ChantalD

where do I find a Dr who has experience with PANDAS? We are in New York State in the Mid Hudson Valley region..

Hello I am new to this board and I hope that you all don't mind me jumping right in with my questions and concerns.. this may be long.. My son, currently 9 years old.. is a big old puzzle.. He was a very colicky infant...I had several courses of antibiotics (including a course for Strep Throat) before he was born.. shortly after birth he was placed on antibiotics again for a fever.. He was always a child who startled easily.. slept poorly and was just all around miserable.. As an older infant/toddler.. he would wake at night and be awake for hours.. usually talking to singing or laughing.. He never napped... Around age 2.. we noticed he was very sensory sensitive.. he would startle at any loud noise not of his making.. he hated the touch of certain things.. a small bump could send him into howls of tears... and yet at other times he sought out deep sensory feedback.. crashing into walls.. hugs that could strangle you.. He had no concept of what a "gentle" touch was.. He was always a very active child..had little fear of things.. very daring... I always had to be a half step behind him to help prevent disasters.. it was exhausting.. He would have these tantrums that would just blow your mind..we called them Earth Ending tantrums.. they would be short but very intense.. over silly things.. The first few years were rough! We got a diagnosis of Sensory Processing Disorder around when he turned 3 1/2 and he started therapy.. Our Dr suggested we see a developmental Pediatrician and he gave us a diagnosis of severe ODD and ADHD.. We were in shock.. it didn't seem to fit.. While our own Dr agreed with the ADHD she felt the ODD was wrong.. and we were given the option to try medication..which we declined.. and started 4 years of therapy.. Our therapist finally decided our son suffered from anxiety.. separation anxiety and general anxiety disorder.. and we felt those were a bit more accurate than any of the other Dxs we had had until this point..He often spoke, to his therapist, that his parents had died.. (we had not.. but we had added a sibling to the mix by this point) Summer of his 4th year he caught Lyme Disease that was treated with 28 days of antibiotics...he seemed to recover fully. We also tried anti anxiety medication which didn't help and seemed to make things much much worse.. He became hyper anxious.. and hyper active...we discontinued the medication. He starts kindergarten...and we seek out a biomedical dr to see if we can help him naturally.. He diagnosis systemic yeast overgrowth and some food sensitivities.. We treat the yeast for a year and his food sensitivities improve. To us, his behavior also improves to a degree but not in school.. where his anxiety hinders him on all fronts. Frequent urination starts.. he has to go every 15 minutes.. and he DOES have to go.. He starts sleeping poorly.. often finding it very difficult to fall asleep.. he needs his sound machine and a weighted blanket.. at first melatonin helps quite a bit.. but then looses it's ability to help him. These issues continue to this day... We struggle through first grade.. his sensory isseus, attention issues and anxiety continue without change.. Second grade sees similar.. the school talks about his anger issues.. he is placed in a very restrictive classroom environment and eventually placed in a day treatment program run by a psychiatric center.. they want to treat him for all sorts of issues.. blame the parents.. it was pretty awful. He was bored..scared to attend school and his behavior became worse and worse and worse..until we finally pulled him from school. This improved his behavior and anxiety 1000 times.. people who see him now comment on how different he is.. but we still have some issues.. the frequent urination..often increasing when he feels anxious or when he is in social settings (karate class, homeschool coop etc), he can be stubborn and moody but often this is directly tied to how well he has slept. His sleeping is still awful... He had strep throat about a year ago..was treated for a week on antibiotics... I should also add that he has tics.. he clears his throat constantly.. is always picking at his nose... He can be impulsive.. but at other times he isn't.. He can show a lack of focus.. and yet at other times have very good focus.. even on things he isn't interested in.. If I read through the symptoms I can say that he exhibits many of them...but none of them came on suddenly.. he wasn't "fine" and then not fine.... So... thoughts?