worked with both of us as well as speech therapy, occupational therapy and physical therapy.  It was wonderful to have the comradarie of the other parents and the help for Sarah. 

Sarah continued to go to the Special Needs classes through the county until she transitioned at age 3 into the school district's pre-k program.  In the meantime, we had discovered Sarah was not alone in her reaction to the DPT shot.  I was made aware of the Vaccination Compensation Act and the requirements needed to plea a case.  Sarah met all the requirements.  I had contacted Kristine Severyn of the 'Ohio Parents for Vaccine Safety' (now Vaccine Policy Institute (VPI)).  She assisted in finding attorney's that handle vaccine cases.  We went through an attorney in Chicago, IL.  It was difficult filling out the paperwork, writing the history and thinking about the uncertain future.  There was still a huge hope for her to outgrow this.  We waited for the statute of limitations to file the case.  Then it took awhile to get the actual court date.  Finally, the day came, we won the case and then needed to prepare a life-care plan for Sarah.  We had to estimate her needs for testing, medication, adaptive equipment, attendant care, respite care, etc. for the rest of her life.  This was even harder.  It became clearer, as Sarah was almost 5 at this point, that she was not going to outgrow her condition.  One day while at a friend's I noticed a picture of her daughter, Sarah's age, in her soccer uniform.  It hit like a ton of bricks, my beautiful girl who could barely speak and was still in diapers would never play soccer.  At least not on a typical team.  I went home and cried.  The pain didn't last long.  Sarah was a happy child and touched everyone with her smile.  Her spirit glowed, she had a purpose.  How could I complain about that?  She could walk, even run and was learning to talk.  Her vocabulary was growing and I almost always knew what she was saying.  Those moments of sadness and wondering what if...come periodically at milestone years or special occassions, but, they never last too long. 

It took awhile to do the life-care plan.  But when Sarah was 5 1/2 it was all finalized.  The attorney also suggested we resubmit Sarah's SSI application stating it was not uncommon to be turned down the first time.  We resubmitted and received retro payments up to the settlement. 

Today, Sarah is attending a Multi-Handicapped class at our local High School.  She participates in a work program through Goodwill and practices life and work skills in the classroom.  She also has the opportunity to be with typical high schoolers which she enjoys. 

Sarah's brothers, Tyler, Chad, and Ryan love her and look out for her.  Funny, they treat like her like most siblings do, picking on her occasionally and she can tell them off just as well.  People ask if the boys have been vaccinated.  Yes, but, they only received the DT instead of the DPT.  Sarah's youngest brother, Ryan also had a problem with a vaccine.  When Ryan was twelve months old, he received his vaccinations, including the MMR.  A week later, he came down with the mumps, high fever and very swollen glands.  The Dr.'s office said this can sometimes happen and to bring him in only if it got worse to avoid spread of the disease.  Ryan recuperated, however, he did not progress in his development.  By thirteen months, he still had no speech, and was not walking.  Ryan began walking at sixteen months old.  This was late, but, the Dr. assured us it was not unusual.  At eighteen months Ryan still had no intelligible speech, and I realized he had other difficulties as well.  He was delayed in his motor skills and coordination as well as socially.  Knowing these were notable and having been through the MRDD with Sarah, I called to have him evaluated.  Ryan qualified for services and began the preschool at age 2.  When Ryan turned 3, he was evaluated through the Cincinnati Center for Developmental Disabilities (CCDD) at Children's Hospital in Cincinnati.  There was not a clear diagnosis.  He had many autistic traits, but, not enough for the autism diagnosis.  The Dr. said it was ok, even good, not have a label associated.  With the needs Ryan had, the 'developmentally delayed' diagnosis worked to get the school services he needed.  At age 7 Ryan was evaluated by a psychologist.  At this point, his symptoms were more defined and obvious.  School interactions and work gave more history and insight to his behaviors.  This time, he fit into a definite category.  Ryan was diagnosed with 'Asperger's Syndrome'.  This falls under the Autism/PDD umbrella.  Having a name for Ryan's difficulties was actually a relief.  Some research into the syndrome helped explain his extreme behaviors and traits.  Most of all, there was help in the way of techniques to handle him and how to avoid some of the explosive situations, as well as, support. 

Did the MMR cause the Asperger's Syndrome?  The answer is not clear.  However, there is much evidence that the MMR vaccine causes Autism.  I believe Ryan's condition is a result of his reaction to the MMR.  Though not as immediate or severe as Sarah's reaction to the DPT, he reacted to the MMR by contracting the Mumps.  Ryan will also deal with this throughout his life.  He has made tremendous progress.  Today, he is very close to grade level in math and reading.  He is learning how to interact with others.  Though he still struggles socially, he has come a long way.  There appears to be a definite history of vaccine reactions.  Maybe, someday, there will be genetic evidence or a test of some sort to assist parents in making that major, sometimes life altering, choice to vaccinate or not.