It has taken me time to fully process our conversation. Weeks, in fact.
My husband and I took our son to see you, the head of neurology at an excellent children’s hospital, hoping to describe his tragic, sudden fall into a controversial autoimmune disease called PANDAS/PANS. Well aware of the controversy, I didn’t expect much from our visit besides a neurological evaluation.
When you readily acknowledged you have other patients who are vaccine-injured like my son, my heart skipped a beat! Maybe, just maybe, we would have an honest conversation. One about healing and possibilities.
I never believed you would jump on board with all our treatments, yet I hoped telling our story could help other kids, especially those who ended up in the ER like my son.
So why, when I was home from our appointment, did I shake uncontrollably? Why did I cry the first, second, and third time I described the visit to a friend? Why did I cry myself to sleep that night?
I’ll tell you why.
You acknowledged my son’s vaccine injury, yet ignored his healing.
You spent 1/4 of the visit subtly insinuating that my son was still 3%…no maybe 1%…hell, probably at least 4.75% on the spectrum.
Instead of being amazed that my son has friends, was voted into Student Council, enjoys paintball parties and sleepovers, loves hunting and playing volleyball and baseball (when not deathly sick), you twisted my son’s words. You twisted his interest in history—you were the one who freaking asked what his favorite subject was in school—into proof that I was wrong about his healing.
Why? Why didn’t you ask me how he was healed? Were you afraid to? Did acknowledging his healing shake you to your core?
Instead of asking, you chose to hide behind a smile and lying eyes. Wow, you were sneaky. A mere five minutes after admitting you were not an expert in PANDAS/PANS, you proclaimed the treatments prescribed by a doctor who IS an expert in this disease to be unnecessary.
The IVIG, which saved his life and continues to heal him, should be stopped. Lyme disease? Well, that doesn’t even exist in Missouri. The multiple viral and bacterial infections my son tested positive for? We were “chasing infections.”
Why? Why didn’t you, even if you can’t fathom how the treatments are working, why didn’t you ask the rationale behind them? Or at least ask if my son was improving with the treatments?
Doctor, both of us had an agenda. You wanted to validate your belief that PANDAS is so rare, so vague and confusing that no proven treatments exist. Oh, how you wanted to squish us into the narrow-minded box of your knowledge!
My agenda? I wanted help for insurance coverage for my son’s IVIG, the treatment that saved his life. I wanted help getting a PICC line or port so my son didn’t endure 6 or 8 IV sticks every month for his infusion. Most importantly, I wanted—no, I demanded—to know why PANDAS wasn’t on the radar for the ER physician and zillions of med students who evaluated my son, who presented with classic symptoms of acute onset PANDAS in the ER.
Dr. Head of Neurology, I have a couple of choice words for you:
In January, my son was dying. He was wasting away, unable to eat or drink, trapped in a mind being attacked by his immune system, in excruciating pain. He needed a feeding tube, and he needed to be in the hospital.
Fear caused me to stay at home, waiting for our PANDAS doctor to work magic with the insurance company for treatments. Thank God I followed my instincts. Thank God I did not take my son back to the hospital.
You and doctors like you would have killed him.
Had you asked me (instead of whisking us quickly out the door) I would’ve shown you how one IVIG took my son from this:
Had you asked, I would’ve explained how the first IVIG saved him from a feeding tube. Saved him from dying. The second and third IVIGs made him able to process reading again. The fourth and fifth increased his cognitive functioning so he could do math again. Number six and seven allowed him to go to the zoo, go to the park, see friends!
Had you asked, I would’ve explained how treating his Lyme disease and Babesia stopped the never-ending joint pain. After starting antiviral medications, my son was able to stop lying in exhaustion on the couch all day and go to his school field day, playing games and running for two hours in the hot sun! You see, Dr. Not-An-Expert-In-PANDAS, those infections we are “chasing” make his immune system continue to attack his brain. Treating the infections makes his brain heal.
I don’t know if you don’t give a flying duck about my son or if you are scared that I know more than you about my son’s disease. I honestly don’t care. My concern is with the estimated 1 in 250 children with PANDAS who walk through your door with OCD or a tic, looking for help.
May God have mercy on those children and families. May the Holy Spirit open your heart and mind, remembering us the next time you meet a patient with these symptoms. Somehow, someway, may our story reach others, sending light and healing and hope.
The strongest, most determined warrior mom you’ve ever met!