FAT

[Guest Guest_efgh]

Claire

 

Yes fatty acid issues are a common cause, but so many on Braintalk tried it and clearly it *alone* only 'did the trick' for a few people, such as Mrs. Doubtfyre. But I agree it is a BIG one, and it is almost a checklist item for kids with tics to supplement. (I still like testing first).

 

Can you please let me know if Mrs Doubtfyre just used only the fish oil for her child ? Did she see immediate improvement?

[Claire]

efgh,

 

Sorry I don't know the details! I came in after she already did it and she was just posting research on fatty acids in general. There was a big debate there by well-researched people on proportions and what kind omega3 vs omega3, and more...this is why I had my doctor run a test.

 

Claire

[Jennifer]

efgh,

 

I think the key to the fish oil is DHA. Our doctor says that is the component of fish oil that is very healing to the brain and fish is the only oil that contains it. There is a component in flax oil that the body converts to DHA, but it is not nearly as efficient as taking straight DHA.

 

Also as far as protein goes, Body Bio's dietary recommendation for our son included organic free range chicken, it is very high in nitrogen (very important for the body).

 

Jennifer

[Chemar]

Claire

 

Yes fatty acid issues are a common cause, but so many on Braintalk tried it and clearly it *alone* only 'did the trick' for a few people, such as Mrs. Doubtfyre. But I agree it is a BIG one, and it is almost a checklist item for kids with tics to supplement. (I still like testing first).

 

Can you please let me know if Mrs Doubtfyre just used only the fish oil for her child ? Did she see immediate improvement?

I dont want to speak for MRS D........ so perhaps this question should be addressed to her specifically, but I have been at brainTalk for quite some time and I have never heard her claim that only essential fatty acids are necessary to stop tics!!!!!!!

 

If anything she posts frequently about a number of beneficial supplements, including L-carnitine and others.

 

I know that she strongly believes in the vital importance of EFAs, especially with regard to ADHD....but I dont feel that it is accurate to say that this is her sole supplemental recommendation!

 

 

Also, Bonnie's research has CLEARLY shown that people with tics related to Tourette Syndrome are primarily deficient in MAGNESIUM

http://neuro-www.mgh.harvard.edu/forum_2/T...eficiencyD.html

 

and FJs research and experience have shown that tics caused by pyroluria are relieved by zinc/B6 treatment

while

PANDAs related tics diminish after the strep is brought under control with antibiotics

and

other folks swear by Feingold

or

detox

or

environmental changes.........

 

 

etc etc etc etc etc etc

 

so...as I think we have all discovered in our own situations.....the treatments are as varied as the triggers ! and it is by research, testing and often trial and error that we find what works best for our specific need.

[Claire]

Thanks Chemar!

 

I was trying to make the same point that there is no one panacea. I assumed from reading Mrs. Doubtfyre's comments that this was her biggest 'breakthrough' for her child. But regardless, I too don't believe in a one size fits all, as you know.

 

I will edit my old post!

 

Claire

[Chemar]

Hi there,

 

I am new to these sites. My son, just turned 7, and has had some very mild tics that were around for awhile - but have recently (w/i) past 2 months have become much more exagerated enough for us to start researching the causes.

 

I have notiiced on many of the ts sites that add, adhd & ocd often accompany ts. After finding little info on natural treatments for ts - I began to look at all the options for add/adhd. There are quite a few out there and they too address "esential fatty acids". I thought if these issues are often seen together than perhaps the treatments could crossover as well. I have not found a homeopathic dr yet but I am researching this now.

 

In the meantime we will visit a pediatric nuerologist next wk. Our pediatrician felt it could be something that will pass but best to see a specialist. I am frightened by all the drugs there are out there and the few natural options. I wondered if anyone here has ever tried any of the natural add/adhd treatments. One that looked interesting to me was "attend" http://www.vaxa.com/636.cfm. I would greatly appreciate any feedback on this.

