|Menomune - One Mother's Harrowing Experience with the Meningitis Vaccine|
|Written by Virginia Young|
|Saturday, 20 February 2010 03:07|
Well another Super Bowl has come and gone. People rushed the grocery stores in preparation for the big day. I ran up to the store just as the game was starting for a few more ingredients I needed for dinner. No surprise the place was empty. Other than staff only three customers were there at a time when the place should have been hopping, and I was one of them.
Chips, dips, beer were all purchased and the fans were snug in their living rooms with friends and family anxiously glued to the television sets. In all honesty watching the Super Bowl, while once an item on my to do list, has taken a back seat to something more important. For the last nine years Super Bowl Sunday has been a reminder to me to give thanks for my life and those who are special to me because nine years ago on Super Bowl Sunday my little girl fought for her life while the rest of the world watched football.
In 2001 news reports revealed several students had died from meningitis. Kelsey Seybold, a large clinic system located in Houston Texas, opened up clinics all around the Houston area. Every night we turned on the television to see reporters at these sites. Long lines of people were waiting their turn for the Menomune vaccine. We continued to hear reports of meningitis in the local schools. A teacherʼs husband had contracted it and it was not known whether or not he would live. Parents started pulling their children from class to take them to the doctor for the new vaccine.
I believed my children had reacted to their childhood immunizations although I could not find a physician to agree. Regardless, I was not clamoring for more. Then rumors spread of possible cases just a mile from our home. My husband was growing more concerned as his pregnant patients came into contact with the bug through friends and family. He called the Department of Health to inquire about the vaccine. He was told it was absolutely safe and he could use it in his pregnant patients.
The Friday night before the Super Bowl my husband met the four of us at a birthday party. "I have the shots drawn up and in the refrigerator at home", he whispered. He had purchased them from a friend. At this point everyone we knew had vaccinated their children (or so it seemed) and we were some of the last hold outs. I had not seen any reactions in other children, and although I was not comfortable with the decision I agreed to vaccinate our kids. After all the health department recommended it for pregnant women and vaccines must be well studied, or so I thought. The fear of being responsible for something going wrong if we did NOT vaccinate had won. That night my children sat in my lap at the kitchen table as my husband vaccinated them with Menomune.
Friday night passed without incident. Saturday came and went. Sunday seemed uneventful as well, and I had almost forgotten about the dreaded vaccines. Around 5:00 in the evening my youngest daughter lay down on our couch upstairs. She said she was tired and I started to get busy with dinner and our evening routine. I donʼt know exactly how much time passed. It was getting dark and I decided to check on her because no one had heard a peep out of her. As I walked to the couch I could feel heat radiating from her body. Her skin was blood red. She has a rash all over her body from a condition called Urticaria Pigmentosa. This rash was worse than anything I had ever seen on her before and she was blistering. Her eyes were just as red as her skin. Her face was swelling. She tried to turn her head but could only move it a fraction of an inch. She winced in pain. Her voice trembled.
"Mommy help me. It hurts. Help me." She tried to move her limbs. "Mommy, I canʼt move".
I called out for help, told my little girl I would be right back and that everything would be okay then I ran for the thermometer and Tylenol. When I touched her arm it burned my own skin. I started to cry as soon as my face was turned away from hers. I gasped a breath and pinched myself. Get a hold of yourself, Virginia. She canʼt see you scared, I thought to myself. I came back with a smile on my face but my voice was cracking.
"Hang in there, baby. Itʼs going to be okay". The thermometer read 101 within seconds... 102... 103... 104. This was axial temperature so her core would be a degree higher. It crept up to 105 degrees. In the meantime I had told my husband to get the car ready and call my mom to come. She lived an hour away and needed to get on the road as soon as possible. This wasnʼt something I could get through without her. I thought I was going to lose my little girl. Everything happened so fast and yet it was like slow motion. My husband and I looked at each other for a moment holding our breath.
"We are taking you to the hospital, sweetheart." As he picked her up she cried in pain. He carried her limp body in his arms to the car. We carefully strapped her into the seat. The slightest bump caused her pain. She said a few words we could not understand then I heard "Please God help me" in a feeble voice and she drifted off.
