Chemar

hi Faith 100mg of B6 is what is usually recommended but I find my son does better on 50mg twice a day than 100mg altogether He cannot take vitB12 other than in his multi and in the sublingual B liquid complex...if he takes a B12 capsule he tics more. He also cannot handle any extra niacin or folic acid this is why it is so important to supplement according to the individual needs. However, reading your posts, it sure seems like you have been thru all the tests. Have they done a Spectracell analysis of his vits too? Do remember that there is often a period of slight worsening before getting better for some people when they first start a supplement program. This frequently happens to folks using Bonnie's TS-Plus, but then the majority seem to adjust and show really good results. Some dont tho and so have to try different combos and doses. Another reason why I feel supps should always be added very gradually (minimal dose and one at a time) and in phases so that one can keep a record and therefore have a clearer picture when a specific one is causing a tic increase. dont know if I have helped or confused you even more but those are my thoughts on it.

Hi Daniel from my understanding, xylose is the natural form...xylitol is chemically altered.(polyalcohol form of xylose) I know many people use xylitol without problem, and it certainly is one of the better sugar substitutes, but I personally dont react well to it digestively and neither does my son, and so we totally avoid it. This is a personal health choice and I am not saying xylitol is bad per se...just that it does cause digestive upset in people who are sensitive to it. My son has also been told to totally avoid sorbitol as it is known to cause IBS, and with his Crohn's dx, he has to be very careful. Altho we were told stevia is ok, we find it too sweet and dont like the aftertaste We continue to use pure turbinado sugar, honey and pure maple syrup as our only sweeteners.

ah ok, Faith..if it is the Nu Thera hypallergenic caplets then they have no sucralose and a lower P5P the liquid forms have added sucralose and very high B6 content which is what had me concerned why on earth they would use sucralose is beyond my ability to comprehend. stevia would be a much better alternative. I dont even go near sorbitol or xylitol sweeteners. yes, we had heavy metal testing and my son showed higher than desired mercury, for which our doc recommended chlorella capsules. His mercury was not high enough to require any of the other removal systems like chelation therapy etc

Michele altho i am no expert in this, from everything you are describing it sounds like your son has a classic case of PITANDS i did post a link for you before of the diagnostic criteria/testing for PITANDS> I would recommend you printing that out and taking it to the appt with you on Monday a full viral panel needs to be done to dx as well as a detailed history of illness,tics,etc Hopefully the immunologist will be able to help....if not, I would really recommend finding a DAN or other doctor who is knowledgable about PITANDS-PANDAS ....best way to check that is to ask before you make the appointment. (((((Michele)))))) I can sense how very overwhelmed you are. Please dont lose hope of being able to help your son. Once you have found a competant doctor things will start to come together. I know you are in the final stages of pregnancy and honestly, you owe it to yourself and your new baby to focus on that. all this stress cant be good for you. once your baby has arrived and you can refocus, then you can move forward step by step. Please feel free to send me a private message if you feel you want to discuss this in more depth, and I will give you my email address so that we can communicate quickly and more directly. I will do whtever I can to try to guide you thru this Cheri

Faith...one thing I noticed when I googled ingredients of Super nu-thera is that it contains SUCRALOSE (ie splenda) which ia an artificial sweetener (sugar that has been chemically altered with chlorine!!!! ) and is a BIG TIC TRIGGER for my son and many others It also has an extremely high vitB6 content! where B6 is good....IMHO that is way too high, especially for a child....... I dont know how long he has been on that, but sertainly the sucralose (nevermind the propylene glycol ) is something I would stay away from I know Kirkman makes some good products but I was really surprised to see both of those in there As for the fish oil....with my son the result is almost immediate....he has fishy burps and then shows a marked increase in the intensity, frequency and duration of the tics LOL at the "filed for bancruptcy"

ah Lisa....now I see what is happening! what you are getting are forum subscription notifications. You must have subscribed to forum notifications at some point. Go to your control panel and click on the topic and then on the forum subscriptions links on the left menu when you get there it will likely show the subscriptions use the drop down menu at the nottom to UNSUBSCRIBE and then submit that should take care of it for you

