Chemar

Hi Carolina I have sent an email in response to yours. You are on the right track so try not to be scared. Your daughter will make it through all this just fine. God Bless Cheri PS thanks Kim

Carolyn....I am sooooo pleased that you are going to do this!! You are a shining testimony to the benefit of alternative therapies I cant think of specific legislation issues....but it sure would be great if you could just reinforce how valuable it is for folks with TS and other disorders to have the option for supplements instead of meds! also, something I feel strongly about is for those kids at school who struggle to get the accomodations they need for their TS/OCD etc....I dont know if you have followed the discussions on BrainTalk of the mom going thru a nightmare time with her son's school.......I sure wish there were stronger Federal legislation in place to ensure that kids with neurological issues get appropriate accomodations in the public school system in all the states, counties etc. Some districts are so accomodating while others are just plain awful. Maybe if there was a national law.....there would be uniform procedures. CONGRATS on this Carolyn. We are all so proud of you

Hi Karyn perhaps the mag taurate is reacting with his meds (more likely the taurine component, which is an amino acid) but I dont know if this can happen? 500mg may well be just too high for a child of that age also, it is usually recommended that magnesium intake must be balanced with calcium in the ratio of 2 cacium:1magnesium so if it were 500mg magnesium then 1000mg calcium Tics can sometimes wax with a new treatment and then stabilise...but honestly, because he is on two very strong medications, I would highly recommend talking to a knowledgable physician about the correct supplements and dosages

Hi gobengals yes, I sure can understand your frustration about not having the finances needed! Some of these tests and docotrs do accept insurance. Anyway, here is a thread on what we found helpful for our son....perhaps you can get some help from it http://www.latitudes.org/forums/index.php?showtopic=687

Hi Simon honestly it is hard to try to rate one test as more important than the others cos it all depends on which is relevant to you, and you wont know till you are tested! A good Integrative or DAN doctor, who has experience treating TS,should be able to determine what is best to do first.

yes! this will help you to know best how to formulate your tretmtment dont forget the Candida testing as well, and if you havent ever had strep titres done, that is also worthwhile, as is PYROLURIA testing

Bonnie has worked out the dose for weight/age real carefully so you should be following her guidelines on that. It may be that you need extra doses of certain supps and that is where testing and working with a good doctor can help to formulate your specific needs

My son tics less when he is cold and more when he is overheated. Here in Florida, cold is a GOOD thing! We have had an abnormally warm winter and my son is griping about it big time...our winters here are usually mild with just a few cold days....but this winter we have often been in the high 80s with humidity and the forecast for tomorrow is 90!!!!! Blech! the air conditioner has been humming most of the time

Hi efgh so good to see you again and glad things have been going well. I really havent had more than a cursory glance at those ingredients and so cant make even an uneducated comment on them, OTHER THAN THAT THE FORMALDEHYDE STOOD OUT LIKE A RED FLAG!!! Formaldehyde in new carpeting, upholstery etc is a known tic trigger.............. gotta run but just wanted to say hi and mention that. blessings to you and your family

if you are doing well on Bonnie's BONTECH products then honestly, it is unlikely that you would be able to put together you own combinations with the same purity etc for much less! Bonnie has very carefully researched her combinations and they are made with the very finest ingredients. In our case, we started supplementing before Bonnie began her own line, but we DID use that link to Bonnie's original plan that Carolyn posted as the guideline. Also, once my son had been thru his testing, it became clear that he had very specific supplement needs and so it was both cost and need effective for me to put together his own regimin, under the guidance of our Integrative physicians. Even after Bonnie's supps came on the market, we didnt switch as again, my son's specific needs were a bit different from what was in the Bontech products, and also, he would have needed to take a LOT of TS plus for his age and weight. I find that The Vitamin Shoppe is a really excellent and cost effective source for all our family supps. Not only do they stock (or can order) just about any brand you need...but their own brand is really pure and usually 50% less than others. We have one of their stores close by, but one can also order from them online at http://www.vitaminshoppe.com Irena, they also stock the NOW brand, which I am very fond of! In the beginning we also used many supps from METAGENICS ... really good supps but a bit costly!

