As a parent of a child with PANS/PANDAS we ask a lot of questions, acting as a detective, trying to get to the bottom of our child’s illness, we want answers, something or someone to blame. We want to know why did this happen? How did this happen? What did we do to make this happen? Why our child? We would do anything to trade places with our child and take away the unbearable hell they’re living in.
Since 2012 I’ve asked these questions of myself trying to get to the bottom of why my daughter all of a sudden seemed to have her brain hijacked. I know that the summer of 2012 everything changed for her and everything changed for my family and would probably never be the same. We are incredibly lucky because there was a distinct and overnight change in her appearance, demeanor, and overall ability to cope with the outside world and all the sensory overload that comes with it. So we were able to recognize and put a relationship to her sudden onset of symptoms, and the lowered immune response she was experiencing prior to her downward spiral.
I think back to the very first episode my daughter had while we were taking a family vacation in Greece and our first stop was Italy. She had what seemed to be a panic attack while we were at the Duomo, a famous church in Florence. Our family has deep roots in Europe and my kids have been traveling to churches, monasteries, castles, museums since they were little kids. It made no sense to me why my daughter at that time 12 was standing outside the Duomo refusing to go in. My family couldn’t believe why we could not convince her to and she couldn’t explain why she didn’t want to go in and view the famous Cathedral of Santa Maria del Fiore. In the end she surrendered to her family.
She was very nervous, I could sense it as we entered. She was not my daughter her eyes were looking suspiciously around. I had not been there before and didn’t know what we were about to embark on. This tiny spiral staircase leading up was so claustrophobic it’s like she knew that something bad would happen. There were so many people ahead of us and we certainly did not see a way down other than go against all the people, climbing the tiny staircase made hundreds of years ago. When we got to the viewing level I stopped to look at my daughter and she was unrecognizable and looked to be in a trance. She looked like the painting had swallowed her whole. I realized my incredible mistake and like a salmon going upstream we trudged downward in the spiral staircase even I felt dizzy and of course in a panic as well. We finally reached the bottom and got ourselves outside and I could not believe my eyes in front of me my daughter looked as though she had seen the most terrifying vision, pale, she was crying, hyperventilating, stuttering, shaking and her teeth were chattering. It took sometime to soothe her and calm her. Rightly so if you take a look at the paintings above and below they are frightening I so regret making her go in to this church. But, at the same time many European churches/museums have similar paintings of battle scenes and other disturbing and gory images which she had been exposed to in the past without bother. I realized at the time when I looked at art, I was just looking at the painting and not taking it all in, what the artist wanted to convey. My daughter was exactly the opposite it was like she was suddenly so sensitive that she felt all the emotions of the subjects in the painting she wasn’t just looking at a painting she was in the painting feeling all the pain and suffering. This was the first of many, many episodes to come we just didn’t know it yet.
As I think back to that day was it really the beginning? No, it wasn’t, there were little warning signs probably for 8 years we just didn’t notice because the signs were very subtle. This episode that happened and everything that happened after were clearly not subtle. It was a perfect storm that had been brewing. We had just visited a relative that had a child that had been sick, my daughter mentioned outside the Duomo feeling sick, throat was hurting and felt feverish, later in the day this turned into a quick viral sickness with sore throat. She was also having a massive outbreak of Herpes Simplex Virus on her lips, she had recently started menstruating, we had just moved into a brand new home, a few weeks before the trip she had multiple vaccinations including Meningitis, DTap, and HPV. She had been expressing feelings of lethargy before the trip to Europe and was looking pale, I had made an appointment with her pediatrician upon our return before we even left on the trip to check for anemia. I call it a perfect storm because was it any one thing that probably caused this episode and opened the floodgate for all the symptoms that would later occur. I think it was the timing and combination of little grains of sand put on the scale before there was the overnight and dramatic change.
When I think back even further about the signs that were there before that we put to her creative and imaginative and sometimes overactive mind, the little hints of OCD tendencies, her at times extreme thinking, (if it was raining there would be a flood)the sensitivities that she had to people and sound, when I think back even further her few fits of rage at 3 and then again around 7 yrs old. They came and went so fast and probably were associated with a sickness of some kind I just didn’t know. I have/had so many questions that will never be answered and maybe in time the answers will reveal themselves. What I will say now with PANDAS/PANS/AE is finding the trigger for the symptoms is the most critical question you can answer if you find yourself in this situation. Finding the true underlying cause whether it is strep infection, viral, bacterial this is what’s important. Studies have shown that the likelihood of a quick recovery of PANDAS/PANS/AE is best when it is caught in the acute phase of the illness. For us we didn’t start discovering the triggers until 3 years after this time and by then my daughters health had really deteriorated and we had to rebuild her immune system. The NIMH had a breakthrough recently and had published treatment guidelines for PANDAS/PANS. Please see the article below which summarizes the findings. Although we healed our daughter holistically and naturally this may be helpful to others that would like more conventional methods.
