myrose

I am waiting for these replies as well Deanna.....

Forgive me for all my posts/questions lately....I am trying to be SO prepared to conquer this whole thing and understand the things that I just really could not wrap my brain around back then. My question is about the steroid burst or use people speak of. I know that it can be helpful in possibly diaganosing TS or Pandas. At least that is what I get from all my reading back in posts here. The steroid burst seems to be effective for Pandas but REALLY BAD for tourettes poeple (not sure where tic dis-orders falls here) But anyhow I know nothing of steroids....my daughter was prescribed Nasonex last year (do not use it anymore, barely touched it) for nasal congestion. What I can make of this Nasonex is that it is also a steroid??? Would it be the same type of steroid that people use for the burst??? Thanks everyone....

I have read over and over through a MILLION of old posts and it seems to me that people report mostly an increase in tics during the April, May and June time (it seems these months were mentioned most) I would guess this to be allergy induced tics. I question this because coming off from Topamax now and having the tics come back really bad could give me a good place to start in finding her true triggers (if any) (aside from MSG anyhow) Also thinking back to last year and going over some notes I had taken....it was Mothers Day weekend when it got SO BAD we resorted to Topamax. The only thing we never did was the allergy testing. This could be a good place for us to start?? The docs ordered x-rays for her constant nasal congestion during these months.....but nothing was swollen and it was left at that. (aside from script for Nasonex) we stopped using that though..... What do you all think? Are these 3 months (or somewhere inbetween them) the worst for tics when it comes to your children? Lastly, what is the best way to go about the allergy testing?

OOPS, yes I somehow did....must have been the late hour lastnight...sorry Here is the link I meant to post...... http://www.nutrition4health.org/nohanews/N...20Tourettes.htm

Must read for someone new....wish I read this when it all begin.....great info on what tests to start with etc.... mentiones ACN as well! http://www.nutrition4health.org/nohanews/NNS07Brownstein.htm

