Tourette Syndrome: A Success Story with Supplement Treatment
 

Hi
as Mrs D has recommended that we should start threads related to specific ailments, I am going to repost the info on The Natural Treatments that have helped my son. I do have my thread at Latitudes linked in our Useful Websites thread, but as it dates from 2004, I figured an updated post was needed....so here goes.....



I have put together what I hope is a simple summary of the Natural Treatment protocol that has helped my son go from severe and debilitating Tourette Syndrome/OCD to symptoms that are now so mild that most people are unaware that he has TS :) The improvement was very dramatic, and we saw the effects within just a few days of starting out on this regimin, although for many people it can take a few weeks for the full benefits of supplements to be felt and seen. He was first dx with TS in 2000 aged 10, although we now realise that he exhibited tics from a very young age. We believe the TS is genetic, as my husband came to understand that what were believed to be childhood "habits" that he himself was scolded for, were in fact tics and OCD, and that his dad, who had always been considered eccentric, was in fact also TS/OCD.

I want to stress this treatment protocol has not "cured" my son's TS spectrum of disorders, only made it less invasive and debilitating. From severe to mild. He still waxes and wanes, but the intensity that existed before is diminished

My son was on prescription meds for a year when he was first diagnosed, but he reacted badly to all of them, and had side effects that were so severe and alarming that we finally had to carefully wean him off the meds (with the help of a very special psychiatrist to whom I will always be so grateful for being willing to help me switch to an alternative protocol !)
We then started him on this program which I gradually put together after much research on the Internet and continuous consultation with numerous health care professionals

I must emphasize that, although I have a background in Medical Research, with a postgrad degree in Physiology I am NOT a medical doctor. This is the program that worked specifically for my son, and so I cant claim that it will work for everyone and I also must stress that we were at all times guided by a team of knowledgable doctors. I urge everyone to work with a qualified physician!

I would additionally like to clarify that I am NOT "anti-prescription medication"
I recognise that these meds have a vital and freqently life saving function, and also that many people with TS find great benefit from them.
My philosophy is more that medications have their place and for our family, that is more a last resort as we now tend to first try a more natural approach to all illness. I also feel that this attitude makes us less resistant to the drugs when they are really needed (eg antibiotics)




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The treatment regimin involves mainly supplements (vitamins, minerals, herbs and certain amino acids)

The effectiveness of this treatment was enhanced by detoxification from heavy metals (in his case, mercury) and controlling yeast overgrowth(candida) in his digestive tract.

We also found that artificial foods were big tic triggers for him (coloring, sweeteners like Nutrasweet ie aspartame and Splenda ie sucralose, MSG, 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 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 in clothes drive him nuts

There is an excellent article at Latitudes on Tic Triggers




Acupuncture has greatly benefitted him too, as has reflexology and biofeedback (we do NOT use neurofeedback)

In addition he sees a NUCCA trained 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 very effectiveCognitive Behavioural Therapy for the OCD,



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

In addition to the psychiatrist that I mentioned before, we saw an INTEGRATIVE medical doctor (trained conventionally, but specialised in natural medicine) who also referred us to the other healthcare specialists and they all had input on my son's testing and treatment.

The OCD, depression, anxiety and other mood issues that frequently accompany Tourette Syndrome were always the most troubling for him, and the improvement that the supplements like primarily 5HTP, Inositol and Vitamin B6 have made there are remarkable! (It is not a good idea to mix some of these with serotonin elevating (SSRI) meds tho, so do note that!)

