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?
If you are on Social Media at all, then you have seen the multitudes of posts about PANS PANDAS Awareness Day today. Some posts have just the facts. Some posts are personal. NEPANS is made up of both professionals working and those who are parents to with children with PANS and so we try to cover both points of view. I myself am a Mom who wants to support families and help provide resources to professionals so little kids like my own are helped quickly and thoroughly. Below is a short view into what it was like when our son first had PANS symptoms. It is not the full story. But a glimpse into our life with PANS. After you are done, please share at least one of the resources on this website. Awareness really does spread one person at a time. It was one person that told me to look into PANDAS. You never know who you can help by sharing what you know. And last but not least, tomorrow might not officially be PANS Awareness Day but the sharing should not stop. Thank you for help. Thank you for reading.
Gabriella True, NEPANS Board President
My Story - PANS Project
The month of August has always been a month of celebrations, trips, parties, and friends. August 2009 was no different – A trip to Camden Yards, a visit with the Orioles in their clubhouse, a meet and greet on the field with Red Sox, a game of wiffle ball with Orioles mascot on field in front of fans, a camping trip with friends, a deep sea fishing trip, an amazing party with friends, family, and new neighbors. I always had friends laughing and hanging without any anxiety. I was excited for school, alert, outgoing, and absolutely no behavior issues or anxiety.
September 2009 - I missed the first week of school because I had strep throat and an ear infection.
October 2009 – I had H1N1 and was quarantined – it was very scary.
November 2009 – I was required to get the H1N1 vaccine to return to school.
December 2009 – Symptoms started to appear. Gazed look, large pupils, blank stare, no expression, pale coloring, puffiness, sleepiness, anxiety.
February 2010 – After my first Grand Mal Seizure - The beginning of tests. EEG, CAT Scans, MRI, Spinal Tap.
During the summer of 2009, after divorcing my husband, my son and I moved into our new home. Shortly thereafter we experienced many losses, including his 19-year-old babysitter and “big brother” to a car accident and his 21-year-old cousin to cancer. My son was already in therapy to help get thru the divorce and move. According to his therapist he was engaged and accepted the losses.
The Day it all Started
Suddenly in February 2010, during school vacation, life significantly changed. TJ was attending zoo camp as he had several times previously. When I picked him up on Thursday, the counselor who had known TJ since he was two, pulled me aside and said he acted very strangely in camp today. He was withdrawn, hid under the table, wouldn’t eat, and wasn’t his usual happy go lucky kid; she was very concerned. I explained that he was going through a lot and maybe it finally caught up with him. His grandmother watched him that night while I worked. At 8:00, she called me very concerned and asked me to come home right away, “Something was wrong with TJ”. TJ had cornered himself in a fetal position, soiled himself and was violently jerking. It was very scary. Friday, my good friend agreed to watch TJ while I had some appointments. He told me that he thought TJ maybe having seizures; he jerked all morning and wouldn’t eat or get off the couch.
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