Hi John how great that you are already seeing an improvement! re the other kids........in the early days before we had the TS diagnosis, our doc advised my son simply to say: "I cant help doing this, it is like an allergy" As he got older, and with the dx, he chose to elaborate and told them it was Tourette tics, that he had no control over them, that they werent serious etc etc........it is amazing how cool kids are when they are given an explanation! yes, there will always be some insensitive kids who tease and even adults who stare etc but best to advise him to learn to ignore them! It is THEY who have a problem....not him

bumping up for Michele, Dedee and Faith

here is some info on differential diagnostics for PANDAS vs PITANDS http://www.webpediatrics.com/pandas.html I have a number of other resources but cant look them up right now as I am working. do also look at the list of threads here as Ronna recently made a really good post re this. I will see if I can quickly find it and will bump it up

awww thanks Carole and Lisa It is my privilege to try to be of help here! ok I just heard from our webmaster and the problem should now be fixed and all private messages should again be readable

even tho your message boxes may say you have no new messages this is part of the glitching and if you go into the message box you may be able to access them some of mine are accessible while others lead to an error page our webmaster is working to fix this problem also, for those who have asked what (Block) next to the messages means....that is a feature that enables you to block that person from sending you PMs if you no longer wish to hear from them. Hopefully wont be needed here thanks for your patience while this problem is being fixed

((((Irena))))) It is good to see you tho I am so sorry to hear that things are not yet getting better If Stas' amino acids are out, this could be a very big answer in what is happening with him You and he will be in my prayers Irena Try to spend some quiet time yourself with God. I learned diring the worst years for us that there was a time for me to cry out to Him but also a time for me to be silent in His Presence to listen...it was then that the answers to my cries came we are always here for you Irena

Hi Nicole and welcome my own philosophy is that, unless one has allergy or sensitivity to any NATURAL foods...they are ok and that is is ARTIFICIAL or chemically altered etc foods that should be avoided. I tend to follow the dietary guidelines in The Maker's Diet (by Jordan Rubin) as to which foods are beneficial to humans and which are not, and those principles are in turn based on biblical guidelines Many people do have dairy and or gluten allergies or sensitivities and so those are usually top of the list to check into I know the Feingold program that Jeff and some of our members have had such success with does restrict certain foods. My son does not seem to have any probelms tho with those foods and so I allow them One thing I think we all agree on is to stay completely away from the artificial colours, artificial sweeteners (including splenda/sucralose) high fructose corn syrup, MSG, certain preservatives etc

sounds good John as that liquid has the 2:1 ratio I assume the multivit/min has no artificial colouring or artificial flavouring? there is likely also calcium as well as the magnesium in the multi, but overall the 2:1 ratio should be adhered too without being too intense about it it is an approximation rather than having to be exact to the last mg/ml remember the key is ONE DAY AT A TIME and keep focussed on that light at the end of the tunnel

Dear Daniel thank you for that very special post when I think back to how you were feeling when you first joined us and read this now...well...all I can say is how very very encouraging it is!

Hi hoping it all settles down now that you are supplementing with the multi again (so important!) and eliminating that caffeine, which is known to be a BIG tic trigger also, the exceitement of the vacation and the change of routine etc etc can additionally be triggering more tics enjoy your vacation!

Hi John yes...2.5mg magnesium is low and a child of 8 with tics can have at least 250-400mg depending on weight Do make sure that his calcium intake is upped as well, whether via foods or via additional supplement...it is generally advised that the daily calcium intake should be approx double that of the daily magnesium intake re the fishoil.....introduce that about a week after you have started on the other supplements and then watch carefully as some people with Tourette's find that fishoil makes them tic more (even tho they can eat fish ok) Some do fine on it and hopefully Conner will too, as it is by far the best source of Omega 3 EFAs If you find that he tics more within 3 days of taking the fishoil, switch to flaxseed oil with is also rich in omega 3

Just an alert that out forums are undergoing upgrades and maintenance and this has caused some problems in the Private Message feature I have notified our webmaster and it is hoped that this will all be sorted out asap Just do be aware that until this is fixed, some private messages are not displaying correctly our apologies for the inconvenience and thanks to all who have alerted me about the problem

Hi CP...no, we have never used krill oil Hi Faith I am not familiar with Dr Zimmer, but we consider my son's chiropracter here to be an essential priority in his overall treatment

Hi John and welcome the best advice I can give you at this point is to start reading thru back threads here I realise that you have limited resources where you live (beautiful place tho ) and so the best you can do is to start with what is doable....careful attention to avoidance of artificial foods and other known tic triggers ( see the article here http://www.latitudes.org/articles/finding_triggers.htm ) and maybe try to order Sheila's book so that you have a reference at hand ( http://www.latitudes.org/book.html ) In addition to avoiding artificial foods that can trigger tics, supplementing with a good multivitamin/multimineral and adding extra magnesium is a big plus I have documented the things that helped my own son here http://www.latitudes.org/forums/index.php?showtopic=687 and other members have also posted threads about what they have found to be most beneficial John.........PLEASE dont allow despondency over this to consume you. As so many of us can testify...whether this is Tourette Syndrome or some other tic disorder....there is MUCH reason for you to feel hopeful most tic disorders, including TS, decline once the teenage years are over and in the meantime, inplementing things that can help can alleviate many of the symptoms My husband and our youngest son have TS, and I can assure you that they live full and happy lives! I know others will also be along soon to add their welcomes and experiences and I hope we can all help you to feel encouraaged and have much hope Cheri

