Chemar

Hi Carol I use a number of different brands and have basically two criteria They must be pure (no artificial color, flavor, propylene glycol or other "fillers") and they need to fit my budget which is very tight. The combinations that I give come close to the overall doses recommended in Bonnie's original research http://www.geocities.com/Area51/5207/ts_ma...bonnie_sup.html and I have added some other things that she also now recommends in her new program http://www.BonnieGr.com and ones that I have determined to be good for my son from my own research and enquiries I give a basic morning group of 1 multivitamin/mineral (the multi has all the good antioxidants etc, and is high in the B group vits, and I add a B1) 1 combo flax/borage/omega-3(fish) oil plus 1 Lecithin 1 combo cal/mag/zinc 1 taurine 2 ginko biloba(for ADD) 1 St Johns Wort (for OCD) 1 l-Carnitine 1 Royal Jelly in the evening he gets 1 5HTP (for OCD) 1 Inositol(for OCD) 1 Evening Primrose Oil 1 Methionine 1 coQ10 1 GrapeSeed extract 1 Bilberry(for vision) Sometimes, if the need arises, I add a B-CO(NO IRON!!) to the mix That is the basic outline of what he gets, and of course we watch the diet VERY carefully so he eats healthy good stuff, no artificial colors, flavors or sweeteners and NO HIGH FRUCTOSE CORN SYRUP, no caffeine and mimimal sugar(we only use pure Turbinado sugar) he likes pure dark chocolate, and is allowed some of that, and i try to make most things from scratch and use honey and maple syrup for flavor. It sounds overwhelming but once you get into the routine, and start reaping the benefits, it is SO worthwhile. I actually dispense the pills into Ziploc snack bags and do a week's worth at a time then label them "morning" or "evening" and so it makes it easier If you need more detail, let me know.

Yay for Betty's son!!!! That is exactly what happened with my son when he realised that having intense tics was far worse than getting the dreaded supps in. Betty....I also feel your tears as I have sure been there and it is SO hard to have our kids hurting physically or emotionally....wish I could give you a great big hug of support! Just keep surrounding him with your love and reminding him how precious he is. He is blessed to have you for a mom. Nancy, that is interesting news about the VitaminShoppe and mag taurate We dont have any stores by that name here but i will check it out online. At present I use the 'Origin' cal/mag/zinc combo, which is mag glycinate and no nasty stuff, and i give a separate TwinLab taurine cap.

A VERY interesting recommendation has been made on that thread at BrainTalk about helping kids get pills down........this may be the answer many have been searching for.......

Bonnie just posted this link on the Brain Talk Forum, and I thought it would be a good one to put here too as i know so many kids have struggles with taking pills. http://www.acor.org/ped-onc/treatment/Pills/pills.html Here is the thread link on BrainTalk discussing this topic http://neuro-mancer.mgh.harvard.edu/ubb/Fo...TML/005412.html

NATROL also makes an excellent source of the Essential Fatty Acids with a combination of Flax seed, Borage, Omega-3, and others. It is the one we use, and I also give Evening Primrose Oil and Lecithin. Jennifer is so right about the importance of the Flax...it not only provides the help with the TS stuff, but is also excellent for the digestive system. Some kids also hate the taste of the fish oil caps, and there have been reports of sensitivity in some to fish oil. Borage oil is an excellent general supp. and with added benefit for ADD. There are some links for lots of info on the Omega-3s and EPA/EFA info in general http://puterakembara.org/rm/EFA.htm http://www.nutritional-healing.com.au/omega_mental.htm and a simple to understand favorite of mine http://home.howstuffworks.com/fat4.htm ( I just LOVE that howstuffworks.com site.... covers just about everything you can think to ask about anything)

Hi Gina the vitamin guru when it comes to TS is definitely Bonnie Grimaldi, who has formulated her own brand of supplements specifically for TS. You can find out more about them at her website http://www.BonnieGr.com Bonnie is a very caring person and you could also email her to ask advice. For some people, either the expense or the volume of Bonnie's supps are a problem, and so we try to "copy" her formulas by supplementing with good pure supps from reputable companies that either better suit our budget or minimise the number of pills our kids have to take. The original basis for Bonnie's program can be found here: http://www.geocities.com/Area51/5207/ts_ma...bonnie_sup.html Note that she has since added Omega-3 and other supps to this regimin, making the treatment even more effective. If this program seems daunting, remember that just a start with a good multivitamin/mineral, boosted with extra B, mag/cal/zinc, taurine and Omega3 can make a BIG difference. Then you can start adding others to build up to the optimum. Provided you follow doseage directions, it is safe to use vitamins & minerals. I can attest to the fact that following Bonnie's guidelines has totally changed my son's life!! Her supps are definitely the best available, and so if you can, start there as you can rest assured that they are pure and carefully formulated to work for TS.

