mom2gsd

My son's PANDAS began in '08 (+Lyme '09)....slightly better in 2012-13....here it is 9 years later....now Epilepsy 2015 (intractable Lennox-Gastaut). I believe it's all related and it sucks!

My son is now 20yrs old, I was once a member of this group years ago. He was 11 when the PANDAS symptoms began in '08, he has autism, received 1 1/2yr of IVIG, with little improvement, then was later DX with Lyme. Long course of antibiotics, plus Dr Goldberg's NIDS protocol with antivirals, after a year he began to make improvements...then had 2 good years....then rages and all of the PANDAS symptoms returned along with generalized seizures that began July 2015 and has continued daily, anywhere from 1-6 times, Tonic Clonic, Clonic, Myoclonic or Gelastic. He's on seizure meds as well as CBD oil, which has not stopped them. It's been a nightmare and he has no quality of life! At the present time our Neurologist is not treating for PANDAS, only epilepsy...but I'm concerned he is missing the key element. Does anyone know of a situation like ours?