Still researching and preparing I guess.....4 days and counting I did not past the whole thing, the site was very interesting to me I posted the link at the bottom of the page....what do you all think??? One of the most feared and misunderstood elements essential for human health is iodine. Currently, iodine deficiency is epidemic. About 1.5 billion people or a third of earth's population lives in areas of iodine deficiency as defined by the World Health Organization. -------------------------------------------------------------------------------- Iodine has been known for a hundred years as essential for thyroid production, but it is rare to see any information about iodine's other effects. Iodine is found in each of the trillions of cells in the body and without it life would not be possible. Even though the highest concentration of iodine is in the thyroid gland, other areas of the body with high iodine concentration include the salivary glands, cerebrospinal fluid and the brain, breasts, ovaries, and the ciliary body in eyes. In addition to thyroid production, proper iodine levels are necessary for immune system function. Iodine contains potent antibacterial, antiparasitic, antiviral, and anticancer properties. Iodine also treats fibrocystic breasts and ovarian cysts. Iodine is essential for the proper growth and development of children. Iodine deficiency can result in mental deficiency, deafness, spontaneous abortion, and delayed physical as well as intellectual development. History Iodine was first used medically by Jean Francois Coindet (1774-1834) for the treatment of goiter (i.e., swelling of the thyroid). This was the first time a single element (iodine) was used to treat a specific illness (goiter), and is cited by some as the birth of western medicine. Jean-Baptist Boussingault (1802-1887) verified the work of Coindet and showed that goiter did not occur at many silver mining sites where there was iodine in the water. In 1829, Jean Lugol, a French physician, found an effective way to overcome the fact that iodine is not very soluble in water. He did this by using potassium iodide and came up with "Lugol's Iodine Solution." -------------------------------------------------------------------------------- Unfortunately, from the 1960s to the 80s, bromine—a toxic substance that has no therapeutic use in our bodies—replaced iodine in the commercial baking industry. -------------------------------------------------------------------------------- For many years refined iodized salt has been used to treat goiter. However, this iodized salt still leaves us with many diseases and symptoms of low iodine. Unfortunately, from the 1960s to the 80s, bromine—a toxic substance that has no therapeutic use in our bodies—replaced iodine in the commercial baking industry. Some NIH (National Institutes of Health) publications and researchers questioned the safety of iodine and suspected it could cause malfunctions in the thyroid gland. Why Iodine Levels Are So Low Iodine is quite rare in the earth's crust and ranks 62nd in abundance among the elements on earth. Seaweed is the primary natural source of iodine because seaweed concentrates iodine. Iodine is relatively abundant along the seashore, but inland areas—such as the US Midwest (known as the "Goiter Belt")—have very little iodine in the soil so all the food grown there is also low in iodine. With the introduction of iodized salt, it was assumed that iodine deficiency would go away. The NHANES (National Health and Nutrition Examination Survey) tests (1971-2000) showed that iodine levels in the US for all demographic categories dropped 50%. The percentage of pregnant women with low iodine levels increased 690% over this same time period. -------------------------------------------------------------------------------- Iodine is quite rare in the earth's crust and ranks 62nd in abundance among the elements on earth. . . . inland areas—such as the US Midwest (known as the "Goiter Belt")—have very little iodine in the soil so all the food grown there is also low in iodine. -------------------------------------------------------------------------------- The bioavailability of iodine from iodized salt is very low. Instead of the expected 17.2 g/l serum level, the serum level for the salt group was only 1.7 g/l by a 1969 test. Reasons for the widespread human deficiency in iodine include low salt diets as well as the low bioavailability of iodine from iodized salt. Other causes of iodine deficiency include diets that: (1) lack ocean fish or sea vegetables, (2) are too high in bakery products which contain bromine, and (3) are only vegan and vegetarian. Proper Measurement of Iodine Level—The Iodine Loading Test Even though the generally accepted measurement for iodine levels is by measuring the amount in the urine, this method is not reliable. A much more accurate method is the iodine loading test. It is based on the assumption that the more iodine deficient an individual is the more iodine their body will retain. Iodine binds to receptors in the body. If the person has enough iodine, a large percentage of ingested iodine will be excreted. However, in an iodine deficient person, much more of the iodine will be retained. The procedure is to take 50mg of an iodine/iodide combination. After twenty-four hours the urine is tested. In an iodine sufficient state, 90% of the iodine/iodide would be excreted (i.e. 45mg). Any levels below 90% excretion indicate an iodine deficient state. Different Forms of Iodine Iodide is an iodine atom with an additional electron that allows it to form a salt with potassium or sodium to form a full complement of electrons. It was originally thought the intestine could convert iodine to iodide, but research has shown this not to be true. Different tissues in the body respond to different forms of iodine. The thyroid gland mainly uses iodide, so to fight goiter, potassium iodide was added to table salt. -------------------------------------------------------------------------------- With different tissues responding to different forms of iodine, it should make sense to use both iodine and iodide for the greatest therapeutic benefit. One of the best iodine/iodide combinations is "Lugol's Solution," which is . . . currently available in tablet form as Iodoral®. -------------------------------------------------------------------------------- With different tissues responding to different forms of iodine, it should http://www.nutrition4health.org/nohanews/NNS07Brownstein.htm

Thanks for all the info. The only health food close is a place called Chamberlains... have you one of those by you? Also how much do you give and how many times per day? Is it recommended that adults/children take the same amount? Thanks for all the great info

So far after researching night and day I have decided to go with the nutriplex whole food vitamins. I will start with the Whole Food B-complex. Seems that the B's are really beneficial for tics, TS, and autism.... from what I have read on here and everywhere else anyhow. We only did the B12 back when it got real bad so now after comong off from Topamax we will try the complex and see what happens. Anyone ever used or heard anything negative about the nutriplex???? http://www.chetday.com/vitaminbdeficiencies.html

