Chemar

Hi Sorry...work has been hectic so i havent been posting much. Yes, the daylight lamps are the ones that you see advertised with full spectrum lightbulbs. Claire, as to the supplements, I use Bonnie Grimaldi's research as the basis for the regimin i have my son on......and I have refined it to suit his specific needs. I use a number of different brands and have basically two criteria They must be pure (no artificial color, flavor, propylene glycol or other "fillers") and they need to fit my budget which is very tight. The combinations that I give come close to the overall doses recommended in Bonnie's original research http://www.geocities.com/Area51/5207/ts_ma...bonnie_sup.html and I have added some other things that she also now recommends in her new program http://www.BonnieGr.com and ones that I have determined to be good for my son from my own research and enquiries I give a basic morning group of 1 multivitamin/mineral (the multi has all the good antioxidants etc, and is high in the B group vits, and I add a B1) 1 combo flax/borage/omega-3(fish) oil plus 1 Lecithin blend acetylcholine 1 combo cal/mag/zinc 1 taurine 2 ginko biloba(for ADD) 1 St Johns Wort (for OCD) 1 l-Carnitine 1 Royal Jelly 1 GABA (for OCD etc) in the evening he gets 1 5HTP (for OCD-) 1 Inositol(for OCD-) 1 Evening Primrose Oil 1 Methionine 1 coQ10 1 GrapeSeed extract 1 Bilberry(for vision) (The doseage of the supps depends on age and body weight so I have not included it here as my son is 14yo and >150lb) That is the basic outline of what he gets, and of course we watch the diet VERY carefully so he eats healthy good stuff, no artificial colors, flavors or sweeteners and NO HIGH FRUCTOSE CORN SYRUP, no caffeine and mimimal sugar(we only use pure Turbinado sugar) he likes pure dark chocolate, and is allowed some of that, and i try to make most things from scratch and use honey and maple syrup for flavor. It sounds overwhelming but once you get into the routine, and start reaping the benefits, it is SO worthwhile. I actually dispense the pills into Ziploc snack bags and do a week's worth at a time then label them "morning" or "evening" and so it makes it easier

Thanks for posting the info on BrainTalk Jennifer.....hopefully lots of people will actually react and send in those email petitions. I used the official letter thru the http://www.citizens.org website AND I emailed Senator Durbin (the sponsor of S.722) as well as the co-sponsors, Sen Clinton & Feinstein. I told them about my son and how easy and affordable access to supplements is essential to his well being. I am also waiting for a return call from the health Editor for my local newspaper.

Hi again It is never too soon to get rid of environmental allergens like mold! Even without a TS factor.....they are big time bad for everyones health! Dustmite is another meanie....hard to live in a dustfree home, but every little bit helps lots

Hi Claire I have been following this thread with interest and hope you will keep posting as you get further diagnosis. Your son is blessed to have such a caring Mom, and one with the desire to become as informed as possible to better help him. My son is on a supplement program that has helped him enormously, but we still have to be VERY vigilent for the things that are known tic triggers in him. The games, computer, TV and movie theatres are such and we have found that using those new "daylight" lamps helps a lot.....the darker the room, the worse the photosensitivity seems to be ....and also thge nature of the game or show...for example those simpler games that dont have explosives or lots of flashing, moving stuff dont seem to set off his tics like say a war game, or one with lots of motion. As he is 14 now and does like to go to the movies with his friends, we have learned that increasing some of his supplements by giving the extra dose before the movie seems to help him a lot. I wish you all the best in your quest to find the answers to help your child, and do encourage you that there is always hope. My son has gone from having severely disabling tics and OCD to very mild tics and almost non-existant OCD....I attribute this to answered prayer and the pursuit of natural treatments instead of pharmaceuticals. As a footnote, my son has derived enormous benefit from biofeedback and accupuncture. Cheri

Jennifer would you please also post the info that you have on this on the BrainTalk Forum There are many parents and TSers on the board there who are active and would be willing to do what is needed to add their voice of protest to any regulations that would inhibit the natural treatments that they have found so very beneficial. Here is the Forum link http://neuro-mancer.mgh.harvard.edu/cgi-bi...er=99&SUBMIT=Go thanks Cheri

