Chemar

@Chemar
To add onto what you said, I usually take an equal amount of Vitamin D3 with magnesium, L-Thiamine, and the P-5-P form of Vitamin B.
And yeah, 300-400 mg if magnesium is generally recommended, with men needing more.
 

@MLee
We initially started Magnesium alone, based on Bonnie Grimaldi's research on TS tic reduction with Mag. The effect was very quick for my son with the Mag supplement at 400mg/day along with nightly Epsom Salts baths. It is generally recommended to be sure that there is an intake of Calcium (food or supp) at twice the amount of the Mag dose. My son was 10yo at the time, and his doctor said to use the adult doseage of megnesium.
We added the B6 later based on the physician's recommendation, and it definitely helped with many aspects of Tourette Syndrome
400mg is still the suggested adult supplemental magnesium dose as far as I know.

@MLee
We initially started Magnesium alone, based on Bonnie Grimaldi's research on TS tic reduction with Mag. The effect was very quick for my son with the Mag supplement at 400mg/day along with nightly Epsom Salts baths. It is generally recommended to be sure that there is an intake of Calcium (food or supp) at twice the amount of the Mag dose. My son was 10yo at the time, and his doctor said to use the adult doseage of megnesium.
We added the B6 later based on the physician's recommendation, and it definitely helped with many aspects of Tourette Syndrome
400mg is still the suggested adult supplemental magnesium dose as far as I know.

Magnesium has always been a key factor in reducing tics for my son and he has used various forms of it over the years but never use magnesium oxide as it is very poorly absorbed. One really needs to find the chelated form that works best for the individual. We liked magnesium taurate, as taurine is also helpful for tics.
He started the P5P form of B6 on recommendation of his Integrative physician, as it was explained it helps much in neurology and also assists increase functionality of other supplements.
He still takes these key supplements.

Hi MLee
In my list of treatments that helped my son, I documented that both Magnesium and Vit B6 (in the P5P form) were overall very helpful for TS tics.
 

People with PANS/PANDAS usually need antibiotics due to the infection connection. Plus some are sensitive to certain probiotics as well. Due to the neuropsychiatric, autoimmune and infection issues associated with PANS, there are several factors that make it different from TS, although yes some people with TS may also have PANS and vv.  Not all neurological conditions respond to the same treatments.

Hi MLee
I have documented how starting magnesium was the first real beneficial natural treatment for my son in reducing tics. This was a mag supplement (best for him was mag taurate) as well as regular Epsom Salts (magnesium sulfate) baths. I learned about the importance of magnesium for people with TS by reading Bonnie Grimaldi's protocol & research in the original Latitudes print magazine. This was over 20 years ago.
The B6(P-5-P) was added on advice from his physician to aid optimal function with the other supplements he was on.
Yes, he has maintained those.

Yes, magnesium and B6 were also essential supplements for my son - we found the P-5-P form of B6 worked best.

Thanks @Chemar.
I will look into those options, especially l-carnitine.
As a rule, I’m usually quiet and reserved, but occasionally may seem to expand my tiny circle of acquaintances … and, indeed, explaining that I have tics often works.
Thanks again for your advice .

Hi @FraggleRed
 
Just an FYI that we did NOT use acetyl-L-carnitine
We were advised to use just L-carnitine
I believe there is a difference.

I think that's lovely that he has seen the positive in that he is a more understanding and empathetic person due to what he went through. What a champ that's the best we can hope for, that they can take the learning from such an experience and channel it positively! 

Thank you @Chemarfor the quick response.  
Found a health store here and have started with magnesium, b6 and the l-cartinine this evening.  Hopefully this provides some relief for my daughter before we return from vacation. 
Also happy to read in the forum that your son is doing well.  
 