Being that some research findings suggest a central role for the involvement of autoimmunity in the pathogenesis of tic disorders. (These seem to suggest that infections may induce or reinforce tics) Given that....what does everyone think of the lastest Mercola report: Here it is: Naltrexone (generic name) has been an FDA approved drug for over 20 years. It’s a pharmacologically active opioid antagonist that is conventionally used to treat drug- and alcohol addiction, normally at doses of 50mg to 300mg. However, more recently, researchers have discovered that at very low dosages (3 to 4.5 mg), naltrexone has immunomodulating properties that may be able to successfully treat cancer malignancies, and a wide range of autoimmune diseases like rheumatoid arthritis, multiple sclerosis (MS), Parkinson’s, fibromyalgia, and Crohn’s disease, just to name a few. Added benefits include its low-cost, and few, if any, of the detrimental side effects you normally experience with pharmaceutical drugs. Treating Autoimmune Diseases With Low Dose Naltrexone (LDN) Recently I had the pleasure of interviewing Dr. Burton M. Berkson for my Inner Circle,expert interview series, in which he discussed the many uses for LDN, and the phenomenal results he’s been able to achieve in both cancer patients and those with autoimmune diseases. As is often the case with treatments that work but are inexpensive, very few physicians are aware of LDN. One major reason is just because there’s very little money in it, so none of the pharmaceutical giants back it. Therefore, there are no friendly sales reps visiting your doctor talking about the potential benefits of Naltrexone in very low doses. In addition to the conditions already mentioned, LDN is most commonly used for diseases such as: Hepatitis C Diabetic neuropathies Lupus Dermatomyositis (an inflammatory muscle disease) Ulcerative colitis Other autoimmune diseases Additionally, at least one physician, Dr. Jacquelyn McCandless, has even found LDN to have a positive effect on children with autism. According to Dr. Berkson, LDN seems to work the best for autoimmune diseases. But he has also published two studies on LDN for the treatment of cancer. The first, on the reversal of pancreatic cancer was published in 2006, and the other, on the reversal of B cell lymphomas, came out in 2007. Says Dr. Berkson, "It is difficult for many to believe that one drug can accomplish so many tasks. But LDN does not treat symptoms as most drugs do. It actually works way "upstream" to modulate the basic mechanisms that result in the disease state." Even with cancer patients, the survival rate is about 50 percent -- and they are the sickest; oftentimes coming to him for this treatment as a very last resort after everything else failed. How Does LDN Work? A growing body of research over the past 20 years indicates that your body’s secretion of endorphins (your internal, natural opioids) play an important, if not central, role in the workings of your immune system. A review article entitled Opioid Therapy for Chronic Pain, published in a 2003 issue of the New England Journal of Medicine, states: "Opioid-Induced Immune Modulation: .... Preclinical evidence indicates overwhelmingly that opioids alter the development, differentiation, and function of immune cells, and that both innate and adaptive systems are affected. Bone marrow progenitor cells, macrophages, natural killer cells, immature thymocytes and T cells, and B cells are all involved. The relatively recent identification of opioid-related receptors on immune cells makes it even more likely that opioids have direct effects on your immune system." Typically, LDN is taken at bedtime, which blocks your opioid receptors for a few hours in the middle of the night. It is believed to up-regulate vital elements of your immune system by increasing your body’s production of metenkephalin and endorphins (your natural opioids), hence improving your immune function. And, as for LDNs anti-cancer mechanism, Dr. Bernard Bihari – who discovered LDN as a therapeutic agent for AIDS in 1985 -- believes it is likely due to an increase in: the number and density of opiate receptors on the tumor cell membranes, making them more responsive to the growth-inhibiting effects of the already present levels of endorphins, which in turn induces apoptosis (cell death) in the cancer cells the absolute numbers of circulating cytotoxic T cells and natural killer cells, as well as killer cell activity Recent Clinical Studies on Safety and Benefits of LDN for Autoimmune Diseases In addition to Dr. Berkson’s own research, several other studies have been conducted on the benefits of LDN, and others are in the pipeline. For a more complete list of past and current research, please see the lowdosenaltrexone.org website, but here are a couple of highlights. LDN for Multiple Sclerosis – Dr. Maira Gironi, an Italian neurological researcher, treated 40 patients affected with Primary Progressive MS (PPMS) with LDN for six months, concluding that LDN was not only safe and well-tolerated, but halted the progression of the disease in all but one patient. The results from this pilot study were published in the journal Multiple Sclerosis in September 2008. LDN for Crohn’s Disease – The first clinical study of LDN published by a U.S. medical journal was Dr. Jill Smith’s article, Low-Dose Naltrexone Therapy Improves Active Crohn’s Disease, published in the American Journal of Gastroenterology in 2007. An impressive two-thirds of the patients in her pilot study went into remission, and 89 percent responded to LDN treatment to some degree. She concluded that “LDN therapy appears effective and safe in subjects with active Crohn’s disease.” Other studies currently underway in various parts of the world, include: A Phase II placebo-controlled clinical trial on the efficacy of LDN for children and adolescents with Crohn’s disease at Penn State. A clinical trial of LDN in HIV-infected citizens of Mali—the first scientific study of LDN for HIV/AIDS in Africa—implemented in October 2007. A study of LDN in the treatment of MS at the University of California, San Francisco, implemented in early 2007. A clinical trial of LDN in the treatment of fibromyalgia at Stanford Medical Center implemented in October 2007. A study by the MindBrain Consortium in Akron, Ohio of, especially, the affective changes in MS treated with LDN, begun late 2007. An animal research study at Penn State of naltrexone in a model of a disease that mimics MS. For more information about low-dose naltrexone, I recommend you check out the lowdosenaltrexone.org website. LDNers.org is another good resource. http://articles.mercola.com/sites/articles...e-Diseases.aspx

