September 23 2005 my 7 year old son came home from school with a low grade fever, no other symptoms. We gave him some Tylenol and put him to bed. At 1:00 a.m. he woke up frantic, “bad thoughts” , OCD, etc. We calmed him down and got him to bed. By the morning it was progressing rapidly (our clinical case is on Dr. K. website – 8 year old chicago boy). My son did not have a sore throat and had never had strep before so the thought of strep was the farthest from my mind. By 10:00 p.m. the next day we had to turn off TV as he would get “bad thoughts”. I decided to call a Pediatric Neruologist and Pediatric Psych. at 48 hours into the disease. It was very apparent that somthing really bad was developing. I drove to the Ped. Psych. doctors office (without my son). He asked if he had come home sick and I said yes. He then said to take my son to the ER and have them call him on his cell. He believed my son has PANDAS. I did and we went. My Son’s ASO were at 280-300 ish and his D-nase were at 1350. This is 72 hours into the disease. They gave him a shot of antibiotic at the ER and put him on 1500 mg of AUG.
I went home and called 2 of my friends, who are local doctors, who called Childrens and sent us there. Go figure, children is where Dr. S. is, one of the most recognized doctors to dispute PANDAS. After 8 hours in the infectious disease group we left. My Son was getting better 4 days into the disease.
Remember this is 3 1/2 years ago… even more unknown.
Staying up 24 hours researching I found out about Dr. K. and Dr. Kim at Minnesota and K.W., who at the time was a graduate student under Dr. Kim, studying PANDAS from the molecular level. KW had recieved the largest medical grant possible and he used it to study PANDAS. KW is now part of the Yale group.
7 days in we saw Dr. K. who put my Son on a steriod burst. It got worse before it got better, but after day 12, 80 percent of his symptoms were gone. By day 24 all the OCD symptoms were gone.
What we still had was severe separation anxiety, his tolerence level for siblings and parents were low, and he had rages and hyperactivity.
Dr. K. had to do weekly blood draws to test his D-nase levels. They went from 1300 to 950 after receiving treatment, but then he stagnated.
Feb. of 2006 we received the IVIG treatment. My Son blood was sent to KW and was utilized for his study.
In march of ’06, I can explain a moment when his father and I were sitting with him on the floor. He was tying his shoes. He looked up and gave us a big smile and his eyes sparkled and he said “I’m gonna go play outside.”
We looked at each other and new he was back. We all know that its in their eyes… the worry. This worry was gone.
Its 3 years later. The separation anxiety is gone, hyperactivity is gone, and rages are gone. He still has a short temper which may be typical of a 10 year old.
He is on a daily antibiotic for preventative measures.
My thoughts and prayers are with all of you and your families and hope that we can get the word out about this disease. Every day that passes when a child has PANDAS counts!