Chemar

Hi FireFly....I am not a moderator...... but been here a while and so I feel I can say with confidence that you havent violated any rules here. The only time a link wouldnt be approved of is if you were trying to sell something...ie profit by it, or if it led to an inappropriate site. I have been reading your posts re the carnosine with interest as it is something I have heard before....thanks for updating us all here on your progress.

Hi Gina sorry to hear of the waxing Although the head bending sure does sound like a tic, the smelling one seems more like OCD.....my son went thru that once and the psychiatrist definitely felt it was OCD. Is your son taking any supplement for OCD? Usually serotonin needs to be elevated some to control OCD symptoms and there are a number of supplements that can help with this. For the head tic, my son always benefited from the Epsom Salts baths and accupuncture when he had those whiplash type tics. Also, regular visits to a NUCCA chiropractor are an essential part of therapy when these kinds of tics are around. I notice that you arent doing any supplementing with Omega fatty acids which may be needed. And there is always a chance that L-carnitine may help too .... just some ideas for you to think on, and I do hope things start waning again soon.

I taped the show but havent had a chance to watch it yet. Hoping it will have maximum impact! and increase public awareness

Hi Marie so sorry about your older son's accident and just thankful it wasnt worse. Hope he makes a rapid recovery Your post about the lose tooth was like a neon light for me....when I first started posting here, that was one of the tic triggers I mentioned frequently.....EVERY time my son has had a tooth issue, his tics intensified, and he even sees a special dentist who is used to treating TS patients so that any dental checkups etc would have minimal impact on him. Thankfully he has reached the age where teeth have less impact and , thanks to the pantothenic acid and royal jelly, he has no more problems with the tooth grinding(bruxism) anymore Glad your little guy is in waning mode again

GREAT to see a post from you Claire Kim, i echo that appreciation for the excellent job you are doing with this very informative thread.... sure wish this depth of knowledge had been available when we started floundering around 5 years ago....but am just so thankful that there is finally a very valuable opening up of real and natural understanding of all these underlying mechanisms and natural ways to try to remedy things

Hi Diana and welcome the form of L-Carnitine that we used was acetyl L-carnatine and my son's recommended dose was 500mg per day. He was almost twelve at the time and around 130 lbs. The carnitine was very helpful for him initially, and many perople have found it especially beneficial for eye/head tics. However, after a while it started to have an adverse reaction by making him feel edgy and disorientated. Our physician felt this was most likely due to the fact that my son's entire system had stabilised so after 2 years of comprehensive and very specific supplementation and other treatments, that he no longer needed the extra L- carnitine Here is some info on it from the excellent iherb.com ( they dont mention its beneficial use for tics as I dont believe there is any actual scientific research on this...only anecdotal evidence that it helps) http://healthlibrary.epnet.com/GetContent....&chunkiid=21450 Once again, as I always try to point out, with supplements as with any medication, it really is a good idea to work with a knowledgable physician...especially as there is now such clear evidence (anecdotal and scientific) that even tho a supplement may be very beneficial in many cases, yet, depending on the unique metabolism and physiological/biochemical makeup of the individual, some people react well and some adversely to the same supplement. There is much talk on this forum as to the underlying issues that cause this individual variation. If you are going to try any supplement, including the L-carnitine, without doctor supervision, my personal opinion is to always start at a lower dose and work up to the recommended dose or stay at the lowest effective dose....allow 2 weeks to determine whether there is benefit and stop IMMEDIATELY if any notable or unpleasant side effects occur. HTH

Hi Marie...... so sorry that you have had this set back and sure hope things turn around real quickly again and that there is a rapid improvement. as to the acidophilus, I wouldnt overdose....just introduce it back at the regular dose and try to increase his good foods and decrease the yeast boosters like the sugars and starches. I really feel that the supplement Caprylate (caprylic acid) is so very beneficial in helping with yeast reduction, and its high magnesium content helps with tics too. here is that special (((hug))) for you

what a very encouraging post from you Carolyn I am so pleased for you

hi Daniel sorry if I am asking a question to something you have already stated. but WHY do you have your son on the enzymes? has his tests shown that he is deficient in these enzymes and not metabolising correctly? If his system doesnt need the extra enzymes then his metabolism could be being messed up by giving them to him. Enzymes are very beneficial, but ONLY when we need them.....if our own natural enzymes are functioning correctly, thenwe shouldnt supplement with extra ones, as then we are sure to start getting unwanted side effects and negative reactions. same with all supplements........

