Chemar

If anyone has read my long thread on what helped my son all those years ago, you know Magnesium was key in calming his then very severe tics. (thread is linked on my profile page)
Fast forward 23 years and a senior relative who also has TS tried the Natural Calm powder (ionic chelated magnesium citrate) more for digestive/laxative purpose- and had an immediate calming of some tics that had resurfaced!
It just reminded me again of how dramatic an effect there was on reducing my son's TS tics after adding a good magnesium supplement.
I understand not everyone responds the same way, but sure is worth a try if you are looking for something that may just help

Hi badguyus1776. Welcome to the forums, and I'm sorry you are concerned that you have signs of ADHD. I don't know if there is a tendency for people with a history of TS to develop ADHD, per se. A  lack of focus and interest in certain activities, like the painting you mention, could occur for a number of reasons.
 As we age, nutritional needs can increase or change. You might want to consult a practitioner who could order some lab work, if that's an option. You might have an imbalance with amino acids or other nutrients that often affect attention.  Would you be interested in doing that? 
 A mild depressive state could result in the symptoms you describe. Depression might be addressed through the biomedical approach just mentioned. Does that make sense? Do you already take brain-related supplements? 
Something else that can change with age is food reactions. Think about whether you feel the same every day or if there are times you feel more energized and engaged.   You could keep a log of the foods you eat and consider whether you feel different on various days based on what your diet is like. Cutting back on sugars is often recommended for ADHD. (I don't know what your diet is like presently.)  In addition to that, food intolerance can develop that causes brain fog. As an example, some people can no longer handle alcohol the same way they used to--or they start to react to gluten or certain foods with headache or foggy head or stomach issues even though those items never bothered them before. 
Since you mentioned indoor painting, I'll pass on a suggestion--and that is to go with non-VOC paint once you get inspired.  It is available from major paint companies and is much healthier than standard paint. Some people find tics increase significantly with exposure to the chemicals off-gassing in standard (smelly) paint. 
Link to Sherwin Williams eco-friendly paint with explanation
I hope that helps? The good news is that ADHD-type symptoms can often be improved. 

Hi

I have been asked to post our treatment protocol a number of times here and by emails so I have finally put it together in what I hope is a simple summary for anyone who needs more info on it.

Although I have a background in Medical Research, with a postgrad degree in Physiology I am not a physician...this is the program that worked for my son, and and I must stress that we were at all times guided by a team of knowledgeable doctors. I urge everyone to work with a qualified physician!

PLEASE NOTE! this post was originally written in 2004, and so has been updated with current information in the later posts of this thread


Hope this answers your question...feel free to contact me if you need more details
--------------------------------------------------------------------------
FIRST: I need to clarify that my son has genetically inherited Tourette Syndrome, and that my husband and his father before also manifest TS etc

My son uses mainly supplements (vitamins, minerals, herbs and certain amino acids) and healthy diet as his "treatments"

He was on prescription meds for a year, but had very bad side effects, and not much improvement in tics as well as a worsening of his OCD etc.


His natural treatment plan was enhanced by detoxification from heavy metals (in his case mercury, and chlorella supplement was used followed at the end by alpha lipoic acid)) and also controlling yeast overgrowth(candida) in his digestive tract. (we initially used caprylate by Solgar but then found Candida Clear by NOW to be most effective)

We also found that artificial foods were big tic triggers for him (coloring, sweeteners like Nutrasweet ie aspartame and Splenda ie sucralose, MSG ( beware its hidden names in food...!!), chemical preservatives and high fructose corn syrup) We ran allergy tests and did a process of food elimination, but he doesnt have any natural food allergies per se, only mild p-nut sensitivity so we avoid those.
For some folks tho, things like dairy, wheat(gluten) etc can be allergens and so intensify tics, OCD etc

My son was also able to identify other tic triggers that he has such as chlorine (he avoids pools now) and dustmite, mold etc and also most strong smells like in perfumes, and some household cleaners, air fresheners etc (some of this is probably related to his hypersensitivity to sensory things..ie taste, smell, touch, sight and sounds) Occupational therapy [/b] made a big improvement in his sensory issues from the Sensory Integration Dysfunction that so many folks with TS etc seem to have....tho he still removes all labels from inside clothing and wears his sox inside out as the seams drive him nuts

There is an excellent article here at Latitudes on Tic Triggers

http://latitudes.org...ng_triggers.htm


Acupuncture has greatly benefited him too, as has reflexology and biofeedback (NOT neurofeedback)
In addition he sees a NUCCA chiropractor who uses gentle pressure methods to help reallign him as ticcing frequently causes skeletal misalignment with resultant neuromuscular problems which cause pain and can even trigger more tics too! ( http://www.nucca.org )

He also had Cognitive Behavioural Therapy for the OCD, and occupational therapy helped with many of his Sensory Integration issues



In addition we tested for PANDAs (strep negative) and Pyroluria (not an issue) as these can also be conditions that exacerbate tics, OCD etc

We saw an INTEGRATIVE medical doctor (trained conventionally, but specialised in natural medicine) and she and her team worked together on my son's treatment and testing

The OCD, depression, anxiety and other mood issues were always the most troubling for him, and the improvement that the supplements like primarily 5HTP & Inositol have made there are remarkable! (It is not a good idea to mix some of these with meds tho, so do note that!)

