The Treatments that have Helped My Son

[Chemar]

hi jkc

 

just to clarify, I was answering a question re acupressure above.........my son has only ever had ACUPUNCTURE, not acupressure, and we have a clinically certified acupuncturist

 

[jeannette]

Have you tried Ionics as part of the detoxification process? The Ionic Footbath is very helpful with so many different conditions. There are also Ionic Water Purifiers - all along the same lines of what you are already involved in. I have developed a number of educational programs around Ionics.

 

Also, Craniosacral Therapy is a wonder for balancing the nervous system. I've been teaching CS since 1999.

 

I've been teaching Alternative Wellness for nearly 20 years now. If you are located in the Huntington Beach, CA area, I give classes at two colleges. Good luck.

[Chemar]

Hello Jeannette

we have found the epsom salts tubs and the acupuncture/biofeedback/reflexology and chinese cupping treatments that our therapist does to be excellent for detox and so have not needed to follow any other protocols.

 

 

My son does not like the sensation of craniosacral therapy, tho I know a couple of members here have reported good results with it.

[sunshine9]

Thank you so much, this is so helpful!! my problem i sthat I cannot find a good integrative doctor in NYC who is familiar with TS+Allergies which my daughter has. How did you find the doctor that helped you? sunshine9

[Chemar]

Hi Sunshine and welcome

we were referred to the doctor by a friend.

 

if you are seeking help with TS and allergies you may benefit from an Environmental Doctor

 

have you checked the "finding medical help" sticky

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

 

hope you find a good Doc to guide you

[Chemar]

bumping up for the new mom who contacted me for this info

[sharonakasheri]

Hi Cheri (Chemar),

I would like to ask you some questions about the supplement program you are using for your son. I have been using Bonnie Grimaldi's supplements with my 17 yr. old with no success and am very discouraged. Would love to chat with you by email. Do you mind giving me your email address so we can discuss your program? Or you can contact me offline at s.schafer@att.net Thanks!!

 

sharonakasheri

 

 

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!

 

 

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.

[Chemar]

Hello Sharon

it would be so much more beneficial to answer your questions here as then that can also maybe help someone else, and also becasue our other parents here may be able to provide you with additional experience and info that could really help you find answers for your son. ( you can also private message me via this forum )

 

does your son have Tourette syndrome? How long have your been using BonTech for him? any other conditions? testing?

 

 

the BonTech supplements are excellent, but we have had reports here over the years that some people seem to react to some of the ts-plus ingredients and so see little or no tic improvement. I based my original program for my son on Bonnie's original protocol, before she had BonTech, but made a number of adjustments based on his specific testing and advice from his physicians.

 

Are you using the fish oil? many of us have found intolerance to that and use flaxseed oil for omega 3 instead.

also some people dont seem to handle taurine (taurate) well tho they appear in minority

 

I also need to emphasize that we did not see the best results from the supplements UNTIL we cleaned up my son's diet and environment of the things he is reactive to!

 

I hope you will post a bit more of the difficulties you are seeing so that all of us can try to help

[Chemar]

bumping up by request

[Chemar]

bumping up for newbies who have asked about this

[abbe]

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!

 

 

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.

 

 

 

 

Hello,

 

Here are a couple questions??

 

Why the b1???

 

How much total b 6 do you do? what does your son weigh??

 

How do you figure out the carnitine made him edgy and did you use it for the vocal ticks when you did?

 

Did you ever use NAC?

 

Did you ever use glycine?

 

 

Does your son tolerate wheat or diary ?

 

 

Was your son's ph ever tested?

 

 

 

thanks so much

 

 

abbe

[Chemar]

Hello,

 

Here are a couple questions??

 

Why the b1???

 

How much total b 6 do you do? what does your son weigh??

 

How do you figure out the carnitine made him edgy and did you use it for the vocal ticks when you did?

 

Did you ever use NAC?

 

Did you ever use glycine?

 

 

Does your son tolerate wheat or diary ?

 

 

Was your son's ph ever tested?

 

 

 

thanks so much

 

 

abbe

 

 

Hi Abbe

we added B1when my son went on a youth missions trip to south America as we were told it prevents mosquitoes from biting. he found it reduced his tics so we kept it in his program. B vitamins in general are found to be very helpful i tic reduction BUT some people (like my son) do not tolerate B Complex so best to give the B's separately

 

we used to use B6 but now prefer the P-5-P form. dose is weight and age dependent

 

my son is now 19yo and so his requirements in terms of dose etc are very different now

 

he used carnitine successfully for a persistent vocal tic. when that had waned he went off the carnitine. vocal tics intensified about 2 years later and he started carnitine again but found it made him feel weird and edgy so he stopped it

 

never used NAC or glycine other than the magnesium glycinate

 

no intolerance to wheat or dairy. we tried elimination. his allergy testing also showed he was fine with them.

 

I seem to recall ph tests being done around the time of hair tests etc

 

hope that answers the questions for you

[abbe]

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!

 

 

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.

 

 

 

 

Hello,

 

Here are a couple questions??

 

Why the b1???

 

How much total b 6 do you do? what does your son weigh??

 

How do you figure out the carnitine made him edgy and did you use it for the vocal ticks when you did?

 

Did you ever use NAC?

 

Did you ever use glycine?

 

 

Does your son tolerate wheat or diary ?

 

 

Was your son's ph ever tested?

 

 

 

thanks so much

 

 

abbe

 

 

 

 

cheri,

 

thanks for your response.. b1 does prevent mosquitos from biting that I am sure off! I thought I noticed an improvement also using the b vitamins seperately. I am just trying to still figure the best daily protocal for my son. thanks for your response and support.

 

 

abbe

[abbe]

Hello,

 

Here are a couple questions??

 

Why the b1???

 

How much total b 6 do you do? what does your son weigh??

 

How do you figure out the carnitine made him edgy and did you use it for the vocal ticks when you did?

 

Did you ever use NAC?

 

Did you ever use glycine?

 

 

Does your son tolerate wheat or diary ?

 

 

 

Also which carnitine did you use.? I understand some forms can be toxic to the body

 

abbe

 

Was your son's ph ever tested?

 

 

 

thanks so much

 

 

abbe

 

 

Hi Abbe

we added B1when my son went on a youth missions trip to south America as we were told it prevents mosquitoes from biting. he found it reduced his tics so we kept it in his program. B vitamins in general are found to be very helpful i tic reduction BUT some people (like my son) do not tolerate B Complex so best to give the B's separately

 

we used to use B6 but now prefer the P-5-P form. dose is weight and age dependent

 

my son is now 19yo and so his requirements in terms of dose etc are very different now

 

he used carnitine successfully for a persistent vocal tic. when that had waned he went off the carnitine. vocal tics intensified about 2 years later and he started carnitine again but found it made him feel weird and edgy so he stopped it

 

never used NAC or glycine other than the magnesium glycinate

 

no intolerance to wheat or dairy. we tried elimination. his allergy testing also showed he was fine with them.

 

I seem to recall ph tests being done around the time of hair tests etc

 

hope that answers the questions for you

[ajcire]

My ds has possible pandas and his dr. recommended 5hpt. He said it was safe. He is on no other medications except antibiotics for a current strep infection and then will be on a few months of zithromax antibiotic. I see you say there could be dangerous side effects... that made me nervous as I started it last night. What kind of side effects? The dr. told me to just watch for too much sleepiness but I only give it to him once before bed. He said that other than that to not worry about it. What should I be looking for? He recommended it for mood and mild tics and some sleep issues that we believe to be associated with pandas issues.