Chemar

hudsonsmom i am sure you will know I am not surprised that a conventional doctor would take this attitude have you looked on the pinned thread at the top here re Finding Medical help http://www.latitudes.org/forums/index.php?showtopic=565 when it comes to people with TS and having these tests, the DAN doctors do seems to have the most experience and knowledge as well as other Integrative Physicians who have experience in treating TS I would also not recommend homeopathy for what you require whoever you find...do be sure to ask BEFORE you go as to whether they have experience treating people with tourettes

hi Patty I answered in more detail on your amalgam thread but yes, the lymphatic system traps toxins and infective agents etc and so when the lymph nodes are drained, a detox reaction can result

Deanna without knowing the ingredients and amounts of everything in the multi, I would say start out with one each morning with breakfast and then after a few weeks move to 1 and a half.........but just ensure that he is getting enough to cover the RDA for all essential vits and minerals

Patty Carolyn has given you very good advice there re the amalgam filling and detox....she knows this from experience! Lymph nodes do swell as a result of infection,or toxins or something else that the body is fighting, as Giselle pointed out and so it stands to reason that if the lymph nodes are being drained, that the release of the "gunk" trapped in them could cause an upheaval in the system.........thereby REQUIRING detox so it kinda a circle there....you need to avoid detox stuff, especially of metals, because of the amalgam filling....but there are toxins in his system and so he NEEDS to detox I would agree that you need to have the hair test done asap to determine what metals etc may be there (do remember that hair tests are done best on "older" hair and so do NOT let your child have a haircut a good 3 weeks prior to the test Also, getting that amalgam removed is something you may want to strongly consider as a priority Chlorella is an excellent supplement for mopping up mercury in the system and, because it doesnt cross the blodd brain barrier like ALA does, is also safe to use . It needs to be very gradually introduced tho, starting at tiny doses and then moving up, as many people can feel nauseaous when forst taking it so good that you are encouraging him to have lots of pure water to flush his system!

sorry for only replying now deanna....i have been mega busy shipping out christmas orders for my business yes, at age 8 I would be giving him maybe just 1 or 1 1/2 of the teen dose and yes, the mag oxide is pretty useless as it isnt well absorbed altering the other supp doses would depend on what he is getting in of them from the multi and what form they are in just an aside...he isnt getting 500mg B6 is he? as that would be too high

hi sorry no one has replied yet...busy time! if she is doing well on that magnesium (which is compounded) then maybe just add a calcium that will give 2x the amount of mag no need to change the mag as long as it is working! sorry...i am real rushed so cant post more now

Dedee are you anywhere near North Central Florida? there is an excellent PANDAS RESEARCH TEAM at Shands Clinic at the University of Florida in Gainesville, under Dr Tanya Murphy,and they also see patients

Hi Patty my son had similar behaviours before I knew he had TS, and I used to keep telling him to stop. I felt just awful once the doc explained to me that these were indeed related to his TS and OCD perhaps your son is experiencing similar

Hi Molly and welcome I agree that you have started at such a good place by reading Sheila's book For our family, nutrition has been key in keeping my son's TS tics manageable! here is my thread on what has helped him (his story is also in Sheila's book) http://www.latitudes.org/forums/index.php?showtopic=687 I dont have much time to post now, but hope you will keep reading here and asking questions....we have a wonderfully supportive group of members who have a wealth of exeperience and knowledge to share Cheri

bumping up for Molly and other newcomers

hi Myriad MrsD only pops in here occasionally, but checks daily at The Vitamin etc forum on NeuroTalk so maybe post your question there for her too http://neurotalk.psychcentral.com/forumdisplay.php?f=49

Hi blueberry muffin and welcome tic disorders can be caused by a wide range of issues, some dietary, some environmental, some genetic in addition, some medications themselves can trigger tics, so it is important to note whether your tics have been there since before or after the OCD medication From the way you decribe your tics, and their late onset in terms of your age, I would think that Tourette is unlikely, especially as you dont appear to have any vocal tics What tic medication has the doctor prescribed. Again I would urge that you first read up about it and its possible side effects Here at Latitudes/ACN, the philosophy is to try a more natural approach to helping to control tics rather than prescription medications This is not an anti medication philosophy....just a realistic approach to the potential for side effects and a favoring of trying other methods first, as so many have found that they work. Our administrator, Sheila Rogers, has written a superb book on the breakthroughs in natural treatments for tics and tourettes, which is an excellent resource to have http://www.latitudes.org/book.html Also, here on the forum, as well as on the main website at http://www.latitudes.org you will find so much great info on what various people have found to be the cause and then the correct treatment for their tic conditions One unifying theme seems to be having a healthy diet, free of all artificial foods, like coloring, artificial sweeteners, MSG etc and correcting any vitamin, mineral, amino acid or neurotransmittor deficiencies that may exist Many find they have food allergies, and once these are addressed, tics reduce too Yeast infection of the gastrointestinal tract (Candida) is another biggie for making tics worse....treating this can often result in a dramatic improvement Other microbial infections (viral, bacterial and fungal, plus parasites) can also be big tic triggers speaking of triggers here is a great article by Sheila on that subject which may help you odentify things that make your tics worse http://www.latitudes.org/articles/finding_triggers.htm It is fairly common for tics to stop when people sleep and start again when they wake Anyway, I hope I have given you a few insights to start your research into the best treatments for you Please do let us know which med you were on for the OCD and whether the tics started before or after you began taking it and also which tic med the doc wants you to take we have many members here with a vast range of experience and knowledge so do keep asking questions as you go along all the best and sure hope you will find solutions here Cheri