I based a lot of his supplements on Bonnie Grimaldi's research. She now has her own products, BonTech on the market which many people use with great success for tics ( www.BonnieGr.com ) but we maintained the combinations that I put together initially for my son, under guidance from the healthcare professionals, as it WORKED and so I was reluctant to change anything. However, I know that Bonnie's range of supplements have been very effective for many people

Here is our basic program
(The doseage of the supps depends on age and body weight so I have not included it here as it will vary with these parameters for each individual)

*1 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 and B12
( IMPORTANT NO COLOR, FLAVOR OR FILLER IN THE MULTI!! )

*1 combo essential fatty acid supp containing flaxseed, borage and evening primrose oil
( My son is sensitive to fishoil, as some people with TS are, but if you tolerate it, it is good to also use that, he does eat a lot of fresh fish tho)

*1 Lecithin

*1 Royal Jelly

*2 ginko biloba(for ADD)

*1 Inositol/vitamin B6 combo (for OCD & tics)

*1 St Johns Wort (for OCD)

in the evening he gets

*1 5HTP/vitamin B6 (for OCD)

*1 Methionine or sam-E(for OCD)

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

*1 taurine (main tic reducer)

*1 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)
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When he is run down he also gets co-enzyme Q, and if we notice anxiety up I add GABA)

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

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, 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 excercise.
I should also point out that some people may tic more from phenylalanine. This was not so for my son, but it needs to be noted

As a bonus, we were delighted when my son's ADD also became negligible after we started the suppplement treatment!

__________________________________________________ ____________

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

Here is an excellent site for reading up on the various supps, drug interactions etc
http://healthlibrary.epnet.com/

information overload????
I will be happy to try to answer any questions, and I hope this info may be helpful for someone out there who needs it.

ps I do need to mention that my son has recently (2006) been diagnosed with Crohn's Disease (although he has likely had it for quite some time but just been misdiagnosed) I have therefore modified his diet and supplements to incorporate more anti-inflammatories and less immune boosters. I have posted a separate thread on the AutoImmune forum here at NT on just which supplements and dietary changes are helping with the Crohn's. http://neurotalk.psychcentral.com/showthread.php?t=9831

bumping up per request :)

Holistic Treatment
 

Hi,

I'm a 19 year old female who was diagnosed with TS at 13. I was first put on Paxil for a while, until we found out it causes suicidal tendencies in adolecents, then was med-free for a while. But that wasn't working. I've been on Fluvoxamine for around four years now and have experimented with Tenex. I've found that when I have increased endorphins, my tics aren't visible. I've also noticed, and this has been confirmed through research, that Luvox increases sexual disfunction/labido. I'm in a committed relationship and it's a huge strain on us to have a boyfriend who is far more often sexually aroused than I am. I'm practically never aroused. I feel that it is because of the Luvox and would like to ween myself off of it and use a non-perscription form of treatment. I've looked up Bonnie's treatments (which include around 20 pills a day for someone around 130lbs). I was wondering if you could tell me the weight of your son and the amount of each supplement he's taking so I could measure how much I should take. Of course, I will speak with a professional about carefully weening myself off medication (I get terrible dependency migraines when I stop taking it). I will also see if any of the supplements will negatively interact with other medications/conditions I have (I'm also taking Travatan-Z for Glaucoma and take iron found in prenatal vitamins for mild Anemia). Thank you so much for your help.

-Frustrated

hi banana bonanza and welcome to neurotalk.

it can be really hard to give advice on exaclty how much of any certain supplement somebody should take. so much can play into how they effect each person. diet...physical activity...meds...

i know chemar has listed what her son takes. maybe talk to your dr about starting with the lowest reccomended amounts listed onthe bottles? just starting with one at a time? if you had a bad reaction and started with them all...you would have a hard time knowing which one caused it.

i'm sure chemar and mrsd will post to you too. :)

Hi banana_bonanza :)

yes, Curious is right about it being real hard to advise on doseage because individuals have such different biochemistry, and it is also dependent on how much of these vits, minerals and amino acids are already being taken in via diet and a multi

our physician advised me of max doses for my son (he started supps when 11 and is now 17 so the doses have changed over the years)

we introduced them individually and waited 3 days before introducing the next, to be sure of no adverse reactions, again because people react so differently to different things, whether meds or supps

it really is best to get a healthcare professional to guide you on doses and potential interactions with meds.

my son had extreme lethargy, personality loss and total disinterest in the things he once enjoyed when he was on Luvox.


all the best

Thanks
 

Thank you for the advice. I'm going to the campus health/counseling center soon to discuss this with a psychyatrist and may be reffered to a neurologist. Thank you for the rapid responses. :)

let us know how things go.....

also do take a look at ACN/Latitudes for lots of stuff related to TS and natural treatment

all the best
Cheri

just a suggestion...
 

but I really think this thread should be a "sticky" ...

