Dear doctor who pretended to give a crap about my son,

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:

 

THANK. 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:

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To this:

IMG_3827

 

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.

Sincerely,

 

The strongest, most determined warrior mom you’ve ever met!

6 thoughts on “Dear doctor who pretended to give a crap about my son,

  1. Awesome testimony of your fight to save his life. Thank you Lord Jesus for helping her get the life saving treatment that he needed to LIVE…and now to begin to thrive with the knowledge that she acquired through this hellish journey from death to life.

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  2. As a doctor once told me, “What you do know is sometimes the very thing that keeps you from learning even more”. This doctor is so caught up in his own knowledge, he has shut the door to learning anything new and different. Keep plugging away and being an advocate for your son. God has given you this mission to help others like Drake. God knows your tenacious personality and He chose you because He knew you wouldn’t let Him down!!😘

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  3. Oh Jaime, I am so proud of you and how you have taken Drake from dying to living. I have no idea why it has had to be so hard for you to get treatment, but I am so grateful you are so tenacious.

    If it makes you feel any better, Neurosurgeons think that Neurologists don’t know anything, either. In fact, they have told me as much! They just prescribe meds, that’s all.

    You are all always in my prayers. You and Mike are two inspirations and I tell people your story all the time! (I reel them in with the 10 kids thing of course :)) I pray your experience can help others who don’t have the knowledge or resources to come to your conclusions.

    Love,
    Jenny

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  4. I sincerely hope you sent this to him. How many lives might be saved!!!!! Thanking God for giving you wisdom and Drake healing and that there were others out there willing to listen and help!!! So cheering you on!!!!

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  5. Please, oh please, tell me you will print this off and send it to Dr. GivesAcrap. Sometimes I wish the lofty in academia could actually hear the true feedback their visits incur. I will keep praying for you and Mr D

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