Today, October 9, 2016 is PANDAS/PANS Awareness Day all over the world. PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus. PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome.
When a child becomes ill with PANDAS or PANS, the brain becomes inflamed, unleashing a cascade of seemingly unrelated symptoms that may look like mental illnesses, behavioral problems or neurological issues. PANDAS or PANS may hit suddenly and affects each child differently.
The family must learn a new language in order to take care of the PANDAS/PANS child.
I Speak PANDAS. I Speak PANS. Do You?
I speak PANDAS, Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus. I speak PANS, Pediatric Autoimmune Neuropsychiatric Syndrome.
I speak strep and strep titers (ASO/Anti-DNase B). I speak strep throat, ear infections, sinus infections, upper respiratory infections, impetigo, rheumatic fever, scarlet fever, and other illnesses caused by strep.
I speak mycoplasma pneumonia/walking pneumonia and IgM/IgG and how prevalent it is. I speak Lyme Disease and how it is everywhere.
I speak a bit of Babesia and Bartonella. I speak a lot of other bacterial infections too.
I also speak viruses (EBV, HHV, varicella, coxsackie, and more!). I speak parasites, allergies, and environmental factors. I speak how all these things might affect PANDAS/PANS kids, but still somebody doesn’t tell me that they’re sick before being around my child.
I speak Obsessive Compulsive Disorder/OCD, with trichotillomania, rituals, perfectionism, and “just right” tendencies. I speak Tourette’s/tics, both verbal and motor.
I speak general anxiety, separation anxiety, phobias, irrational fears, and depression. I speak emotional lability, irritability, aggression, tantrums, rages, and Oppositional Defiant Disorder/ODD.
I speak Attention Deficit Hyperactive Disorder/ADHD.
I speak insomnia, urinary frequency, age regression, sensory issues, and personality changes. I speak some autism because PANDAS can seem autistic-like and can also be co-morbid with autism. I also speak those little signs that only you know about that tell you that something is up with your PANDAS kid.
I speak quirks.
I speak how my child doesn’t really have any of these conditions except when PANDAS symptoms are present. I speak how my child may still be labeled.
I speak IEPs and 504s and other school meetings. I speak deteriorating learning abilities, loss of math skills, poor handwriting/dysgraphia. I speak homebound services and tutoring. I speak bullying. I speak homeschooling.
I speak food supply, both GMO and organic. I speak supplements and special diets (gluten-free, casein-free, sugar-free, etc…) that might help PANDAS kids. I speak gene mutations (like MTHFR). I speak vaccines and exemptions and shedding.
I speak brain inflammation and basal ganglia and caudate nucleus. I speak encephalitis. I speak autoimmune disease. I speak immune systems.
I speak tonsillectomies and adenoidectomies. I speak loose teeth. I speak “rheumatic fever of the brain” to give people a reference point to understanding PANDAS, even if it only helps a little.
I speak nobody understanding exactly what you mean.
I speak doctors and specialists and whether they even believe in PANDAS. I speak doctors using condescension and intimidation and using the word “Munchausen by proxy” to dedicated parents’ faces. I speak blood draws and lab tests. I speak fearing the emergency room because they may not know PANDAS.
I speak medical kidnap.
I speak traveling far from home to seek help for your sick child. I speak frustration that more doctors do not diagnose and treat PANDAS. I speak outrage that so many parents still find PANDAS on their own in desperate Google searches. I speak doctors who should be thinking PANDAS when there are extreme behavior changes after a child’s illness.
I speak finding new pediatricians/doctors. I speak hindsight being 20/20 when you realize you have maybe been dealing with PANDAS for longer than you thought at first. I speak expensive health insurance plans that may or may not cover PANDAS treatments. I speak co-pays and deductibles and out-of-pocket expenses.
I speak sometimes not being able to use the term PANDAS even thought that is the diagnosis. I speak there is no official PANDAS diagnosis code. I speak wondering how many children are misdiagnosed or undiagnosed.
I speak treatments, including antibiotics, dosages, IVIG, plasmapheresis, steroid bursts, homeopathy, and natural remedies. I speak always having ibuprofen on hand. I speak drugs that don’t work to help PANDAS.
I speak good days. I speak bad days. I speak in-between days. I speak not knowing what kind of day you had until it is over since it can change at any time.
I speak minor flares. I speak full blown exacerbations.
I speak not being able to leave your house.
I speak perpetually waiting for the other shoe to drop. I speak always thinking one step ahead or two steps ahead…or even better, three. I speak non-stop research of PANDAS and anything PANDAS-related. I speak Amazon book orders.
I speak talking all PANDAS all the time…ALL THE TIME. I speak waiting your turn to talk, so you can talk even more about PANDAS. I speak not wanting to speak to anyone because they do not understand. I speak of people telling you that you should have been a doctor.
I speak of hating it when people say that they don’t know how you do what you do, because you wonder what you’re supposed to do.
I speak sleepless nights. I speak worry, doubt, and grief. I speak PTSD.
I speak therapy. I speak coping mechanisms.
I speak struggling with everyday life because you have so much on your mind.
I speak forgetting what happiness feels like.
I speak wondering if you’ll ever smile again. I speak letting go of any preconceived notions of what your life was going to be like. I speak throwing all your plans out the window while you work to concoct a new plan based on your new “normal.” I speak dwindling bank accounts and mounting debts (I rarely speak savings).
I speak hating PANDAS the disease, but not the bears. I speak hating the freaking sight of a freaking panda bear though because it makes you think about PANDAS. I speak freaking panda bears being freaking everywhere. I speak sorry panda bears are almost extinct, but dang it, there’s another panda on somebody’s shirt. I speak hating PANS too (the disease and not the cookware).
I speak people who really care about you and your family’s struggle with PANDAS. I also speak lost friendships and relationships. I speak unsupportive relatives that you thought would understand. I speak a lot of judgment regarding your parenting skills.
I speak doing the best you can.
I speak figuring out what really matters to you. I speak finding clarity for what you want in your life. I speak broken hearts.
I speak PANDAS parents willing to help other PANDAS parents and give support. I speak understanding what you mean when you speak to me about PANDAS, including all that goes unsaid. I speak knowing looks and nodding heads. I speak hugs and pats on the back. I speak emoticons online.
I speak encouragement. I speak tears and sobs. I speak laughter. I speak true friendships. I speak strong connections.
Yes, I speak PANDAS and PANS and am fluent in all the dialects. But I also speak Amazing Kids and Awesome Parents. I speak Perseverance. I speak Dedication. I speak Determination. I speak Bravery. I speak Incredible Love. I speak Healing.
And most of all, I speak Hope.
A version of this article originally appeared on the blog PANDAS Sucks. Learn more about PANDAS there.