The Treatments that have Helped My Son

[Chemar]

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
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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.
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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)
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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
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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!


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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
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[ssp]

Chemar

 

I have been considering adding l-carnitine to my sons supplements as I have seen in several different places that they have been helpful with vocal tics and this is his most troublesome right now. Are there different forms of l-carnitine? I have seen propionyle l-carnitine and acetyl l-carnitine. Which of these is the correct one? All of these supplements are very new to me.

 

Thanks

[Chemar]

hi ssp and welcome to Latitudes

 

We have always used the L-Carnitine as that is the one our physician recommended. The acetyl tho is the form that has shown documented results for ADHD, depression etc.so it is trial and error there

 

It was VERY beneficial for my son a few years ago, and really had a noticeable effect on his vocal tics.

 

Then he started getting edgy, and by a process of elimination we found it was the carnitine. He possible just doesnt need it anymore.

 

But I know it has helped numerous people, not only with vocal tic reduction, but also with relaxation and a calmer, more positive mood/behaviour.

 

It is great that you are exploring supplement treatment.

As you can tell I am a BIG advocate as it has truly changed my son's life and reversed what was a very seriously debilitating condition for him.

 

hope you will stay in touch.

[Guest Susanna]

Chemar

 

Do you think the l-carnitine could be beneficial for my son's current anger management issues since you mention that it helps with mood?

[Guest Guest]

Chemar,

Are there any pills that have a combination of these? Or do you buy all of these seperately? We tried Bonnies regime and it did not work?

How long before you saw results, and how long before your found the right combination???

[Chemar]

Hi again

 

Susannah, you certainly could try the L-Carnitine for a week or two and see if it helps. The regular dose is around 500mg for an adult or child over 12. If younger, half the dose. if you are seeing a physician who is open to these things, you could also maybe get their input.

Mrs.Doubtfyre on the NeuroTalk Forum also has a very positive testimony of how it helped her ADHD son achieve a calming influence.

 

 

Guest

yes, some of the supps that we use are combinations as I indicated above.

The multi is a combo and we use Royal jelly as a B combo as my son reacts badly to B combos

The essential fatty acids are a combo as are the very important magnesium/calcium/zinc and the antioxidant rich grapeseed extract "plus" formula

 

I based our program on Bonnie's original research, but "tweaked" it to suit my son's specific needs and with guidance from the natural health care team of providers that we worked with.

 

We saw the most dramatic results (within a day or 2) from the OCD supps, with the tics gradually stabilising. I would say it took around a month to be able to clearly see the tic reduction in intensity and frequency.

 

Please do understand, my son has genetically inherited Tourette Syndrome, and he still tics and still shows characteristic waxing and waning.

It is just that his tics used to be very severe, and debilitating and totally controlled his life, whereas now, they are mild and dont interfere with his life.

 

HTH

[ssp]

Chemar

 

Thank you for answering my post so quickly about the l-carnitine. We have a appointment with the peditrician next week and I wanted to be specific as he is not very supportive of the supplements. We are scheduled to see a new peds neurolgist next month and I am hoping he will be more open minded. All our current neurolgist would suggest is adding Orap to the Tenex my son is currently taking and at the time I decided we needed to see someone else. This new doctor is very highly recommended so I hope he can help us.

 

Aaron is now almost ten and has had mild tics since about 5 1/2. They did not really interfere a great deal until this past May when they just seemed to go out of control. He had to stay home from school for several days and was ticcing so badly he could not go to his baseball games. At that point we tried the Tenex. He is on 2 mg per day at the present time. It has seemed to help a little bit. This summer he has had the most trouble with vocal tics (sniff, humming and almost like a gasp). This is new to us because he had virtually no vocal tics before this.

 

After saying no to the Orap I starting looking around on the web and stumbled across Latitudes. We are trying Bonnies vitamins, but so far I have not seen any really noticeable results. I was glad to see that you mentioned giving the vitamins a month or so as we have only been on them about 2 1/2 weeks and I do not have them up to the full strength she has suggested yet. I have been increasing them very slowly. Aaron does not have any of the ADHD problems or OCD (for which we are very thankful) so maybe it just takes a little longer to calm the tics.

 

Thank you for all of your words of wisdom. Reading through the forum has helped me we a very low period that I was going throught after the doctor said Orap was our only other alternative. I'll post again after we give the vitamins and little more time and I see what the Ped. says abouth the l-carnitine.

 

Thanks again

[Chemar]

ssp

 

good that you turned down the Orap!