Hi Jacke
My son had to have some vaccines for a trip abroad when he was younger - but although I was concerned - his tics did not seem to be altered after the vaxx.
However I know some parents have found any vaxx to be triggering, and I wonder if that may be due to the actual immune response rather than the vaxx per se. I say that as some people with tics (my son & dh included) seem to tic more when they are ill, and our physician once suggested the immune system ramping up could be the trigger?
Just a thought to add to this discussion.

Yes, there are numerous posts here related to screens and tics.
Try setting your devices on the night light setting and even using computer glasses (you can get those unmagnified if you don't need glasses) It helps with the glare and flash that can sometimes trigger tics. Also search info on Irlen here. Daylight lamps used at night can also help.
We focus mostly on natural treatments for tics and Tourette's here. Do take a look at out "Useful Thread" pinned to the top of this forum as you may get some extra tips to help in general   https://latitudes.org/forums/topic/2459-useful-threads-info-for-tourette-syndrome-tics/
 
                                                                                                                                                                                                                                                                                 
Our admin Sheila Rogers also has 2 excellent books that may be of help
https://latitudes.org/store/tourette-syndrome-triggers-book
and
https://latitudes.org/store/natural-treatments-for-tics-and-tourette-syndrome-book/
 
 

Hi @MLee
My son does well now and his tics are so minimal that hardly anyone would notice them. Even when they are triggered now - they are nowhere near what he once had in his preteen years! His tics started to improve as soon as he stopped the pharma rx meds, started specific supplements/nutrients, avoided things that triggered his tics. As he passed the teenage pubertal years, there was a continued improvement in the overall tics. He has a good job, works hard, nice apartment. Well adjusted, and, having dealt with TS since childhood, he is a more compassionate and empathic person toward others. He feels TS gave him a lot of insights he may not have otherwise had.
Number one tic trigger still seems to be stress - which is often harder to control in this stressful world - and so he continues to create and play music to relax, plus he has a set up that allows him to unwind with video games that is not triggering for him.
He has maintained a healthy organic diet, and avoids any food additives that have always triggered his tics (artificial colors, flavors, chemical fillers, MSG etc etc)  He also still avoids other environmental things that he has long known were triggers for his tics (eg chlorine pools, flashing lights, artificial fragrances/perfume etc). He continues to take certain supplements that work well for him. Experience has shown him that these are important to his overall health and well being, as well as to keeping TS symptoms minimal.
Hope that answers your question :)

Hi @MLee
My son does well now and his tics are so minimal that hardly anyone would notice them. Even when they are triggered now - they are nowhere near what he once had in his preteen years! His tics started to improve as soon as he stopped the pharma rx meds, started specific supplements/nutrients, avoided things that triggered his tics. As he passed the teenage pubertal years, there was a continued improvement in the overall tics. He has a good job, works hard, nice apartment. Well adjusted, and, having dealt with TS since childhood, he is a more compassionate and empathic person toward others. He feels TS gave him a lot of insights he may not have otherwise had.
Number one tic trigger still seems to be stress - which is often harder to control in this stressful world - and so he continues to create and play music to relax, plus he has a set up that allows him to unwind with video games that is not triggering for him.
He has maintained a healthy organic diet, and avoids any food additives that have always triggered his tics (artificial colors, flavors, chemical fillers, MSG etc etc)  He also still avoids other environmental things that he has long known were triggers for his tics (eg chlorine pools, flashing lights, artificial fragrances/perfume etc). He continues to take certain supplements that work well for him. Experience has shown him that these are important to his overall health and well being, as well as to keeping TS symptoms minimal.
Hope that answers your question :)

Thank you Chemar. So happy for him that things are going so well! It’s also nice to see that things progressively got better as he got older. What a hopeful post. Thank you!

A really well done and helpful video on dealing with those Thoughts !
 