I based the rest of his supplements on Bonnie Grimaldi's researched plan for her child.
http://www.oocities.org/torcha.geo/ts_main_bonnie_sup.html
She now has her own products, BonTech on the market which many people use with great success for tics ( www.BonnieGr.com ) but I still use the combinations that I initially implemented for my son, based on Bonnie's protocol but fine tuned to suit my son's specific needs, under guidance from a physician, as it WORKS and so I am reluctant to change anything.
------------------------------------------------------------------------------------------------------------------------------------------

Here is our program

* multivitamin/mineral (the multi has all the good antioxidants,and other RDA supplements and is high in the B group vits, and I add an extra B1 ( IMPORTANT NO COLOR, FLAVOR OR FILLER IN THE MULTI!! )

* combo essential fatty acid supp containing flaxseed, borage and evening primrose oil
( My son is sensitive to fishoil, as some people are, but if you tolerate it, it is good to also use that)

* Lecithin

* Royal Jelly

* ginko biloba(for ADD)

* Inositol (for OCD & tics)

* St Johns Wort (for OCD)

* Vitamin B12 as METHYL cobalamin

* P-5-P (vit B6)

in the evening he gets

* 5HTP (for OCD) (please note 5HTP can have bad side effects in some people so use with caution! and NEVER with medications that elevate serotonin!!)

* Methionine (for OCD) (some people prefer samE)

* calcium/magnesium/zinc combo( magnesium = main tic reducer)

* taurine (main tic reducer)

* GrapeSeed PLUS extract Boosts immune system and seems to also promote restful sleep. The blend I use also contains Bilberry for his vision as well as other essential antioxidants)
---------------------------------------------------------------------------------------------------------------------------------------------
When he is run down he also gets co-enzyme Q, and if we notice anxiety up I add GABA for short periods)

He used to take L-carnitine, which many folks find very beneficial especially for vocal tic reduction, and relaxation, but lately he seems to get edgy from it so we discontinued it.


The doseage of the supps depends on age and body weight so I have not included it here

I stress again,ESPECIALLY if you are ON MEDS, it is a good idea to talk to a physician before adding or combining some of these supplements as interactions can occur which can be serious.

Here is an excellent site for reading up on the various supps etc
http://www.iherb.com/health.html
-----------------------------------------------------------------------------------------------------------

I should also mention that when my son began his natural treatments, he had tested +ve for epstein barr virus, tho without mononucleosis. We therefore adopted a homeopathic and herbal/supplement/diet regimin as antimicrobial
Things like monolaurin(lauric acid from coconuts) olive leaf extract, and cooking with garlic, ginger, turmeric, plus the candida Clear (which has oregano oil, wormwood, pau d'arco and other antimicrobials in it) Extra Virgin Coconut Oil (we like Nutiva) is also excellent uncooked, and drizzled over food.
The probiotics we use are natural Lifeway kefir and Stoneyfield Farms Plain Organic Yoghurt
L-lysine is also a good supp to prevent viral outbreaks


information overload????
I will be happy to answer any questions!


-------------------------------------------------------------------------------------------------------------------------------------------
EDITED TO ADD: Certain of my son's tics were clearly interlinked with his OCD, and this was especially so with injurious ones. The psychiatrist who was working with him at the time educated us about this interaction between OCD and Tourettes (Tourettic OCD), and also about ENDORPHINS, the "feel good" chemicals naturally secreted by our brains when we experience pain. Sometimes repetitive injurious "tics" can be stimulating endorphins and so the patient keeps doing them because of this natural high. the amino acid phenylalanine, in its D form, promotes endorphin release and my son was on this for a while. It totally stopped these self injurious "tics" It isnt easy to find D-phenylalanine, but the DL-phenylalanine is more widely available. Please note that where just the L form helps with depression, it is the D form that is needed for the endorphin release.
A very good way to also increase endorphins is moderate excercise. I should also point out that *some people may tic more from phenylalanine* as it is dopaminergic. This was not so for my son for the short time that he used it, but it needs to be noted.

