I’m a Mama Bear. Literally. My son Jesse has PANDAS, so that makes me a PANDAS Mom, which makes me a Mama Bear. Hear me roar…well, growl. Grrrrrrrr!
PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus. It’s a mouthful, and it’s definitely not cute like the bears. It’s unbearable really, and nothing about it is black or white. PANDAS sucks.
In PANDAS, the child’s body becomes confused after a strep infection and creates autoantibodies that begin attacking the…wait for it…brain. Yes, the brain! Yikes! Specifically, the basal ganglia is under fire, which is the area of the brain that controls emotions, some movements, certain learning processes, and other functions.
Under attack, the brain becomes inflamed unleashing a cascade of seemingly unrelated symptoms that may look like mental illnesses or behavioral problems or neurological issues. PANDAS can happen suddenly and dramatically. Seemingly overnight, your child develops OCD, tics, ADHD, anxiety, sensory issues, urinary problems, insomnia, rages, anorexia, and more. Additionally, your child’s schoolwork may decline, especially math and handwriting.
PANDAS symptoms manifest differently for each child. It’s like your kid’s behavior is definitely different from before, and it becomes increasingly harder to find an explanation. Basically, PANDAS looks like everything, but nothing you’ve ever seen before. Your child is hardly recognizable. Grrrrrrrr!
In my son’s case, a bout of strep throat at the end of December 2009 brought us a completely different child by the end of the following month. My sweet, smart kindergartner started getting in big trouble at school. I was a Room Parent, but by the end of the school year, I was not even talking to my son’s teacher.
His behavior was way off at home too with more tantrums at six than he had as a two-year-old. Have you ever climbed into a ball pit to get your child and then carry him out of an indoor playground while he’s screaming at you? I have! Grrrrrrrr!
Since PANDAS symptoms are so sudden and intense and involve the brain, you might think doctors would be a big help. NOPE! Think again. Grrrrrrrr! In early 2010, I took my son into the pediatrician eight times in four months trying to figure out what was going on with him. We also saw several specialists and therapists during that time. He did receive a half-hearted “anxiety” diagnosis, but even that doctor felt there was something more.
I am the one that found PANDAS. Me. Not any of the doctors that we saw. One night in mid-May, I couldn’t sleep because I was worried about Jesse. Using Google, I finally connected my son’s December strep infection to his behavior changes and up popped PANDAS. I sat there in my pajamas sobbing while I watched a video of a doctor describing exactly what had been happening with Jesse. I called our pediatrician the next morning thinking that I had surely found the answer. The doctor said it was NOT PANDAS. Grrrrrrrr! My son did improve over the summer. But that September, Jesse had an onset of anxiety, vocal tics, rages, and OCD that coincided with another strep infection.
Again, our pediatrician said it was NOT PANDAS. Grrrrrrrr! I took my son to another local doctor for a second opinion, and she also said NOT PANDAS. Grrrrrrrr! It was an out of state PANDAS Specialist that listened to me and said he was “95 to 100% sure it was PANDAS because it couldn’t be anything else.” It had taken five long months after I found PANDAS on the Internet, but my son was finally given his PANDAS diagnosis in October 2010 and began receiving appropriate treatment.
It’s hard enough to get a correct PANDAS diagnosis, but PANDAS treatment can be tricky too. This is especially true if the child has previously been misdiagnosed based symptoms that look like mental illnesses or behavioral problems. While some children respond well to antibiotics, it can be more difficult to calm the symptoms in others. Kids might need steroids, anti-inflammatories, certain supplements, and/or Intravenous Immunoglobulin (IVIG) treatment, which are donor antibodies that help the immune system recover.
There may also be underlying immune deficiencies, genetic conditions, allergies, or other medical issues that need to be addressed. Plus, there is another condition called PANS, Pediatric Acute-onset Neuropsychiatric Syndrome, which brings basically the same symptoms in a child as PANDAS. In PANS, instead of strep, the triggers are walking pneumonia, influenza, Lyme Disease, other bacterial/viral infections, or environmental or metabolic causes.
It all gets a bit complicated to say the least. There are some great PANDAS/PANS physicians out there but not nearly enough. It can take months for appointments, which seems like years when your child is dealing with PANDAS symptoms. And don’t even get me started on medical insurance coverage or lack thereof. Grrrrrrrr!
Besides Google, one of the best sources of PANDAS information is other PANDAS Parents. Online support groups, parent organizations, and blogs provide much education on PANDAS. While doctors have come a long way in recognizing PANDAS and PANS, it is mostly because the parents have made this happen.
PANDAS Parents can’t bear (get it…bear) knowing that other families are struggling and desperate to help their children. That is why I, and so many other parents, do so much PANDAS/PANS advocacy and support work. I’m always a little sad to meet another PANDAS Parent, but I’m also glad that they know they’re not alone.
While my son is better now at 12 years old than he was at six, it hasn’t been easy. PANDAS kids can recover or go into remission, but it can take months or even years. There may be new flares or exacerbations of symptoms when they get sick or are exposed to illnesses that trigger the PANDAS autoimmune reaction and resulting brain inflammation.
My son has had several of these setbacks.
Earlier this year, Jesse had a PANDAS exacerbation after a strep infection and missed months of school while receiving treatment and recovering. In PANDAS, there are several steps forward and many steps backward, but there is always hope for recovery. Always.
And what is confusing to most people is that my son does not exhibit PANDAS Symptoms all of the time. He is not always OCD, ADHD, anxious or whatever. These are just symptoms of PANDAS that are not always present. Jesse can be mostly fine for months at a time, but sometimes, he is not fine.
PANDAS is certainly a roller coaster ride. You learn to be prepared for anything.
Yep. I’m a PANDAS Mom and a Mama Bear. My advice to any parent is to never give up when you know something is off with your child. No matter what your doctor says, you know your kid better than anyone else. Also, Google is a worried mother’s best friend. I shudder to think where my son would be if I had listened to that first doctor who told me it was NOT PANDAS. But I’m a Mama Bear, remember? I don’t take the word “no” for an answer. Grrrrrrrr!