Lisa when you go to "My Controls" and look at the bottom left menu you will see "Options" and then the 5th down you will see "Email Settings" Click on that and then under the Privacy Settings, check the top box showing you do NOT want emails from other members and DO NOT check the box that shows you are willing to receive admin emails under the board settings, do not check any that should eliminate all email notifications to you if you are still having a probelem let me know and I will ask our webmaster to set it for you Cheri

hi Homer and welcome sorry I missed your post yesterday Natural Calm is magnesium citrate We can buy it locally at The Vitamin Shoppe stores, but it sells for much less (almost the same price for double the amount) at http://www.iherb.com I know there are other magnesium citrate powders available, tho this appears to be a proprietary blend, and is pure magnesium citrate the product you describe sounds ok re the calcium..........yes, one does need to consider dietary sources of all suplements when working out what doseage to take

Carolyn have you ever read The Maker's Diet by Dr Jordan Rubin I realise your elimination diets are a very rigid and specialised thing, but just wondering if you could get some tips from the wonderful recipes and tips in that book.

Hi Rachael and welcome I was also confused when you said your child tested "positive for Tourette Syndrome" as there really is no definitive test for TS...and so am assuming that you meant PANDAS. Altho people with TS can have intensification of their symptoms if they also have PANDAS, PANDAS as such doesnt "cause" TS, but rather causes tics and/or OCD and other neuro issues induced by the strep As Alison, Ronna and many of the other parents helping their kids with PANDAS have found, azithromycin (zithromax) used prophylactically seems to be producing the best results As you are in Melbourne, I would like to suggest that you contact Dr Tanya Murphy at the Shands Clinic in Gainesville, Florida and ask for a referral to a doc in your area...or even consider the drive to Gainesville to see her...She is at the forefront of PANDAS research, and has a grant from NIMH for her research into it. My son had his PANDAS testing done there, and altho he tested negative, we were really impressed by Dr Murphy and her team Her phone number is (352) 392-3681. Here is more on Dr Murphy http://www.psychiatry.ufl.edu/people/bios/murphy.htm

Hi PearlDoves Nice to see you here we get a bit quieter over the weekends, but I am sure you will get a whoe lot more replies coming in re the magnesium supp: many people find that taking a good combo of calcium:magnesium:zinc is just right(there needs to be double the amount of calcium to magnesium present...adult dose is usually 1000:500:25 or50) There is also strong evidence to show that for many people taking magensium as a chelated compund with taurine is very beneficial for reducing tics..this is known as magnesium taurate and is available by a company called Cardiovascular research (sold online or also at The Vitamin Shoppe stores and website) and also made by Bonnie Grimaldi as part of her Bontech line of supplements for TS ( http://www.BonnieGr.com ) My son takes his calcium, magnesium, zinc and taurine as separate supps as that seems to work best for him, and he (along with other people with TS) is helped tremendously by taking Epsom Salts tubs...2 cups epsom salts=magnesium sulfate) in a tub of warm water and soak for 20-30 mins. Very relaxing and really helps calm tics and promote good sleep Many people have been reporting very good results with a product called Natural Calm, which is magnesium citrate powder. It is available at The Vitamin Shoppe and some other health stores, but also online for much lower price at http://www.iherb.com where 16oz costs almost the same as 8 oz does in the health stores. My husband, who also has TS, really likes Natural Calm, and takes his calcium and zinc separately. He doesnt use taurine as some people are sensitive to it and he is one...as is Carolyn, one of our members here) Speaking of Carolyn, she has been doing B12 shots for some time and so she would be the best one to advise you on that I would so agree with your neuro re meds....honestly, it is my experience with my own family and from hearing from so may others, that they often bring side effects that area whole lot worse than the tics! They work for some people, but it is something I would approach with great caution and awareness of what each may bring in side effects. Our admin here, Sheila Rogers, has written a really good book on natural treatments for TS I think I mentioned it to you on NeuroTalk but here is the link again http://www.latitudes.org/book.html and she also has a real good article on Tic Triggers on the TS section of this website http://www.latitudes.org/articles/finding_triggers.htm I think I gave you the link to my thread on NeuroTalk on the various things that we have found helpful but in case not, here is a thread I have here on the same subject, which I have just bumped up for you and some of the other new members who have contacted me here is the link to that http://www.latitudes.org/forums/index.php?showtopic=687 hope that gives you a bit more to work on Cheri