Chemar

we did find that my son's anxiety was primarily OCD related there's a link in the "essential threads" sticky to good OCD info my son had most benefit from 5HTP when it was severe tho some people respond better to tryptophan for maintenance he used inositol & methionine (samE is best but pricey) Cognitive Behavioral Therapy is IMHO a really valuable treatment for all things related to not only OCD but also anxiety, depression. It helps with understanding and with coping skills and really is IMHO important in addition to the supps that help with the chemical imbalances

another fly by post of info that I hope may help your research Kim my son was in hospital back in 2001 because of a severe lower lip/chin injury/infection from a tic/OCD episode (now believed to have been induced by the haldol that he had only been on a few weeks) anyway, he has a pretty thick scar from it still tho a herbal lotion recommended by our acupuncture physician really helped reduce the redness and prominence. I will dig out the info and post ingredients when I get a chance

Hi Kim yes I had noticed the deficiency/genetic and GlcNAc parts with much interest, again things I am hoping my son will start reading up on. I am so delighted to see him now researching stuff for himself. How far we have come from the struggles to get the supps in and the slurpees & Doritos out He basically structured this diet/supp/stress-coping plan himself and we havent seen a Crohn's flare in a long time and we know there has been ulceration and fistula healing, as well as that his inflammation markers are down (his current Crohn's treatment has DGL-liquorice root, slippery elm, boswellin/curcumin, white willow bark, garlic, ginger, turmeric supps+extra in diet and his multi in the form of a protein/multi vit /mineral formula shake. For his tics he has only the epsom tubs, and of course the benefit from the shake multi, plus flaxseed oil and flaxseeds in cooking, cereals, salads etc and fresh alaska wild salmon for more omega3 - he tics more with fishoil supplements so cant take it in that way. He is currently off all the natural antibiotic supp mix and maintaining well. My dh has always had some skeletal issues related to an old injury, but seems to have ruptured the discs with herniation now from the jolt after somone smacked into our car with hubby at the wheel. it seems the herniation and hip rotation has now impacted his sciatic nerve and hence agonizing pain when he tries to stand/sit/move etc ): so it is hard for him to get around at all. Having tried the med route, and not being well or eager for surgery to repair the discs, he is trying the TENS and lidoderm patches with some relief. The medrol relieved the nerve inflammation some but oh my goodness i cant begin to tell you the horrors of someone with TS on a corticosteroid It has been weeks since he had the medrol burst pac but he still cant sleep and has been in tic and TS-spectrum waxing mode, tho thankfully these last few days things are looking better, I think in part to the TENS unit and hopefully the glucosamine-msm too

Hi Kim it is kinda hard to say as he has been on the glucosamine-msm daily for about 3 months now (I take it too for arthritis) the problem re trying to determine anything re its effect on his TS is that the doc's (against my advice and pleading and even angering the docs) had him on a clonidine they said it would help maintain his high blood pressure while reducing the pain plus the waxing of tics that the injury has triggered ...instead it induced psychosis ) and then he was put on a 6 day medrol steroid burst that caused a massive tic explosion (gee why am I not surprised ) and horrid hyper stuff. Hubby has been in such agonizing pain that he was willing to risk side effects for pain relief and sadly got the former in massive quantities with not much of the latter. Needless to say I am in major anti-meds/docs mode but at least hubby seems to now get it that just because docs and pharmas say that side effects are rare doesnt make it so!!! amazing isnt it as he has seen first hand what our son went thru, yet I guess he had to learn for himself. I am sooooooooooo thankful that my son and I held firm on the no steroids with TS back when the GI docs were telling us that only prednizone etc would help his Crohn's!! heh!! he sure proved them wrong and is doing way better than we could have hoped, considering how severe the crohn's was dx at colonoscopy in 2006.............. anyway, rant on meds/docs over because of all that other stuff my hubby's tics etc have been elevated and so it will probably be a while for him to stabilize, so I really cant comment yet re the glucosamine-msm effect on TS He is supposed to go for more testing on the glaucoma, but has been so ill from the meds and so much pain from the spinal injury coupled with the fact that the first two sessions of glaucoma testing left him feeling very weird for days after... I did look at the research article, and tho I honestly dont know if my hubby or son have bony tumors, I can see where there may be merit in the research. just as an aside, hubby now has a TENS Unit to alleviate the pain intensity and it seems to have calmed the flare up of his tics/OCD some............maybe its the endorphins?

