Chemar

efgh must confess, I didnt realise that you were seeing a naturopath. Has he run the tests to form a profile for your son? That really is the best way to formulate a good plan...... sorry for not remembering if you posted about test results......I sometimes get lost between here, BrainTalk, our stuff and business Royal Jelly really is such a good nutrient....especially for a child like yours who has to avoid the dairy etc....as long as he isnt allergic to bee products, it can only be of benefit IMO

efgh if your son is doing well on what you give him, I would say why change it?? Royal Jelly ( the Bee Alive and other reputable sources) is VERY safe EXCEPT for people who already have allergies to bee products. My strongest reccomendation to you still is to find an Integrative doctor or a naturopath or even a holistic nutrition therapist who can offer qualified guidance on supplementation specifically suited to your son's needs As you discovered with the fish oil and possibly the B complex....even individuals with similar symptoms sometimes need different treatments. It is also important to remember that my son has the full Tourette Syndrome spectrum of disorders......whereas many of you are dealing with transient tics or tics induced by toxins, allergies, strep or whatever........in our case, although these issues caused an escalation of his symptoms...correcting them has not magically "cured" his genetics!! He carries the TS gene and it did switch on around his 10th birthday. His profile is therefore not necessarily related to others here. That is why individual profiling, followed by appropriate treatment is truly the best route to follow I feel the benefit of sharing here is so that others can go to their physicians armed with info and request action where necessary.......as we have all discovered...even the most well intentioned doc dont always know everything...and the best ones will research and become informed...and so become even better at helping!

we ran blood, hair, skin and radiogenics tests..........same results! so I dont think it is the labs....I feel it is something inherant in a polluted world which toxifies and hypersensitizes people!! I think that if more people ran these tests...they would also discover allergies and toxins....most people just think they are sickly, and take endless meds and stuff....instead of getting to the root of the problem.

Gina it is a good idea to add vits at the minimum dose and then wait about 1 week till you add the next one or 2 weeks before you up the dose. If your son is on a multivit that has B6(pyridoxine) in it, then he really shouldnt need more than 50mg B6 extra, unless there is reason to believe he may have pyroluria, in which case more B6 is required, along with zinc FJ*, on the BrainTalk forum is the expert on that. Usually (and this is what I do, based on Bonnie's research) for TS, it is a good idea to give extra B6, along with additional calcium, magnesium and zinc......these often come ready blended.

Hi Gina the best place to find out all about most supplements is at iHerb.com's Health Encyclopedia.......if you dont see it there under a name you are familiar with, it is probably still there, but just under a different name....eg Pantothenic Acid for VitB5 etc http://www.iherb.com/hs.html My son gets the full RDA of ALL the B vitamins from just his multivitamin...... I dont give him extra B3 or B2........he doesnt need extra riboflavin(B2) and reacts to too much Niacin(B3)......even the No-flush variety that Bonnie recommends. We tried giving it to him when he was showing the Tardive Dyskinesia after being on the meds.....but it made him fee very weird......and we have tried it again on a number of occasions but he just cant handle it! Thankfully the Tardive symptoms went away.....dont know exactly what got rid of them but I was very pleased to say bye!!!!! As to Royal Jelly......it is a substance produced by the queen bee and this is used to feed the baby bees. A lot of research has been done on it and it is, IMHO, one of those "wonder" supplements......another testimony to the infinite complexity of Creation It contains a wealth of nutrients, and is very rich in vit B......... if you can afford it, the best brand I think is Bee Alive.....you can learn lots about Royal Jelly from the Bee Alive website http://www.beealive.com/ but many of the "freeze dried" cheaper brands do still have very good content, like the one made by NOW

efgh I use Rexall brand of B vitamins. The Vitamin analysis was part of his full spectrum blood tests and was also done thru the radiogenics.

I just read this in the New York Times....I am quoting the relevant section, as I dont want this to be a political post rather just something that is of interest and concern to those of us that have problems with mercury and health.