Dear Dan & Maureen Just to let you know that I truly feel for what you are going thru at this time! I have been there myself, and just want to encourage you that there is much reason for hope! Just as the other posters here have indicated...there are many ways to improve life with TS. My son is nearly 14 now, and has shown a remarkable improvement over the last 2 years where he has been on the supplements recommended for TS. He was on meds for a year, but they really did not help, and in fact made things much worse and brought many nasty side effects. My best advice to you is to proceed very cautiously in the pharmaceutical area. There is such good feedback on success with proper diet & supplementation, allergen avoidance, environmental optimization, biofeedback, accupuncture and so much more. Knowledge truly is vital in living with TS and so try to do as much research as you can. It can sometimes seem overwhelming but just take it one day at a time and dont stress out! There are MANY triggers to tics, and as you identify them, just gradually try to eliminate...but you cant do everything all the time....! It gets easier as the understanding and wisdom grow, and you will gradually make progress. And do stay in touch here for great support and shared experience. I would also like to recommend the BrainTalk forum as a really great support group where you will learn a lot from other people's experience. http://neuro-mancer.mgh.harvard.edu/cgi-bi...er=99&SUBMIT=Go All the best to you.......your child is already on a positive track because he has such caring parents

Someone just posted the link to this article on BrainTalk and so i felt it of value to post it here too. After the disastrous side effects that my son suffered from neuroleptic medication I am so greatful to see publications like this, as most conventional doctors take offense when one suggests that these drugs are more dangerous than they are made out to be. here is the link http://www.ahrp.org/risks/biblio0100.html

The current ACN Newslatter has an informative article on ZOLOFT here is the Newsletter link http://latitudes.org/cgi-local/mojo/mojo.c...223856&list=acn and here is the link to go direct to the ACN article http://www.latitudes.org/articles/zoloft.html

Hi Phyl.....I have always benefittd from your P&A postings on Brain Talk so very good to see you here too Our evals were initially two-fold....both lab tests as well as a method known as Radiogenics...somewhat controversial in this country tho covered by med.insurance in the UK i believe. It was quite uncanny as to how we would get the status of the parasites and viruses from the radiogenic eval, and then the lab reports would come in and confirm......eventually we relied on just the radiogenics and then had final lab results to confirm the all-clear. The team that do the radiogenics also did accupuncture, reflexology and biofeedback, along with the homepathic remedies, and introduction of the careful dietary and environmental changes, plus guided us on the supplemental needs. The entire appraoch was very beneficial, but it wasnt till we followed Bonnie's supp guidelines fully that we saw the incredible tic reduction that he now has. My son declares tho that NOTHING brings him greater tic relief and overall well-being than the period immediately following accupuncture.(seems to last a good 3-5 days!)

Phyl..... the one thing that truly did help us from my son's homeopathic eval WAS the parisitic and viral detections, including Candida(yeast) As I am not keen on antibiotics it was so great to get the homeopathic treatments for these, and my son definitely benefited in general health as well as in tic and OCD reduction. The products recommended for him were FuturePlex AntiTox, distributed by Apex Energetics in Santa Ana, Calif........good stuff!

Sheila, That is so true about the labels and scratchy clothes etc.......for my son he has me cut all labels out and wears his socks inside out because the seams irritate him etc etc......long list of sensory hypersensitivity! I have an excellent book on Sensory Integration Dysfunction by Carol Stock Kranowitz called "The Out of Sync Child" ......helped me understand a lot about these sensitivities. Cheri

Hi Carley Yes.....it is pretty widely accepted that high temps seem to trigger tics. As to lights....my son only tics more if their is flashing light like a TV in a darkened room, movie theatre etc or with neon and fluorescent light.

Hi Rebecca, Usually the conventional docs dont suggest the mineral tests but you could ask about it or request it done.......I believe the Great Smokies Lab to be the best. You can also email Bonnie Grimaldi about this at BonnieGr@aol.com She really is up on the best tests and the best places. We tried homeopathy for our son, but still find the supplementation and dietary/environmental care to be most effective. Homeopathy is excellent in many conditions, i am just not personally convinced, from our experience, that it is the best treatment for TS, especially when it is TS+OCD/ADDetc. But that is not to say that it may not work wonders for some....just didnt for my son. We have also found accupuncture and biofeedback very helpful in the past when the tics were severe. Cheri

I think you can feel pretty safe using Bonnie's and other pure supps at the correct dose levels. These are natural building blocks of our bodies and the research clearly shows that they are deficient in people with TS the drugs on the other hand are.....IMHO.......like swallowing poison! I still feel tremendous guilt at what i allowed doctors to prescribe for my son without first checking on them.....thankfully most, but not all, of the detrimental side effects he suffered are now gone...two years drug free.....and doing great..........