Hi JAC the important thing is to request that all the vaccines be free of thimerisol, which is the mercury containing preservative used in many vaccines ....I think tho that califirnia may already have eliminated thimerisol preservatives?? Here in florida it is only the hepatitis vaccine that is required for middle school, as the kids have usually had all the others when they are younger. I know that there has been info out that the MMR (measles mumps and rubella) should NOT be given as a single shot as is the custom, but should rather be given as three separate vaccinations. HTH

Irena all the information I have on Taurine says the OPPOSITE ie Taurine increases the production of serotonin (and melatonin) A very good source of Taurine and Magnesium ( both supplements that help to reduce tics) is as Magnesium Taurate from The Vitamin Shoppe ( http://www.vitaminshoppe.com ) Bonnie also sells magnesium taurate You are SO right about prayer....when I think back to the early days of my son's diagnosis, when his tics were so severe they were causing him injury, and when the meds made him psychotic and he was hospitalised and the doctors tried to tell me he would need to be admitted to the psychiatric hospital it was prayer prayer and more prayer that sustained us and gave us hope and courage and eventually led to me finding the information on the natural treatments. The most effective treatment for my son has always been prayer, because God answers with peace and encouragement and guidance...ALWAYS!

Hi Irena I just wanted to give you a (((hug))) of encouragement! Although you may feel incompetant...truly, from reading your posts you are not! You are on a journey of discovery and yes, it sometimes feels very overwhelming and frustrating, but the more you learn and apply, the more the pieces of the puzzle will begin to fall into place. When we were on the Candida elimination diet, where we tried to limit sugars and starches (the primary food of Candida) as much as possible, we did not totally eliminate breads and other products with Bakers Yeast Our doctor did not feel that it was as serious an issue for us as sugars, and, although we were advised to drastically cut back on foods containing bakers yeast, yet it wasnt a total elimination. We did eliminate those breads and other things made with refined flour tho She did however advise that we totally eliminate mushrooms and I noticed you had mentioned mushroom soup at school....... Our yeast problems were helped by a combination of diet and capryllic acid (caprylate) altho most recently when my son had a flare up after an illness, he was put on Aspergillus niger and Monolaurin and had a very rapid reduction in the Candida! I do know of many people who have tried just about everything for candida, and the only thing that has been effective for them has been the Threelac. Based on my personal avoidance of pharmaceuticals wherever possible, I am not a fan of Nystatin. But i guess it too has its place in Candida treatment for some. I do hope you can find a good Integrative doctor to guide you on all this as it can just get so confusing to try to do it all alone. I think just about everyone here who has eventually found success in helping to stabilise tics will agree that it is a learning curve experience....you just have to keep persevering until you find the right treatment or combination of treatments that best fit the individual.... I hope that the TS plus helps your son, but do remember, if it doesnt...this doesnt mean that supplements are not needed....some people respond wonderfully to the Bontech supps and some people do not...mainly because of the individual metabolism and specific vitamin/mineral/amino acid needs. Again, a part of the learning curve! so...I say all this again just to encourage you to take it a step at a time and never give up.....there is light at the end of the tunnel and as you work thru the process you will get closer and closer to it.

Hi Marie sorry to hear of the set back . Even tho my son has been in what we would call very very mild TS/OCD for a number of years now, yet, if he binges on junkfood (at sleepovers) or is exposed to any of the his other known triggers, we almost instantly see tic or OCD waxing...granted, never as intense as before, but still enough to be noticeable hope all stabilises quickly. (((HUGS)))

