My name is Dave. My 12 year old daughter Blake was diagnosed by a pediatric neurologist four years ago with PANDAS. She couldn't sit up in a chair without falling, stared at the sun with eyes open, crawled around the floor like an animal, started to undress in public, crawled across table in restaurant to eat like a dog off of someone else's plate, drew bad pictures with crayons in her fist, asked for doughnuts every five minutes for three days... many other sudden onset symptoms.
The first ER in Calvert County Maryland made us wait five hours until we left. Prince William hospital in Virginia said there was nothing wrong. Finally, we took her to Fairfax Hospital in Virginia, one of the top hospitals in the country. This had to be more than a week after the sudden onset symptoms.
At the time, we had her in the ER for suspected Lyme disease. Negative on that. She had encephalopathy according to the pediatric neurologist. He had a student with him as he examined Blake. After about ten minutes of just staring at her and rubbing his chin, he got a quizzical smile on his face...
"Did you say that your daughter asked for doughnuts every five minutes for a couple days?" He looked at the student and back at Blake.
"She has PANDAS." The student's looked back and slowly nodded in agreement.
"This is a rare disorder, I've never seen a case in a child this old (8yrs)"
"I'm going to make you a bet. I'm going to run a blood test for strep and it will come back positive. These kids don't get strep throats, they get it as a blood infection that affects their brain and causes sudden onset OCD."
"I can treat this with very small doses of steroids."
Well... naturally the strep test came back positive with titers at 400. She was in the hospital for a week and had every test known to mankind done on her. She was treated with IV antibiotics and never got the steroids. Our insurance didn't include Dr. Young in network.
It's been four years now and the best we have gotten for Blake is on positive Strep tests she gets the normal course of antibiotics. She is 12 years old and weighs barely 70lbs, I can close my index finger and thumb around her biceps. She has good days and bad days. Irrational fears. Hypersensitivities. Cries often without any reason. Hordes food in hiding places around her room. Won't flush toilets or brush her teeth voluntarily. She has new OCD symptoms on a daily basis. Her only treatment is 27mg of Concerta daily.
After the OCD conference in Crystal City and the dinner with Beth Maloney, I found out about Dr. Latimer in our area. I have an appointment for September 28th.
My hopes are high for Blake.
Nice to see you folks have a group and are getting really smart about this disorder. I hope I can contribute to the body of knowledge here.