:bump:

for Greyhound

Thanks :D

The trouble is, some of those things have gelatin capsules/shells (can't find them without) and I can't have gelatin.

Also, they're soooo expensive! I can't afford them all and don't know which are the most important or are dependent on others.

I bought inositol, St. John's wort, B6, B complex+B12, dolomite (magnesium and calcium) and Gingko biloba and it came to about £35 (about $70 I think) O_o

Also, the B complex+B12 was a waste of money (and vitamins) because just one tablet gave me an excess (bright green urine, prickly feeling on skin).

Now I'm worried that I've got everythnig else wrong and that a) I've wasted loads of money and b) I'll take the wrong amounts/proportions of things and so some damage.

Also, I've heard that there are different types of these things (e.g. magnesium stearate and magnesium taurate) and I don't know if it makes a difference and I don't know which type I have and if it's the right one or not.

And also I drink milk every day, so I don't know if I need the calcium, maybe I only need the magnesium (more money and supplements wasted).

:(

Oh, and may I ask what sort of magnesium you use? It's is magnesium stearate or magnesium taurate or what? (And please tell me the difference if you know!) Thanks :)

Hi
my son uses both mag glycinate and mag citrate and has taken taurine separately, but I've seen it suggested that mag taurate is best for those with TS....absorption is what I think it is related to.

we buy our supps online at iherb.com as we find them by far least expensive, but not sure how much they charge to ship to UK

when I lived in London I got my vits at Boots tho that was many years ago and I wasnt as aware of additives then so not sure how pure their stuff is

Thanks. I might be able to get hold of magnesium taurate but it's overpriced and has to be ordered from somewhere.

I can get hold of other magnesium from Holland & Barratt but they all seem to contain magnesium stearate. I don't know if magnesium stearate is just not such a good idea, or if it's because isn't just not very good at all. On the Bontech website, it's made very clear that no magnesium stearate is added. With the magnesium I can get, I can get types other than stearate, but they still contain stearate as well.

I'm so confused!

I'll take a look at iherb.com though :)

I've had a look at iherb.com

They do ship to the UK (although I don't know how much it costs yet).

The trouble is, I can't always tell if the products are suitable for vegetarians or not (religious dietary requirements).

Also, I'm still not sure of the recommended dosages.

If it's not too much trouble, would you be able to link to the exact products on iherb.com so I can see how many milligrams you use and the exact formulas which you've found to work.

If you could that would be great, but don't worry if it's too much trouble :)

Hi Greyhound

there really are no "exact formulas" on supps for TS and all is very much dependent on individual deficiencies. even two people of same age with TS may have differing biochemistry. Also my son's needs have changed since we started using supplements in 2001 and he also has Crohn's disease so it wouldnt be productive for me to link you to what he uses as your needs may be different.
BonTech supps are the closest thing to an "exact formula" around, but as mentioned before, even there, while the majority of people seem to do very very well on them, some dont and that is likely related again to specific needs and possibly a reaction to the high B's or some other ingredient. Plus if cost is a factor it can get pricey as an adult needs quite a large number of TS-plus capsules per day I think............But overall if one wants a well researched formula for TS, Bonnie's come highly recommended by many. She also has a lot of good info on her site www.bonniegr.com

we dont use magnesium stearate as a supplement per se, as it is, from my understanding, more a filler than a well absorbed source of magnesium. It is usually added to most supps tho and often unavoidable


Did you take a look at mrsD's magnesium info on the Vits board?
that may really help you sort thru the different kinds of magnesium
http://neurotalk.psychcentral.com/showthread.php?t=1138

if you click thru to individual products on iherb it gives you the details on ingredients and usually lists whether the capsules are vegan
eg this mag citrate by NOW

it took us a while to get the right mix for my son and it is trial and error unless you have a knowledgable healthcare pro for guidance

you mention taking St John's Wort and Inositol...I assume this is becasue you also have OCD,depression and /or anxiety? as they arent specifically tic reducers but rather help to boost serotonin

the basic premise with supps for tic reduction is to avoid anything that elevates dopamine and to supplement magnesium primarily, and supplement any other deficiencies, especially with those supps that promote neurological health

have you tried epsom salts (magnesium sulfate) baths...my son has them regularly

also
there is a very helpful reference book by Sheila Rogers on Natural treatments for TS
http://www.latitudes.org/book.html

So it's okay to contain it, as long as the main magnesium it contains is a different type?

