Atex

Hi there, just thought I'd post an experience for anyone searching. My daughter was on the usual path of motor/vocal tics for a few years starting at around age 5/6 till we really explored diet/environmental triggers and completely eliminated tics right around the age 10 mark, and she has been completely tic free for about 14 months. That includes many times of high anxiety, sickness, pressure, etc that can come with being a 10 yr old. In the past 6 months, we have tried challenge tests on a few foods. Eggs went well, and boy that made life easier. Dairy on the other hand was different. We tried challenging her with Fairlife for 2 days (lactose free milk, but it's still cow milk), and sure enough, mild tics showed right up and lasted approximately 12 days, then back to nothing. I only mention this because if you imagine a child who's system is being offended by multiple things, for a longer period of time, you can see how difficult it can be to isolate what is or isn't the offender.

Melbourne Australia. That looks like an area with high humidity and moderate temperatures. I see a LOT of problems in homes with those conditions because there's no AC running to control humidity and you're constantly battling condensation forming on everything during normal daily temperature changes, which in turn means you have widespread mold growth (doesn't even need to be gross visible growth over everything). Your drywall and blinds in the photos look like a humidity problem to me. Not sure about the setup, but it could be a prime candidate for a dedicated dehumidifier to help moderate RH to the 50-60% range.

I can really relate to your comment about feeling like you're in a trance, like it's almost unbelievable that this has happened. And, I totally get your observation about the focus on the severe tics; I think this is a big reason why the condition is so under reported. We were about on the same track with my daughter and really turned things around at about 9.5yr old age once we identified a few of the main triggers, and they were not obvious. If you would like to know more, feel free to reach out to me.

We mixed half a capsule's worth in with breakfast and bath soaks in the evening. Definitely took down the "peaks" on bad days.

In our case, the sensitivity appeared to be amplified by an inflamed system. So once we figured out her triggers, the sound sensitivity went way down along with the tics. Note, excessive startle reflex (hyperekplexia) as well as misophonia can be tied to volume sensitivity.

I have thought about this as well, and best I can deduce, its because TS is complicated with the body's system being affected by multiple triggers, which differ from one person to another; which make it harder to study, and when mainstream docs don't have mainstream studies, they stay away. It kinda reminds me of how the medical profession wouldn't believe that lyme disease existed for decades

fgtr, Your pediatrician and neurologist sounds about as helpful as ours when our daughter around 5yr old. We had the same waxing and waning as well, and sensitivity to sound. Sometimes the anguish a parent feels for a tic is worse than the tic itself, but in general, I think that working with a knowledgeable Naturopath, Allergist, and Indoor Air Quality specialist can provide some of the most useful information to identify what is putting the child over the threshold. Note, a bad allergist can be very misleading so you do need to do homework. Start thinking about things that might be triggering allergy (immune) response: pet dander, mold, pollen. Start thinking about chemical/VOC triggers: paints, febreeze, garage chemicals, lawn chemicals, etc. Also note, the diet that seems completely normal for the vast majority of kids is incredibly inflammatory and is not tolerable for TS kids. High sugar drinks and candies with food dyes, processed everything; given not only by the school lunches but directly from the teachers, is begging for tics for a child with TS. BTW, our daughter is now completely tic free at age 11 (1 year and counting) so we must have done something right.

Yes, inflammation by immune system response (allergy or other) seems to be a common theme for both PANDAS and TS. My daughter's tics drastically improved around the same time that we transitioned away from canola and vegetable oil for cooking (it was one of many things we did). PS. Keep your notes on inflammation reduction around in the event you ever have lower back nerve issues. The similarities are shocking. If you wonder why tics and lower back pain increase around dinner time, there is definitely a daily immune schedule going on.

Once we got a handle on food and environmental offenders, we were able to identify particular triggers because the flare would manifest within an hour or so. A journal is an excellent idea. I have been meaning to create a slimmed down journal format eventually. What will really spin your noodle (and is why some medical professionals mistakenly think this is all hogwash) is that flares can be caused by concurrent offenses to the system; think loosing teeth, pet flea and tick applications that wear off on you, chlorine swimming pools, seasonal allergies, lawn chemicals, etc. We did not dabble in detox too much as we tried to stay away from supplements, but rather relied more on staying hydrated (no bottled water mind you), salt baths. If we had not turned things around like they have for us, I would have considered trying Meriva Formulated Turmeric as this worked 10x better than ibuprofen for the adults in our family (back, knee, migranes, etc).

FWIW, my daughter's tics were very much affected by immune system activity. Hers would ramp up in the days leading to a sickness, and then would completely go away once the sickness symptoms came out.

Just make sure you're aware of the use of nasal sprays and resultant rhinitis medicamentosa as I understand that it can make nose bleeds worse. Ayr Gel worked for my bleeds and coats the nose even after blowing.

Man, some of the posts here really bring back memories of sleepless nights. What I have learned so far on this journey is that I think there's a heck of a lot more individuals with motor and vocal tics than the medical profession wants to believe. There seems to be a vast number of cases out there that don't elevate to the level of Coprolalia; yet that is what's noticed and publicized. I also feel that the "moderate" cases are poorly understood (poorly funded research) and is probably why the medical profession seems completely blind to any other solutions than medication. Moreover, i dont see a whole lot of doctors with enough depth of knowledge to wholistically put it all together. All i know is that my daughter progressively got worse up until age 8; at which time we became aggressive in diet and environmental control, and now at age 10 she is completely tic free. Like zilch since July 2023 except maybe once when she was sick. Before we did anything she was ticcing upwards of 40 times per minute, had OCD tendencies, and had an aversion to loud noise. I find it really interesting that she can tolerate loud noise now.

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.