Also wanted to mention the tremendous benefit my son has from EPSOM SALTS tubs. The magnesium sulfate in the salts seems to have good results on tics, detox and relaxation. He has one most evenings. 2 cups epsom salts in a tub of warm water and approx 20 min soak. He drinks lots of pure water, or chamomille tea while in tub too.
Epsom foot baths are good too! as is soaking a washcloth in strong epsom solution and apply to areas where tics happening most. Epsom cream also helps. (1.2 tbsp salts, saucer hot water. dissolve and mix into 1/4 cup aquaphor cream) Morton Salt has a very good Epsom lotion
----------------------------------------------------------------------------------------------------------------

İlginiz
    I want you to know how important this article of yours is to me. I am grateful

5 Key Advancements in Tourette’s Syndrome Research
This is an interesting summary article from Princeton Medical Institute.
I find it encouraging that there is more exploration beyond pharmaceuticals, and always remain hopeful for more advances that explore understanding the causes to better facilitate treatment and perhaps cures. We also need so much more research on the many other ways that clearly help (as discussed here at ACN Latitudes)
https://princetonmedicalinstitute.com/2024/05/15/5-key-advancements-in-tourettes-syndrome-research/

@tiaratoledo you have some very helpful info being shared with you!
My own son had a similar journey to yours-starting some tics around 4yo
I can't post much now due to some work constraints, but just wanted to encourage you that you have much reason to be hopeful!
My son is now in his mid 30s and living a full life. When I think back to the desperation I felt back when all this started, I can only be thankful that the natural pathway to helping him was fruitful!
Here's just one of many threads here where good reports are shared
 

Hi Tiara,
Have just read your posts on your son's situation and I can clearly understand what you're going through. There is definitely something going under the hood for your son and once you find the root cause, this will all go away. Pediatricians/Neurologists are HOPELESS and I would suggest you read Sheila Demare's books on Tics/Tourettes as the starting point, that would give you all the strength you need to get started. Diet is the biggest trigger for my kid and there is a lot of improvement once we got rid of dairy/gluten/sugar.Food intolerance and allergies can cause triggers too. Functional Medicine/Environmental Medicine are the one's you can start talking to who can diagnose your son and let you know the root cause. Stay strong and you WILL see light at the end of the tunnel

@Chemar your posts are always helpful and makes parents like me feel hopeful even in hopeless situations. 🙏 
Have learnt so much just through this forum and your posts. 

Bumping up this old thread as it just might have helpful info for anyone looking for tips on what may help to reduce tics, and others may want to add their own helpful info too.

@tiaratoledo you have some very helpful info being shared with you!
My own son had a similar journey to yours-starting some tics around 4yo
I can't post much now due to some work constraints, but just wanted to encourage you that you have much reason to be hopeful!
My son is now in his mid 30s and living a full life. When I think back to the desperation I felt back when all this started, I can only be thankful that the natural pathway to helping him was fruitful!
Here's just one of many threads here where good reports are shared
 

I just saw this article which might be of interest to others here.
Five latest advancements in Tourette’s Syndrome research 

Update : 11/19/2024
Hi Everyone,
We started working with Dr.Piper Gibson on my daughter tics issue. She had her bloodwork/genetics tests done and looks like my kid has heavy amount of mycotoxins in her body, which probably came from mold in the house and mold from grains. My kid is also sensitive to many foods and she is intolerant to dairy/gluten/sugar Dr Piper suggested a 6 months protocol for us during which we have to go for a dairy free/grain free/gluten free diet She suggested supplements to flush out the toxins from her body and fix the leaky gut. The journey just started, will keep updating on how it is going, thanks for all your support

I remember being that mom who went through all the hard stuff of having to say "no!" to all the so called treats that are actually tic triggers for a child who is susceptible. But oh my! it was so worth it to not have my son go through waxing tics that can often last quite a while, for one night of worthless junk food. There are healthy alternatives that can replace what might not be good for them. Take it from someone who learned this the hard way many years ago.

I remember being that mom who went through all the hard stuff of having to say "no!" to all the so called treats that are actually tic triggers for a child who is susceptible. But oh my! it was so worth it to not have my son go through waxing tics that can often last quite a while, for one night of worthless junk food. There are healthy alternatives that can replace what might not be good for them. Take it from someone who learned this the hard way many years ago.

My son was experiencing pain and digestive distress. The doctor suggested an endoscopy/colonoscopy as they suspected Crohn's, and it was confirmed during the examination.

Hi KSandy
It certainly sounds like you are following a good track! I don't have enough personal knowledge to comment on specifics for you, but I do know my son (dx TS with likely PANS component) showed tremendous improvement with cleaning out Candida albicans! We used capsules by NOW called Candida Support (used to be called Candida Clear) and had good results. As Candida is fungal (also sometimes called "Yeast overgrowth") I know some of the prescribed antifungal liquids have had mixed reviews.
My son's OCD always ramped up when his GIT wasn't happy. He still uses plain natural organic kefir as his probiotic, as he did not respond well to those probiotic supplements. He was subsequently diagnoses with Crohn's disease, which explained some of the inflammatory gut issues. The Integrative doctor started him on NOW Boswellia + Curcumin which he still takes and finds beneficial to both GIT as well as neurological impacts.
We know the brain-gut connection all too well, so always advocate for the treatments that aim toward healing both. We found regular medicine just doesn't address that, and frequently prescribed treatments just upset the balance and result in new issues - at least that was our experience.
So kudos to you for following a holistic approach. I do hope your daughter will heal well.
 