Hi Apriella dont worry ........ you certainly didnt make anyone angry people are often very sensitive about TS, it's diagnosis and it's treatment so that often colors reactions. Your input is very valuable as we are all always on a learning curve, and sharing our experiences with one another helps us all.

Ummmmm.....just to clarify......the statement "Saying no to drugs and saying yes to what makes our kids happy ".....was NOT made by me, but is part of the original post made by apriella who started this thread....... I most certainly do not advocate a philosophy that suggests that people never benefit from the conventional prescription drugs as I know many people who have found benefit, and who have suffered mild to no side effects.... My position is that these powerful brain drugs should rather be a "last resort" and that they should be carefully researched in terms of potential side effects before being given (especially) to children. My feelings are very much based on the personal experience that my son had where the side effects from the drugs did horrible things to him!! I also have a lot of experience with other adults and children who have suffered severely from the effects of these strong drugs, especially the neuroleptics and SSRIs

Hello and welcome...... You will find that the majority of people who post here are those who favor natural or alternative treatments for Tourette Syndrome,rather than medication. Most of us have had great success with the use of supplements and special diets that eliminate known tic triggers like artificial colors, flavors etc. It is now fully recognised that certain vitamins, minerals and amino acids are deficient in many neurological disorders, and thanks to the research of people like Bonnie Grimaldi ( http://www.BonnieGr.com ) the areas where boosting is needed are known. My son, who also has ADD,CAPD,OCD and SID along with the TS has benefitted tremendously from a variety of treatments including Occupational Therapy involving Motor excercise, Biofeedback, Accupuncture, Diet & Supplementation and also Environmental optimization to avoid allergens and other known tic triggers. I am not too sure as to what you mean by the term "mental stability" as I certainly would DISAGREE that people with TS are necessarily mentally unstable, .......it is a neurological disorder with a genetic basis and yes, there are things that can help to damp it's symptoms and keep it in the milder, waning phase, but I would caution against the suggestion that any currently known treatment can "cure"it..either physiological or psychological. Yes, there are psychological issues that can be comorbid with TS, but in many cases TS manifests as simple, mild tics alone, with absolutely no need for medical or psychological intervention. I certainly would agree with your point of view that many doctors have very little knowledge about TS, and tend to dispense potentially harmful medications that will cover the symptoms. Thankfully there are a steadily growing number of physicians who seek to educate themselves on the underlying factors in TS and other neurological disorders, and who recognise the value of alternative treatments, and the dangers of the conventional prescription drugs. My son has always found excercise to be a great tic/OCD damper, so i can see the benefit of the motor excercise you describe, as long as it isnt an attempt to force tic suppression, which is not a good idea........there is much evidence that shows that enforced tic control can lead to an elevation in OCD, rage, depression etc. I would be interested to hear a bit more about the motor program that you mentioned, and am certainly pleased that you are seeing success for your family thru it.

Hi Karen I have seen your post here and on BrainTalk and so hoped you would get the answers you are seeking. I have no experience with seroquel, except to know it is used for schizophrenia?? so i am quite puzzled at it's use for TS....but as i said I really am ignorant about it. I can only go by our experience to say that if you believe a med is negatively affecting your child.......it probably is. Mothers are so fine tuned to their kids that we notice things so much more acutely. For my own child, i saw meds only make life worse for him For many i know they have made life better. It is a very fine line isnt it........but........if soemthing is not helping, and things seem to be going downhill.....perhaps, rather than just increasing the dose, it may be time to try another approach!! There is an excellent book by Dr Peter Breggin MD called "Your Drug May Be Your Problem" that may provide the answers you seek The Breggin website is http://www.breggin.com and the book info is on the site at http://www.breggin.com/yourdrug.html I got the book thru Boarders Books HTH

