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Tourette Syndrome: A Success Story with Supplement Treatment

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Unread 09-19-2006, 06:20 PM   #1
Chemar
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Arrow 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)

----------------------------------------------------------
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

Last edited by Chemar; 04-11-2008 at 05:46 PM. Reason: adding correct link to iherb's Natural Library & Crohn's thread link
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Unread 03-01-2007, 09:39 AM   #2
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bumping up per request
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Unread 03-15-2007, 06:42 PM   #3
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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
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Unread 03-15-2007, 07:03 PM   #4
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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.
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Unread 03-15-2007, 08:58 PM   #5
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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
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Unread 03-18-2007, 01:52 AM   #6
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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.
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Unread 03-19-2007, 03:28 PM   #7
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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
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Unread 03-19-2007, 05:34 PM   #8
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Thumbs up just a suggestion...

but I really think this thread should be a "sticky" ...
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Unread 05-03-2008, 04:35 PM   #9
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for Greyhound
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Unread 05-03-2008, 05:02 PM   #10
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Thanks

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).

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