Hi Susan some people use Bonnie's supps and see immediate improvement. Others get worse before they get better, and for some, they just cant seem to tolerate them! The general feeling from those who dont tolerate them is that something in the ingredients...either the inert or active ones, is "setting them off" I firmly believe that with supplements , just as with medications, there isnt always a "one pill fits all" as there are so many variables to consider...the persons potential allergies, their unique metabolism and, most importantly, their INDIVIDUAL supplement needs....some people just dont need all that is in a single supp like the TS-Plus. That is one of the reasons why we had testing done and supplemented only with what the physicians felt my son actually needed. Bonnie's program is really excellent, and her research helped us to formulate our son's plan at a time when she hadnt yet produced her own range,..... but, based on his test results, he would not have been able to handle the high Bs in her supps, especially the folic acid and niacin, and certainly not the fish oil one either. It is generally felt that the "trial" period for a supp is TWO weeks. if your child still isnt responding well to it after that, then it may be best to consider adding individual supplements under physician guidance.

Kim at the baseball field, in addition to the "junkfood' there may also have been pesticide/fertilizer exposure and at the mall, in addition to whatever he could sense as a smell (again may have been a pesticide, or other chemical eg cleaner, disinfectants or even just lots of perfumes etc) the fluorescent lighting may also have had an effect.........my son says for him at the mall it is the lights and the smell of perfume...on the people and in the stores

Hi Gina there are a number of websites and books on the subject of CBT, but here is a n overview, with links for more detail http://www.nacbt.org/whatiscbt.htm It is very important to find a therapist that is fully qualified to do CBT, and who also has a compassionate and non-domineering personality...and one that recognises the neurological ie. the involuntary component in the disorder, whether for ODD or OCD or ADHD or TS etc

Hi Gina yes, ODD is at last being recognised as a disorder, rather than just a "bad" behaviour. Cognitive Behavioural Therapy was very helpful for a friend of mine's son....certainly, from what I have heard, the meds have a real "zombie" effect , so hopefully your friend will find other alternatives....in addition to the CBT, my friend uses homeopathy for her son and is very pleased. They have also found benefit from accupuncture, and, like we have all learned, avoiding allergens and artificial "junk" in food is very helpful and they additionally have worked to eliminate yeast and heavy metals, all beneficial to stabilising the immune system and so helping the overall physiology.

Hi Daniel it is good to see you back on the board. I think Giselle has a very important point there that so many folks have found with Bonnie's program...where her products are excellent, they just dont suit everyone because of the highly INDIVIDUAL supplement needs of different people and their unique metabolism. One more reason why it is so beneficial to be supplementing under the guidance of a physician. and yes, malabsorption and/or dehydration can cause urine discoloration.....

Hi again Leslie Bonnie Grimaldi's website ( http://www.bonniegr.com ) will give you very helpful input on the use of supplements to help with TS tics, and speciifically her ongoing research into the importance of magnesium is very valuable. when I needed to help my son, Bonnie's BonTech range of vitamins for TS were not yet available, although her research and the combinations that she had used for her son were on her old website, and so I designed (with the help of our Integrative team of physicians) a plan based on hers, but with specific additions too to meet my sons needs as his OCD was worse than his tics here is a thread in which I describe our protocol http://www.latitudes.org/forums/index.php?showtopic=687 Claire has put together some excellent composite threads dealing with a lot of other alternative topics so I would echo Kim's suggestion that you do some back searching here for them...they shouldnt be too far down as I know Jean bumped them all up for someone recently

Hi Leslie the upheavals of change really do seem to be one of the biggest triggers for tics etc. Tho your son may not even realise it, this life changing event probably has impacted him pretty deeply. St John's Wort (aka hypericin) is a natural antidepressant and works to elevate serotonin levels in the brain. Passiflora has more of a relaxant and sedative effect and is used by many as a sleep aid. Where the product you have ordered has the potential to be a calming and emotionally soothing remedy, I am not sure that it would address increased tics per se...other than by reducing them indirectly as a result of the mood/emotion stabilitiy. There are a number of threads here that discuss the supplements best for tic reduction....especially MAGNESIUM( preferable with taurine, calcium and zinc) etc Do be very cautious tho that you dont mix other sedative or serotonin elevating substances with these as both SJW and passiflora, although natural, are nonetheless pretty potent! As always, I would really recommend working with a physician who is knowledgable in these things...an Integrative docotr or DAN doctor or someone who practices complementary medicine.