Hi Brenda yes, many people with TS do also seem to have issues with moods. We found GABA helpful, although I think it really was the overall combination of supplements that helped my son best, along with the fact that his system was detoxed from yeast and heavy metals, plus he had a healthy diet free of the junk If your daughter is low in zinc, maybe the TS Plus isnt supplying what she needs...we never used the BonTech supps but from what I know about them...an 8 year old should be taking a lot more than just 2 a day I think......... The "long drawn out need to know every detail conversations" could well be linked to OCD, which in itself can manifest in moodiness, and again we found relief with the supplements that help with OCD(5HTP, samE/methionine and inositol) As I have both a son and husband with TS, I have learned to accept certain degrees of moodiness as part of them, and I just leave them be when I sense a mood funk. I find that trying to discuss it, or asking what is wrong etc often just exascerbates things. Left alone (and with me just attending to subtle increases in their supps and special attention to their diet) these moods really do seem to pass quickly. Hope that helps a bit.....it aint easy I know but is just another one of those parts of TS that IMHO we have to just live with, provided it is not out of control moods or violence etc

Sunshine because we never dealt with PANDAS (my son has never even had a strep infection and tested negative when we had titres done) I cant comment on the specific questions you have asked re PANDAS however, I seem to remember that PROPHYLACTIC use of antibiotics is needed in PANDAS and this can be a long term thing. The important thing is to keep up the probiotics! I just want to encourage you not to give up hope. Sometimes it seems like a convoluted path as you begin to work through the issues, but it is worth continuing. Not everyone has the same triggers for tics, and so just because something has worked for someone else doesnt mean it will for you....but you will never know if you dont keep looking. And, from all you have posted, it sounds to me like a PANDAS case that needs a longer antibiotic treatment I hope Ronna will be by again soon, and I know Alison pops in frequently....they just know so much more about PANDAS, Just keep taking it one step at a time. And do remember, you havent lost your little boy....he is just going through something hard....but he is still the precious son you love so much and that is what is most important. ((((SUNSHINE & SON))))

HiYa Carole...how good to see you here again Hope things are going well your end thanks for posting that info

The other thing I wanted to ask about is something you call Threelac. We have Trilac. It is a probiotic that doctors prescribe together with antibiotics here in Poland (or Lakcid, or Lacidofil, but those two have only two types of "good" bacterias while Trilac has three). But some time ago I noticed that Trilac capsules, apart from 1600 million bacterias, have some additives, e.g. powdered milk and yest exctract (!). So am I to fight yeast with yeast?! Could any of you check it, please, with your Threelac. And is is the same? Our Trilac is made by Swedish company, Allergon AB. Here is a link to the ingredients in THREELAC http://www.candidasupport.org/ingredients.html#THREELAC If you consider ordering it, there is a company that ships to Europe inexpensively http://www.candida-yeast-problems.com/index-threelac.html I also have to order Sheila Rogers' book. I wish it was available in Poland. I wish I could translate it to Polish (I am a professional translator and have translated two books on medical issues; one of them was dr Atkin's book on his diet; but I work now for a company that publishes business books and I don't think they would be interested) I highly recommend Sheila's excellent book. http://www.latitudes.org/book.html You can also email her direct from the ACN website http://www.latitudes.org I also think about Taurine, and L-Carnitine, and Carnosine, but as Sydsmom said, one step at the time otherwise I will get lost again Agreed! Take it a step at a time, and whenever you have questions about the next step...there will always be someone here to try to assist based on our experiences.

hello Irene and a big WELCOME to you! Thank you so much for posting such encouragement for all of us. I hope things just keep getting better and better for your son. He is blessed to have a mom who has researched and found ways to help him. I just wanted to mention that the YEAST that is used in food ie Brewers and Bakers yeast is not a problem for most people. THE BAD YEAST that we talk about here is Candida albicans, which is a fungal parasite. It is NOT the yeast used in foods. It thrives on sugars and starches, and antibiotics cause it to flare. I hope you will keep us posted on your progress all the best to you and your son and family

Hi I havent heard of this as an actual therapy, but my son was given some great tips by a psychiatrist on how to "disguise" embarassing tics when in company, so I guess that may be a similar thing. The most important thing with any therapy like this tho is that you shouldnt feel pressured about it. If you feel you have to let a tic out and it is causing stress or tension to substitute for it, or hold it in or whatever, then it isnt good for you overall. But, as an example, when my son went thru a bout of coprolalia, it sure was helpful to him that the doc had given him some clever substitute sounds!! Do tell us more about exactly what Symptom Substitution involves............

so pleased to hear of the progress Alison!