Yes its coming quick! I have a pit in my stomach everyday about it. It's been a year so I'll just keep praying that things (if they come back) stay mild as they were in the beginning before it all exploded. Keep me posted on the doctor appointment you mentioned.... I am going down to 15mg on June 4th.....this will be for a week and then stopping completely. Hopefully if things are going to get bad again I will catch a glimpse of this when on the 15mg. Maybe during this time we will realize that coming off right now may not be the best thing for her. Pray for us!

Yes 25mg. We started at 15mg and let the body adjust and then up to 25mg. Are things any better over there?

I am not sure what it means. The thing that stuck out to me was the central nervous system....... Maybe different people react differently to things...not sure But I was thinking of you when I saw it. I never take the word of the pharmacy or doctors alone...I always do my own research now and then make a decision based on what I read and what the doc /pharmacist says... Maybe its nothing, ,but hey you never know Melanie. I hope things are settling down for you and him. This thing really does STINK in the worst way. My daughter is on topamax (coming off in June) scared to death of this but we need to know where she is at and exactly what the topamax is doing for her. I never give her anything else with it...just a good green foods vitamin every other day.....I am too scared to mix anything else in there. I guess one person can react to something and another one may not so I just take no chances. I even have to watch when we give the die free benedrly. We only do it once in awhile when absoulutley nessesary! My brother told me of a possiblr interaction with that as well but it was mainly in concerns to body temp while on topamax...but at an adult dose, but I still watch her like a hawk! Please update with any changes and also on the EEG to come.

