Thank you Bobh for replying! I figured I'd give you a snapshot of our story just to elaborate : I have two boys 10 and 9. 10 year old was extremely active as a toddler and aggressive / sensory seeking. He was a normal baby but changed around age 15 months. He was finally diagnosed with ADHD and sensory at age 5 and we worked with a nutritionist (Kelly Dorfman) on his diet (we lived in Bethesda) and a therapist/OT too and he had a good last year of preschool and seemed to start growing out of his behaviors.
As he grew older his aggression lessened but he did have a throat clearing tic and asked the same question over and over for several years up to about age 7. He developed an extreme aversion to meat. Lots of cases of strep and croup (every time he gets sick he has croup cough.) He has a 504 plan but school is generally good -is still hyper (occasionally, when he is sick or possibly when allergies are bad) and is on 15 mg foculin. Sensory issues seem gone.
My 9 year old developed normally until about age 2.5 when he started showing similar hyperactive behaviors but not as aggressive. He was very sensory seeking and pushed and hit kids and was in their personal space/didn't seem to get their cues. He was on and off dairy after 5 days in the hospital with diarrhea at 10 months so his diet has always been restricted. He has chronic constipation, asthma, vocal nodules and had his tonsils and adenoids out in kindergarten. He was diagnosed with PLMD in first grade.
He was put on an IEP in his last year of preschool (we'd moved to Boston by then) and progressively added more symptoms as the years went by like rigidity, sensory issues with clothes, extreme difficulties with transitions and change in routine and tons of separation anxiety and fears of being alone. In the past 3 years he's developed rage episodes where he goes from being "stuck" to starting to explode and throw everything in the room, cursing and hitting and crying. These episodes have gotten so frequent that we almost had a crisis unit come to our house the other night. In the past year he's taken to coming home from school, removing his clothes, wrapping himself in a soft blanket, and watching the same Minecraft videos over and over. He mutters under his breath and makes repeated sounds, and every few minutes makes jerking movements with his body. We started him on SSRI's in the fall and this behavior had a huge uptick. We are off Prozac as of today. He's now got an RX for Risperdal to use "as needed" for the rage episodes. He also takes 15 mg foculin which helps with school and Kapvay (clonidine) in the late afternoon. When I described his "tics" to our new doctor he mentioned PANDAS which I'd read about but didn't sound like Sam because nothing came on "overnight" but has gradually built up over years. But now that I've read stories on the web about other PANDAS families I think both boys might have it and it started very early on when they were toddlers. Do you think this is possible? We had both boys strep titers tested. Sam's was in the 300's and Will's was 540. Sam took a Z pack for 5 days a few weeks ago and Will is currently on 10 days amoxicillin. Dr is not a PANDAS specialist and doesn't buy my theory that they both have had it for many years. Have an appt with Dr W at Children's in September (on the waitlist for something earlier!) and called the Pans/Lyme treatment center in Cohasset, MA but it's expensive and not covered by insurance.
So, this is where we are right now and not sure what to do next!!! Really want to get a handle on things and maybe get more testing done before things get worse.
Thank you for any insight!