In 2014, at the age of 18 and a half, Zach was a first semester full-time college student and worked a laborious job roughly 30 hours a week. His life was on track, he was social, active and happy. Zach swam like a fish in the water with a body built for track who walked miles almost every day.
In early October that same year, Zach sustained an ankle injury which placed him out of work while he recovered. During this October 3rd appointment for his ankle, he was talked into a flu vaccination. October 13th, Zach returned for a follow up and was talked into accepting the Gardasil and meningococcal vaccines. It was shortly after this that the first phase of his health decline began.
Zach’s muscles ached. He experienced intermittent joint pain, headaches, chronic fatigue, and a rash that lasted over 3 months, and just generally felt unwell as a whole. Being a mom and a teacher who frequently sees illness, I initially thought it was nothing more than him coming down with something viral, mixed in with possible exhaustion from work and school. But, he kept getting sicker. By mid- November, he was running a fever, coughing, congested, aching, hurting. By this point, it became clear something more was going on as this was not his norm. He rarely got sick and when he did, it was brief and minor. Something just wasn’t right.
I took Zach back to the doctor and he was prescribed Zithromax due to what had now become a viral infection. He seemed to start getting better within a couple of days, but by the end of his course of antibiotics, his ears began to bother him, he was having hearing loss, and he was running another low grade fever. Not being a child with a history of ear infections, this was yet another indicator that something unusual was going on with him. We returned to the doctor and learned he had a double ear infection, so he was placed on a 10 day course of additional antibiotics. During this time, he was often too unwell to attend his classes or work his shifts. His first semester of college fell to the wayside.
Zach’s weight plunged during this period, dropping to 110 lbs. at the height of 6 ft. tall. The symptoms were persistent, often leaving Zach bedridden. Being almost 19 by now, Zach returned on his own to see his primary care physician on February 3, 2015. While we still had not made the connection, it never once occurred to me that the doctor would use this opportunity to inject Zach with another dose of Gardasil in spite of the symptoms he had gone to see his doctor for during this visit, but he did.
On February 5, 2015, a mere 2 days following that February dose, both of Zach’s knees went out on him at work, seconds apart. He was unable to finish his shift or get himself home, so he had to call me to get him. We returned to the doctor the next day when his knees still hadn’t stabilized after rest. This marked the second decline in his health and he was then referred to rheumatology.
All the symptoms he had before were further exacerbated. The pain increased, muscle weakness became a constant. His gait changed due to the pain, the imbalance caused by weakness and the instability of his knees. His legs would occasionally fold like an accordion and his knees would become swollen and red.
By March, it became obvious that he would not be able to return to work anytime soon, so he was forced to resign and spent much of his time in bed.
Symptoms still continued to manifest. By the summer of 2015, he was using a cane to keep himself upright. By this point, his routing history was well under way as he was moved from one specialist to another, then rerouted back to those who had referred us out. By the end of 2015, he had seen a nutritionist, gastroenterologist, orthopedist, head and neck surgeon, an infectious disease specialist, 2 rheumatologists, 2 geneticists, 2 neurologists, and hematologist/oncologist. A gamut of tests have been run on him, but his constellation of symptoms is so complex that they were all left perplexed.
Between October and November of 2015, his glucose jumped 47 points, leaving him borderline pre-diabetic for no known reason, but his doctors missed this, so he was not being monitored. Recently, I took Zach to an out-of-network doctor who ran a series of additional tests and caught this oversight when his H1c indicated he was borderline pre-diabetic now and was an additional area of concern to focus on. Zach has also developed extensive food allergies. His body appears to be perceiving even healthy foods as a threat and is now fighting what it believes to be the enemy.
While other tests have showed some things such as atypical B and T cells, indicating a possible autoimmune inflammatory response, his network doctors and UCLA have not been able to explain this. We also learned in December 2015 that his spine was beginning to wear and he now had a compression fracture on his L3 on L4 and the start of degenerative disc disease in his L5.
Through all this, Zach’s health has continued to decline to include ataxia, paresthesia, intermittent numbness in the face and arms, and now a confirmation of POTS and vasovagal syncope with mixed vaso-depressive and cardio-inhibitory response. His low grade fevers appear to be cyclic as he still gets them, in additional to all the other symptoms that leave him in chronic pain. He is able to use a cane for extremely short distances, but he requires a wheelchair now for longer distances.
I have watched my only child age decades within the span of less than 2 years. It has taken a year and a half later for him to finally find a group of doctors who believe he is Gardasil injured, but they do not know how to treat him.
The idea of any child having to suffer this breaks my heart in ways I never thought possible. This is and will always be my biggest regret.