Hi to all of our members
 
this thread is primarily for posting links to important topics here at Latitudes/ACN, whether link to a thread (copy and paste the URL in your browsers address and then paste here) or link to a specific post within any thread (if u look top right of the post there is a number eg #1...just click that and the post is brought up so u can copy and paste that URL)
 
Any links for *other* sites, where you feel they would be beneficial to the members, are welcome, but it would be a good idea to really limit those, so that what is truly clear INFO 101 threads by our own members are grouped here, allowing all members, and especially newcomers, to be able to easily find them. We also have to be careful of the perception of "endorsing" research, products, physicians etc. If in doubt as to whether a link here is suitable, just PM me and we will check it for you
 
What we want to do is try to only use this thread to minimize confusion and provide a comprehensive database of info that has primarily been gathered here for anyone searching for answers
 
Please NO DISCUSSION on this thread. Feel free to start a new thread below on any topic here for discussion
 
thanks for your help in putting this valuable resource together

Will do. Results will be in this week.

Hi HopefulJourney, Welcome to the Forums. It's great you give so much attention to your son and are trying to find answers. At the risk of repeating information, as you said you have read the forum, I'd like to make a suggestion for your diary. If one of the goals is to keep track of possible triggers for an increase in symptoms, it might be helpful to have a list of possible events or items that could play a role in increased symptoms.

Our organization published a book, Stop Your Tics by Learning What Triggers Them (it's on Amazon), which breaks down various possible aggravating factors or triggers and provides feedback from families on what they discovered. Dr. Doris Rapp wrote a bestseller many years ago that focused on "unrecognized allergies."  I mention that just to expand your thinking about allergy. 

I'm attaching a resource that gives an idea of what a search for underlying issues in Tourette's might include. That is not to suggest there are easy answers for everyone. And as you point out, everyone is unique. You could look it over and see if there are areas you haven't thought of yet. FYI, we have had feedback from numerous people who found that exposure to harmful chemicals -- both obvious toxins like pesticides, as well as more hidden toxins in everyday items (i.e., cleaning products, plug-ins and other air fresheners) triggered vocal tics. At the same time, many other agents, and also infections and imbalances, can be involved with vocal and motor tics.  

I know it can seem overwhelming. Hopefully, your diary will help you find some clarity. I'm wishing you the best with your efforts! You have every reason to be hopeful. 

 
A Checklist for Brainstorming Triggers.pdf

Hi Chemar,
Understood. We have already started maintaining a journal.
Thanks for the info as well. Glad I found this forum, appreciate all the help am getting here.

Hi Deanit
I do understand how you feel but your wife also has a point - you are not helping, and especially not helping your son, by obsessing over these tics.
This may sound tough, but when my son first began manifesting tics and I was freaked out, one of my wise friends told me to consider visiting a hospital ward for terminally ill children to get things into perspective. I didn't - but it was the reality check I needed. Tics, Tourette etc are not terminal, as distressing as they may be. The more you focus on them, the harder you make it for your child! (as well as for your wife and yourself)
Of course you want to help your child and yes, doing your online research is part of that. But the purpose is to gather helpful info - not find "worse case scenarios"
Even if  this were to be TS - why do you feel that is so severely distressing? People with TS frequently are highly talented and live very full lives, despite their tics....and many also seem to have tics diminish or stop completely as they pass the "hormonal" years.
You are losing precious time to just appreciate your son for who he is, whether or not he tics.
Focus on the things you can help with without obsessing over the things you can't control.
The information here, and on the main website, on tic triggers and other things can really be helpful - but again, just do things with a balanced outlook and a step at a time.
In the long run, that will help all of you most.
Again - I DO understand your distress - but this advice comes from over 20 years of walking this journey with my son and I urge you to take a deep breath and focus on the wellbeing of your family as a whole.

My son was experiencing pain and digestive distress. The doctor suggested an endoscopy/colonoscopy as they suspected Crohn's, and it was confirmed during the examination.

@mert your post today made me remember one from many years ago by my friend Lara. It helped me so much in those early days after my son's tics began, and we received the Tourette diagnosis- especially in realizing that there was that needed balance in helping him by improving what we could - but also not letting helping become a hindrance to him just being!
Here it is again:
 

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.

Thank you so much for your reply. May I ask, what led you down the path to his Crohn's diagnosis?