 

Thanks,

Renee

Hi Renee and welcome to Latitudes Forums.

 

I took a look at the ingredient list for the product you posted the link for and, although I see many good ingredients there, I also see some that I would personally not want to use in a child that has tics as well as ADD......I realise that some of them are in homeopathic form, but I would still approach that particular blend with great caution.

 

You will find an enormous volume of information here on natural ways to help TS/tics and there is also an ADD/ADHD forum here.

 

There is also a very good thread on the NEW BrainTalk forum started by Ronna on supplements that work...

http://brain.hastypastry.net/forums/showth...read.php?t=2327

 

and on the OLD (now read only) BrainTalk

http://neuro-mancer.mgh.harvard.edu/ubb/Fo...TML/005871.html

 

and also there

a thread on good websites re TS

 

http://neuro-mancer.mgh.harvard.edu/ubb/Fo...TML/005888.html

 

both the OLD and NEW BrainTalk forums also have excellent info re ADD

 

hope this helps you

Please feel free to contact me if you need any more info and do stay in touch here.

This is a great group of caring people who share their ups and downs and oh so valuable experiences and knowledge and info.....

best support group you could ever hope to find

[Guest Renee]

Chemar,

Thanks so much for all your info. I have read your inputs on the BrainTalk board as well and you have certainly given an enormous amount of time and research to these issues - not to mention the time you've given to sharing all your experiences. Thanks, thanks, thanks!!! It really gives hope to those of us who are new to it all and feeling overwhelmed.

 

I will see a ped nuerologists tues - but as I mentioned before I am searching for a more homeopathic approach and am looking for someone - not even sure of titles of such people - naturopath? homeopathic dr? a nutritionist comb w/dr.?

 

A friend of mine has a nutritionalist who basically saved his daughter's life. She has Crohn's (sp?) disease and she was so very sick -in and out of the hospitals -they had her on steriods and other very strong meds that seemed only to make it worse. When they found this nutritionalist he put her on a great diet and she improved almost immediately with him. After a year she has very few bouts and has gained weight and grown at completely normal levels. At any rate - my friend mentioned the tic disorder to him that my son's having. He said although he hadn't treated anyone with it - he did find that reversing the dha and epa were very helpful with nuerological issues. he reccomended taking DHA Maxi 2 times a day + 50 mg of Alphal Lypolic Acid (helps nerve tissue).

 

Today I read your post on Brain-Talk about Bonnie's supplements which sounded very interesting. I do think I would rather begin slowly though and feel her supplements sound like a lot of stuff to be putting into my son's body. When you mentioned starting with a good multi vitamin/mineral supplement adding epa's and magnesium - it sounded like a better way to begin.

 

I did (a few days ago) start my son on an efa combo 3/6/9 500mg -given in am w/2 Grubs vitamin (very basic multi vita. )

+ 1 coldwater fish oil 700mg given in evening. I have not introduced Magnesium Taurate and not sure how much would be good to give him and when.

 

I greatly appreciate any input you'd have for me.

 

Many thanks,

Renee

[Chemar]

Renee...thanks for the kind words!

I know how desperate and alone I felt when my son was first dx and how I wish I had found these kind of support and info groups then........but, I sometimes feel that we had to go through what we did in order to be able to truly testify as to how alternative treatments just DO work better than prescription brain-drugs, and how one can go from the depths of despair to tremendous hope and finding the blessing in the challenge of living with a TS spectrum disorder.

 

It is good that you are beginning to supplement....you may have seen the thread here and at BrainTalk started by efgh on Fish vs Flax Oil....more and more I believe the evidence is showing that it is good to combine the two, and that including Evening Primrose Oil and Borage Oil is a big plus.

 

There was a study done in the UK some while back, where they achieved remarkable results in a test group of ADHD kids by simply rubbing Borage Oil into the skin (it has a delightful smell too)......there was an improvemnt in concentration and attention and memory as well as a lessening of hyper behaviour

 

I posted the article on the old brainTalk board and will try to locate it and post the link here.....it must have been at least 6months or more ago....

