Excerpt from the blog, Hidden Illness: Our Story of Recovery from PANS/PANDAS/LYME.
STRENGTH HOPE LOVE
Over the years we got a lot of well-meaning, really bad advice. In the beginning, one organization told me it wasn't Sensory Processing Disorder if it didn’t last all day. Our pediatrician said the UTI symptoms of frequency, accidents, and obsessive wiping, might be due to constipation even though I assured them she was perfectly regular. The sudden separation anxiety was a phase. The emotional outbursts that I could not console were typical developmental behaviors. No one knew what to make of it so when the symptoms subsided after a few weeks, we simply moved on.
Melatonin didn’t help. Reward charts brought her crushing disappointment when she couldn’t achieve her goals; dangling a carrot just out of reach is cruel. A psychologist, who couldn't get my daughter to look at him never mind talk to him, decided it was purely behavioral. I was instructed to tell her that these outbursts were "simply not allowed". He told me to take away something of great importance every time she didn't comply. "She will learn" he said, and me, desperate to bring her some relief, tried it. Desperate times. It only took me a few days to come to my senses and realize she could not help herself, but the mama guilt from a few of those nights is raw in my heart when I remember.
This child didn't need to learn these things; she had already learned all of it. She had hit every one of her developmental milestones on time but had somehow lost these abilities that had once come so naturally to her. This child, tortured from the inside, could not simply comply; she was sick and no one knew. I had always parented with a gentle guiding hand, setting boundaries and letting natural consequences aid our children in making better choices. Now I found myself reaching for straws, tough love, rewards, strong consequences, and some ABA therapy techniques. Nothing helped.
When the dark of night quieted my mind, my heart silently screamed out, "HOW could this have happened? Why? What happened to my child?" There had been no major life changes, no trauma. Nothing to warrant such a change in my child. She had been fine. I could remember her being a sensitive but pretty typical child in the not so distant past. What could have gone wrong?
I hope sharing my story can bring awareness to PANS/PANDAS and inspire people to keep going because one day, it will get better.
Hi! My name is Lily, I’m 23 years old and I have PANS. I’ve been hospitalized so many times I can't even count, seen doctors of practically every specialty recognized in the US, and had nearly every type of medical test run on me. I’ve spent 20 years fighting this, with only 5 years since official diagnosis, but today I’m in remission and this is my story.
I wasn’t actually diagnosed until I was 17, but my parents suspect I’ve had PANS since I first had a flare at 13 months. In the 1990s and early 2000s, PANDAS was only beginning to be researched, so my parents dragged me to doctor after doctor with no answers. The most prominent symptom was a head twitch that occurred after any acute bacterial infection, coupled with severe separation anxiety, episodes of rage and significant OCD tendencies. With no seizure activity and the behavioral symptoms chalked up to personality or growing-up, my symptoms faded in and out with each frequent infection.
After having chronic bronchitis for a year and getting the last of my Gardasil vaccines, I started shaking all over my body. It was the perfect storm. I was a senior in high school and the doctors were at a loss. They gave me Valium to put me to sleep each time I started shaking but offered no solution to the endless tics. I missed more than 45 days of school and desperate for answers, my mom started researching online. Once she found PANDAS, everything fell into place. The diagnosis fit me like a glove and we headed out to my family doctor to confirm and start treatment.
If only it was that easy. The primary care physician was convinced PANDAS, which had just started making the news, was a hoax and instead insisted I was faking it and needed to be sent to the hospital for a psychiatric evaluation. He scolded my mom for “trusting Dr. Google” over his expertise and only agreed to an ASO titer blood test after 30 minutes of begging.
NEPANS Board Members & Special Guests
Many Blog entries are long enough to go onto a 2nd page. Please click Read More in the bottom right of some blog entries!