Re: PFAPA with PANDAS?
My son has had the PANDAS symptoms for six years. It has gotten worse over time with repeat exposures to strep. It seems he gets relapses even from exposure or virals. It causes explosive moods, obsessions over marked likes, urination frequency, chorea movements which are tics of his fingers and toes, ADD which causes a lack of focus on the right things, inability to fall asleep and to seperate from me.
We have had real trouble getting Dr's to treat and understand his symptoms. Currently at age seven he is on several meds for symptoms 10 mg Abilify for tics and mood swings, 18 mg of Concerta for attention and obsessions, and Omnicef to keep the strep away. We are currently seeing a psychiatrist because the other Dr's are not sure how to treat. I have read IVIG and a steroid burst can help. If anyone else knows how to treat I would love to talk.
By the way, the symptoms originated during a high fever which turned out to strep. I thought initially the fevers brought on the tics but the Dr's said the tics were a sign of the illness. It seems after fevers the tics always come out again. Each episode lasts about two months where he cracks his fingers and toes. The Dr's laughed when I told them I thought the fevers caused the tics.