 

As to the magnesium taurate....there is pretty clear evidence from bonnie's excellent research on a magnesium factor being imortant in the tics associated with TS. She has found that the magnesium taurate form is most effective....but, as far as i know, only Bonnie and The Vitamin Shoppe sell this form at present.

 

My son takes a separate 500mg TWINLAB capsule of taurine along with his calcium/magnesium/zinc combo tab.......I have noticed that his tics do wax slightly when we skip the taurine, and increase dramatically if the magnesium combo is dropped too.

 

The best kind of doctor to see is what I call a conventionally trained alternative physician....ie a doctor who has been through regular medical school and also has qualified in alternative medicine.

However,these are often very hard to find (tho thankfully increasing)

so some people see naturopaths, some see environmental medicine doctors, some DAN doctors etc etc

 

Let us know your general location so we can see if anyone has any recommendations on good physicians in your area.

 

[Guest Renee]

Hi Chemar,

 

Thanks again for your info.

 

You mentioned you give your son - 500mg of TwinLab -Taurine along w/ a calcium/mag./zinc combo.

 

1)Please forgive my ignorance but what is taurine?

2) What are the amounts in your combo

3)Do you find a better time to give these - i.e. together in the evening, or in the am along w/multi vitamin?

 

Re - alternative dr./ naturopath - I live in NYC (Manhattan) and would greatly appreciate any referals.

 

Thanks again,

 

Renee

[Chemar]

Hi Renee

from iherb.com's excellent encyclopedia of all supplements

 

Taurine is an amino acid, one of the building blocks of proteins. Found in the nervous system and muscles, taurine is one of the most abundant amino acids in the body. It is thought to help regulate heartbeat, maintain cell membranes, and affect the release of neurotransmitters (chemicals that carry signals between nerve cells) in the brain.

 

Bonnie ( http://www.bonniegr.com )has found that when magnesium and taurine are combined ie magnesium taurate...it is very beneficial in reducing tics.

 

The combo that my son takes is 800Cal:400mag:50znc and then he takes the separate 500mg capsule of taurine

 

His multi has an additional 200 calcium, 100 magnesium and 15 zinc

 

I used to give him the mag combo and taurine in the mornings , but now I give it at night and give the multi in the morning along with his EFAs and other stuff.

I switched to evenings after reading of the relaxant effect of magnesium taurate.

 

I MUST STRESS AGAIN that I have a great alternative physician who approves the supps I give, and a naturopath as a friend who guides me too.

 

I am going to start a new thread to see if anyone can recommend a doc for you in Manhatten (My husband is from NYC too )

[Guest Renee]

Chemar,

 

Thanks for the enlightenment on taurine! I did buy a magnesium-calcium-zinc combo today plus the taurine. The combo supplement's ratio is about the same but the levels are only about half of what your son uses. Of course when I find a doctor who's informed about this I can increase it if he/she agrees - but as for now I'm going to start w/ moderation. Problem is the pill is too big for my son. I tried breaking it up but it just wasn't working for him tonight. He can take the large efa pill - but it's soft and narrower - much easier to swallow. I do see that he doesn't get much magnesium in his normal diet. That is - his multivitamin has only 1g of magnesium gluconate - 1% of Daily Allowance - so now that I have been on this site I see just how little he's been getting. He's not a big meat eater - doesn't like fish much either so I need to research foods that are high in magnesium as well.

 

I would greatly appreciate your help in finding someone here.

 

So you're married to a New Yorker? Do you and your family visit here ever? I find it's a great city for adults & kids.

 

Thanks again for your help.