Her twin brother and older sister immediately checked her breathing. We all feared for her life.
We arrived at the emergency room in minutes. My husband wanted me to take her inside while they waited for my mom in the parking lot. "You are the doctor. You know what is going on and can handle it from the physicianʼs perspective", I said. "You are the mother. You know her and what she has been through better than anyone", he replied. I took her out and draped her over my shoulder. She had never felt so heavy or so hot. My skin burned to hold her. Bad memories of her and her twin brothers' negative reaction at one year of age after the MMR shot flashed through my mind. I squeezed my eyes shut tight and prayed.
My body moved through the double glass doors as if propelled by a force beyond me. The sight of parents with young children in their arms lining the walls will be one I will not soon forget. My eyes fixated on one little boy in his motherʼs arms. He looked to be three years old, just like my sweet Marie. His head was flopped back over his momʼs arm and he was flushed red. She stared straight at me and I stared back as if we knew we were in the very same boat. I gave a little smile. I wanted to say, "Stay strong, it will be okay" but I just kept moving.
I approached the desk, The nurse looked up, took one look at Marie and called out to someone to take her to the back. "What about registration?" I asked. "We will get that later." she said in a frightening tone. Before I knew it my little girl was laid out on a gourney in a far back room with curtains drawn and nurses rushing around us.
"How long has she had that rash?" the nurse asked. "Well she has had it since 12 days of age..." I was interrupted with more questions. "The rash has always looked like that?" she asked. "No not this bad ..." I tried to reply. "Well how long has it been like this?" I tried to reply quickly hoping to get a word in "for several hours by now I guess, she fell asleep and..." "So she has had this for several hours" she said. "Have you given her anything?" I jumped in determined to get the full story to her. I knew they felt she had meningitis. I had the same fear myself. "She has had Tylenol and Ibuprofen sometime between 5:00 and 6:00. She has to have both when she gets high fever like this. She has Urticaria Pigmentosa. She always has the rash. She should grow out of it. Many different things can trigger a response. She just had the Menomune vaccine two days ago." I had wanted to tell her that she does this with all vaccines to one extent or another. I never have been able to give a full history. There is never enough time in crisis situations. The nurse looked up at me for moment then wrote something down and told me the doctor would see us in just a minute.
Marie was coming around. The nurse was leaving to get the doctor and my husband was coming in. My mom had made a record breaking 45 minute trip on the freeway. She didnʼt bring anything but herself and thatʼs all we needed. She sat with the children while we took care of Marie.
My husband and I had a few minutes to talk while we waited. Marieʼs eyes were wide open and staring at us so there was little we could say about our grave concerns. She wasnʼt able to move or say much. She just looked at us. He told me that he knew the doctor well and Marie was in good hands. Soon the doctor came through the drape and introduced herself with a smile and asked Marie how she felt. She let her know that her neck and head hurt. She hurt all over. The doctor ordered fluids for her and had blood drawn. Marie put up a good fight when the needle came and as much as I didnʼt like it I was relieved to see her move like that. The blood showed a high white count which looked to be more indicative of a viral infection than a bacterial one. The fluids helped. We were then faced with what to do next. After discussing the options with the doctor we decided to forgo the spinal tap and watch her. She showed marked improvement with each passing minute it seemed.
People passed in and out checking on us periodically while the fluids slowly entered her system. "You know this is from the shot" I said to my husband. He nodded. The doctor popped back in to check on us. I gave her a little more background on our history with vaccines. I had believed in them. I knew the pro-vaccine bias all too well. At one time I felt all should be vaccinated myself. Telling our story to a doctor is never easy with that knowledge and knowing that doctors had really not cared to hear our story up to that point. As I relayed some of the events to her, however I was pleasantly surprised.
Late that night we took our daughter home. She could sit up with help but felt better lying down. She stayed that way for several days. I kept her home from preschool and called the doctorʼs office to inform them of her experience and symptoms. I kept my daughter hydrated-fed and comfortable as moms do when their child is sick. I told friends the story as time allowed, but my focus was on Marie.
