Imagine watching your 4 year old change, literally, over night into a child that you barely recognize anymore. One day she is happy, healthy and beyond bright – the next day she is consumed with fear and obsessions to the point where she can barely function. This is our story. This is our daughter’s story. This is the story of thousands of children. Perfectly healthy, happy children whose lives are turned upside down in an instant. This is PANDAS.
PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) is a sort of autoimmune condition in children that is triggered by a strep infection. The result is life changing symptoms like extreme anxiety, OCD behaviour, tics, and even anorexia. The symptoms come on suddenly and they are intense.
As scary as this condition is, what is even more terrifying is that most doctors have never even heard of it and the ones that have are far too quick to dismiss PANDAS as a “rare” condition and refuse to investigate it. Instead they are treating these kids, many of them preschool age, with psychotropic medication. There is no single test for PANDAS. In a large number of cases the strep that triggered it is long gone (it’s the antibodies that body produces not the actual infection that causes the problem). It is almost always a clinic diagnosis based on the symptoms. In August our daughter was so sick (she could barely function) that she spent a week in the hospital. We saw a whole team of doctors and not one of them was willing to admit we could be dealing with PANDAS. They were, however, more than willing to write a script for Prozac and send us on our way. We were forced to shop for a doctor that had some expertise in this condition. Luckily for us we found one (in BC) and our daughter is completely recovered (of course a relapse is always possible with exposure to strep). You can read all about our story here.
October 9th is PANDAS Awareness Day and more people – parents, teachers and especially doctors need to be aware of this horrible condition. It is treatable and the earlier it is diagnosed and treated the better the outcome for these children. Left untreated these kids can face a lifetime of mental health issues and drugs like Prozac only mask the problem (or often make it worse). You can read more about PANDAS at pandasnetwork.org.
We are fortunate. We did not take no for an answer when the doctors refused to consider PANDAS as a diagnosis. We did our research and found the help we needed (which we pay for out of our own pocket). Not every family is in a position to do that. And not every parent will challenge a whole team of doctors. Doctor’s always know best right?
My daughter, my four year old daughter, is doing amazing now. She is back to her happy, healthy self. She also understands how sick she was. She takes her medicine every day (antibiotics not anti psychotics) because she wants to stay healthy. She also wants to give all the money in her piggy bank to other kids with PANDAS “so they can buy medicine and get better like me!” It is our mission now, in addition to keeping our own child healthy, to spread awareness about this condition so no child, no family has to suffer through this. This condition is not rare. It is just misdiagnosed and mistreated. It is robbing children and families of their lives. And it doesn’t need to be that way. It’s treatable. We just need to educate those that we entrust with our care. Getting them to open their eyes and accept that this condition is not only real but far more common than they think is a huge challenge in itself.
If you are interested in donating to support awareness and research into PANDAS you can do that through the PANDAS Network here.