Robin, i also just read your post on BrainTalk so i see why the Zoloft was introduced. Although it is great that you are using Bonnie's supps, and should continue, i have noticed that there is less results with supps when there are also meds in the system. My son's OCD and anxiety and depression were very severe......bothered him far more than the tics......but the meds just never really seemed to help and just brought a whole bunch of side effects. He is on 5HTP now, which elevates seratonin and it has been a total change for him. He does also take other supps like inositol and GABA to help too, plus all the recommended TS ones YOU CANT USE 5HTP WITH ZOLOFT OR ANY OF THE SERATONIN BOOSTING DRUGS THO AS THAT WOULD CAUSE SERATONIN SPIKING WHICH IS DANGEROUS. Royal Jelly is a wonderful general purpose nutrient but is especially good for TS etc as it has a high B vitamins content. We started my son on it as he had a severe jaw clenching/tooth grinding tic and our doc suggested the Royal Jelly and it worked!! The best brand is BeeAlive http://www.beealive.com/index.cfm?aID=0 but if we run out( or because of our need to stay in budget) I also use the NOW or Royal Gold brand successfully Let me know if you need any more info

Hi Robin My son was never on Zoloft...but he was on Luvox which is very similar......and YES it made his tics and OCD and just about everything far worse!! I have never regretted the day we went med free and have seen ONLY positive results implementing things like Jeff has suggested and following the recommended supplement treatment. why was your son put on Zoloft? I know many people do benefit from the meds so i am not just trying to put meds down....but, I dont quite understand why he went on to a med when he was doing well??

i just realised that I wasnt logged in when i made my posts this afternoon....sorry!

oops...just noticed i wasnt logged in when i made that last post....

Hi Carol I posted them in the 2 thread avove here "Supplements" and "Helping Kids to take pills" let me know if you need more info

Betty yes I would choose the Taurine with the Omega3 running pretty neck on neck. You are focussing on tics...and for tics the overall supps in Bonnie's TS-control are the best....other stuff may help too, but you can add those in time and when he feels more comfortable swallowing down whole caps and pills. I had to learn REAL quickly as my son suffered severe side effects during the year on his meds(Haldol/Luvox) and then went into toxic shock when withdrawing from those and starting Zyprexa.......I had to do something so...........I devoured every bit of information and asked endless questions till We were blessed to be referred to a holistic pediatrician who runs her practice from both sides....she prescribes meds, with very careful consideration of the individual and knowledge of the potential problems the med can cause....but also offers alternative treatments like supplemental, environmental etc. She told me about Bonnie (at that time her supps werent on the market, just her plan....) and also directed me to a lot of other research to help me understand WHY these alternative methods worked to CORRECT imbalances and deficiencies and so make things better, but not in the drastic way that the meds do. She also educated me on environmental medicine and allergy effects plus the strep/PANDAs stuff etc etc. I have a background in Med Research, so delving deeper came pretty easy and the more I learnt the more things made sense . And, of course, the best reinforcement was actually seeing the positive results in my son........

The vocal tics do seem so tough to cope with dont they! It is kinda hard to hide them My son had one where it became blended with OCD and he had to yell a certain way to get the feeling the vibration made at the back of his throat!!! It went on for weeks and he couldnt even get to school, or get to sleep....and driving in the car was TORTURE as he just yelled out every few minutes! He HATED it but couldnt stop it! Those really were the worst tics for me to see him go thru...when they blend with OCD it can become alarming and even scary... BUT that was in the bad old med days, and before we started the supps and especially the ones that help the OCD Since we have him on those things are miraculously better! Tics and OCD and even the ADD/SID is immensely improved. I posted earlier today on another thread here just which supps we use and I am going to copy it here just in case it can be helpful. l-carnitine and taurine have greatly helped the tics, and I also really like the Royal Jelly effect in stabilizing general tics. It is a mega-nutrient and has loads of good stuff in it for general health, but many specific to helping tics too. here is our basic system: Betty It may be my imagination, but I see a link in vocal tics and either stress/illness/allergy/food substance reactivity. Make sure he is not getting those yucky artificial tic triggers especially Aspartame(NutraSweet and food coloring and high fructose corn syrup) It may just help to keep the vocal tics down