Hey Chemar! Agreed. I think every person probably has different things that the body views negatively. Yes, she doesn't do well on organic produce. She grew up on strictly organic produce.  Interestingly, she would often seem to do well with produce that wasn't organic at something like a wedding reception. I sometimes wonder if it's because organic is often more ripe (started the fermentation process). But, we still notice the beginning of negative affects (irritability) with eating fresh picked fruit from our trees. I know we don't have everything figured out. Perhaps she can handle certain produce, maybe cooked produce, etc..., but we are extremely grateful that God has given us direction to figure out enough for her to be tic free. 

my son uses Boswellia Extract by NOW as an anti-inflammatory with great success
It's a combo of Boswellia and turmeric/curcumin....potent anti-inflammatory action
 
Boswellia itself has also been found helpful for OCD
 
also, as an FYI for anyone using ibuprofen...CVS Pharmacy now makes their own brand on without that nasty added dye!

Hello @madimi
I see you have also been in discussion with some other parents here and am so thankful you have some support and are able to express the things that are troubling you.
Please try not to be scared - I know that is hard but honestly, for most, things do get better as children grow older - whether because the tics reduce, or because the person with tics learns how better to live with them.
Many of us who have been here a long time can attest to how, even with Tourette Syndrome, our children have grown into productive adults. Sometimes the challenges in childhood can help to make them more caring and compassionate, as well as more determined not to let tics control who they are.
Our family was greatly helped by many of the natural approaches discussed here at ACN/Latitudes, so I do encourage you to also look at the main section for some very helpful info
www.latitudes.org
 

I don’t post much but am a long time member. I first posted in 2010 over a year after my daughter recovered from a severe 1 year long episode of PANDAS anorexia. That post is still available if you do a search. She was 10 and had overnight sudden onset severe anorexia /OCD. She had high aso titers for almost a year. There were very few people who could help us at the time so it took 3 months to even figure out the issue. She eventually returned to normal almost as suddenly as it came on. She has been great ever since. I posted another update in 2016 when she was starting college. She had no further PANDAS related issues until this year. She rarely was sick (probably because of her over reactive immune system) but we always continued to have her tested for strep even with a slight sore throat.
She graduated from college in May of 2020. She was accepted to medical school later in 2020 and started in July of this year (2021). Her school was very pushy with the COVID vaccine which we did not want her to get but she got it anyway because she felt she was going to be prevented from fully participating in everything without the vaccine. I am not anti vax at all. We did delay her 12 y/o vaccines until she was 15 and she got them all separately. I just felt like the COVID vaccine risk vs benefit for her did not warrant it at all.   Nevertheless, she received the vaccine in early June. When she started school in July she was loving school! She had met many new friends and was doing great.
Fast forward to the last weekend of August, I received a call at 3 am from my daughter. She said for the last 24 hours she has had very severe anxiety and could not sleep at all. She said it started in the middle of the night before so she had not slept in almost 2 days. Things were getting really bad and we had to fly her home. She proceeded to be unable to sleep as well as unable to study. She said she was having trouble concentrating on even simple usually easy tasks. She was completely non functional as a medical student and after a few days took a short term leave from school.
Before we even flew her home she had seen a psychiatrist who immediately put her on buspirone and gave her something to help her sleep. She was able to get small blocks of sleep at least but the anxiety was unchanged. She was able to eat but not eating very well. My normally super independent grown daughter was unable to make any decision and she was also frequently coming in my room at night and sleeping on the floor as if she were a child. She was a completely different person and we felt it had to be a PANDAS type situation.
Fortunately a lot has changed in 13 years and we were able to get her in with an autoimmune neurology specialist. She typically saw pediatric patients but agreed to see my daughter due to her past history and her current situation. We did extensive blood work. This time the strep was negative. She had a positive monospot test (no recent illnesses) but her Epstein Barr numbers came back negative. She tested positive for both IgG and IgM antibodies for micoplasma (again no recollection of feeling poorly). She was given a course of antibiotics. We weren’t seeing any changes for the better. The buspirone was not seeming to help her anxiety/OCD at all. She said the only difference was she was not experiencing the physical symptoms she was the first week or so like the racing heart rate.
The difficult part of this happening to your grown child is that they get to make their medical decisions. She was convinced that this was not autoimmune related and was annoyed I was asking the doctor about the vaccine. She kept blaming herself for everything. It was very hard to watch my typically positive energetic confident daughter turn into a self doubting mess.  The doctor wanted to put her on a 5 week course of steroids but she was pushing back saying it would make her gain weight. She was not getting better and started getting pretty depressed. About 8 weeks into this (and 9 pounds lighter) with no improvement she made the difficult decision to take an extended leave from school and she agreed to start the steroid.
At the same time, her psychiatrist put her on a low dose antidepressant.  Literally a day after starting the steroid I noticed some changes in her mood and she seemed to be doing a little better. She was sleeping better too. She still was definitely having struggles but there was a definite improvement. Some time during about the third week of the steroid she became much better…almost to baseline. It has now been almost another 3 weeks and I feel her demeanor is mostly back to her normal happy self. She is eating well and has put back on a few needed pounds).
This was, however,  a big blow to her confidence as a medical student. She still believes it might have just been her being stressed but her dad and I know better. She will continue with counseling that we started to help her get her confidence back so she can hopefully return to school as the same caliber student they admitted.  We still do not know for sure what caused this to happen after so  long. My guess is that it was either the micoplasma or the COVID vaccine or perhaps both. Something turned her monospot positive too but it was not mono.
We will be seeing her doctor in another couple of weeks and hopefully get blood work done again. I can tell you one thing is for sure. As they say…”out of abundance of caution” she will not be getting any COVID boosters. I just wanted to reiterate that I’m not antivax. I think the COVID vaccine has saved many lives. I just think that there is a possibility that it could play some role in autoimmunity. We just don’t know the answer yet. Until then everyone has to do that they think is best for their own situation. I just wanted to add my daughter’s story as just another case history. 

