Finding the right doctor matters. We know there are families where the stars align and they get seen by the right doctor at the right time and get the right treatment. But this family with 2 children with PANS had to see 12 doctors with many different specialties before they finally got the IVIG that was transformative. Don’t give up!
We have 2 children with PANS.
Our daughter first exhibited signs of PANS the summer before kindergarten. She suddenly developed severe OCD (hand washing, up 1 stair and down 2, lucky numbers, bizarre rituals she had to perform to keep “bad things from happening” or just to feel comfortable, fabric phobias, etc), night hallucinations (would be convinced she was covered in bugs all night long), severe separation anxiety, and major food fears. Prior to this, she was a happy-go-lucky and very independent child without a care in the world. I finally got her in with an immunologist near our home after almost a year of symptoms and months on the waitlist. She started her on high doses of Advil which worked wonders. She went into complete remission for a while.
Several years later our son had an incredibly severe case of PANS come out of nowhere at age 14. He went from being a respectful straight-A student with friends and a balanced normal life— to suddenly having severe OCD, hallucinations, bed wetting, inability to sleep, failing grades, anorexia, an exercise addiction that had him exercising around the clock, fear of bathing, and intensely violent rages that would leave our home covered in broken glass and holes in the walls. And this was just the tip of the iceberg. We were desperate to get him help but were forced by a psychiatrist to hospitalize him in a psych ward for weeks on heavy antipsychotics with no improvement whatsoever.
He finally saw my daughter’s immunologist (after months on the waitlist) who began him on high doses of prednisone. We saw immediate improvement. He was not back to himself completely at all but he was able to finish school that year after having missed months. Bloodwork showed an immune deficiency so he started low-dose IVIG every 3 weeks. We saw immediate improvement after the first dose of IVIG. He gradually returned to his old self over the months of IVIG treatment. After about 9 months we felt he was 100% back to himself. We continue the monthly IVIG and he continues to do wonderfully. He will be graduating from high school soon and is headed off to a great college.
While all this was happening in the beginning with our son our daughter (who had PANS in Kindergarten) relapsed again and was also started on monthly IVIG. She has also done beautifully on it. All her tics, OCD, anxiety, hallucinations, etc have vanished. She happily goes off to school sleepovers and eats completely normally.
I urge any parent dealing with this nightmare to seek treatment from an immunologist experienced with PANS/PANDAS as they have a unique perspective on how to treat this immune disorder and how to use IVIG properly. We saw approximately 12 different doctors in a variety of disciplines before we finally got the answers that worked for us. Don’t give up! There can be a happy ending still even though you are in dark times now. You will make it!