A few nights later I went for a walk down the street to get the mail. I heard cries coming from the neighborʼs bathroom window. My neighbor stuck his head out of the window and called down to me asking me what I did when Marie was sick with her high fever. He was debating on what to do next as his wife was out for the evening with girlfriends and he was taking care of their toddler. I told him we went to the ER and what they did for her there. After bantering back and forth over fevers and symptoms he decided to sit tight. Her fever was not as high as Marieʼs and had started to come down with medication. He closed the bathroom window and I got the mail and went home. His little girl had spiked a high temperature at exactly 48 hours after the injection just as Marie had done, just as several children I knew had done, but there was nothing more I could do.
Days passed and Marie slowly came around enough to sit up. She had trouble keeping water down for a few days. I reported to the nurses and nurses periodically called to check on us. Eventually she sat up and ate and drank and seemed to feel much better. Her lack of speech worried me. We had been through loss of speech before and I didnʼt care to do it again. I decided to look to the brighter side, something I tend to do, and remember the incredible progress she had made. Just a few weeks ago she sat and read me a story from her favorite fairy tale collection (in her own words, of course). At two she and her brother had progressively lost their speech, suffered ear infections, vomiting, diarrhea followed by severe constipation, migraine headaches, severe dizziness preventing them from moving and so on. It was all blamed on viral infections "going around"...infections that we "must have picked up at the well child visit" according to the doctors and nurses. I chose to listen to the doctors and nurses and therapists and such. Now I wondered.
I propped Marie up with pillows on the floor because she was not fully recovered and steady. I told her to wait right there while I got her book. I was so happy that she felt better. I was breathing my first true sigh of relief. I handed her the book. Instead of holding it she let it sit in her lap and slide to one side. She looked at me with a blank stare, her face still swollen and pale. I looked in her eyes and tried not to cry as I saw the same steel grey color in her eyes that appeared after her regular immunizations. I was told that blue eyes just turn color, and indeed they can, but my daughterʼs eyes turned from bright blue to grey after shots then returned to blue. Now they were grey again, and I shuddered. I told myself in my mind that all would be alright and we would get through this. I opened the book and propped it back in her lap. "It is your favorite Marie. Remember how you read Sleeping Beauty and Rapunzel." She used to run her finger along the page from right to left and recall her story of "Seeping Booty". She loved "Punzelʼs" hair and would act out her throwing it over the castle wall with her hands. She made plans to grow her hair out like Rapunzelʼs and give it away to Locks of Love the way her big sister had done. We would read every story for hours and I cried my "happy tears" over her recovery from a very bizarre and dark place. I prayed this new episode would pass...that it would be just that ...an episode. But as she looked down at the book she stared and rubbed her eyes then she cried out. She and I just sat for a moment in silence unsure what to do next. She closed the book and threw it across the room falling into a heap and crying.
It became apparent that this was not going to be a phase or just a viral infection that she would recover from. I learned that day that she no longer knew her name, her age, or really much of anything she had learned. I was thankful that she knew her family although we had to reteach her our names as well. The only word she said for those first few hours of recovery was "cupcake". If I asked her name she responded "cupcake". Her age was cupcake. Her cat was cupcake. Everything was cupcake. That same day I taught her to say "Marie" in response to her name, but when I asked her for her age she then said "Marie". She had no understanding of what exactly it was she was saying. She was simply memorizing responses. As my husband so aptly put the situation to one gentleman, "It was as if you could draw out the most intricate and detailed picture possible on an Etch-a-Sketch, then turn it over and erase it all in one swoop".
Her issues with sensory dysfunction returned. Loud noises had once been a problem but were no more, yet now she could not tolerate them. Migraine headaches ensued, and so did profuse nosebleeds. She would fight off illness after illness missing school more often than not. Some days we wondered what immune function was left. Just when I thought I had all I could take the speech therapist asked how things were at home. The regression was obvious to anyone who knew her well, but no one wanted to look the ugly monster in the eye. A vaccine had done this and it was quite frankly ignored by the people who were in the position to help the children the most.