Also, Chemar…I have been reading all the books and doing all the things.  We haven’t cut dairy yet, but may fo there next.  Thanks for being a mainstay on this site to offer ongoing hope.

So we have been back from our vacation for a couple of days.  During our trip the tics (coughing, neck cracking) were very minimal.  If you weren’t aware, you wouldn’t have noticed.  I was feeling hopeful.  We continued with gluten free food on the road for the most part and sugar free and all the vitamins (fish oil, b, multi, and magnesium, and we traveled with his new dust mite free pillow-his blood test came back with dust mite allergy.  He had PLENTY os sunshine and lots and fun and running around outside.  However, since we have been back home, the neck cracking has become way more pronounced.  He stretches his neck back in order to crack it and then sometimes also turns it to the side to crack.  The cracking is often loud.  Yesterday, he became frustrated and cried because in doing these moves, he said it wouldn’t crack and that was bothering him.  I massaged his neck with magnesium lotion which he said made him feel better, but he continued to turn his neck to try to crack it.  I put on some “past tense” roll oil on his neck (terra oil which is supposed to relieve tension), he also said that helped.  He had a friend over later in the day, so the cracking was minimized, but came back later.  This morning when he woke up, we all piled in the big bed together and cuddled.  He started rolling his neck again, and he said, “Mommy, the cracks are more quiet today.”  I asked of that bothered him and he said it did.  I tried to ask him about what he  felt before cracking his neck, and he said it made him feel comfortable.  I asked if it was tense…but he didn’t really understand what I meant.  He said, “Why do you think I crack my neck?”  I told him it might just be a little tic and nothing to worry and he will probably outgrow it.  Otherwise, we don’t talk about it or mention it.  Has anyone else experienced this neck cracking tic?  Is it possible it will fo away?  What did you find helped with this tic?  We see a neurologist Monday.  Thanks for continued guidance and information. 

We have had numerous reports here of children ticcing more in *new cars* - but the post indicated this is a 2003 Ford Explorer?