Hi I have been asked to post our treatment protocol a number of times here and by emails so I have finally put it together in what I hope is a simple summary for anyone who needs more info on it. Although I have a background in Medical Research, with a postgrad degree in Physiology I am not a physician...this is the program that worked for my son, and and I must stress that we were at all times guided by a team of knowledgeable doctors. I urge everyone to work with a qualified physician! PLEASE NOTE! this post was originally written in 2004, and so has been updated with current information in the later posts of this thread Hope this answers your question...feel free to contact me if you need more details -------------------------------------------------------------------------- FIRST: I need to clarify that my son has genetically inherited Tourette Syndrome, and that my husband and his father before also manifest TS etc My son uses mainly supplements (vitamins, minerals, herbs and certain amino acids) and healthy diet as his "treatments" He was on prescription meds for a year, but had very bad side effects, and not much improvement in tics as well as a worsening of his OCD etc. His natural treatment plan was enhanced by detoxification from heavy metals (in his case mercury, and chlorella supplement was used followed at the end by alpha lipoic acid)) and also controlling yeast overgrowth(candida) in his digestive tract. (we initially used caprylate by Solgar but then found Candida Clear by NOW to be most effective) We also found that artificial foods were big tic triggers for him (coloring, sweeteners like Nutrasweet ie aspartame and Splenda ie sucralose, MSG ( beware its hidden names in food...!!), chemical preservatives and high fructose corn syrup) We ran allergy tests and did a process of food elimination, but he doesnt have any natural food allergies per se, only mild p-nut sensitivity so we avoid those. For some folks tho, things like dairy, wheat(gluten) etc can be allergens and so intensify tics, OCD etc My son was also able to identify other tic triggers that he has such as chlorine (he avoids pools now) and dustmite, mold etc and also most strong smells like in perfumes, and some household cleaners, air fresheners etc (some of this is probably related to his hypersensitivity to sensory things..ie taste, smell, touch, sight and sounds) Occupational therapy [/b] made a big improvement in his sensory issues from the Sensory Integration Dysfunction that so many folks with TS etc seem to have....tho he still removes all labels from inside clothing and wears his sox inside out as the seams drive him nuts There is an excellent article here at Latitudes on Tic Triggers http://latitudes.org...ng_triggers.htm Acupuncture has greatly benefited him too, as has reflexology and biofeedback (NOT neurofeedback) In addition he sees a NUCCA chiropractor who uses gentle pressure methods to help reallign him as ticcing frequently causes skeletal misalignment with resultant neuromuscular problems which cause pain and can even trigger more tics too! ( http://www.nucca.org ) He also had Cognitive Behavioural Therapy for the OCD, and occupational therapy helped with many of his Sensory Integration issues In addition we tested for PANDAs (strep negative) and Pyroluria (not an issue) as these can also be conditions that exacerbate tics, OCD etc We saw an INTEGRATIVE medical doctor (trained conventionally, but specialised in natural medicine) and she and her team worked together on my son's treatment and testing The OCD, depression, anxiety and other mood issues were always the most troubling for him, and the improvement that the supplements like primarily 5HTP & Inositol have made there are remarkable! (It is not a good idea to mix some of these with meds tho, so do note that!) I based the rest of his supplements on Bonnie Grimaldi's researched plan for her child.
http://www.oocities.org/torcha.geo/ts_main_bonnie_sup.html
She now has her own products, BonTech on the market which many people use with great success for tics ( www.BonnieGr.com ) but I still use the combinations that I initially implemented for my son, based on Bonnie's protocol but fine tuned to suit my son's specific needs, under guidance from a physician, as it WORKS and so I am reluctant to change anything. ------------------------------------------------------------------------------------------------------------------------------------------ Here is our program * multivitamin/mineral (the multi has all the good antioxidants,and other RDA supplements and is high in the B group vits, and I add an extra B1 ( IMPORTANT NO COLOR, FLAVOR OR FILLER IN THE MULTI!! ) * combo essential fatty acid supp containing flaxseed, borage and evening primrose oil ( My son is sensitive to fishoil, as some people are, but if you tolerate it, it is good to also use that) * Lecithin * Royal Jelly * ginko biloba(for ADD) * Inositol (for OCD & tics) * St Johns Wort (for OCD) * Vitamin B12 as METHYL cobalamin
* P-5-P (vit B6)