 

I dont know anything about Tenex, but I do know that folks who are still pn meds do take a longer time to show improvements on the supplements than those that are drug free. And the overall benefits are just not as good when there are meds in the system.

 

But

 

better to have some benefit from the supps while you decide whether to continue with meds.

 

I really do recommend trying to find an Integrative doctor (ie one who is fully qualified in conventional medicine, but has gone on to specialise in alternative/natural treatments. Truly, from my and many others experience, most regular doctors just negate the benefits of supplements and the other alternative treatments, even tho they usually know zilch about them. they tend to just want to write prescriptions for everything as that sadly is the crux of most medical practise

 

Have you checked the lists posted here at the top of the forum? Although this by no means represents all the "natural" doctors out there, it is a good start.

 

http://www.latitudes.org/forums/index.php?...p?showtopic=565

 

Please feel free to ask as many questions as you need to and you are also welcome to contact me by email if you like.

 

[Robin O]

Chemar, Does the 5HTP make your son Sleepy. Also when he did take the GABA did that make him sleepy.

 

My son is finally off his Lexapro and seems to be doing pretty good but I am already seeing a little OCD creeping back in and he got anxious over a camping trip a few days ago.

 

I want to start him on the above along with Inosital. Can you lead me to a web page that can help with the amount to give him or if you or anyone else can help that would be great. He is 9 and weighs 77 pounds.

 

He also takes Bonnie's vitamins so I need to take that into consideration when giving him additional Inositol.

 

One more question!! What can of Multi do you give your son. I may take my son off Bonnie's Program only because I am trying to reduce the number of pills he has to take. ( 23 per day!!) I have been searching for a good multi- can you give me some names.

 

Sorry for all the questions. Thanks so much for your help. Robin.

[Chemar]

Hi Robin

yes the 5HTP promotes sleep as does the GABA and so are best given in the evening.

 

Inositol is usually at 500mg per day which is what my son has been on since he was 11 (some people need much higher doses tho and adults can go up to 16gm daily for short periods if needed for severe OCD

 

iHerb really is the best place to look up supplement info

here is the link to their A-Z Encyclopedia

 

http://healthinfo.healthgate.com/GetConten...;chunkiid=33802

 

The most important thing with a multivit/mineral is that it have all the essential vitamins and minerals and be FREE of color and artificial flavors

I prefer iron free multis

 

We have used a variety over time

**currently on Jarrow multi Easy powder, and made into smoothies or shakes

 

We used to use the Metagenics multi, which is also very good, but we found he seemed to react to it.

 

 

My son has been adult weight for some time now so it is a little harder to recommend for a younger child, especially as they often put the yucky color etc in kids vits.

[Robin O]

Chemar, Thanks so much for your reply. I will let you know how things go.

 

Robin.

[Claire]

Chemar,

 

I have seen recommendations for taurine as a supplement for various things. Do you know if Magnesium Taurate provides taurine?

 

Thanks,

 

Claire

[Guest Jean]

Hi Chemar and Claire,

 

I've noticed there is certain degree relationship between my son's tics and bruxism. If he has more tics during the day, then his bruxism is bad at night. I've just read an artical talking about "bruxism and magnesium". Here is the abstract:

 

"Bruxism and facial tics are most often atypical forms of tetany. Prolonged treatment by magnesium administration nearly always leads to their disappearance and also an improvement in associated functional disorders".

 

It also mentioned to use massive doses of magnesium for bruxism (and facial tics).

 

What's your take on? I would like to hear from you.

 

Thanks in advance!

 

Jean

[Chemar]

Hi Jean

 

my son used to have a very serious problem with Bruxism which was definitely a tic for him.

It caused him some tooth damage it was so bad.

 

Then, when we started on the supplements, my research led me to some info showing that the Vitamin B5, Pantothenic acid was very helpful and we tried it.

 

The bruxism stopped and has not returned

 

We used to give 500mg pure pantothenic acid, but, once the bruxism was under control, he takes it in the vitamin B rich Royal Jelly as part of his overall B intake.

 

I am sure that the high magnesium that he takes as an overall tic reducer is probably also very beneficial in keeping the bruxism at bay! I really do believe that all the supps work in conjunction with each other to produce the optimum effect.

 

You may have noticed that I mentioned in the thread on tics and braces that my son knows that anything metal in his mouth sets of the bruxism, and so he avoids even metal eating utensils

 

It has been over 3 years since we had any signs of teeth grinding, by day or night!

[Guest Guest]

Hi Jean and Chemar

 

Its true. Previously my son had teeth grinding tics too several times a day. But since I started him on MegaBs (thanks to you all), his teeth grinding stopped.

 

jc