Marie made progress quickly, but we knew the suffering was not necessary. Over the years we have been reminded as information was revealed to us that we did not have prior to vaccinating our children. When the National Vaccine Injury Compensation Program was explained to me I was told that it wasnʼt really used since vaccines are so carefully studied and watched. I was lead to believe that the program was intended to protect the patients over and beyond the usual legal action that one might take in the event of injury. I was never told that vaccine manufacturerʼs, doctors and anyone involved with the administration of vaccines were protected by law against all liability in the event of any injury or death. I had NO idea that a parent could lose their child or be left with a severely disabled child and not have the right to sue. I now know all too many in that very position.
The likelihood that my daughter would have contracted meningitis and not recovered was very slim. She was more likely to be struck by lightening than contract meningitis. I later read articles from physicians stating their concerns over the vaccine and several told me they would not recommend it. I crossed paths with the wife of one of the doctors that claimed he was vaccinating his children.. She said "Oh no, we didnʼt vaccinate. There was no way I was going to let that vaccine touch my kids". She then goes on to relay all the side effects she found as I try to not break down. The reality is the vaccine is more effective as a treatment, if or when someone is actually infected, than it is as a prophylactic; and once it is used as a vaccine it is worthless as a treament. So if my children contract meningitis it is now useless as a treatment option. We have now introduced more dangerous forms of meningitis into our society with the vaccine, as it contains Neisseria meningitidies, a form we generally did not see in America until now.
One of the most troubling revelations was the simple fact that the teens that died from meningitis were vaccinated. Whether recently vaccinated or not they received something. Though they may not have had Menomune, they were more likely than recently vaccinated for college admission. I donʼt know of an unvaccinated individual who has had trouble with "vaccine preventable diseases", but over the years I have received repeated reports of teens ready for college with their whole lives ahead of them who are suddenly cut down following vaccination.
My generation is the first to be mass vaccinated and we are are not fairing so well in the area of health and wellness. Our children are not any healthier, in fact they are worse. I donʼt know whether to feel vindicated or cry my eyes out for all the children who have suffered needlessly because of marketing ploys and big business. Vindication in the end doesnʼt matter. Children still suffer and some even die from vaccines, and as long as vaccines are mandated and parents are harassed and coerced we must continue the fight for the right to just say "no". For my family this fight is growing to be less and less for us, and more for those less fortunate.
As for my daughter, she is one of the lucky ones. She was diagnosed by a neuropsychologist as suffering from acquired dyslexia. Tests show she suffered a traumatic event occurring around the age of three. She hopes her spots disappear some day, but in the meantime she loves to dance, make friends, read and go to school. Mainstreamed in school with special education assistance she has high hopes and dreams of a brighter future. She is the most optimistic and spunky little girl you could ever hope to meet. Now she collects cupcakes. The little girl next door was diagnosed as deaf and fitted with a hearing aid within the year of Menomune. The parents were told her problem was hereditary. Neither her reaction nor my daughterʼs was reported. Menomune faded away and was later replaced by Menactra. I formed a support group for those families who suffer vaccine injury. We deal with the harassment together. I continue to receive reports of injury from Menactra, even death.
Virginia Young received her Bachelor of Science degree in Biomedical Science from Texas A&M University in 1987. While at A&M she met her husband, Clay, who also studied Biomedical Science. The couple married and lived in Houston where they both worked in research in the Texas Medical Center. They then returned to College Station. Clay graduated from Texas A&M University Health Science Center College of Medicine while Virginia completed her Master of Science degree in Kinesiology with emphasis in Exercise Physiology.
Clay completed his residency in Obstetrics and Gynecology at Scott and White Memorial Hospital and Clinic in 1998. While her husband was in residency Virginia worked as a fitness instructor, personal trainer, and in-home child care giver. She sat on the Board of the American Heart Association of Bell County, chaired two American Heart Walks, and volunteered extensively for organizations such as the Childrenʼs Miracle Network, Juvenille Diabetes Foundation, and March of Dimes.
Fifteen years ago Virginia began questioning the safety and necessity of some vaccines after her first experience in the hospital with her oldest child. She continued to support the current system of mass vaccination until 2002 when a severe reaction in her fourth child lead her to extensive research into vaccine safety and the legal system surrounding vaccination in America today.
|Last Updated on Saturday, 20 February 2010 15:35|