Hi Deanna if you do decide to break them up maybe the inositol and B6 in the morning with the multivitamin (which I trust you are giving too) and then the cal mag taurine and zinc in evening as these work synergistically

(((((Giselle))))))) & (((((((Hoyt)))))) this is truly wonderful news and I am sooooo glad that the teacher allowed recognition true talent to overide any prejudice and reservations that she had! and that this may well be a first step in something very very special for Hoyt! blessings and love to you both Cheri

Hi Dedee and welcome glad you found us I have limited knowledge on PANDAS as my son was -ve for it...........but I do know a bit about the tests required Be sure to include a throat culture of group A B-hemolytic strep. Ask that the specimen be cultured, not just the rapid test. MOST IMPORTANTLY do a blood test to assess elevated streptococcal antibodies (Anti-DNAse B and Antistreptolysin titers --- ASO ). hopefully some of the more knowledgable folks re PANDAS will be along soon

((((Patty)))) i sure do feel for you cos I have been there too...as I think most of us have honestly, for me and for my son, the truly liberating aspect in all this was when we decided some years back, that, whereas there were most certainly important things for us to do because it definitely helped to make his tics and OCD less intense, yet....we also accepted the fact that he has genetically inherited Tourette Syndrome and that people with TS tic. Period. It doesnt mean we gave up on everything to help reduce the intensity and frequency of his tics...quite the opposite......he became an active partner in making the right choices re diet etc ............but we stopped being fanatical about it, and I stopped focussing so intensely on his every move and sound, which in itself helped him tremendously! It released him to simply be his wonderful lovable self, tics and all, and it helped me to prioritise on what was important and what was not. We both destressed enormously from that point on and doing the good stuff that helps became easier too because it was no longer a burden but a boon. Like my friend Lara says..........people with TS tic, and it's ok! Thanks for posting that poem CP.........I know it will bless all who read it:) ps here again is the link to Lara's thread "It's OK to Tic" ....when she originally posted it on another forum about 5 years ago, it really helped me get things in focus!! http://neurotalk.psychcentral.com/showthread.php?t=1486

Hoping everyone has a peaceful and Happy Thanksgiving

ortho it is a general statement, not directed at anyone people with TS usually do not have low dopamine levels and supplementing with tyrosine is a known problem for people with TS the results that samsmom posted seem to suggest that he is low in VMA and therefore, as you have pointed out, possibly low in dopamine. this would be very surprising for somone with TS and so we (ALL) need to be very careful in making recommendations on this situation as this is clearly an unusual case, and needs careful qualified analysis. Giving tyrosine or any other dopamine stimulant to someone with TS can be very serious no-one is criticising your statement, just helping samsmom to see that we ALL, (not just you) however well meaning we are, are not qualified to comment specifically on what is going on with her child because his very test results are providing information that is contrary to the norm for TS. where we do all willingly share our personal knowledge and experience, we all still need to remember that the unique biochemistry of an individual sometimes means that they may not fit the mold for what we know from our own research and experience

samsmom you may also want to consider printing out the article on TS chemistry and showing it to the enviro doc who did the testing.........even tho he doesnt necessarily know much about TS, reading that article may provide some insight into the test results for him....and yes, a good idea to let the pediatrician read the article and look at the results too as to the neuro..........hmmmmmmmmmm so many of them are so anti alternatives and yet they are so quick to scribble a prescription for something that can have severely adverse effects on our kids....but they seem to go with the Big Pharma flow regardless of the growing evidence of the harm these meds are doing to kids Do be encouraged tho that this IS a piece of the puzzle and just because it seems confusing now, doesnt mean it isnt going to be a big step in your child's path to healing.....hopefully the combination of your pediatrician and enviro doc will provide some clearer answers.......dont give up! you are doing the right thing by asking questions and doing your research so thoroughly, nomatter how frustrating it can be at times...for most of us, it has been our research taken to the right physician that has been the biggest help !

