I haven’t been on this forum in a while, but wanted to add an update as well. My son was virtually tic free again from November until the end of February. Only a very soft breathing noise at times, which was totally unnoticeable unless you were looking for it. We felt this improvement was due to being very strict with his diet again (organic, gluten/dairy free, dye/artificial free, lots of fruit and veg), staying busy and getting lots of exercise, and supplements (magnesium threonate, elderberry syrup, methylfolate/B12).
Then the tics returned with a vengeance the day after he was given a load of horribly artificial and dye-filled candies and chocolate at an extra-curricular activity (despite our telling them not to give him these things). 😡 That was 3.5 weeks ago, and the first 2 weeks were pretty bad with a major, constant facial grimace reappearing. I was so heartbroken, but at the same time it helped to feel there was a somewhat controllable reason for it happening (diet). Now we are at 3.5 weeks since that happened, and it I see definitely subsiding. Still there but less. I am really hoping that soon it will be minimal or gone.
I have days where I feel optimistic and that this will be manageable, and days (nights) where I cannot stop worrying about what if it gets worse, and all the what if’s. Overall he is a very happy, busy, social kid who is showing up for life just great. He has no idea anything is wrong. I’m thankful for that. It’s been one year now since it all started for us, which is a bit hard to swallow as he now officially meets the criteria for TS. I am still interested in looking into PANS more, since his original onset was very sudden and came soon after being very sick. It’s just hard and very, very expensive here (CA) to find doctors that are knowledgeable. Anyway, long story short, I am grateful for the progress we’ve made, and hopeful that with time and living a healthy lifestyle we will make more progress. My next goal now is working on myself and my own anxiety and attitude. 😅