Wednesday: Today was a battle. We somehow got everyone ready and out the door in time for our appointment with the quack. Excuse me, Doctor. I’m not bitter. Really. Ok. Maybe I’m still irked. But I’m forgiving her. RIGHT. NOW. DONE. But you have to know what this was like, because I’m sure it’s happened to many, many, many other parents.
We walked in her waiting room. The paperwork is on a clipboard for us to fill out while we wait. There is no receptionist. Loveseats covered in flowery fabric. There is a bamboo eighties styel bookcase. On it is a big yellow and black book, “Gastric Bypass Surgery for Dummies.” Why we didn’t walk out the door then is a testament to our desperation.
She comes in and calls us into her office. She has the look of someone who has had gastric bypass surgery. Skin slightly too large for her frame. Sweet, condescending voice, slightly too high pitched to be real. She insisted we bring Haley with us to the first appointment. Haley, of course, is terrified and clinging to me, not saying a word. I don’t feel like I can be as blunt as I would like to be, for fear of hurting my daughter’s feelings, since she’s in the room. The 45 minute session is ended by her receiving a “phone call” on her cell phone, and she leaves the room, then waves us out while scheduling an appointment for the next Monday to discuss treatment and diagnosis. I ask, as we’re ushered out, “But is it OCD? What about medication?” “Oh, you want medication? I thought you didn’t so I didn’t recommend it, but if you do, we can definitely medicate her!”
“Oh no, we don’t want to medicate her.” I said.
“Oh, then of course we won’t medicate!” She replies. “These things take time, sometimes OCD sets in at this age, it just takes years of therapy….”
I went to the car in a rage. Her best tips were to “Think happy thoughts!!!” REALLY!!! I learned more in 15 minutes on the internet. We cancelled our monday appointment while still in the car on the way home.
Nothing is improving. I’m functioning on pure adrenaline. Every minute I have that isn’t spent trying to keep our family functioning is spent praying and researching. I found an article on Dr Mercola’s website that looked like what we’re dealing with, but he never calls it PANDAS. He quotes Dr. Natasha Campbell-McBride and the GAPS book and pediatric OCD symptoms that are linked to leaky gut. If he had called it PANDAS, I would have been able to diagnose her completely on my own. Still, it strikes a chord with me, and I begin to look at our diet as a link in the chain.
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.
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