Editor’s Note- Mia shares a really raw and honest look at the journey her family has been on since her daughter became sick and finally, years later diagnosed with PANDAS She offers resources and signs as well.
I can barely remember what it felt like to have two happy, healthy kids. It happened overnight, like someone snuck in our home and kidnapped our bubbly, sassy, outgoing nine year old girl. She was gone, in a flash, replaced with a child that was afraid of everything. She use to be my kid that loved school, no reservations about anything.
My daughter developed a severe rapid onset of anxiety/ OCD at the age of 9. She went from being a confident, happy 9 year old to a child who overnight could not attend school, was afraid to get in the car and developed severe separation anxiety from me, specifically. My daughter began to fixate on things, not feeling safe unless she was with me, not able to travel anywhere, unable to get on a plane or drive in the car unless I was in the back seat with her. She became aggressive around the family, school work deteriorated and she became a complete social recluse. I had to pull her out of school and Homeschool her for the last 3 months of 4th grade because she could not be away from me. People thought my child was crazy, educators tried to tell me how to handle my daughter, and her behavior was manipulative.
I have spent the last 4 years searching for the right group of clinicians to help her. We have spent hours in various doctors’ offices. Meeting with, psychiatrists, neurologists, immunologists, infectious disease specialists endocrinologists and psychologists. Each one giving no diagnosis or chalking it up to GAD, or generalized Anxiety Disorder.
In my “mothers gut” I knew, there was something we were missing. We noticed after many months that my daughter’s anxiety would spike right around the time she would get sick. Easter of 2016 my husband got strep. As you can imagine we immediately made the connection that may be what my daughter had. After 3 days on an antibiotic, all of her anxiety and OCD symptoms went away. So, nearly 2 years after this nightmare began, after talking with multiple mothers and reading a book called “Childhood Interrupted” we discovered my daughter has PANDAS/PANS – Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep.
PANDAS/PANS is a syndrome that occurs when a child has an infection that goes undetected and the bacteria or viruses are thought to trigger an immune response resulting in inflammation in the brain.
In August of 2016 my now 12 year old and I, traveled to Charlottesville/UVA to meet with a ENT who diagnosed my daughter with Cryptic Tonsils. A breeding ground for bacteria and viruses, it is a huge contributor to multiple infections. My daughter was put on a long term antibiotic and antibacterial rinse for 30 days. This regimen seemed to cure all of her symptoms. September of 2016 we started my daughter at her third new school in four years. Upon the recommendation of our ENT at UVA we had my daughter’s tonsils removed in October- best decision ever. She continues to struggle on a daily basis with her anxiety and OCD but is learning to manage it with the help of her school counselors, supportive teachers and her brother.
We are continuing to research for the next step to help get her well. IVIG and plasmapheresis are two possible treatments that we are looking into, however, to date insurance does not cover and it is very expensive. I am part of a PANS Research and Advocacy initiative, I hope to be able to help other families learn and help spread the word and educate people about the life changing disease. This disease is far too prevalent and it is not getting enough attention. The only way to help people from dealing with the hell we have dealt with is to help educate medical professionals so that there will be early diagnosis. People don’t like to talk about things that are hard and uncomfortable. But I am here to tell you that if it were not for other warrior PANDA/PANS moms, we still would be looking for answers. I am hopeful that sharing our story will help people to become aware and to educate themselves.
If you think you child could have PANDAS/PANS, trust your gut. There are doctors out there that support the PANDAS theory. Nobody knows your child like you do. Do not just let them medicate, ask to have a full battery of blood tests done. If recurrent strep infections occur, ask to be referred to an ENT. Ask for your child to be put on an antibiotic. Bring up that nasty six letter word PANDAS, not the cute bear. Talk to other mothers, there are support groups out there.
We, as moms are the only advocates our children have. Please, if nothing else, remind your kids, “be kind, for everyone you meet is fighting a battle you know nothing about”. Wendy Mass
“My kid is not Crazy”
“Childhood Interrupted” the complete guide to PANS and PANDAS
Mia Watts is the mom of two awesome kids and married to her husband of 16 years Preston watts. She just re entered the workforce after 12 years of being a stay at home mom. She works as a regional account manager for Greenbrook TMS . In her spare time she likes to spend time with her family and friends, loves to go to country concerts and enjoys photography.