Yes, but I'm still so confused about it all. I'm trying though :)

I think some of my complex tics are OCD-based.

Thanks a lot again for your help :)

Okay, I've reorganised the regime.

Currently:
300mg St. John's wort
30mg Gingko biloba
100mg magnesium citrate (started today)

However, I've posted a little about it on the Tourette syndrome forum I belong to and had a concerned member telling me he thinks I'm overdosing :-S

It would help if I knew which were more essential and exactly what each supplement does and which ones work with others (e.g. does taurine have to be taken if magnesium is and vice versa?)

For example, I know:
Magnesium can help with tics
Taurine can help with tics
St. John's wort can help with anxiety and OCD

But I don't know which (on a tight budget) I should try and which I should leave out (I'm referring to http://www.bonniegr.com/ts-PLUS%20CONTROL.htm )

I keep thinking of trying taurine, evening primrose oil and zinc, but I don't know.

Sorry for being constantly confused about this! :D

Hello i'm 19 and suffer from facial and neck ticking. Really annoying. It was never really bad until like a year ago. I'm a male and currently experimenting with supplements and herbs. Also I looked at that girl bonnie website and why does she require you to take so many pills? Like for the vitamin its 20 pills? What is the logic behind this thank you. Also a possible conclusion my girlfriend had a yeast infection. We have been together for about 14 months and like i said it got worse a little over a year ago and thats when we started having sex could sex be the trigger of why it got so bad? I know yeast can be a cause. Well thank u for anyone who replies and helps.

hi steamroller and welcome :)

Bontech supplements are formulated by Bonnie to deliver optimal amounts of the stuff people with TS need and the number of pills varies with age/weight

I put together my sons supps to be as close to what Bonnie recommends but he took far less pills a day with the combos we used.

Magnesium seems real important and I know of many people with TS who find the Natural Calm ionic magnesium citrate mix to be really helpful, along with the soaks for 20 minutes in epsom salts tubs (2 cups magnesium sulfate "epsom" salts in a tub of warm water-- best in evenings as very relaxing.)

re the rest, androgens and other steroid hormones are known to be waxing triggers for tics so yes, if the hormones are up then tics tend to be too

Candida clear by NOW is excellent for getting rid of yeast infection in the gut, which often leads to genital yeast infection outbreaks too. antifungal creams are best for topical yeast eradication, but the candida clear is really good for getting rid of the internal candida.

hope that helps.

I'll second that. I don't feel a great deal different, but the test came back clearer, so it's done something good! :)

As for the Bontech products, I would use them if I didn't have to pay loads for shipping (plus I don't think I need all the B vitamins, for example I think niacin gives me a prickly feeling).

I'm currently trying*:
magnesium citrate 300mg (400mg)
zinc 30mg (45mg)
vitamin C 120mg (180mg)
B6 25mg
taurine 500mg
chlorella 3120mg (for chelating heavy metals, if any are present)
acidophilus plus and Candida Clear (for possible Candida)

Weekly (because of problems with the niacin):
B1 7mg
B2 14 mg
Niacin 4.5mg
B12 25µg

* Amounts in brackets are for when the usual dose isn't quite enough.

Soon I will try fish oil and possibly evening primrose oil. Also possibly grape seed extract, but it seems quite expensive.

