Once upon a time, we were a regular family with two kids, a dog, jobs, activities--you know the routine. Then, everything changed overnight. We entered a world not unlike Alice's Wonderland where everything we'd learned was turned topsy-turvy. This is a world that encompasses medical, financial and social challenges, a world that tests us daily, a world that outsiders, sometimes family, often friends, schools, acquaintances, and the medical community do not yet comprehend.
Our oldest child is diagnosed with Lyme Disease and PANDAS/PANS. PANS, or Pediatric Acute-Onset Neuropsychiatric Syndrome, is an autoimmune disease/encephalitis that can be induced by different illnesses: strep throat (PANDAS,) mycoplasma, pneumonia, flu and/or Lyme Disease. In short, rogue cells that should be fighting the disease itself break through the blood brain barrier of the child (or adult) and attack the brain. When the basal ganglia is under siege, the child can experience tics, OCD, rage, depression, separation anxiety, and more.
Our son fell victim to this disease months before his 9th birthday. Diagnoses were difficult, as he was able to control himself during the day and often around others. At first. As parents, we were told that his actions were behavioral or that we needed better consequences and rewards. One doctor decided that our family was too close. Others scrutinized any hint of mental disease that existed in the family, going back generations.
It's rough, baring one's soul to doctor after doctor, only to be critiqued continuously. One cognitive psychologist told us, "I've worked with a lot of disturbed children and I've never seen this before." A neuropsychologist who tested our son while he was depressed and under a brain-fog partially induced by mood-stabilizers told us, "He really isn't bright. He has many learning disabilities and is depressed because he can't achieve." A later neuropsychological analysis with Lyme-literate Dr. Judy Leventhal showed that my son is indeed bright. Many of our kids with PANDAS tend to be bright or gifted.
Eye tics. Throat-clearing tics. Unable to eat certain foods. Angst. Depression. Suicidal thoughts. We hid all the knives in the house, had him sleep in our room. When finally, we got the depression somewhat under control and began noticing silly, impulsive, ADHD-type behaviors and OCD (never the "let's keep this room clean" kind,) we got an appointments with doctors who specialize in PANDAS and Lyme Disease. The diagnosis of PANDAS and Lyme was confirmed by multiple doctors. But it had taken years.
This was just the beginning of antibiotics, tapers of steroids (until we discovered the Lyme), plasma infusions (IVIGs), Lyme testing, homeopathy. Every PANS child is different and there is no one cure that works for everybody. If the underlying infection can be treated, PANS can go into remission. But Lyme and its co-infections are among the toughest of infections to battle.
The journey continues. My son, who was homebound and tutored for 18 months, has shown remarkable recovery and is back in school; he's probably the most appreciative school-going student in our town and is earning high grades. We discovered that my younger child has Lyme Disease and that I have it as well. I've probably had it since my own childhood. No wonder I've been chronically fatigued on and off throughout my life! Lyme can be transmitted congenitally; most likely, I gave it to both kids when pregnant with them. It explains a lot--my younger child's difficult first year of life, for instance.
On a day-to-day level, we struggle to maintain normalcy in our house and to enjoy the always-happy dog who sometimes succumbs to the "House of Stress" and decides to do something about it. Finding pockets of joy, moments of tranquility are a challenge in a home where kids used to pop into our room every night. Where my son wakes up at 2:30 AM and can't fall back asleep. Where my once self-confident daughter feels anxieties and fears she never before had. Where my husband and I rarely get a date night.
Teaching fifth grade has provided me with my "happy place." Bicycling gives me joy. I think best when I'm on my bicycle. Thus, a few years ago, I began jotting down Bicycling Chronicles, which morphed into Bicycling Chronic-Tales. And this gave me the idea for this site. PANS life. Finding happiness in a PANS family.
We are determined to win our war with Lyme Disease, Bartonella, Babesia and PANS. We are equally determined to hold onto the wonderful ties of our close family, to help both our children grow into the caring, creative people they are destined to be and to hopefully help others who are also fighting these infectious demons. Hold onto hope.
Editor, PANS Life