PANDAS: Day 6

Thursday.  My husband, I, my mother-in-law, and our two girls drive to Tulsa, again.  I’m very disillusioned with doctors at this point, but still hopeful that maybe someone can help us.  This doctor wanted both parents in the initial consult, but not Haley.  Their office is well done, in a large office complex.  The Tulsa Center for Child Psychology.  We are seeing Dr. Richard Walton.  The waiting area is professional, but child friendly.  The receptionists are professional.  We fill out a novel worth of paperwork.  Good, in depth questions.  I told my husband we should get a copy of these and have every potential suitor fill them out before they can date one of our daughters.  I found out things about my husband I never knew, just from the paperwork!

A golden labrador trots around the halls, the kids seem happy to be there.  I am not.  Just entering the building, ANY building, relating to mental health, makes me cringe.  The stigma.  My own judgmental attitudes.  This wasn’t part of the plan.

They call us back to his office.  A beautiful office, large windows facing the park.  Nice decor.  Comfortable, but not cheesy.  (I’m a designer, these things matter.)

He sits us down and introduces us to his intern / med student, asks if she can sit in on our appointment.  She has a brilliant smile.  He’s not condescending at all.  He seems confident, and capable, and very very good at what he does.

He looks at his notes for a moment, looks up at us, and says the words that give us hope for the first time in days…”Well, I could keep you as my clients for years, or I could tell you your daughter has PANDAS disease, go get her tested for strep, get her on antibiotics, and she’ll be fine.”

If it had been appropriate, I would have kissed him.   He said he was almost positive she had Strep, and that this was a classic case of PANDAS disease, but that it would all clear up with a round of antibiotics.  He told us to have our pediatrician do the rapid strep test and the blood test to see if it was underlying strep, which sometimes doesn’t show up on the culture.  If there were any residual OCD symptoms, then we could, of course, bring her back in to see him, but he was certain she was going to be fine.  He was absolutely shocked at how quickly we had gotten in to see him, and said, “Well, God must be with you, to get in this fast!”  A believer, and an absolute God send.  We left his office absolutely overjoyed, praising God for an answer and a direction.

I called our pediatrician’s office in Oklahoma City and got an appointment for the next day.  We took the girls to the park.  Then to celebrate we went to the mall to Chic Fil A.  This was a huge mistake.  Somehow in our joy we had forgotten how painful eating was.  Terror and panic are one thing at home.  Completely another in a mall cafeteria.  A sweet Indian gentleman comes to the table.  He says, “Why can’t a bicycle stand alone?”  “Why?”  I play along, knowing he’s just trying to help.  “Because it’s TWO tired.”  He smiles, sweetly, and walks away.  Days later, as I repeat that silly joke in not so silly circumstances, my girls eventually get it and laugh.  That day, I ended up having to physically pull her, screaming and raging, out of the mall.  I’m certain everyone was staring, judging, what a horrible mother I must be.  I promised I would never, ever, judge another mother with an out of control child again.  They all had no idea what was happening in the mind of my little, sweet, fork wielding, screaming, out of control child.  We finally got outside and she collapsed in a heap on the sidewalk.  Weaping uncontrolably.  A young man and his girlfriend walk by.  “Awwww now, did mama hurt the little baby?”  He says.  I know he’s trying to help.  I just smile and cringe.  My husband pulls up with the car.  I wonder how many people called DHS on us that day.

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This blog is written by an anonymous mom. PANDAS disease is ugly. It’s practically unheard of, but it’s not rare. 1 in 200 kids has it. That’s right up there with childhood diabetes…but my pediatrician had never heard of it. This leads me to the question, how many kids out there are misdiagnosed, drugged for “behavioral issues”, OCD, schizophrenia, ADD, Autism, ADHD, Anorexic, or taken from their “bad” parents by well meaning doctors, teachers, and lawyers who don’t know about PANDAS. How many parents are searching for answers every night, in silent agony over losing their child, and have no one to talk to, no one who understands. This blog is for those parents. Those doctors. Those teachers. But mostly, it’s for those children. The ones with the fear in their eyes and the haunted look. The chapped and bloodied hands from washing incessantly. The lost childhood.

Lord, multiply this, share it with those who need it most. I don’t have time, or resources, or knowledge to get it into their hands. If it will bless them, let this reach them. In Jesus Name I pray for each hurting child. Amen.

Disclaimer:
This blog exists for informational purposes only. Posts should NOT be regarded as medical advice.
No author or commentator shall be liable for advice given.

It is every parent’s responsibility to determine whether camel milk, donkey milk, specific supplements, the ACC protocol or other biomedical interventions are appropriate for their child.
Furthermore, dosing for vitamins and supplements needs to be tailored to an individual’s needs with the help of a professional.

Thank you for reading the blog, please share it with those in need of hope!

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