13-year-old with facial and vocal tics, getting desperate

[Irene123]

It pains me to write this but my family has not been the same since tics started for my daughter at almost 8 years old. She does not have an underlying condition like OCD, anxiety, but did have tactile sensory processing issues as a toddler especially with foods. She is very bright and does excellent in school, has a good social life, etc. The facial tics (eye rolling, nostril flaring and mouth moving to the left together with nostril flaring) she does without realizing she is doing it. Only when she has rolled her eyes all day long, does she feel they are tired but she does not feel the urge to roll them, so I don't see how CBIT would help her here. The vocal tic was very little at first and you could hardly hear it, it has recently turned into a loud croaking like sound which comes on every 10 seconds with 3-4 sounds in a row. Im afraid of how this is going to play out in the classroom when school starts. We have tried essential oils and Bach flower therapy, does not work. Tried relaxation/visualization techniques, does not work. We will try a bunch of supplements now that I have read on this forum might be helpful: L-carnitine, vitamin A and D, magnesium turate and P-5P vitamin B-6. And I am also asking her to try a competing response of breathing in through mouth and out through the nose when she feels the urge to make a sound (which she does feel the urge), but she says it is very hard to keep on doing it as your mind cannot consternate on it all the time especially in school, while doing homework, etc. You have to be doing nothing to be able to do it. In terms of diet, she eats what she eats and we cannot change it because 1. she is not open to trying new things and 2. due to her acid reflux issues, we are limited to what she can eat. Her diet does not include any refined sugar, artificial colors/flavors processed food or greens. it includes: eggs, whole wheat bread with almond butter, homemade waffles without sugar (just a little honey), grilled or baked chicken with baked sweet potatoes and salmon with rice, some apples/blueberries, and lots of water, that's the bulk of it. I am seeking advice from parents who may have gone through what I am going through for things that worked and did not work for you so that I can try them too. I just can't cope with the fact that my only beautiful and intelligent daughter will grow up to have this debilitating condition that will hold her back in her professional and personal life. I know what I used to think of people on the subway who had facial tics, oh he must have some emotional issues, and I just don't want others to treat her like a charity case when she is older. Thank you in advance for any advice you might provide to me.

[Atex]

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.

Edited September 1, 2023 by Atex

[Irene123]

Thank you, Atex, for your response. My daughter definitely has some food intolerances, and we are trying to figure it out with a gastroenterologist and an allergist. We might go to naturopath, but the issue there is that they will ask you to not eat certain things and to eat other things, which with my daughter is not an option, unfortunately, since she only eats like 5-6 things, so I feel like we are in a catch 22 situation. We do not eat anything with MSG. We are trying to do essential oils but don't see any effect, Epsom baths we are trying, but it does not work out to do every night due to being busy with other things. My husband will clean the AC coils next week as he does every year. We don't really use any scented things except for her deodorant that has some lavender smell and Dove shampoo/bodywash. We live in an apartment building where AC/heat is centralized so we can't really control that, and we have no smells from outside. When we notice something triggers tics, we try to avoid like hairspray and pool chlorine.  Have you tried any self-hypnosis, breathing techniques, visualization, etc. and if so, did you find it helpful? 

I know one father whose son is in college now who has Tourette's and his response was, if there was something that could have helped my son, believe me I would have done it. Not very encouraging but in his case, his son's tics got better overtime, but he is a boy, research shows there are less chances for tics to go away for girls than boys. My daughter is 13.5 already and I don't see any improvement whatsoever, it is worse than it was 3 years ago, so I am not anticipating this to magically disappear when she is 18, I can only hope it will lessen a little bit. 

[Chemar]

Hi Irene123

I see you have posted to the PANS forum rather than the TS/tics. Do you suspect PANDAS/PANS?

 

[Irene123]

No, not suspecting PANDAS. I must have made this post in error under the wrong forum. I will repost in the TS/tics forum. Thank you for pointing it out. 

[Atex]

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.

[Atex]

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 

[Irene123]

Thanks for all the info, Atex, I really appreciate it. We have tried self hypnosis and relaxation but did not see a difference, perhaps she has not diligently done the relaxation but my constant reminders to do it only caused more aggravation, so I don't think it is the right avenue for us unless she really wants to do it on her own, which at this point I don't see happening. It's funny you mention Dazz because I have been looking at his videos for two years now, he seems so calming. We have a consultation scheduled with him this week and if my daughter agrees to proceed with him, we will definitely do the 6-week session program, and I will report back with any updates about it. Given that Dazz has gone through it himself, I think he is best equipped to help people with Tourette's. We don't have a screen time issue, my daughter hardly uses any electronics, only for research, she is an author (she is working on her third book now), so she does research on her Ipad for her books, that's about it, maybe some shopping here and there

I had a few CBIT specialist names provided to me by the Long Island Tourette's association and have left messages for a few of them, have not heard back. My daughter does not do the competing response for vocal tics that much on her own anyway, so as I mentioned before, I don't think CBIT would be very helpful to her. Your CBIT experience is what I am afraid of, therapists just trying to take advantage of families.  