I have heard that a B-complex may be hard on the tummy? Is this true? If so is there a B-complex that is gentle and been mentioned on here? I had a hard time at the bee alive site....not sure what you are speaking of...there are SO many things on there and I can not find the ingredients of any of the products??? Maybe its just me.....I will have to look again later after I re-group....my eyes hurt today

Wow...this would have put me on the floor! I would have passed out as well. Just wanted to mention that the reason our doc suggested the EEG's int he beginning was to rule out seizure activity. The seizures in question were called myclonic jerks...they resemble tics as well. Goodluck and I hope he sure does not want to pull that trick again! Is holding your breath like that condered a tic of some kind??? Just curious

Melanie, The part here about the central nervouse system worries me. I had no idea your son was also on Buspar This may be of interst to you....... Why don;t you stick with just one at a time to see which one benefits him the most. There could be a drug interaction going on... See below: topamax and Buspar Interactions BackYou searched for interactions between: topamax (topiramate) Buspar (busPIRone) Interaction(s) found: busPIRone and topiramate (Moderate Drug-Drug) MONITOR: Central nervous system- and/or respiratory-depressant effects may be additively or synergistically increased in patients taking multiple drugs that cause these effects, especially in elderly or debilitated patients. MANAGEMENT: During concomitant use of these drugs, patients should be monitored for potentially excessive or prolonged CNS and respiratory depression. Ambulatory patients should be counseled to avoid hazardous activities requiring complete mental alertness and motor coordination until they know how these agents affect them, and to notify their physician if they experience excessive or prolonged CNS effects that interfere with their normal activities.

Just wondering if after all this time and all your research if by any chance you have concluded a difference in the signs of pandas and tic disorders or I guess TS?? Wishful thinking I am guessing but I will always check...... I know in Pandas you have what you call episodes,,,but with tics you have wax and wane......so this again is confusing to me. One last thing....do Pandas have tics daily like a tic-disorder or only when having or should I say during an episode?

OKay where can you get some? Publix any chance? Also what does it taste like and what is it....a creamy sauce or something?? Never heard of it LOL What can you mix it in if it tastes really bad..... Lastly, can one benefit from it with just using it alone and no other supplements etc.... Will it interfere with other things like supplements???

Can you tell me where you get the B5? and what brand? Some are 250mg and some are 500mg so a 1/2 dose for a child could be either one of those. See where I am getting at? She is almost 7 and about 48 pounds now. Also where do you get the royal jelly? Are you speaking of the supplement? Thanks Cheri

Unfortunately Chlorine is a BIG trigger for some people. One way to help or to maybe see if its the chlorine is shower him immediately after swimming and then get some magnesium cream and rub it all over. It would probably benefit him more with a good soak in epsoms salts immediately after getting out of the pool, but I know this is not sometimes something we can all do. So now I am thinking (maybe others can comment) if rubbing him down with magnesium cream BEFORE he hits the pool and then afterwards immediately washing him and applying more cream??? (Not sure if the cream will absorb quickly or just get washed off) Even a slight decrease in tics after doing this a few times could possibly help you identify that Chlorine is a true tic trigger for him. Lastly, how about a little mag. before the pool?

Just a suggestion......I put a hepa filter in my daughters room. It ran about $25-35 at Walmart. I keep her room closed with it on high during the day and at night I place it on the low setting so we do not have to listen to the noise. I also have some of the ionic filters all through the house (not hepa) you would not believe the junk I clean off the blades every week! And I am one of those clean freaks LOL Maybe just some nice clean purfied air at night while they sleep could help....This is just a suggestion if its attributed to the new remodel. Last year when my daughter was at her worse it was right after our carpet cleaners came. It was Sears and they promised green friendly cleaners but the smell was overwhelming so I wonder what it really was. I started to wash my own carpets after that and eventually just replaced them with wood floors. Anyhow after the carpet cleaning is when I added the hepa filter in her room and always kept the door shut with windows (in the other rooms) open until the carpets were fully dry. I hope you find the triggers soon...its almost like trying to put together the BIGGEST puzzle of your life. Just when you think you found a piece....another one seems to fit as well!!!!!!!!!! Its definitely sometimes a difficult and emotional road for some but it seems for most in the end it was all worth it! Being that it started right around the time of the remodel you may be ahead of the game....could be chemical sensitivity???