wow Kim, what a wealth of info! thanks I am just stopping by quickly as exhausted so wont post long. Thankful to see that glucosamine may be helpful as hubby is already on glucosamine-msm for the spinal herniation from his injury. I am going to let my son read the Crohn's connection as he is mega cautious lately on me adding any supps to his plan. LOL my young adult is in charge of his own healthcare now he is really in such a good place at present with his health in general, which we emphatically know is from his careful diet/supplement/low stress program. But to me the more anti-inflammatory/mucosal healing that can be found the better with any ulcerative GIT stuff, so hopefully he will consider adding it once he reads the info. thanks again (((Kim)))

Hi CP the initial reply I made was to ilovedogs on the supplement they were asking on, and was in no way related to your child. sorry for any confusion. I was commenting because we were told people with Tourette Syndrome are generally cautioned to only take amino acids under guidance of a qualified health care professional because of their impact on the brain. What your doctor tells you *specifically* for your child's specific deficiencies was sure not what I was replying on..I confess I cant remember what dx everyone's kids have so I tend to generalize my comments. I also wasnt trying to comment on IntraKid, as I dont know what its ingredients are. Only on the PanaC315 linked in ilovedogs first post . I looked at the ingredients and saw a full spectrum of aminos as well as other things beyond the vitamins and minerals ...and so only posted to mention that ilovedogs should maybe find out about those extra things first before giving them to someone with TS because of the known dopaminergic action of some amino acids and the unknown possible effect of those other ingredient. I mentioned that supplementing with some , not all, of the amino acids may increase TS tics because when Bonnie used to post on the forums she had a good list of the ones to avoid and I am just not able to remember all of them. I thought Bonnie had a list of them on that page and honestly havent checked it for a while. I have it bookmarked...... but rather than mis name the ones I think were listed as dopaminergic, without checking, I would rather defer to someone who knows more on the specifics. perhaps contact Bonnie herself. There may also be info on www.tourettesyndrome.net on the aminos and dopamine. sorry I dont remember all the exact info, but I am multitasking because of my husbands injury and so have been skimming in and out here.

hi Emma magnesium as a supplement and in food has many roles, only one of which being relaxation. depending on the forum of magnesium, and how it is taken, it has a number of effects on us when it is in the form of epsom salts for baths or in some creams it is magnesium sulfate, which has detox and relaxing effects plus more. that is related to both the magnesium and the sulfur as far as i know magnesium is also believed to be a core deficiency in TS here is Bonnie Grimaldi's research on it http://www.bonniegr.com/news.htm

sorbitol can be natural or synthetic. it is a crystalline alcohol naturally found in some fruit, but when added to stuff it is usually the synthetic form. it can cause gastro intestinal probs if too much is taken. it is rx as a laxative and used as a sugar substitute

we found that even subtle changes in the supplements that were working for my son could have dramatic changes in his tics/OCD I think our systems struggle to adapt when we keep changing things whether the actual supps or their doses Because bichemical pathways involve so many interrelationships, by altering what we take in, we alter those pathways, sometimes with dramatic effect one of the reasons it is so much better to have a qualified person advising on supplements, especially when a developing child is involved. just because something works for one person doesnt mean it is beneficial for all so we really do need to be careful JMHO

Bonnie Grimaldi and others have documented info that some amino acids stimulate dopamine therefore may increase tics for those with TS, and so should be avoided here is Bonnie's info on it http://www.bonniegr.com/ts-PLUS%20Diet.htm only SOME amino acids are beneficial to people with TS and others not one cant totally avoid them in "whole" foods, but supplementing with extra may be a problem

ilovedogs, i posted this reply on another thread by mistake while multitasking, but wanted to just say I looked at the ingredients and my concern would be that it has a full spectrum of amino acids, some of which are considered to agravate tics for people with TS. it also has some other ingredients that may or may not be tic stimulating...you may need to check on that first. I am just real careful in over supplementing with our kids as sometimes things that may be nutritive for others still can be potential triggers for them. anything beyond regular multivitamin/ mineral one should always check first I know some react to the very high Bs in some supps (I think someone mentioned recently that Bonnie's Bontech have pretty high Bs and that may be why some kids dont react well to them as others do....my son is one of those that needs careful B supplementationm as he reacts to some, tho he needs others more