We will definitely try a naturopath, I just need to find one in Queens, LI or Manhattan and see what they can do for us. Thanks for the air and water suggestions as well. 

[Potatoe]

Hi Irene, I think you are doing the right things and Atex has given some great suggestions. 

I have had tics most of my life and now dystonia, and I have kids with ADHD, ASD, and other issues.  But now that I have figured out some genetic - environmental connections, we are all doing much better.  Here's a few random thoughts:

1. Gut health (microbiome) issues is the most common cause of chronic health issues, including neuropsychiatric.  Anaturopath or other integrative or functional medicine doc can do a test like GI-Map w/zonulin.  Zonulin is to test for leaky gut, ie overabsorption of undigested proteins or metals, etc. If you can't find a doc in your area, Planet Naturopath may be able to do in US.

2. Unusually high levels of manganese (not to be confused with magnesium) can lead to under-pruning of synaptic circuits and excessive dopamine release especially in the basal ganglia  This can result in someone who is hypersensitive to stimuli, odd coordination, high anxiety, tics, and has difficulty sleeping.  On the positive side can lead to high intelligence or creativity.  Thus genetics that predispose people to high manganese are not defects.  

3. In order to keep manganese levels, gut issues, and immune system under control, it is important to:

    Maintain vitamin D levels at what healthy people who spend all day in the sun produce.  See "The Vitamin D Council" recommendations.

    Avoid iron/iron stores deficiency: Iron + Ferritin testing can tell you.  Like with D, testing is needed to avoid oversupplementation.

    Ensure enough magnesium.  Along with Iron and D, used to treat hyperkinetic conditions such as restless legs syndrome and tics.

   Avoid manganese or other metal -containing air pollution.  As Atex mentioned, cooking especially smoking oil in a saucepan messes up air. Reducing PM2.5 using true HEPA filters has helped change my life.  Sources of high manganese include steel-working factories, auto body repair, welding, battery making, and train tracks if the wheels squeal (and shed). Less so are busy roads.  For general PM2.5 AQI, check purpleair.com or other sites.

Manganese is usually best tested with Red Blood Cell manganese or trace minerals testing.  If your daughter is at the higher end of the "within range" levels, it can still contribute to tics and auditory or visual hallucinations.  But the things above can help the body bring back into a more normal range over time and also reduce immune system issues.

On a final note, I used to inject glutathione but much more effective is fresh broccoli or especially broccoli sprouts.  This stimulates glutathione production in the cells where it is needed.  Broq is a pill version that is fully reacted sulforaphane.  It was effective for me, but it's expensive and contains copper so it's best to ask you naturopath.

[Irene123]

Thank you for your many interesting suggestions, Potatoe.

We will look into doing a gut test since it is the easiest thing to accomplish with my daughter 

I already give her 2,000 units of vitamin D per day as I know she was low on it a few years ago when we last tested it (as most of us are). I know she is deficient in iron as that was tested a few years back and she does not eat any iron rich foods like red meat or dark greens, so I will think about giving her iron supplements, but I am a little concerned they might constipate her. Her digestive system is very sensitive as is, so I am afraid to disturb it in any way. But Magnesium usually softens the stool, so perhaps that would counteract the iron? 

When we have a blood test next time, I will have them check her Manganese levels (or trace minerals). 

On the broccoli sprouts supplements, I used to take Brocsprout 2 myself, which I think is the same or very similar to Broq? It does make you a little gassy. 

Have you ever heard of Dr. Piper Gibson and if so, what are your thoughts on it? 

[Potatoe]

Hi Irene, Iron can lead to constipation but you are right that magnesium can counteract that.  Even though you know your daughter is low on iron, it is helpful to get iron+ Ferritin tested to see how low Iron stores are and work with a doctor on a plan.  Low Iron stores (checked by ferritin testing) makes the body produce more iron intake transporters, which also can intake manganese (and aluminum). You can start gently by having her eat something containing vitamin C with each meal.  Vitamin c is also needed to convert dopamine to norepinephrine.  Low conversion can increase anxiety and autonomic disorders like racing heart, feeling hot, etc.  The c unbinds iron but not manganese from foods like beans and brown rice.

It is ok that your daughter does not eat red meat.  Red meat can be inflammatory to some people's guts.  If you find that your daughter does better on a gluten free or casein free diet, it is probably because she does not digest proteins well.  You might want to read "The Plant Paradox" which talks about lectins, another type of hard to digest proteins.  Note that high manganese can impair the pancreas, which is the organ that produces protein digestive enzymes.  Once the cycle is broken, then this should reduce help sensitivity to gluten, etc. back to normal.

If you get manganese or trace minerals testing, red blood cell testing is much more sensitive than whole blood testing.  

Broq is one of the few pill brands that has reacted sulforaphane greater than 10 mg. People with healthy guts can benefit from almost any brand of broccoli pill, but if there is a gut issue such as dysbiosis, reacted sulforaphane will probably be more effective. I tried making sulforaphane soup by heating broccoli to 140F? before blending, but my kids hated the smell of the soup.  For more info on this method, look on YouTube.

I haven't heard of Dr. Gibson, but will check out.  Good luck to you, you are on the right track!

[Atex]

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.