Now before you click away, let me explain. I am an animal lover and panda bears are the cutest. I was even able to visit the National Zoo in Washington D.C. as a kid to see the two pandas China loaned to us in the 70’s.
So why do I hate PANDAS? It is an acronym for what our 12 year old granddaughter came down with in the summer of 2019. It stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep. That is a mouthful for the most horrific time in our family’s life.
When we were given the prompt to talk about an adversity we had endured, I knew what I would write about. I’m just not sure I can tell the whole story–partly because this is my granddaughter’s story. It’s her’s to tell when she is ready and old enough to process it all. And partly because it’s hard to go there. So for the sake of getting the word out about this disorder and to help other’s who may be facing it and not know it yet, I will share my Nana’s heart on the matter.
I got a phone from my daughter telling me how concerned she was about her oldest daughter. She told me she woke up one morning paranoid, crying, in severe pain and unable to get herself dressed for school.
You must know a little background: she is a driven young lady, makes good grades, plays volleyball and loves the independence she is gaining as a pre-teen. But suddenly she reverted back to a 6 year old. She couldn’t write in cursive. She no longer remembered her multiplication tables and she stopped eating and drinking. She had an unfounded fear of water, so she wouldn’t wash her hair, brush her teeth or drink it unless forced.
In a few short weeks she was unrecognizable and we were all afraid.
Our daughter and her husband were frantically seeking the medical community’s advice through multiple ER visits and pediatrician appointments. But she was declining so rapidly it became impossible to get her to leave the house. She lost 14 pounds in just a few weeks time because she wouldn’t eat. She was fading from us. But God.
Finally while searching for answers, they found a 20/20 special on ABC that featured a story about this strange psychotic response children were having after having strep throat. Our granddaughter had just recovered from a strep infection a couple of weeks before this began. They were drawn to finish watching to find out more, and it was hard to do. The way this disorder effects different children is like having a front row seat to a horror movie, but the characters are children you love.
This show was the answer they needed that led them to a pediatric neurologist in Washington D.C. (ironic given my first paragraph). Miraculously they were accepted by the doctor and she cleared her schedule to see our granddaughter. She said that our granddaughter was one of the worst cases she had ever seen, but since they got her to treatment quickly she was confident she would recover. She also added, but it might take two years.
The most frightening part of all this was not being able to rely on the medical community for the help she needed. Several times the emergency room doctors wanted to admit her to the psychiatric ward. They even questioned our daughter and son-in-law’s quality of care. It was hard to know who to trust. Unfortunately, many still haven’t heard of PANDAS, and insurance doesn’t cover the expenses either. It was difficult on so many levels. This is why I tell my part of the story as often as I can and to whoever will listen.
It has now been two years and our granddaughter is fully recovered, like her doctor said. It took time, treatments and lots of donations given by friends and family to see her through. But God! He orchestrated every detail and every step. He carried us through this dark valley of the shadow of death and rescued her from the grip of PANDAS.
For more information on PANDAS please visit the Pandas Network website. And if you know of any children who suffer with strep on a recurring basis, make sure they get retested after their initial round of antibiotics to make sure it is gone. I hate PANDAS and will do anything I can to get the word out. Please share this post if you feel so led. This Nana is grateful our precious granddaughter has recovered. Not all children do; their nightmare continues…
This is my 16th post in The Ultimate Blog Challenge to post everyday in November.