Jennifer.......yes, sickness always seems to make the OCD & the tics worse. Fran...we are using 500mg Inositol per day (TwinLab brand) and the minimum dose of 5HTP per day at 50mg (Natrol) He is 14 and weighs $130lb If the OCD is waxing, I give an extra 50 mg per day for 3 days. We noticed a dramatic improvement within a week or so of starting. I give them in the evening as the 5HTP relaxes him so, I dont want that at school. REMEMBER tho.......NEVER mix 5HTP with any anti-depressant med that also elevates seratonin without a doctors consent........seratonin spiking is not a good thing!

Jennifer I have noticed a similar pattern in many aspects of my son's life...he is nearly 14yo. This even shows re: food..........he will crave a particular food and cant get enough of it....and then suddenly hate it and go for a new one......and then, some time later....it is back to the other one Same happens if there is something he wants...eg a new videogame, or when he was younger , a toy.....it becomes a total obsession where the "must have" till he gets it.... I must say tho that since we started the 5HTP/Inositol treatment this is much subdued. Fran........I really want to encourage you to start a supplement program...it has really turned my son's life around physically, emotionally, socially etc...it really doesnt have to be a laborious routine...just a few of the important supps can make a HUGE difference.

Hi Cory Just checking in to see how you are doing. Sure hope you are feeling better.

Hi Jeff we are not "on" a Feingold program as such, but absolutely agree with his recommendations on what to avoid. That Corn Syrup is the toughest one, as, as you have stated, it is added to almost everything these days ......... we especially find my son reacts to the High Fructose Corn Syrup most of all.......all colorings(blue & red seem to REALLY trigger tics) and artificial sweeteners..... Aspartame (NutraSweet)contains formaldehyde and Sucralose(Splenda) is chlorinated sugar both of those chemicals are known tic triggers...... the list goes on and on on the junk they stick in food that messes with people's brains. So glad to hear the success you are having with Feingold......isnt it great when you find a program that works......for us it is the careful dietary monitoring and supplement addition, as well as avoiding environmental triggers.

We had a similar experience last school year.........my son's home room got new carpeting over a long weekend. because of an a/c flood. He came back from school the first day back, ticcing intensely and with OCD symptoms that we hadnt seen before.......when I checked on what he had eaten etc at school, nothing seemed amiss....till he told me of the strong smell in his classroom ......... sure enough....it was the carpeting and they moved the class for a week till the roomhad aired. Interestingly, the teacher had noted that the ADHD kids were way more hyper too !! We have noticed very similar reactions in our son to all strong smelling househild cleaners, gasoline, pesticides etc and have gone as "natural" as possible in our home!

Hi Isnt it wonderful to start seeing positive results without side effects like the meds cause!! We have also had tremendous success with a good supplement program and my son has improved dramatically from VERY severe TS 2 yrs ago(horrible experience on meds for 1 year prior) He has always had a much tougher time with OCD than tics, and was even hospitalized once because of a tic that became a self injurious OCD! For us the breakthru came with a combination of Inositol and 5HTP added to his TS supplement program. He does also have some GABA in an Evening Primrose complex as well. IMPORTANT NOTE: If anyone does decide to try the 5HTP......... PLEASE do NOT take it with meds unless a doctor oks it....5HTP boosts seratonin levels which is good in OCD, but it shouldnt be combined with meds that also raise seratonin levels (eg antidepressants in the SSRI group etc) as too much seratonin can be dangerous.

