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The Treatments that have Helped My Son


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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. A

Thank you for your quick reply!! Right now my ds is not on any of those medications so I feel better :o

 

 

Hi erica

 

the danger I spoke of is only related to when people take other supplements or medications that raise serotonin levels, especially SSRI (antidepressant) meds. combining 5htp with those can cause serotonin syndrome

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  • 4 weeks later...

 

 

Cheri,

 

 

Hi, I have tried to review all of your information regarding your son and your experiences again due to the fact that Nicholas' tests results came in. I wanted to ask you a question about carnitine though. My son has been on the acetyl l carnitine with much success (throat clearing stopped) but his results came back saying he needed carnitine. When I asked his doc. he said they are different and to put him on carnitine. Have you or anyone you know noticed a difference with the two? Also if you have a moment if you could glance at my most recent thread ...I am a little confused how to interpret the results from Neuro science and leary of the supplements suggested due to the comments made by this board and prior experiences. Did you ever clear out the yeast for your son??

 

 

abbe

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Cheri,

 

 

Hi, I have tried to review all of your information regarding your son and your experiences again due to the fact that Nicholas' tests results came in. I wanted to ask you a question about carnitine though. My son has been on the acetyl l carnitine with much success (throat clearing stopped) but his results came back saying he needed carnitine. When I asked his doc. he said they are different and to put him on carnitine. Have you or anyone you know noticed a difference with the two? Also if you have a moment if you could glance at my most recent thread ...I am a little confused how to interpret the results from Neuro science and leary of the supplements suggested due to the comments made by this board and prior experiences. Did you ever clear out the yeast for your son??

 

 

abbe

 

Hi abbe

yes there is a difference between the acetyl form and the regular L-carnitine

 

my son was on the L not the acetyl

 

I will try to find the thread you posted on your son's results and respond there later as working at present. s

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cheri

 

 

 

 

 

thanks so much I am headed in the right direction at this point and don't want to "screw" up

 

 

 

 

abbe

 

 

 

 

Cheri,

 

 

 

 

 

Hi, I have tried to review all of your information regarding your son and your experiences again due to the fact that Nicholas' tests results came in. I wanted to ask you a question about carnitine though. My son has been on the acetyl l carnitine with much success (throat clearing stopped) but his results came back saying he needed carnitine. When I asked his doc. he said they are different and to put him on carnitine. Have you or anyone you know noticed a difference with the two? Also if you have a moment if you could glance at my most recent thread ...I am a little confused how to interpret the results from Neuro science and leary of the supplements suggested due to the comments made by this board and prior experiences. Did you ever clear out the yeast for your son??

 

 

abbe

 

Hi abbe

yes there is a difference between the acetyl form and the regular L-carnitine

 

my son was on the L not the acetyl

 

I will try to find the thread you posted on your son's results and respond there later as working at present. s

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cheri,

 

can you tell me do you have any expereince with a neck Jerk. Not just pulling the neck but a full jerk. I don't know how long I should expect Nicholas to be this out of whack with this jerk from what he ingested last friday/Saturday. thx

 

abbe

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Hi Abbe

yes, "whiplash" tic was one of the worst my son used to experience

 

sadly exposure to tic triggers can have reactions that last a while...one of the reasons that we are so diligent to avoid them totally whenever possible.

 

best you can do is just keep up those epsom baths, and rub the cream into back of neck (if he doesnt like the cream, try a warm cloth soaked in epsom solution...wring it out and place on the back of his neck. Make sure he is getting enough magnesium supplement as well

 

when my son went into these major tic waxings we would head straight to our acupuncture therapist as honestly that still has the #1 calming effect on his tics, second only to magnesium orally and via epsom salts

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Cheri,

 

I know accupuncture would help him but I don;t think he can handle the needles. I am trying to get an apt for Friday to this healer that we went to Mietek Wirkus. When Nick saw him before he was tic free in 24 hours with a huge change in he behavior and moods. His web site is www.mietekwirkus.com The main problem is he is 3 hours away and that in itself is a litle stressful. i just like knowing that it will stop somehow, soon. Maybe an accupuncturist can use those needles in the ear I know they don't hurt???

 

 

abbe

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  • 1 month later...

wOW. That's a lot to swallow (pun intended!) Does your son take all of these every day? How many actual pills is it? I don't tolerate fish oil as it always makes me nauseous. I used to take zinc and magnesium but didn't seem to tolerate that well either but I can try it again; it has been awhile. I do grind my teeth terribly (my kids do as well) so I will definitely try the Bcomplex and the magnesium again. I have told both of my kids about that as well since they both grind.

Is it recommended to start all of these supplements at the same time, or introduce them one at a time? Is it safe to introduce them while weaning off of meds or should it start after totally med free?

 

Thanks

 

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 knowledgable doctors. I urge everyone to work with a qualified physician!

 

 

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)

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.

 

We have used this natural treatment protocol now for almost 4 years and are thrilled with the overall improvement.

His condition has gone from very severe to mild.

 

edited 03/31/07 to say we are now in our SEVENTH year and doing great!! :) )

 

His treatment plan was enhanced by detoxification from heavy metals (in his case mercury and chlorella supplement was used)) and 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/articles/finding_triggers.htm

 

 

Acupuncture has greatly benefitted 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 (negative) and Pyroluria (not an issue) as these can also be conditions that exsacerbate 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. 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/vitamin B6 combo (for OCD & tics)

 

* St Johns Wort (for OCD)

 

* Vitamin B12 as METHYL cobalamin

 

in the evening he gets

 

* 5HTP/vitamin B6 (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( 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)

 

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.

