Brand new to this forum and honestly believe I may finally be going in the right direction.
After 2+ years of ER visits, doctors visits, meds, meds, meds my son is in a very severe condition.
Past 2.5 years with my son Jonah have been a nightmare and nobody ever mentioned PANDAS/PANS in all that time.
For 14 years Jonah was a loving life kid, swimming, playing, beach lover until something took all this from him!
(Jonah has been non-verbal since the ages of 3 and is now 17, lives near Palm Desert, CA)
I recently purchased the book "Your Child Has Changed" and oh my goodness I have been saying that for years to death medical ears.
The significant regression in my son is so crazy obvious and yet I often feel powerless to help him.
Looking back I can recognize that Jonah did suddenly develop OCD when he couldn't walk normally anymore completely out of nowhere.
He would need to touch posts, walk backwards and forwards frequently and would freeze often at cracks however all the "experts" told me relax it's just another autistic trait.
So I did, for a while...and now 2.5 years later Jonah cannot go anywhere without serious self injury, panic attacks and massive anxiety.
Last 2 years I have ...
Worked with child Psychiatrist with over 20 years experience at one of the largest children hospital in our area prescribe a ton of SSRIs and other brain meds to no avail.
Jonah started having seizures 6 months later but only once every 3 weeks on the dot! No seizure medication has ever altered frequency.
(In fact most of the time the seizure temporary stopped the OCD behaviors and made his symptoms less severe)
2018 UCLA psych "experts" hospitalized hime for 4 weeks put him on massive amounts of Prozac and sent Jonah back to me much worse than he came in.
2019 Sutter Psychiatry in Sacramento performed ECT as his aggression during transitions was getting too severe for anyone to handle - didn't help his anxiety or OCD at all.
I feel very angry at the medical field and (annoyed at myself) because my son is so severe and now incapable of basics tasks he could do years ago and yet a possible diagnosis exists.
I have now started working with a MAPS doctor and getting hair samples, labs tests started) but my fear is that Jonah could have had PANS for close to 3 years now.
Where do I go from here? There is a place in Irvine, CA says they diagnose PANS https://www.integrativemedicineoc.com however have left them 3 messages and no reply.
His current doctor has not even heard of PANS 😞
Jonah really needs some urgent help as his life is wasting away.... any advise would be greatly appreciated.