in the evening he gets * 5HTP (for OCD) (please note 5HTP can have bad side effects in some people so use with caution! and NEVER with medications that elevate serotonin!!) * Methionine (for OCD) (some people prefer samE) * calcium/magnesium/zinc combo( magnesium = main tic reducer) * taurine (main tic reducer) * GrapeSeed PLUS extract Boosts immune system and seems to also promote restful sleep. The blend I use also contains Bilberry for his vision as well as other essential antioxidants) --------------------------------------------------------------------------------------------------------------------------------------------- When he is run down he also gets co-enzyme Q, and if we notice anxiety up I add GABA for short periods) He used to take L-carnitine, which many folks find very beneficial especially for vocal tic reduction, and relaxation, but lately he seems to get edgy from it so we discontinued it. The doseage of the supps depends on age and body weight so I have not included it here I stress again,ESPECIALLY if you are ON MEDS, it is a good idea to talk to a physician before adding or combining some of these supplements as interactions can occur which can be serious. Here is an excellent site for reading up on the various supps etc http://www.iherb.com/health.html ----------------------------------------------------------------------------------------------------------- I should also mention that when my son began his natural treatments, he had tested +ve for epstein barr virus, tho without mononucleosis. We therefore adopted a homeopathic and herbal/supplement/diet regimin as antimicrobial Things like monolaurin(lauric acid from coconuts) olive leaf extract, and cooking with garlic, ginger, turmeric, plus the candida Clear (which has oregano oil, wormwood, pau d'arco and other antimicrobials in it) Extra Virgin Coconut Oil (we like Nutiva) is also excellent uncooked, and drizzled over food. The probiotics we use are natural Lifeway kefir and Stoneyfield Farms Plain Organic Yoghurt L-lysine is also a good supp to prevent viral outbreaks information overload???? I will be happy to answer any questions! ------------------------------------------------------------------------------------------------------------------------------------------- EDITED TO ADD: Certain of my son's tics were clearly interlinked with his OCD, and this was especially so with injurious ones. The psychiatrist who was working with him at the time educated us about this interaction between OCD and Tourettes (Tourettic OCD), and also about ENDORPHINS, the "feel good" chemicals naturally secreted by our brains when we experience pain. Sometimes repetitive injurious "tics" can be stimulating endorphins and so the patient keeps doing them because of this natural high. the amino acid phenylalanine, in its D form, promotes endorphin release and my son was on this for a while. It totally stopped these self injurious "tics" It isnt easy to find D-phenylalanine, but the DL-phenylalanine is more widely available. Please note that where just the L form helps with depression, it is the D form that is needed for the endorphin release. A very good way to also increase endorphins is moderate excercise. I should also point out that *some people may tic more from phenylalanine* as it is dopaminergic. This was not so for my son for the short time that he used it, but it needs to be noted. Also wanted to mention the tremendous benefit my son has from EPSOM SALTS tubs. The magnesium sulfate in the salts seems to have good results on tics, detox and relaxation. He has one most evenings. 2 cups epsom salts in a tub of warm water and approx 20 min soak. He drinks lots of pure water, or chamomille tea while in tub too. Epsom foot baths are good too! as is soaking a washcloth in strong epsom solution and apply to areas where tics happening most. Epsom cream also helps. (1.2 tbsp salts, saucer hot water. dissolve and mix into 1/4 cup aquaphor cream) Morton Salt has a very good Epsom lotion ----------------------------------------------------------------------------------------------------------------
Hi to all of our members this thread will remain dedicated to posting links to important topics here at Latitudes/ACN, whether link to a thread (copy and paste the URL in your browsers address and then paste here) or link to a specific post within any thread (if u look top right of the post there is a number eg #1...just click that and the post is brought up so u can copy and paste that URL) Any links for *other* sites, where you feel they would be beneficial to the members, are welcome, but it would be a good idea to really limit those, so that what is truly clear INFO 101 threads by our own members are grouped here, allowing all members, and especially newcomers, to be able to easily find them. We also have to be careful of the perception of "endorsing" research, products, physicians etc. If in doubt as to whether a link here is suitable, just PM me and we will check it for you What we want to do is try to only use this thread to minimize confusion and provide a comprehensive database of info that has primarily been gathered here for anyone searching for answers Please NO DISCUSSION on this thread. Feel free to start a new thread below on any topic here for discussion thanks for your help in putting this valuable resource together:) **Editing In: Editing In! Sheila Rogers has written some excellent resource books: >>> Natural Treatments for Tics & Tourette's: A Patient & Family Guide by Sheila Rogers http://www.latitudes.org/book.html >>> Tourette Syndrome: Stop Your Tics by Learning What Triggers Them https://latitudes.org/store/tourette-syndrome-triggers-book/ **Editing in that this thread is specific to tics and Tourette Syndrome and their related disorders We have a dedicated PANDAS/PANS etc forum here and all PANDAS related threads are now being moved there. That forum will also cover what was known as PITANDs, Lyme Disease and other infection related neurological conditions that fall under PANS http://www.latitudes.org/forums/index.php?showforum=17