Our Definition of Normal
By Francine Pugliese, Pittsburgh, Pennsylvania
Nina is the youngest of my three children. I had no idea a trip to the pediatrician’s office for a checkup and one simple injection could change our lives so drastically. For the last seven years, our daughter has fought to regain some semblance of her normal life.
Spending long hours at the gym watching her play basketball and dreaming of sports scholarships have all been traded in for one simple wish, a pain free day for Nina. I continued to pray that, despite her daily illness, her childhood friends would still find Nina to be that funny, animated girl that could make anyone laugh.
Our story began in late May of 2007. I took Nina to the pediatrician for her 12-year-old checkup. During the visit the doctor recommended that I have her receive the first dose of Gardasil. I immediately told him that I was not well informed about this new vaccine. He reassured me that it was fine and better to get it while she was young. I trusted my doctor.
As we left the office, a strange feeling come over me. I started to question my decision to allow the doctor to administer a vaccine that was new to the industry. My daughter was 12 years old. What was the rush to protect her against a sexually transmitted disease? Maybe it was mother’s intuition, but I suddenly felt sick to my stomach.
Early Signs of Illness Post Gardasil
Less than a month later, early in July, Nina started complaining of her hair falling out. As a mother of three, I often play down any medical concerns my children have until I see a true problem. Nina is a beautiful Italian with long thick brown hair. I put her to ease by telling her that with her amount of hair it is common to see more of it in the shower or on the bathroom floor.
Over the next few weeks Nina started to complain of flu like symptoms. She would wake up very fatigued and nauseous. The symptoms were intermittent, but becoming more regular as the weeks passed.
I did start to notice an abundance of her hair on the bathroom floor. I was becoming concerned.
By August, her complaints were more severe, so I took her to the local Med Express. They told me she was very dehydrated and administered IV fluids. Nina felt great afterwards. I was relieved.
Unfortunately, the next morning the symptoms returned with a vengeance. She missed the first week of the new school year.
The following week I started driving her to school because she was too sick to get on the bus. The school was only five minutes away but by the time we got there she was already too sick to get out of the car.
At first I thought maybe she was having some type of anxiety about starting seventh grade, but that did not make sense to me. Nina had always been a very active child who was constantly laughing and playing with friends. Her relentless love of basketball kept her on the go most of the time. She played on three different teams. School had never been a problem for Nina.
A Mother’s Intuition
She tried to muddle her way through the first semester of school, but was losing the battle. She was becoming ill at all times of the day. She would sleep on the bathroom floor hoping not to vomit one more time.
I made repeated visits to the pediatrician’s office pleading with them to help our child. Questions were running through my head constantly. Why did she become so ill so suddenly? What could have possibly happened? What had she been exposed to that could have caused her mysterious symptoms?
Then I remembered my mother’s intuition moment and realized our world began to change after the Gardasil vaccine.
Her pediatrician was in agreement, we would not proceed with the second dose of the vaccine due to Nina’s illness.
Searching for Help
The next year was filled with illness, doctor’s appointments, diagnostic tests, multiple medications, multiple diagnoses, and many, many disappointments. We were told she was suffering from, Vestibular hypo function, Meniere’s disease, tonsillitis, and last but not least, a mental illness.
My husband and I were baffled. No matter what medicine the doctors prescribed for our daughter, her illness continued to invade her body turning our world upside down.
We finally caved in and took her to see a psychologist. The psychologist commended Nina for dealing with this confusing illness in such an adult manner. She reassured us that Nina seemed well adjusted and saw no reason for any type of treatment.
How could our healthy child who played basketball 24/7 and aspired to play basketball in college dwindle down to a chronically sick child who was now on homebound study without a social life? Most of her friends had drifted away. Her illness seemed invisible to them. There were no visible signs, such as bruises, broken bones, or blood spouting from an artery.
After nearly two years, we decided the traditional medical community was not helping. Perhaps a naturopathic route could. We were told it was coming form an adrenal problem and were given vitamins, detoxifying footbaths, and massage therapy know as Reiki. All were complementary, but did not give her any long-term relief.
