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/burping 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 and she does not really want to do them. 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-5-P 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 stomach 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, such as supplements, relaxation techniques or any other methods to reduce ticcing. Thank you in advance for any advice you might provide to me.

[FraggleRed]

I notice you mention acid issues. That’s not entirely normal and I would look into Candida overgrowth. 
 

best wishes to you!

[Irene123]

Thank you. Yes, the acid issue we've been dealing with for the past 1.5 years is not normal for sure. It seems to be triggered by certain foods and does not happen on a daily basis. I looked at the symptoms of candida overgrowth in the gut, they don't really apply to us, but giving a probiotic on a daily basis won't hurt, so I will start doing that. I used to give her probiotics and don't remember why I stopped. We have not got far with gastroenterologists on her stomach issues beyond pepcid, so we will try a naturopath as another parent here has suggested. 

[Sheila]

Hi Irene123, I'm so sorry you and your daughter have been dealing with this for five+ years. I agree it would make sense to consult an experienced naturopath. 

I'll share just a couple of thoughts. I saw your post on PANS (where you said you posted in error and switched to this forum). You mentioned "We don't really use any scented things except for her deodorant that has some lavender smell and Dove shampoo/bodywash. . . . When we notice something triggers tics, we try to avoid like hairspray and pool chlorine."  It's really good that you have been able to observe that some chemicals are triggering tics and you avoid them. Usually when someone is chemically sensitive, the more you can avoid potentially troublesome items, the better. Also, when something is used frequently, like a body wash or shampoo, it can be hard to know if it is having a negative effect. That's in contrast to getting in a swimming pool and seeing that the pool chemical increased ticcing. I would suggest you try to go unscented with everything in the home, from laundry detergent to dishwasher soap, to personal products. And also use natural cleaning products, like those from 7th Generation. And avoid plug-ins, fabric softener liquid or sheets, etc. 

Also, when it comes to diet, it is possible that she is eating something every day that she is sensitive to. You mentioned eggs and whole wheat, which are common culprits for people with food sensitivities. A naturopath should be able to help identify them or advise you.

One test that is often recommended is from Great Plains Laboratory, which has just recently changed it's name to Mosaic Diagnostics.  https://mosaicdx.com/resource/great-plains-lab-is-now-mosaic-diagnostics/     This test might be very helpful, but needs to be ordered through a practitioner, like a naturopath or a doctor. https://mosaicdx.com/test/ige-food-allergy-test/

(If you already looked into food reactions like that, sorry, I missed it.!) I did see that your daughter has a limited diet because she likes it that way. I know change is difficult, but if she is eating something that is causing a reaction, it's important to address that. 

I hope you will let us know how things are going, especially with the start of the school year. Wishing you the best!! 

[Atex]

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.

[Sheila]

Thanks for that feedback, Atex. It's really helpful. I wonder how the Gliadin IgA is more specific than the gliadin on the IgG Food MAP? Would love to know more about it. 

[Irene123]

Sheila, thank you so much for your suggestions and the resources you have provided. We removed eggs from her diet for two months over the summer, it did not change anything, we also went gluten free a few years ago and it did not have any effect either. I will provide an update in a few weeks if there are any changes for the better, hopefully. 

[Irene123]

Has anyone tried Dr. Piper Gibson? I have looked at her videos and she has a holistic approach to healing the gut, which sounds right to me. i just wanted to see if anyone has worked with her and what they did and how it worked out for them. 

[Irene123]

Atex, after your daughter's digestive issues were resolved, did her tics get better? I read a lot about how tics are related to the gut so if gut health is improved, tics should improve too. Did you do a urine OAT test for candida/leaky gut? 

[Irene123]

I've contacted one naturopath in my area and his method is to first detoxify by using some number drops and then to deal with detoxing from the various vaccine the child has had that be believes could be the problem. I am not sure this is the best approach and think the treatment of the gut might be a better approach which is why I am considering using Dr. Gibson but wanted to see if anyone has used her and what the results were. 

[Chemar]

Hi @Irene123

I can't post more now but just wanted to say the gut connection was very real for my son.

He did do a detox protocol later- but our Integrative doctor was very careful in the step at a time with all treatments, supplements etc

[Irene123]

Has anyone tried craniosacral therapy? I am looking into this and will try it for my daughter in the next month or so and will report back with any updates. 

[Atex]

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.  

 

Edited September 24, 2023 by Atex

[JulesLou]

On 9/23/2023 at 12:15 AM, Irene123 said:

Has anyone tried Dr. Piper Gibson? I have looked at her videos and she has a holistic approach to healing the gut, which sounds right to me. i just wanted to see if anyone has worked with her and what they did and how it worked out for them. 

Hi Irene123

I have been following Dr Piper Gibson for a long time.  My son started with head nods at the age of 5, he is now going to be 13 in November and the tics have over the years turned into very loud vocal tics every second.

I arranged a consultation with one of Dr Piper Gibbons staff which was very encouraging and sounded great but at the end of the call we were told how much it would cost and it is well out of our budget nearly £4.000.

[Irene123]

Hi JulesLou, thanks for your response. I had a feeling it will be around $5000, I wonder if it includes lab fees or is that extra. I am having a consultation with them on Oct 2 and will report back what I find out. From what I understand, they order lab tests, I assume OAT urine test and food sensitivity blood test and then determine things you can and cannot eat and if you have candida for instance, tell you how to get rid of it. It is very pricey of course, which is why I would like to find out first what their treatment plan would look like, so that I would know if my daughter would be able to follow it.

In the meantime I am following Sheila's advice and purchased scent free home products, body wash, soap, detergent, dish soap, deodorant.

I wonder how people feel about Ezekiel bread which is technically not gluten free but is not the same gluten bread that we try to avoid for kids with tics. It is very healthy and I am wondering if it is healthier to eat than real gluten free bread or is is still something to stay away from in the quest to reduce tics?