Gina I agree that it is usually 10 days to 2 weeks for the effect of the supps to be really noticeable both in starting and stopping. We would also allow my son to down size supps during summers and imagine our delight when he just didnt react badly last summer, since when he has been on just his daily multi plus a mag/cal/zinc/taurine and EFA with inositol every other day. And many days he just takes his multi if he so chooses. He really has learned so well what his body needs, and, at 15, he is now responsible enough to take charge of his own supplement regimin (with watchful eyes of mama observing )

Hi Lulu we used the "straight" taurine (500mg per day) with 1000mg calcium/500mg magnesiun and 50mg zinc He was almost 12 when we started this and over 120lbs we found that evening was good for this group of supps

Hi Susanmom just wanted to say "hello" and congrats on all you are doing to educate yourself to be able to help your child. Hoping your DAN doctor is able to help you work thru the many areas that need checking and that the treatments he recommends will have very beneficial results. all the best Cheri

Hi Kim just wanted to stop in and give you a (((((BIG HuG))))))) Hoping that your son gets over this real quickly, and that hubby is recovering well from the surgery..........you sure deserve a medal for delaing with all you do. God Bless Cheri

Hi Evie here is one of Ronna's threads on PANDAS.... http://www.latitudes.org/forums/index.php?showtopic=374 hope it helps Dont worry.......now that you know what is the root of the tics....you can start the correct treatment.

Hi sorry to hear of the flare up. I dont know anything about the technique you mention...hopefully someone else does, however I would be VERY cautious about something that tries to control tics via "emotional" or "habit reversal" etc techniques.......tourette tics are PHYSIOLOGICAL not psychological. There is a lot of very valuable info here at ACN to help you find other natural ways to help to reduce TS tics. You are very right to want to stay away from HALDOL.....it is a drug with the potential for very dangerous side effects!! I speak from personal experience because of what it did to my son. If medicine has to be the route, there are milder yet still effective drugs available with less horrible and irreversible side effects than Haldol!!!! Hopefully, you will find other solutions than any meds tho, as all the meds do carry side effect risk, especially in children. Whatever you choose tho, do so under qualified physician guidance. I cant post too long now, but do spend some time reading around the forum here and also on the main page for Tourette Syndrome ........ so much you can do without resorting to meds! Also, do consider taking your child to a NUCCA chiropracter to help with the headaches caused by the tics...... (more info at www.nucca.org ) I will check in again when our severe weather is over bye now

Hi Nick Glad the tics are down but sorry to hear you are having a digestive reaction. A few things I would check, 1. What is the ratio of calcium to magnesium you are taking? It shouyld be 2 calcium to 1 magnesium. I personally wouldnt go higher than 1000mgCal:500mg mag with no more than 50mg zinc 2. Flaxseed oil can be digestive for some....it is good that you are taking evening primrose to balance the omega 3 from the flax with omega 6. Personally I would also add some borage oil and also dont take too high a dose of flaxseed to start. you can always work up. I never go above 1000mg flaxseed + 950mg evening primrose and 50mg borage 3. check the "inert" ingredients in the supplements to be sure there isnt something in there that you could be reacting too.....I have heard people complain that sucralose gives them irritable bowel type symptoms so make sure there isnt any added.... frequently the type of symptoims you are describing occur when one is allergic to a foodstuff, so I just strongly suspect that somthing they are putting into the supps is disagreeing with you 4.Also, be sure to always take your supps with a meal.....and with lots of liquid. hope that helps if the pain etc continues, you may well want to talk with your doctor to see if maybe something else is irritating your system ........I know I get so repetitive on this, but I truly believe that a qualified physician is so important in guiding one with supplements too.

Hi Daniel so glad that you are realising how important it is to have a qualified physician guiding you thru all this! here is a link to the Chlorella offered at iHerb.... we used the Source Naturals brand as that was recommended by our physician http://www.iherb.com/chlorella2.html iHerb is an excellent resource not just for finding supplements to purchase but also to look up info on supps and many other things thru their health encyclopedia http://www.iherb.com

Hi Matthew yes, many poeple have found much benefit in using the BonTech supps that Bonnie markets. two issues to be aware of : 1) some people dont react well to them (either due to individual metabolism and/or deficiencies etc and 2) as an adult, you will need to take a large number of the capsules to be at the correct dose level. there are many here who have far better and up to date info on allergy testing than I do, so I am hoping they will give their input on the best way to go about it. Our Integrative doctor ran various tests for my son, but I know that there is recent advancement in this area.