I meant to ask - what do each of these do (in relation to your son, not just in general).

thanks so much for all that info on TS and supplements.
I looked into Bonnies formular, and it looks interesting. Is it expensive? Should I just buy the ones that you suggested?
I am most active in in my son's autism. I Have been to a DAN doctore as well. We did the chealation therapy too.
I need to target his vocal noises now, which is our main concern.
thanks for all your help.
Can i write to you privately, or should I just go by this list. I don't know how to get my messges here, I got this one, but who knows how?
thanks
angela

Hi :)
you are welcome to PM me or post questions here on the forum

many people with TS have found that the amino acid l-carnitine is very helpful for vocal tics.

Bonnie's supps are excellent and very well formulated for TS, but yes, it does get pricey and also a lot have to be taken.
I found putting together our own combos worked best. But using the Bontech range cuts a lot of the guesswork and provides what is needed.

Hi Chemer, I wanted to thank you for all your great information. I just joined this group and I am trying to learn as much as possible about Tourettes, in order to help my 6 year old son.

I have been giving my son Magnesium/calcium/zinc and I've bought several of your other supplements that you recommended, but I don't know how much to give my son. Can you advise??

Thanks so much
Jill
Mom of 2 boys, 1 with Tourettes

Hi and welcome :)

it really is impossible to suggest doses at it depends on age, and weight as well as individual's specific needs. usually best to check with a qualified professional on dose in a young child

generally over 12 yo/100 lb can take adult dose, half dose 6-12yo and 1/4 dose under 6yo

I documented what helped my son, but not everyone has the same requirements, although extra magnesium does seem to be needed by most people with TS and there is current feeling that it may be better not taken in conjunction with calcium

have you heard of Kid's Calm ionic magnesium supplement. I have heard very good reports on it calming tics in young kids. My son, now 19yo, takes the Natural Calm version each night and it really helps promote restful sleep as well.

The Epsom Salts (magnesium sulfate) baths are another real help for tic relief

Hi there, I'm very new to this forum, and I am trying all these supplements that you suggested for my 6 year old son, who has TS, but I'm having trouble giving him the supplements becuase he can't swallow. Any suggestions. I gave it to him in a smoothie, and he is fighting tooth and nail to drink it. Thanks so much.

Jill

some people find swallowing supps by drinking accompanying liquid from a straw helps them to swallow

I know parents have used apple sauce or yoghurt successfully too

did you see my post re the kids calm magnesium drink?perhaps he will like that and at least then you are getting the magnesium in

ts meds, my concerns
 

My son has been on clonidine and topomax(for ts), also the daytrana patch for adhd. I am concerned about long term side effects, and appreciate your info on supplements. I will tt his neurologist about weaning him before I do anything!

supplements......
 

I would love to be able to get my son off the prescription meds and find natural alternatives. I am so grateful to find this thread and forum. Does anyone mesogold and TS? I noticed that Greyhound mentioned Candia Cure- does anyone else with TS have concerns about yeast? Thanks

Hi and welcome!

Clearing candida is a very important thing, even if one does not have TS
I like Candida Clear by NOW but there are other products that seem helpful too.
I have heard a lot of negative reports about Nystatin increasing tics though! beyond the increase expected initially due to the yeast die off

Not sure what mesogold is?

Dear JimmyV,
Whatever you do decide, please just be careful if you take your child off prescribed medications and make sure you do that with his doctor's supervision. Most medications prescribed for people who have Tics need to be tapered very carefully.

Would love to hear more about how he's doing and how old he is and how he's doing in school (if he's in school).

Advice re Psychiatrist
 

Dear Chemar

I am a psychiatrist in Northern Ireland and I'd be keen to make contact with the psychiatrist you consulted and mentioned in this post. How do we go about that? I realize you probably can't give info like that in a public forum setting. Any suggestions?

Kind regards

Doctor A

Hello
sorry I can't be of further help as my son saw that psychiatrist over 10 years ago, and the doctor now practices in New Zealand, as far as I know

cognitive behaviorial therapy
 

Chemar, how did you find a doctor/counselor who was able to do the cognitive behavioral therapy? I've been trying to find one in my area but I've not found any yet.

Hi
we were referred to one by our physician, but you can also contact your health insurance and they can provide you with a list of therapists who do CBT