Hi MC I am not going to even start to try to describe my gripes against the conventional practice of medicine......but I know exactly what you are feeling. I even considered legal action after what happened to my son...but instead I just turned to the excellent treatments and healthy diet, environment etc and our whole family has benefitted!! As to the mercury....YES I firmly believe that mercury would have a detrimental effect in TS and in general. We only found a few doctors who were mercury free...including our wonderful pediatric dentist. What annoys me most about many (not all, thankfully) conventional practitioners is that they are so quick to call anything that they know nothing about "kooky" or quack stuff. Well their so-called "quack-stuff" has had a WONDERFULLY positive effect for my son's TS/OCD etc........whereas their drugs barely helped his symptoms, brought him a bunch more from side effects and then nearly killed him!!! ok .......nuff said before I start ranting

Cory there is also a very good site for Adults with Tourette Syndrome at http://www.ddonin.com/ That is quite a med cocktail you are on......gotta tell you....the throw up feeling may even be a side effect from all those meds....and especially if you dont feel they are helping you...maybe it's time to try something else. Some people just dont do as well on meds, and thankfully there are natural treatments that can really help. Even if you can just start with a good multivitamin with an extra supplement of magnesium that's a good start till you can learn more about vitamins and other supplements and which ones help TS. Also try, if you like it, to eat plain yoghurt. it also helps to strenthen your system, especially when you are on meds. Have you ever contacted the Tourette Syndrome Association about advocates in your area who can offer you assistance in getting benefits and treatment ? Their website is at http://www.tsa-us.org and there is a link to go to the various states and find a local support group etc. There is contact information and they will provide you with any info they have that can help you. You will also see a section for advocacy, which is very helpful. Hope things start looking brighter soon, and that the gagging will go as you start to get healthier. I am happy to be of any help I can and sure hope you get the benefits you deserve. stay in touch

BRAINTALK IS BACK UP Here is the link again for advice on getting the supplements into your little ones http://neuro-mancer.mgh.harvard.edu/ubb/Fo...TML/005353.html

Hi Olga the BrainTalk servers appear to be down....so that is why the link wont work.....cant cut & paste either cos I cant get in either Hopefully it will be back up real soon. I will post as soon as it is

Hi Cory My son says when he had the gagging tic, the saliva in his mouth made him feel like he was going to throw up too. He used to gag and spit then. He also has OCD, but, once again, this was helped by supplements. My son did not do well on any of the meds either....they actually made things worse as they didnt give much relief and brought a whole lot of nasty side effects. Are you on any meds right now? And seeing anyone to help you? My heart goes out to you, as it sounds like you are having a hard time, and I know that depression can also creep in. Please try to post just what you are taking now to help you, so that those with experience and training here can maybe make some recommendations. Have you ever contacted Dr Duncan McKinley?? He has TS himself, and is a psychologist with a great website called "Life's a Twitch"...you can find it at http://www.lifesatwitch.com He is a great guy, who has a lot of experience helping people through the tuff times of Tourettes.....there is an email contact for him on his website. Sure hope things get better for you....dont give up hope! My son's experience going from severe disabling TS/OCD etc to where he is now is a testimony as to how things can get SO much better with the right treatment and understanding, Keep posting and learning as much as you can

Hi Cory I am not too sure what your mean by gagging, but I know that one of my son's past tics involved making a strange gagging noise....he said he had to do it because of the saliva in his mouth and throat. I did a quick Internet search on "gagging tic in Tourette Syndrome" and turned up lots of references to it....so it is obviously quite common. I also noticed that the biography of Polly Draper was there, and that she has a gagging tic.(Polly was the producer of that great movie on TS called 'The Tic Code' and she also played the part of Ellen on 'thirtysomething') It seems to me that often people refer to a gagging tic as a type of "throat clearing" Do you take any supplements to help with your tics, Cory. My son is 13 and dx TS since he was 10. His tics used to be very severe, even when he went on meds for a year, but now that he is on a good nutritional program with special supplements, it has reduced to very mild. Hope this helps Cheri ps I see the BrainTalk servers are down today hopefully the forum there will be back up soon.