Nope....I dont give him B12 extra from what he gets thru the multi and Royal Jelly. His profile showed he doesnt need it. I take extra B12 tho.....it is very important for my system and I get very lethargic and rundown when i skip it.

efgh if you are using a good multivitamin, it should be providing 100% of the RDA (recommended daily allowance) of EACH of the B vitamins. People with TS seem to require extra of SOME of the Bvits, most noticeably Vit B6 and Vit B1....and for some people. ....Vit B5 Royal Jelly is a nutrient rich product that covers a very wide range of ingredients We were advised to use it as an ADDITION to our supplement program...as i have already mentioned, we react adversely to B Complex. My son therefore takes his multivit, PLUS Royal Jelly PLUS separate B1 and B6 When he has tooth/jaw tics, we add an extra B5 for a while.

ummmmm I had enough VERY knowlegable naturopaths recommend goats milk to me for me NOT to take this one too seriously! We dont use it anymore as we have NO dairy allergies.......however, it is WIDELY used as the milk of choice in many other parts of the world. here is a good page of info on it http://www.whfoods.com/genpage.php?tname=f...dspice&dbid=131

searching....... as to the first link.........hmmmmm.......interesting theory, but I am a little cautious that they would consider a range of answers to questions sufficient evidence as to the thickness of the myelin sheath??? That is not to say that she is not on to something relevant......just a rather unscientific way of measurement. Now the second link is sure informative and casts an interesting light on supps for patients who have comorbid TS/OCD.....as they are saying stay away from folic acid, B12 and choline for OCD.....yet these are beneficial in TS from my understanding! I am going to take some time to fully digest this info and run it by our physicians/therapists to get a qualified view..... thanks for posting this......definitely food for thought!

Gina your child may be fine with the B complex......some people do seem to handle it... I am surprised tho that they dont have B1(thiamine) in it?? Vit B6(pyridoxine) seems to be very important in TS, and is often combined with calcium/magnesium and zinc . B5 IS Pantothenic Acid Vit B12 is a really important one.......many VERY sick people, including those with chronic fatigue syndrome and some extremely serious illnesses have found great benefit from B12. In terms of the extra ones to give (ie above the RDA).....this is VERY much determined by the child's specific needs Bonnie's guidelines are good ones to follow here in terms of general Vt B supplementation for TS

VERY good point, Ronna!

Hi Robin I really dont know.....we strted the B5 because he was clenching his jaw and grinding and banging teeth together in a tic.....the doc recommended it as it is known to help bruxism and it worked wonderfully. I dont give bee pollen but DO give Royal Jelly produced by queen bees and it is rich in all nutrients....specifically the B vitamins. once my son's tooth/jaw tics wer stabilised, the doc suggested the Royal Jelly instead of the pure pantothenic acid.

Interesting report! However......my family must be the exception....... my oldest son, now nearly 18yo, was an avid cartoon watcher..we lived in S Africa till he was 4, and, although we had only very limited hours when TV was broadcast there back then...and a fraction of that for kid's stuff......he was teeny and LOVED to wath the "toons every day for as long as he could, plus anything else we would let him watch He is a straight A honors student who excells at everything he tries (except sports ) and has none of the neurological issues that his younger bro does.......... now, the younger one hardly ever watched TV (we were already living in the states the year after he was born so had the 24/7 availability).....anyway, he was far more interested in playing outdoors or with "building block" type toys.....not much TV till he was much older..... but, he does have ADD and other learning disablities, plus all the other stuff!!!

efgh the B1 I get is made by MAJOR and I have to ask for it at the pharmacy counter. All my other Bs are by Rexall, except the B5 which is from TwinLab The interesting thing is that the Bcomplex affects some people in a variety of ways.....in my case......I get very "spacey" and digestive problems(it seems to halt me!!) whereas my son gets restless, anxious and ticcy as well as the digestive problems.......also my husband feels "unwell" on it.......we have tried enough different brands for me to know it is not the brand doing this!! As to the biofeedback......our therapist has travelled abroad to Germany and has the latest machines and training available for this.......he has never used a pendulum tho. It involves placing the electrodes and taking readings from the areas of concern and then he reverses the energy field and leaves the electrodes in place for whatever length of time he deems necessary. I believe it is also known as resonance therapy. He also works in conjunction with a radiogenics expert who does dermal readings. It was truly uncanny how the radiogenics readings matched the bloodwork and hair analysis results that we had done to verify everything! A 90 minute session of acupuncture, biofeedback plus reflexology costs us $85.

