Age: 13.0
Sex: F
Vaccine: HPV9
Symptoms: Skin discolouration, Small fibre neuropathy, Social problem, Syncope, Tearfulness
Clinical narrative: Prior February of 2019, patient was a completely healthy, happy 13-year-old.  She played three sports year-round including soccer, field hockey, and lacrosse.  She sometimes played 5-6 days a week and has done this since the age of four.  She also skied in the winter and danced recreationally.  She was an honor roll student, smart, social, and had lots of friends.   She received the HPV vaccine on February 11, 2019, and within a few weeks started complaining of headaches, bilateral leg pain, weakness, and fatigue.  At first, we thought it was growing pains or due to menses but by mid-April she was in so much pain she would come home from school and soccer practice in tears.   That was when we first brought her in to see her pediatrician.  That?s when everything changed and started her long medical journey.   We went to many specialists in search of a diagnosis.  Her symptoms started with severe daily headaches, bilateral leg pain, and exercise intolerance.  She started with orthopedic MD?s, Rheumatology, and physical therapy.  When this didn?t help and there was concern regarding the bilateral pain, weakness, and fatigue she was referred to neurology.  Luckily, we live in a big city and have access to world top notch hospitals and health care.  She was seen at 3 Hospital.  She was evaluated by Neurology/headache specialist she prescribed a variety of different medications that didn?t really help.  At that time, Dr said she was experiencing autonomic nervous system dysfunction and suggested evaluation for dysautonomia and small fiber neuropathy.   Her above symptoms continued throughout the year and now started experiencing syncope, vasovagal episodes, unilateral lower extremity edema/swelling, sensitivity to hot and cold (discoloration in legs after showering), along with numbness/tingling in extremities.  She was sent to a neuromuscular specialist along with a genetic/metabolic physician.  Multiple tests, labs and scans were performed.   She had MRI of the brain, and CT scans ? cervical, thoracic, and lumbar.  She had genetic myopathy testing, metabolic panel, skin biopsy?s, EMG, tilt test, cranial botox, acupuncture, and multiple IVIG infusions. At this time, she was being seen by neurologist for symptoms of small fiber neuropathy.  Even after all the medication trials and treatments over the past year and half, she still was not getting any better.    Her physical aliments were taking a toll on her mental health.  She was no longer able to participate at all in any type of sport and she was missing a lot of school due to her debilitating symptoms and multiple medical appointments.  She needed to go on a plan at school for support and her social life was put on hold. She was also having anxiety and depressive symptoms requiring additional medication and counseling sessions with a therapist.   At this time, she started to have some GI symptoms including nausea and bloating so we went to a nutritionist to see if a healthy diet plan and nutrition may help.   We heard about a clinic and decided to take her there in hopes they would be able to help.  We took a week off in August 2020 and sought treatment at the clinic.  She had a weeklong intensive functional neurology evaluation and rehab.  She had light therapy, ECG testing, chiropractic, neurofeedback, and other treatments.  This was a long, expensive trip that didn?t reap any positive results.   She struggled with her physical and mental health the year following our trip, but things got even worse when she started having major GI issues.   Over the past 10-12 months, she developed severe GI symptoms including nausea/vomiting/severe constipation, abdominal pain, bloating, belching, and diarrhea.   She started treatment with gastroenterologist for this.  It has been so severe that we have had multiple trips to Urgent Care and Emergency rooms requiring IV fluids, IV Zofran, IV Reglan.  She became dehydrated easily and lost weight.  The chronic severe constipation had to be treated with Miralax, suppositories, enemas for complete cleanouts.  She was referred to GI motility specialist who ordered a gastric emptying scan and was diagnosed with gastroparesis, and she was started on Lizzness and Motegrity.   Nausea and vomiting continued so she had EGD with Botox to help with gastric emptying.  This year by far, has been the worst.  Between these daily symptoms and frequent hospitalizations she has missed a ton of school and now requires at home tutoring twice a week to keep up with her school work.  The last four years have changed her life completely.  She has missed out on her teenage years and her entire high school experience.  She rarely makes it to school for a full week. She struggles daily with symptoms and never knows how she will feel on a day-to-day basis.  All of this has had a very negative impact on her physically as well as her mental health.  She needs special accommodations at school and I have been on an intermittent leave from my job to care for her the last four years.  It has affected her relationship with friends and has not allowed her to continue with any sports which was her passion.  It has been a challenge and a strain for our entire family.    She continues today with chronic, daily headaches, bilateral leg pain, weakness, and fatigue.  She has nausea daily, chronic constipation, abdominal pain, and vomiting.  She continues dietary modifications, medication trials, and has routine follow ups with her neurologist and her gastroenterologist.  It continues to be a daily struggle for her, and I hope she will get some relief soon- it has been a long 4 years.  My hope is that Gardasil will take the HPV vaccine off the market, do better education for patients and pediatricians, and raise awareness to let others know that these neurologic symptoms are a real side effect from this vaccine. If I had known, I would not have let her receive this vaccine. I?m sure I have missed some but below is a summary of her specialists, tests, procedures, treatments, and medications.    Diagnosis?s:   Dysautonomia, chronic migraines, chronic constipation, small fiber neuropathy, chronic fatigue, orthostatic hypotension, dizziness, exercise induced myalgia, gastroparesis, reflux. Medications: In past- Topamax, Amitriptyline, propranolol, Gabapentin, Effexor, Vistaril, Amivig IM injections monthly, scopolamine patch, Migraine nasal spray, Imitrex, umbrelvy, diclofenac, Prozac, IVIG infusions, lizzness, Reglan IV, prednisone, miralax, ex -lax, suppositories, enemas Currently-  Nurtec, fiorcet, toradol, magnesium, senna, Zoloft, motegrity, Compazine, Zofran, antacids  Tests/procedures/scans: MRI of brain, CT scans- cervical, lumbar, thoracic, abdominal Leni?s x3, EMG, tilt test, ECG, genetic myopathy testing, skin biopsy, gastric emptying study, EGD with Botox, botox in cranium, sacral cranial therapy, gamma core, neuro feedback, acupuncture, IVIG infusions.  Many, many lab/blood draws.