Just a suggestion......I put a hepa filter in my daughters room. It ran about $25-35 at Walmart. I keep her room closed with it on high during the day and at night I place it on the low setting so we do not have to listen to the noise. I also have some of the ionic filters all through the house (not hepa) you would not believe the junk I clean off the blades every week! And I am one of those clean freaks LOL Maybe just some nice clean purfied air at night while they sleep could help....This is just a suggestion if its attributed to the new remodel. Last year when my daughter was at her worse it was right after our carpet cleaners came. It was Sears and they promised green friendly cleaners but the smell was overwhelming so I wonder what it really was. I started to wash my own carpets after that and eventually just replaced them with wood floors. Anyhow after the carpet cleaning is when I added the hepa filter in her room and always kept the door shut with windows (in the other rooms) open until the carpets were fully dry. I hope you find the triggers soon...its almost like trying to put together the BIGGEST puzzle of your life. Just when you think you found a piece....another one seems to fit as well!!!!!!!!!! Its definitely sometimes a difficult and emotional road for some but it seems for most in the end it was all worth it! Being that it started right around the time of the remodel you may be ahead of the game....could be chemical sensitivity???

Melanie, Its good that you and your husband get out together. You need that. How about sometimes you get one of those Pizza's that Pizza Hut sells (all natural, organic ingredients) and have it at home with him. Do you guys ever play family games? Just thinking of something to make him happy and forget about his condition for a bit. It may help him be calm and feel normal. Does he have a close friend that can come over and hang out, despite his condition. What about one of those BIG BROTHERS organization. Maybe it help him feel better thus having a positive effect on his tics. Its so very sad to me to read your posts. I am not sure about the abilify you mention...everyone has different reactions to different things. I do bet though it was probably a high dose. Have you tried the benedryl before at all? If it works maybe you can give him some of this so he can get out and be a kid. If he is or does go into a depression I am afraid it will make all matters even worse. Does he take Magnesium? Does he have acccess to the internet?? He could find a site about tourettes and maybe talk to some of those people who also have his same symptoms. Sometimes knowing you are not alone is a great comfort in itself. I am sure he can meet a good friend on line who is going through the same thing as he is. There is also a Tourettes Camp I have seen on one of the shows like CNN or something. Not sure where it is or where you are but maybe a vacation away from it all and being around people just like him will help him cope better. I would surely do these things for my daughter and look into them if the time comes when we need it. Have you ever found a trigger for him? When did he start tics? Were they always vocal and motor?

Melanie, I have been thinking about you....how are things? Have things got a little better at all?

I can't answer your question (sorry) but I did want to say that my daughter for some reason had a negative reaction to Vitamin C and it seems to help others??? Maybe it was the form?? The reaction was after we installed a new and cheaper shower filter replacement cartridge.....it contained Vitamin C. Strangely this was no good for her and we immediately went back to the old one. I never had a chance to investigate it all and it slipped my mind until just now. I know it was the shower filter because I logged everything and I mean everything!!!!!!!!! right down to toilet paper when we made some kind of change. I hope things get better for you...have you tried Benedrly (die free) just for a relief while you look into other options? It works for some on here.....its easier to get to the trigger when you are relaxed and have a clear calm mind and body... I wish you no neck tics soon..... Also if its an allergy maybe Benedryl can help you determine that??? Just a thought and please keep in mind I know nothing of your history...just trying to help if I can

OH I SOOOOOOOOOOOOOOO wanted to go to this! I just cannot! Its impossible for me right now. Can someone put a suggestion in to whoever it needs to be made to and have them video it and sell it afterwards?? I will buy for sure......Cheri....what do you think? Can you sway anyone here or put the bug in the right ears. I am sure everyone would go if they could, so I am sure everyone would buy.