Hi efgh I have no idea why B Complex seems to negatively impact some people but I have enough anecdotal evidence to support my view that this is a faily common occurrance!! Yet, these same people can take a multivit with all those Bs in it, or take the individual Bs separately, and not have any problems! Yes, I buy the individual B supplements over the counter......some are out on the shelf, and some (like B1) are ones you need to request at the counter We started my son on the extra Vitamin B1(thiamin) when he went on that mission trip to Nicaragua....apparantly VitB1 stops mosquitoes from biting......anyway, he noted a dramatic decrease in his tics while on the B1 and I have subsequently found information from folks at brainTalk that agree on B1 reducing tics.

Hi Gina yes, vit Bs are excellent for tics my son specifically needed extra Vit B6,B1 and also B5 tho they are all important! Some people dont handle taking a B complex supplement well.....like our family....and so it is ok to take a high B multivitamin and then add extra of the Bs specifically needed. Generally, B6(with zinc) and B1 have good reports on helping with tics ......especially in those with pyroluria.........and B5 is excellent for tooth/jaw tics I lost a lot of email stuff when my computer crashed, but thankfully had some backed up so I will try to find that email re the docs did you check on those lists that Sheila provided http://www.latitudes.org/forums/index.php?...p?showtopic=517 so glad things are going better for your son

Hi searching it sounds like valid info ...... could you post some links to the subject and also the supplements recommended Hope things are stabilising for you re the OCD

Claire, I seem to recall reading somewhere that eye blinking or rolling was probably the most common of all tics! it was the first tic my son had, years before we even realised that he had TS. as he wears glasses, the eye doc said it was vision related! jcandkc....so glad things are still going well

Hi Gina We have hereditary TS .........my son, my husband and his dad (our oldest son has shown no signs of it, and is almost 18) we do also have some allergies.....mostly environmental and some foods....these run on both sides of the family and manifest in the non-ts members too. HTH How are things going with your son? Did you get my email re the doctors??

Beata my son was on Haldol. Luvox and Zyprexa as well as others....every one they tried him on just made things worse and brought a whole bundle of side effects that were horrible. We didnt want to medicate, but then were told by a doctor that we were "denying him a full quality of life" so, feeling guilty, we made the very bad decision to comply and ended up putting our son into the worst "quality of life" imaginable for a year........!! He became a fat zombie, and lost his wonderful sense of humor and personality, and also became psychotic. When he showed symptoms of tardive dyskinesia, and also some seriously dangerous cardiovascular reactions to the switch to zyprexa....we realised this madness had to end...and that we would rather live with all the tics etc than with the meds. our son begged us to let him stop them We consulted with a local pediatrician who practises Integrative medicine(conventionally trained--holistic treatment) and were advised by her and a wonderful psychiatrist who also approved the alternative route...we slowly withdrew the meds so as to minimise the horrible withdrawal symptoms, and had specialised biofeedback/accupuncture to help, and then began the natural treatment with the supps.....also, once his system was strengthened, then had the tests run to detect and treat candida, heavy metal detox etc etc the improvement has been remarkable and he finally does have real "quality of life" again I run everything re the supps by our physician first, and follow the guidelines suggested by her, and by Bonnie's research in terms of doseage. http://www.geocities.com/Area51/5207/ts_ma...bonnie_sup.html HTH

Hi again Beata and you are very welcome! There are a lot of different kinds of alternative physicians...some here have used DAN docs, some environmentsl, some naturopathic, some homeopathic...... IMHO, the best to go for is what is known as a doctor of INTEGRATIVE MEDICINE...ie one who has been trained conventionally, but has then gone further to become qualified in alternative medicine too. There seems to be a really safe balance in these physicians and they are usually very careful and methodical, yet so very open minded too! here is a recent thread on this too http://www.latitudes.org/forums/index.php?...p?showtopic=514

Hello I usually post at the TS board, but came accross this info and thought it may be of interest here http://news.bbc.co.uk/2/hi/health/3585315.stm

Apparantly Good Morning America featured a man with TS this morning who is the first ever TS patient to have brain surgery to have specialized electrodes implanted. The procedure is reported to have had remarkable results...surprising even the surgeons. Wish i had actually seen it, but here is the link to the story http://abcnews.go.com/sections/GMA/DrJohns...e_040401-1.html However....I think we will stick to our treatment protocol....that surgical procedure seems very....err....drastic