Time marched on. In April of 2009, we stumbled across the television show Mystery Diagnosis. This particular episode described Nina’s symptoms in remarkable detail. It was the first time I had ever heard the word Dysautonomia.
I immediately went to the internet to research this illness and people who could diagnose and treat it just in case that was what my daughter suffered from.
I found no specialists in the Pittsburgh area, so called every specialist within the United States. I then faxed all of Nina’s medical information to their offices. We took the first available appointment from the first specialist to return our call.
Finally a Diagnosis: Dysautonomia
Dr. Hassan Abdallah at The Children’s Heart Institute in Reston, Virginia finally diagnosed Nina with Dysautonomia. As sad as it may sound, we were delighted to finally have a name for her illness. The pieces of the puzzle were starting to come together.
Dr. Abdallah started her on blood pressure medication, followed by a vasoconstrictor medicine, followed by a medicine used for people with Attention Deficit Disorder. These medicines all help push more blood to the heart and brain, thus making her illness less violent.
Typically, people with Dysautonomia do not perform well in the morning. It takes hours for their bodies to function and begin their day. Even though we had a diagnosis for Nina, we still could not get her back to functioning like a teenager.
We continued our battle by getting a second and third opinion from the Cleveland Clinic and Case Western Medical Center. It was at Case Western that a doctor finally admitted that they had seen an increase in Dysautonomia since the Gardasil vaccine was introduced.
In addition to her prescribed medications, Nina takes melatonin to sleep at night. She constantly has issues with low Vitamin D, which requires a prescription dose of the vitamin periodically. She takes an anti-nausea medicine as needed. She has recently been diagnosed with PCOS (Polycystic Ovary Syndrome), insulin resistance, and small intestinal bacterial overgrowth (SIBO). She also takes multiple vitamins and natural supplements daily to promote a homeostasis in her body. Her medication routine starts at 7am, continues every three hours, for a total of four prescription medications (14 pills daily), and seven natural supplements (11 pills daily)…
She combats all this by pushing herself to exercise with a trainer who specializes in strength and heart rate monitoring.
Last December, Nina had a procedure performed by Dr. Michael Arata called Transvascular Autonomic Modulation. It is much like angioplasty, but investigates the veins instead of arteries.
It is believed that by looking for venous compression and inflating a balloon at the superior portion of the jugular vein, one will reset the autonomic nervous system. It has proven successful, but turning back the clock of a chronic illness takes time and a lot of life style changes. Nina is still a work in progress.
Seven Years of Post Gardasil Nightmare
Nina was on the homebound program for high school. She never got to play on her high school basketball team. She never got to attend any proms.
Regardless of the adversity she faces, she managed to graduate with a 4.0 GPA and now attends the University of Pittsburgh at Greensburg as a full time student.
She struggles through each and every day with the perseverance of a soldier. Her strength, integrity, and relentless desire to live her dreams inspire everyone who has the pleasure of knowing her.
The light at the end of the tunnel is that most people with Dysautonomia will out-grow it. The doctors agree that Nina’s case is severe and it may be much longer before she gets relief from most symptoms.
Questions I have about Gardasil
I have researched Gardasil for a long time and still have these questions:
- Why was Gardasil developed when 90% of all HPV infections clear on their own, without symptoms?
- Why would the FDA place a vaccine on their fast track program (which means it only requires six months of research) if this vaccine was being administered to little girls?
- Why was fast-track approval granted when an already safe and proven effective means of controlling cervical cancer is available in the United States?
- Why do government health officials constantly ignore the facts posted on websites such as SaneVax Inc.?
- Do medical professionals truly believe all of the girls with new medical conditions after Gardasil are just complainers and really don’t want to have a normal life?
Lessons We Learned From Gardasil
Gardasil taught our family some valuable lessons.
First, never think your doctor knows everything. They are human. They work for you. If you have questions, never stop asking until you are satisfied. Always trust your gut feelings or mother’s intuition.
Never judge a person with an invisible illness. Everybody carries some type of a burden in his or her life.
We are better people because of this illness. We no longer take life for granted. Lastly and most important, we trust God has a plan and we will continue the battle until his will be done.