Atex

Not to get too graphic, but it was loose stools a few times a week over a period of a few years. Pediatrician's repeated response was "It's no big deal, we're just glad it's not constipation". I want to say that the loose stools came before the tics started around the kindergarten age (started with eye blinking). The symptoms were our first clue, then we had an IG panel run which showed elevated response to a few things, including dairy (i wouldnt put too much stock in an IG panel however). Ultimately, we did an elimination diet under the direction of a naturopath and dietitian (my wife), and the stools gradually got better over a period of months, so that was really our confirmation. Supposedly celiac's also have a long heal time so I think in general if the gut is angry it takes awhile. She does NOT tolerate lactose free cheese and milk and that was a good challenge test after the elimination diet. I think that means something but haven't researched it too much. I made a thread about this the other month where she's been tic free for awhile now and we tried lactose free milk and it triggered loose stools and tics. She regularly has dairy free cheese, butter, and milk without issue. Cheeses usually by Violife or Daiya. Butter is by Melt Organic or Earth Balance. Milk is usually original almond milk.

It took us a good 6-12 months to heal our daughters gut from a long term dietary allergy. The tic improvement lagged the gut improvement by a few months. While hers was dairy and maybe gluten allergy, I would not be surprised it if took yours just as long. Our naturopath also had her taking NAC as a way to help healing; whether or not its appropriate for Candida would need to be discussed.

It sounds like you're already in a good mindset; it is a rabbit hole mind you . My wife is a dietician and we were organic as well back when my daughter started ticcing. You may be surprised by how many foods labeled organic contain MSG or glutamates (like yeast extract or "natural flavors"). Our naturopath did really help us figure out what to eliminate. Any correlation to red tide?

You can remove one thing at a time and see if it has any affect, but unfortunately it often takes on the order of weeks to months for the system to calm down from any one offender, and sometimes there are multiple offenders so you could still be doing good, but just not enough. What we did is more of a shotgun approach, eliminated a lot, and then reintroduced things. It helped to worth with a naturopath who knew a lot about options. Yes, this can be more traumatic, but the tics were bad enough for us that it was worth it. We are to the point with my 11 yr old who is now normally tic free, and that we can give her dairy or anything with MSG (and all of the various sneaky names with glutamate) for one day, and she will flare for about a week or two. We have an artesian RO system from the Perfect Water and really like it. We are completely scent free, no dryer sheets, no perfumes, no incense, no bleach, and certainly no febreeze.

When I see the word Miami, I would make sure there is awareness of interior pest control applications. I have done a lot of building inspections and vacationed in Florida and am continually shocked at the level of interior pesticide applications and lack of any concern about staying out of spaces, cross contamination, etc. Pesticides do not always play well with neurological susceptible individuals and it can be hard to be concerned as there is definitely a culture that spraying is ok.

We received the same response from the neurologist and felt abandoned as well at the onset of all of this. Fast forward 3 years and we completely turned things around without medication. There is hope.

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).