bumping up again as I really do want all members to be aware of this

samsmom I dont blame you for being confused as you are correct that dopamine levels are usually not deficient in people with TS here is an article on the Chemistry of Tourette Syndrome http://au.geocities.com/jones_kacm/chem.htm this will explain about the problems with dopamine in people with TS and why IT SHOULD NOT under normal circumstances be further elevated by supplements, as this could result in tic elevation The fact that your son has tested low VMA is a very surprising result for someone with TS,and I would highly recommend that, before you begin supplementing with tyrosine or in any way doing anything that would boost dopamine levels in someone with Tourette Syndrome, you really should speak in detail with a qualified medical doctor who has experience with TS, whether the doctor who ordered these tests and treatment or a second opinion, or even having the tests re done to be sure of the accuracy of the results As well meaning as people giving information here may be, it can be problematic when contradictory information is presented based on personal experience that may not be specifically associated with another persons unique situation. you really do need these results to be explained to you by someone who is fully qualified to analyse them and who is also knowledgable about Tourette Syndrome

re the skin problems you had http://neurotalk.psychcentral.com/showthread.php?t=6701

Hi everyone I understand that this topic is allowing people to talk about issues that are bothering them and that is fine, but I do just want to request that everyone abide by the forum guidelines and please do not use graphic language or descriptions that are outside of the acceptable norms for such a sensitive topic I have had to edit a few posts recently to conform to the guidelines I would also once again like to refer you to the Forums at PsychCentral where there is a very active group of members and a resident psychologist who can answer questions. They have free online chat sessions with the psychologists too http://forums.psychcentral.com/ I just feel that for many of you, PC will have a lot more answers and experience to help you with these issues Chemar Forum Moderator

Hi CP we give the cal/mag/zinc etc at night as magnesium supports rest I now have all supps separate, not in combos to get the most absorbable forms as sadly, the combos tend to have magnesium oxide which is pretty useless, and I also dont like all the fillers they use. Also, because of my son's added complications re Crohn's Disease, primarily liquid supplements now wherever possible I purchase most of our products at iherb.com as they have a very wide selection of top quality brands at the lowest prices and also fast, low cost Priority Mail shipping and discounts for frequent buyers etc I also use The Vitamin Shoppe for some things (we have a store near us and they are also online) and some of the specialized products we use come from Metagenics and also Mountain Rose Herbs (both are online)

Ok let me see if I can answer these we have found that, although both my husband and son have TS/OCD/ADD etc...yet they clearly have very different biochemistry my husband can take fishoil and derives tremendous benefit from it my son cant go near it (tho he can eat as much fish as he likes) because it drastically increases his tics. For this reason he derives his Omega3 fatty acids from flaxseed oil my son with TS and my husband are very similar in many ways, whereas my older son seems to be more like me(he is 20 and has never exhibited any TS symptoms) My husband is left handed while both sons and me are right handed The one area that both sons take after dad rather than mom is sleep patterns...........all three of them are night owls whereas I am an early bird Although we had numerous food sensitivity tests done, none in our family have food allergies. The only clear sensitivities are to artificial and refined foods hormonal changes (including growth hormone) are known to intensify TS and the pre and pubertal years are usually the worst Royal jelly is unique and is not the same as honey. We first started using Royal jelly for my son when he had a severe tooth grinding (bruxism) tic as it is very rich in Vit B5=pantothenic acid which is known to help with bruxism. Also, my son doesnt tolerate B complex supplements well, but does tolerate royal jelly which is one of the richest sources of B vitamins Where honey is very healthy (as long is one is not allergic to bee products) yet Royal Jelly is loaded with nutrients ....here is a bit on it from a health encyclopedia "Royal jelly consists of an emulsion of proteins, sugars, lipids and some other substances in a water base. Proteins make up about 13% of royal jelly. Most of the proteins comprise a family called major royal jelly proteins. One protein in royal jelly called royalsin possesses antibiotic properties against gram-positive, but not gram-negative, bacteria. About 11% of royal jelly is made up of sugars, such as fructose and glucose, similar to those found in honey. Lipids comprise about 5% of the substance and consist mainly of medium-chain hydroxy fatty acids, such as trans-10-hydroxy-2-decenoic acid, which is also thought to possess antimicrobial properties. Royal jelly also contains vitamins, such as pantothenic acid, minerals and phytosterols. Neopterin, or 2-amino-6- (1,2,3-trihydroxypropyl)-4 (3H)-pteridinone, was initially isolated from royal jelly. Neopterin is also found in humans, and, although its precise role is not known, it appears to play an important role in the human immune system." As mentioned above, Royal Jelly is a great source of B vitamins Vitamin E is good, but certainly no subsitute for the Omega 3 rich flaxseed oil Magnesium is, without a doubt, the most important supplement for people with TS Bonnie Grimaldi has done extensive research on this (she produces BonTech supplements specifically designed for TS, and has info about her research on her website http://www.bonniegr.com ) Our integrative physician advised us to give calcium and magnesium in a 2:1 ratio of 1000mg calcium:500mg magnesium with 50mg zinc and 500mg taurine. Younger and lighter children would need less I believe My son gets 100mg Vitamin B6 per day with his Inositol and 5HTP, primarily to help with his OCD hope that helps CP