Atex

I'm not completely sure how PANS interfaces with the digestive track and wouldn't want to mislead you. I'd lean towards a leaky gut meaning intestinal inflammation from food sensitivity, but am not sure if the bacteria you cite are an indicator of PANS.

My daughter was never tested or diagnosed with PANS, however, we noticed that a messed up digestive system correlated to OCD behavior (bad behavior in general) and tics. Infections, allergies, and teeth coming in were all aggravating factors. We used supplements and probiotics in a targeted and sparingly way which let us find the food offenses.

Not to make the rabbit hole any deeper, but pesticide use is a biggie as well. I was reminded yesterday when I bought a pair of shoes and the box contained micro-pak..... Micro-pak is in a lot of consumer products. Home - Micro-Pak (micropakltd.com) It may be better than what they had been spraying down boxes with, but I still wouldn't want it lingering in the house.

We are partial to Dr Bronners as they are one of the most transparent ones out there, and we buy Sals and Castille soaps in gallon form which last quite a while. Dishwasher tabs: Seventh Generation tabs and dishwashing rinse agent Laundry detergent: Dr Bronners Sals suds, about 2 tbsp in a full load in our HE washer Laundry Drying: wool balls General Cleaning: Dr Bronners Sals suds diluted to about 1tsp:32oz water General Cleaning for Hard water stains: Dr Bronner Sals suds diluted to 1tsp:32oz vinegar Toilet disinfecting: Hydrogen peroxide (yes the standard stuff you can pick up for under a buck per bottle) Hand washing: Dr Bronners Baby Mild Castille soap diluted with water in foaming hand pumps For hard floors, we have a steam mopper which works well without any soaps/surfactants. When they do need a wash, it's literally 1tsp sals in a bucket of warm water.

Given the lack of any meaningful research in the field MCS, I feel like anyone with PANS/PANDAS or any tic disorder should really be considering a toxin free lifestyle. And I'm not just talking about organic produce at the grocery store, but really going all in.

Dr. Gibson's website seems focused on diet, so that experience isn't surprising to me. Her office doesn't seem to be very focused on environmental or MCS if you wanted to explore non-diet changes. That said, I think you might have to decide if you feel there is or isn't a gut issue. At first you did, but now potentially you feel that there might not because the issues started so early?

If anyone is following the recent end of 2023 news about lead contamination in cinnamon that was discovered in kids fruit pouches, it led me down a rabbit hole of looking into heavy metal contamination of spices. Who knew that certain producers add lead to spices to increase their weight. That said, I found an interesting article about a family who dealt with lead contamination from paint in which the kids were diagnosed with Tourette's Mom with lead-poisoned children says Flint crisis 'hits close to home' - mlive.com This begs the question why wouldn't a neurologist run blood tests for this out of normal practice? Our neurologist didn't even consider blood testing for heavy metals.

If you have any specific questions or suspicions about interior air quality, I am in building sciences and can probably point you in the right direction. Living in Europe is certainly beneficial over the US, but there are a host of things to consider.

I second working with a doctor before ever touching iron supplements. Iron overdose in children is serious. I will say in my own experience, I personally had low free iron from an infection. Understand that the natural immune response involves reducing free iron starve out pathogens.

I would try to be cognizant that it may not be one trigger but rather a combination of triggers that finally breach a threshold. My daughter has been almost entirely tic free for months until yesterday when we took her to a new park that had that poured in place rubber walking surface which I could strongly smell offgassing. Low and behold, she almost immediately started ticcing there and for the rest of the day when excited. Woke up this morning fine again. VOC and chemical exposure is often super nefarious.

I noticed a trend of ticcing more when outside that I suspected was from increased lighting; particularly the glary type of light we get outside of the summer season. I was watching the interview of Billie Eilish and David Letterman and she even mentioned that lighting sets her tics off. Might be a sensory overload type of thing. That said, yeah, soccer fields are sadly pesticide ridden (note pesticides include insecticides, herbicides, and fungicides). Remember, it can be multiple aggravating factors coming together to push him over the limit.

For me, i found that making decisions on timescales that were on the order of many weeks were the shortest that were useful. As others have mentioned, he could literally still be inflamed from having over a month of something that wasn't being tolerated. You might still be within the wait and see period before doing something drastic to the diet.

Yes, we had the eye blinking thing for years that the doctor was chalking up to dry eye and needing drops. We came to our tic realization around 8yrs old which sounds similar to you. I would really start exploring the foods more. Gluten and sugar free is a good start but there is so many more offenders. I would strip out all dyes and processing. A big one for us is MSG and all of its various names.

We all got COVID the past 2 weeks. I lost all taste and smell and fatigued, so things have been slow going. It ran through the kids but surprisingly, we are still completely tic free since the beginning of September 2023 (even with doing a diet challenge with eggs, start of school excitement, 1 cold, and COVID).

I think the "Daily Log for Tic Triggers" would be good for a high level of detail, maybe for folks who are just starting out and have no idea on the triggers and/or are really suffering with the tics and have that incentive to catalog everything. I was shooting more for a condensed version where we already have a significant control on diet, but can make quick notes and be able to compare trends. I might work something up and float it to you.