Hi again Carol glad to see you at BrainTalk too Swallowing all those pills is the hardest thing for kids to do isnt it...even my son, who is now 13, hates it!! He is not on Bonnie's supps anymore as we just cant afford them at present, and so I have found good pure combo supps that provide him with the quantities that Bonnie recommends, but he gets to take less pills. I know that they are nowhere near as good as Bonnie's ......but they seem to be helping greatly and he finds it easier to take and my $$balance can handle it better. There was a thread on BrainTalk recently discussing ways to get the supps in to young kids.......you've probably tried them all, but here it is, just in case you find something new http://neuro-mancer.mgh.harvard.edu/ubb/Fo...TML/005353.html

Hello Carol In addition to the very good advice that Jeff has given you about the artificial tic triggers, there is also a lot of help to be found in giving your son the supplemental vitamins and minerals that have been found to be beneficial for Tourette Syndrome. There are some other threads here that discuss the supplements in more detail, including these http://www.latitudes.org/forums/index.php?...98ded1eda47ba9a and this one, started by Bonnie Grimaldi, who has researched and developed excellent supplemental products that help enormously with TS http://www.latitudes.org/forums/index.php?...98ded1eda47ba9a I also want to encourage you to try, nomatter how hard it is, not to focus too intensely on your son's tics, or to try to get him to explain why he is doing or saying things.....this kind of scrutiny and attention often makes it much worse, because you are forcing him to focus on the tics or to try to control them and that is sometimes like shaking soda with the stopper on the bottle....something has to pop!! You son is having vocal and motor tics that just "happen"....he doesnt understand them himself, and is probably very confused and scared by it all. Just try to be there if he needs you, but let him tic....HE HAS TO...it is not in his control, especially at his age. The muttering and repeating things he hears on TV etc, even repeating others words, and the movements you describe are very "normal" tics! It is very possible that your son may also be experiencing a waxing phase in his tics for a specific reason...many children have increased tics as they enter the pubertal years.....sometimes a food or environmental allergy can set things off.....so can illeness or infection. I am not sure if you know about PANDAs, which basically involves strep related tic intensification etc. There is a wealth of info available and some really excellent websites related to TS and its associated disorders.Let me know, and I will give you more links to some of these sites. I know you will find a lot of caring people on this forum, and also a lot of very good advice and expert opinion, especially from Dr. Rogers. Latitudes/ACN is the very BEST website to learn about TS and it's treatment I would also like to invite you to join the BrainTalk TS Forum as a support group.....you will find great support and experience there from people who are either parents of TS kids, or who have TS themselves. I find that combining these two forums really helps me in my role as a mother of a 13 yr old with TS . BrainTalk is at http://neuro-mancer.mgh.harvard.edu/cgi-bi...er=99&SUBMIT=Go Carol, I know it is SO very hard to watch our precious children go thru this, but please dont despair.....there is a lot of hope and success in living with TS....my own son is a testimony to that....having gone from very severe TS/OCD etc nearly 4 yrs ago to mild symptoms now, and a full and meaningful life now!! Most of all...just keep absorbing as much knowledge as you can and keep contact with forums like this one and the one at BrainTalk....having the support of others who truly understand is the best thing you can do for your son and yourself. ((((HUGS)))) to you and your precious son

Here are some sites that sell bacopa, and give a little background on it http://www.raysahelian.com/bacopa.html http://www.alternativehealth.com.au/Articl...cles/brahmi.htm http://totalherbalcare.com/product_info.ph...0bc9cfbdd14497e a Google search for it turns up quite a lot!! None seem to address the side effects or possible interactions tho and of course a major concern would be the purity of the product. Interesting tho....I am certainly going to try to get more info on it.

Hi Makeshift There are a couple of sites that do try to cover herbal remedies...what they do and how they may interact THE NATURAL PHARMACIST: http://www.tnp.com/ THE HOLISTIC ENCYCLOPEDIA http://www.findhealer.com/glossary/glossary.php3 iHERB http://www.iherb.com/health.html These sites dont always have everything indexed, but are a pretty good resource in an area that is sadly lacking in information.

From one Natural Nutty Mom to another........... I know how you feel Nancy.....but I would rather have the "odd" label and protect my family!

Congrats! Bonnie.......it is so good to see your work receiving the academic recognition that it deserves! You have helped so many of us both directly and indirectly.....thank you! ***A question on amino acids....I notice some people are beginnig to supplement with a Multi-amino acid supplement....which i would think is not a good thing as it is my understanding that some of the aa's are contra-indicated in TS. Could you (or one of the other experts) remind us again as to which Amino Acids are NOT GOOD in TS. Thanks....and all the best with your continued research

Now that is a very interesting question! We know that supplementation helps children from a very young age , but what about "in utero" Hopefully Dr Rogers will answer this very important question for you. I would just like to congratulate you on your pregnancy and encourage you to continue this pro-active search for knowledge. You are going to be a wonderful mother!