ooops I posted here while skimming and was actually commenting on the other supplement asked about on another thread NOT nu-thera this supp is the one I felt has aminos and other ingredients that may be tic triggers http://www.amazon.com/Panacea-Liquid-Multi...d/dp/B000MRBCUS so sorry and I have edited my post above to only have my comments re Kirkman blush that's what I get for multitasking and skimming thru here

yep, I am kinda apalled by the bad additives in Kirkman products

Judy the unfortunate thing is that all of the medications carry the potential of severe side effects my son and husband tried a number of them and honestly the side effects were worse than the tics here is a good website on all things Tourette, tho they dont have much up to date information on alternative/natural/dietary/supplements etc. This is a link to the medications page http://www.tourettesyndrome.net/tourette_t...tm#Introduction

my son had an accomodation built into his 504 plan at school to be allowed to chew gum or suck (healthy) candy as it helped him too. Judy, I dont want to put a damper on things for you, but this is just one of a number of helpful coping mechanisms and not a "cure" for TOURETTE tics. It was actually something recommended by the CBT therapist when my son was having a lot of mouth/teeth blended tics/OCD. For my son, playing musical instruments and doing other artistic/creative things etc also seems to dampen tics. also, as an aside, chewing does also stimulate digestive enzymes so there may be added benefit from that

CP I have not heard of mineral analysis for inflammation? My son has blood tests that show his status re inflammatory markers for the Crohn's which include white blood cell and platelet counts and albumin, fibrinogen, C-reactive protein (CRP). They also check his ESR

Hi Tom's Mom try not to panic as there really could have been a number of tic triggers in the new enviroment and just the excitement of being away etc if he was doing ok initially on the bontech supps I would doubt that is the cause of the tic increase as usually it seems that those who react negatively to the supps do so pretty soon after starting them maybe just continue for at least another week and see if things level out. not sure how your son reacts to the epsom baths but that may be a good detox and tic calming solution for now hope things stabilize quickly

Here is a good pyroluria thread that I found in that search result for all posts in which Claire mentions screens/tics/photosensitivity http://www.latitudes.org/forums/index.php?...&hl=screens Caryn, my hubby has suspected glaucoma and the testing set his tics off and actually left him feeling quite weird for a few days.

here is what a search turns up for Claire's many posts on screens, flicker, photosensitivity, light etc there is a lot of stuff there, some of which may not be relevant, but some really has excellent info on this topic I believe Claire used IRLEN method to help???

we use capsules for the flaxseed oil supplement and fresh ground flaxseeds in salad dressings etc

Bonnie it may be related to OCD my son often would obsess over aches, pains and imagined illness etc

Hi Betty there is strong anecdotal evidence for photosensitive induced tics here my son avoids regular movie theatres as the flashing lights trigger his tics as do fluorescent lights and watching flashing/explosive TV/videogames in darkened rooms (we use daylight lamps and LCD screens to avoid this) Claire has documented photosensitive induced tics in many threads in the past, and has a lot of info on it in this one http://www.latitudes.org/forums/index.php?showtopic=852 the flashing cameras could well have triggered something!

Hi Janene we had hair analysis followed up with blood testsand radiogenics (transdermal) tests

((((((Jenny))))) I was devastated when my son was going thru the diagnostic process. At the time we truly did not recognize the tics as TS as such (my hubby and grandpa's dx fell into place when my son got his) and it was more the blending with OCD, depression etc that was so bewildering and overwhelming and exhausting for me as a mom honestly all that kept me from falling apart at that time was God. I did learn along the way tho that I simply HAD to take it a step and a day at a time for my own sanity as well as for the family, and especially for my son's sake. I quickly discovered that if I was "on edge" it made things way worse for him. I had to go thru that very hard phase of acceptance that something was seriously "wrong" with my child and then also accept that I couldnt be "in control" of it all...it wasnt easy but it sure helped me get the balance that was so needed to be able to help my child where I could, without it being obsessive for me to be able to "fix" it all. It's in my nature to do that, and so I really had to work hard on getting that balance. I deeply sympathize and hope you will soon have the right team of physicians, educators etc in place to guide you and that Isa will respond well and make much positive progress. Hoping too that you and she will be able to have special times together each day to just enjoy one another!

Here is the PubMed abstract: http://www.ncbi.nlm.nih.gov/pubmed/18283240