 

Renee

[Renee]

Hi everyone,

 

As I said - I will post our findings so:

 

Last night we had our 1st visit w/ a pediatric neurologist. He said he would not catagorize our son w/ ts but w/a moderate tic. Said it affects about 3 to 5% of schoolage children - which doesn't seem like a lot but when you realize howmany schlage kids there are - it's a rather large number. He spent about 1.5 hrs w/ us giving about 1/2 that time to evaluating our son and the other 1/2 discussing our history and his observations/thoughts. As there is not any background in our family - well one but not immediate family member that we knew of {there's a cousin of my husband's who he remembers would shrug his shoulders often} he wanted to rule out strep. He's had experience of some children who harbored strep in their tonsils (which can't always be detected w/throat swab) and once they were removed they had significant improvement. Said he'd like to do some blood tests to rule out the strep. He explained that there's a part of the brain that memorizes actions - breathing, walking, jumping, language etc so that we don't have to re-learn these everytime we need them. This part of the brain is basically firing-off these signals and so the body does the action. He mentioned the dopamine prob. but he's NOT in favor of medication for tics unless they are really causing probs in school etc. - which so far they haven't. He's in favor of good nutrition/vitamins (not mega doses though) but didn't have much faith that would help significantly.

 

He did observe/assess our son's behavior and as you all know too well - children with these tics often are accompanied by add, adhd, ocd & anxiety. He found our son to be a bit impulsive but nothing extreme. Stressed that we needed to help him understand the importance of being able to focus and stick with those things he finds tedious and frustrating as although his school is understanding and supportive of him in 1st grade - as they get older it will only get harder. We need to help him appreciate that learning is done best in certain environments/or with certain study habits as it can help him a lot in his school enviroment.

 

Regarding how to help our son understand what's happening to him - although my son doesn't really see his sniffing as any real prob. - just a way to stop an "itch" he has in his throat - the dr. said just explain to him he has this habit that happens to him and there's nothing wrong with it. Some kids have asthma, some have speech probs., some need glasses - he has this. Not to make it a big deal - short & concise but also let him know that should anyone bother him about it he should let us know.

 

He did say the majority of kids do grow out of these in their teenage yrs. He asked us to follow-up with him after the blood test for strep and if that's neg. to ck in periodically and let him know how he'd doing.

 

I came out feeling - well pretty much the same - that I really need to find an alternative dr. I do believe there's something that can be done to treat or at least ease these tics.

 

Thanks to all who've made me feel welcome here - to share and learn together. This community has given me an enormous amount of support - and I thank you all!!!

 

Best,

 

Renee

[Chemar]

Hi Renee and so glad to hear you have a doc who didnt just try to push for medication!

 

he is very right about a blood test being the only accurate way to test for strep related to PANDAs...also the strep in the throat isnt the ONLY one that can do this.

 

I saw that Claire posted the link for DAN doctors for you as a start.

I am still waiting to hear back from some contacts on additional alternative docs for you to consider.

 

I have located a physician in Manhattan that may just be what you are looking for, as he is a qualified MD who also specializes in alternative medicine. Hopefully he is qualified to guide and advise you re neurological issues.

 

here is his website

http://www.boltemedical.com/

 

if I hear of anyone else I will post back here

 

keep looking forward Renee.......their IS light at the end of the tunnel

[Guest Jean]

Hi Renee,

 

Thanks for the updating! It good to have the Ped. Neuro. to evaluate first. Your doctor basically said the same thing as my son's Ped. Neuro., but yours sounds much caring. We were simply told to "ignore" these tics. Like you, we too would like to help our son further, i.e., if not completely eliminate his tics, but at least ease them. I don't remember what kinds of tics that your son are having. For "sniffing", stopping dairy really helps. We are seeing a naturopath (who was found from the DAN list) currently. As a starting point, my son had hair heavy metal analysis and stool analysis. The test results are fine except he lacks of some "beneficial fluora" (could be due to the use of antibiotics). My son has been taking HMF and remedy lately… Good luck on your searching of alternative medicine. Please keep us updated…