Hi Melissa although my son was never on clonodine...the medications we tried ALL made things worse for him!! as far as doctors go...different people have varied views on which are best. I personally like a general Integrative doctor (conventionally trained as well as specialised in alternative/complementary medicine) It is important, whether you decide on an Integrative, naturopathic, environmental or DAN doctor, to FIRST ask if they have had any experience treating TS/tics. I am SO longing for the day when neurologists will realise that the prescription meds that they seem to continuously see as the only treatment option are frequently doing far more harm than good! Congrats on being a mom who has taken the trouble to educate yourself! Keep us posted on progress...

Yes! The antibiotics will have an impact on the results of the strep titres Carmon, this is the nature of TS...that tics wax and wane....ie they come and go and vary in intensity and frequency. When the statement is made that the tics should be present for a year (BOTH motor and vocal) for a TS diagnosis...it doesnt mean continuous, or necessarily the same tics....in fact, the waxing and waning is VERY symptomatic of TS as opposed to other tic disorders It will be interesting to hear of the results when they come in Carmon. Remember to take a deep breath and dont let all this get you too anxious and stressed out. I know it is hard to be "detached" in any way when we are worried about our kids....but especially if this is TS, the best gift you can give your child is to try to deal with it as calmly as possible and so that he doesnt feel that his tics are causing you stress....that will only make it harder for him. If this is TS, there are many things you can do to try to help him....but, most importantly is for you to reassure him that he is still your talented and precious child and that....in the words of one of a wise mom from BrainTalk..... "It's OK to tic!" http://brain.hastypastry.net/forums/showthread.php?t=75510

Hi Kim I will copy and paste this over to BT Sorry you cant get in there......if u have another email address I would suggest maybe re-register. You could also post your problem on the Feedback Forum there as that seems to often get quickest attention from admin

Hi Sunshine honestly, it is really hard to answer definitively on this. My son was on that homeopathic remedy for a number of months...with varying doseage and in combination with other things. In all truth, his tics probably had started before he even went on to it as he had eye blinking and rolling from around age 5. We just did not realise that they were tics--perhaps they were not-- as we were told by the eye doctor that it was related to his vision problems. However, we went to see an Integrative Pediatrician after we got him off the meds that had been prescribed by the neurologist when he got the TS diagnosis ( he had been on the meds for a year and with AWFUL side effects). She is also a licenced homeopath and when she was going thru his medical history she noticed that he had been on the Agaricus homeopathic remedy, and then commented that it was likely the trigger that "brought out" the fullblown TS. Now, this is not to say that he wouldnt have manifest TS eventually.......she just felt that the sudden onset of severe TS/OCD that he had displayed just after his 10th birthday was likely accentuated by the remedy. It was that experience that truly made me walk a very cautiously with ALL things, whether prescription meds or natural remedies. I asked detailed questions and did my own research before allowing my son to take anything else. In the case of your child Sunshine, the remedies bringing out the OCD and behaviour issues is not necessarily a bad thing. That may well be what they are supposed to have done and as long as this diminishes once he has been off the remedies and his behaviour stabilises, then they have done what they were meant to. If you feel that there is cause for concern, then you should get an opinion from an Integrative physician who is knowledgable about homeopathy to be sure that a "balancing" remedy isnt called for. Hope that helps.... PLEASE DONT PANIC ABOUT THIS!! I truly didnt mean to cause alarm for anyone using homeopathy and stress again that it is a very beneficial form of alternative treatment, and that it frequently works by getting worse before it gets better! I just want to urge everyone to ask questions before just accepting remedies, or supplements, or medications etc especially for children.