 

 

(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

 

information overload????

I will be happy to answer any questions!

 

:mellow:

 

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, 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. This was not so for my son, 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.

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wOW. That's a lot to swallow (pun intended!) Does your son take all of these every day? How many actual pills is it? I don't tolerate fish oil as it always makes me nauseous. I used to take zinc and magnesium but didn't seem to tolerate that well either but I can try it again; it has been awhile. I do grind my teeth terribly (my kids do as well) so I will definitely try the Bcomplex and the magnesium again. I have told both of my kids about that as well since they both grind.

Is it recommended to start all of these supplements at the same time, or introduce them one at a time? Is it safe to introduce them while weaning off of meds or should it start after totally med free?

 

Thanks

 

Hi

 

:mellow: my son takes far less supps now...he is 19yo. but yes, at the time I wrote that he was taking all those

 

he really doesnt do well on fishoil at all so we stick with the flaxseed oil

 

he now takes his magnesium in the form of Natural Calm powdered mix as well as those oh so valuable epsom salts baths (magnesium sulfate)

 

it may be the zinc you did not tolerate well.....try magnesium on its own and see maybe. many people with TS seem to benefit from magnesium taurate

 

for teeth grinding vitamin B5 (pantothenic acid ) is really good

 

we found it best to introduce supplements one at a time so as to know which helped and quickly spot which did not...a week on is usually enough time for a negative reaction to show IMO....different people react differently

 

best to ask your doc re the medications and supps together tho iHerb has some help on that

Drug Interactions with Supplements Info

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  • 3 weeks later...

Cheri,

 

I've read and studied your list of supplements. Out of curiousity, how do/did you get your son to take all those pills? My son is 9 and can't swollow pills yet. I saw you mention a "shake" at one point. Can you grind them into smoothies? Is that what you did when he was younger?

 

I have been using the Spectrum brand of DHA which are soft gel capsules, and I have been using 2 tsp of Natural Calm /w lemon flavor dissolved in warm water. He likes that "tea" but I wonder about the Stevia in it, and wondering if I should add something more than plain magnesium. I am wondering how to add taurine.

 

Jodi

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Hi Jodi

 

he felt the improvement so quickly from the supps that he would just get 'em down

 

the shake he is now on is a powder multivitamin/multimineral by Jarrow and he mixes it with his milk and fruit to make a smoothie. He was using a soy protein shake before by Genisoy, but we dont want him getting maltodextrin and that has it in. The Jarrow Multi-food seems pure and works well

 

he still takes the other essential supps (eg magnesium, some of the Bs, flaxseed oil separate) but finds the multi shake a great way to start the day and get the basic things in...he mixes some of his other supps in with the shake and adds his taurine to his natural calm in the evenings. rest of the supps he just swallows

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  • 4 weeks later...
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 knowledgable doctors. I urge everyone to work with a qualified physician!

 

 

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)

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.

 

We have used this natural treatment protocol now for almost 4 years and are thrilled with the overall improvement.

His condition has gone from very severe to mild.

 

edited 03/31/07 to say we are now in our SEVENTH year and doing great!! :) )

 

His treatment plan was enhanced by detoxification from heavy metals (in his case mercury and chlorella supplement was used)) and 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/articles/finding_triggers.htm

 

 

Acupuncture has greatly benefitted 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 (negative) and Pyroluria (not an issue) as these can also be conditions that exsacerbate 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. 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/vitamin B6 combo (for OCD & tics)

 

* St Johns Wort (for OCD)

 

* Vitamin B12 as METHYL cobalamin

 

in the evening he gets

 

* 5HTP/vitamin B6 (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( 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)

 

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.

 

 

(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

 

information overload????

I will be happy to answer any questions!

 

:huh:

 

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, 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. This was not so for my son, 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.

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Hi I just came across this website thru googling my son's symptoms. I must say i am very overwhelmed and don't know where to start. I'd say for the last couple months i'd noticed my son making a hm hmm sound when I was putting him to bed at night. I just figured it was his way of calming down, but in the last couple of weeks he started doing it during the day and I noticed his eyes blinking hard with the sounds. The last 2 days he has been sniffing ALOT, the hmming hasn't been happening much now. He also is very sensitive to sound and changes. I don't think he has any problems with socialization, he's shy and needs some adjustment time, but then plays fine. I'm going to be speaking to his teachers at church this Sunday to make sure. He is 5 and i home school him. He is very addicted to video games. I use them as a reward for 2 hours a day, when he has completed his school. He is a very picky eater, he eats gogurt, applesauce, waffles, french toast, strudels, strawberries, apples, and mcd's chicken nuggets and fries, but that is about it. He just recently has been drinking alot of strawberry milk, i'm wondering if that has anything to do with his sniffing. He also has a very short fuse and has many meltdowns a day. I'm not sure how to handle them, it tends to get very overwhelming. Since i've noticed there might be something wrong with him i've been more patient, but it is still so hard, i have 3 other children i homeschool and he can be quite a distraction and draining! I know this is alot, but there seems to be so many educated people on these issues. If you would give me any direction and advice I would so appreciate it. I'm sad and frustrated I can't see the dr. for almost 2 weeks to even start looking into this. Thank you so much.

Wendy

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