Atex

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.

About a year ago, we had IgG tests for Yeast and Candida Albicans which came back negative. I would speculate that the gut improvement we have seen in the past year has resulted in the improvement of tics, but I would not expect it to be the single silver bullet and I hesitate to draw any conclusions given that September - November seem to be waning months for her.... but I will say that these past 4 weeks have been the first time in years she's been completely tic free. There are just so many variables, so many offenses to the system, and the gut health seemed to take a LONG time to correct (as I mentioned it was like at least 6 months to start seeing consistent results), so I dont think it was like a light switch for us but it seems to have taken away the consistent offense to her system to let us see all the other things (as I mentioned MSG was a big one we could now identify). Hands down I am glad that we looked into diet. I will mention that she had distinct tic waxing in the 2 weeks subsequent to the Covid booster in Aug 2022.

x2 on Great Plains Lab. We had the IgG Food MAP done through them via the naturopath and the recommendations solved a lot of the digestive issues (took 6 months mind you). The pediatrician is recently pushing us to get the IgA and IgE as these are more specific for allergies. As well as Gliadin IgA which is more specific. The intent for us is to be able to reintroduce some things, since we were off the charts on egg, dairy, and gluten for IgG.

Has anyone here found a particular diary that they found useful in identifying tic triggers (food and environmental)? I feel like I need something more organized than just a plain jane food diary. I was poking around the ACN resources and found a lot of the behavior charts to be useful, but didn't run across any diary setups.

And forgot to mention, one other thing to think about is where you're getting water. Both bottled and public water can be questionable. Ok for the general public but not for sensitive groups. www.watercheck.com has been a good resource. We have had good luck with a DIY RO system from www.theperfectwater.com

We have not tried any selp hypnosis or breathing techniques; however, nightly baths do seem to have a calming affect. We really limit screen time too; yes, its possible in this day and age. We tried CBIT, one recommended by the tourette association nonetheless, but thought the psycologist was just in it for the money. 15 sessions and he was completely worthless before cutting it off. Dazz at motor tic mastery looks interesting. Our naturopath was not at all forcing foods, and if you find one with specific experience in tics may be surprised at some other strategies/ideas you havent thought of. My wife and I found that they actually sit down and listen and try to figure things out; in our area, most naturopaths are doctors who got sick of the issues in the medical profession. I would definitely explore IAQ if you have a centralized heating cooling. Those systems are prone to low level mold exposure.

My daughter is now 10 and I feel your pain, but there is so much more you can try. I think you can approach this in multi pronged way. From the diet side, one thing that stands out to me is "she has acid reflux" which can be a sign of a food intolerance. Have you ever considered seeing a naturopath? One really helped us figure out offenses in the diet that were causing long standing digestive issues; remember, you are trying to eliminate any offenses to her system. Another thing i notice is you list a lot of good food avoidances (artificial colors/foods), but have you considered MSG? My wife is a dietitian, so we were already void of any processed foods, but not MSG. MSG takes so many names and is in a lot of things, and we noticed a big difference in eliminating MSG and stuff with added nitrates (think ham). We never tried essential oils or anything, but did try epsom salt baths which we found does work. We tinkered around with magnesium taurate at times but never took it long term enough yet to determine if it was worth it. I'm in building forensics and think you should also consider your indoor air quality and chemical exposure. VOC's and chemical exposure is a real issue for any neurological condition. My daughter had part day camp for a week this summer in which they had the kids provide all their own food, no sleep deprivation or super excited, and it was the only week of the summer that the tics were elevated. I'm convinced it was something in the old building that they were in; it just smelled funky (lots of gym mats). I think a realtime IAQ monitor for your home to be totally worth it. We didn't realize that we were pegging our VOC's upstairs just by using the range without the vent hood. You should not be using scented anything. Get rid of the dryer sheets, anything febreeze, burning candles. Use real soap. No shoes in the house. Watch the humidity and make sure the AC coils aren't growing mold. There are so many people living in homes with incredible exposure because they're desensitized to scents or dont know how HVAC systems work and dont realize it. Watch the pesticide exposure, consider not treating the lawn with herbicides/insecticides that get tracked indoors. Watch the asphalt sealcoat exposure, again getting tracked indoors. anyhow, yes that's a lot, but i'm convinced its worth it because she was ticcing more a year ago than now.

In general, I think you're probably on the right track to learn more about magnesium levels and get the digestive track in order; as long as your child isn't too terribly adverse to the additional testing. We find MSG as a trigger too and find it to be a challenge to exclude it since it is now hidden under so many different names. Your other son doesn't have outward issues with those things probably because his system has an adequate buffer against tics. He could very well have the same inflammation or immune response, but you're not going to see it as tics. I feel like kids with tics are living at the threshold, and any little thing that promotes inflammation or immune response will manifest as tics. I can equate it to the blown disc I have in my spine; when I got COVID, the inflammation caused the nerve to go nuts and hurt so bad. When other people got COVID, no back pain. I did not have any buffer (i'm short on space around the nerve), yet others did, hence the difference. I recommend really pushing your analysis into the interior environment and chemical free living (it's a rabbit hole if you arent already aware). VOC and pesticide exposures are super common in this country. The list is very long if you're trying to limit upsetting a sensitive system. ... fabric softeners, scented everything, febreeze, synthetic soaps, synthetic cleansers, offgassing carpets/furniture/mattresses, tracking in asphalt on your shoes, mosquito spraying, lawn herbicides, tree fungicides, on and on. We have basically gone scent free, and it's amazing how we can now detect whatever they're spraying in the school emanating from the kids and their bags every afternoon.

Just wrapping up a beach vacation and am seeing a slight flare, even though we've been able to maintain dairy/gluten/egg free the entire trip; albeit, I question how "clean" some of the food is when eating out. If only the ocean water would counter things more!

Madimi, my 9y old daughter sounds very similar to your son, and there is definitely a lot of daytime suppression going on. I think the magnesium baths definitely help, but she has gradually progressed since about 5yr old. What I find really telling is that she has become knowns as the barometer of any type of upcoming sickness in the house (whether she shows symptoms of being sick or not). We have two other kids in the house and the flares almost always correlate just before anyone in the house start showing symptoms of being sick. We tried CBIT for awhile but the psychologist was not helpful whatsoever. On the positive side, finding out she was gluten, egg, and dairy sensitive has really improved the gut symptoms (was always on the toilet) but unfortunately it did not change the progression on the tics.

I totally agree. It takes a lot of work and certain products may cost more but we have found it's worth it. One big hurdle is understanding exactly what you're eating. For example, MSG is hidden by giving it so many different names.

If you're in a high radon area, I suggest a realtime monitor to give you better information. The test kits you mail in are ok, but they sure miss a lot; particularly the spikes in radon concentration usually seen when the temperature dips in the winter. I have the Airthings Corentium Home Radon Detector and it works well.