Chemar

Hi taurate is the chelated form of the amino acid taurine. If you think you may be sensitive to taurine, then you can use other forms of magnesium (we like the Natural Calm ionic form of mag citrate) Taurine does not usually increase anxiety, but there are some people who do not react well to it. You might also have been reacting to the potassium in that supplement, but usually anxiety is associated with low potassium. Vit K is also generally though of as an anxiety calmer are there any "other ingredients" in that supplement you took?

Honestly, any suggestions I may have on what supplements we have found helpful, may not be of use to you because of the differences between PANDAS and TS. You really need to speak to the doctor who dx the PANDAS and rx the steroids. All I can say is that for my son, magnesium has always helped his tics (taking a supplement as well as the Epsom Baths) If your child is not eating healthy foods, then it is important to provide nutritional supplements too.

bumping up so others can see this post from a new member Welcome to the forum Isad765

so are you saying there is no clear diagnosis of PANDAS??? I am confused! I thought he was definitely diagnosed with PANDAS? Was the doctor who prescribed the steroid the same doctor who said he had PANDAS?

Strep swab alone is no indicator clear of PANDAS tho Bonnie. I am not sure if the Cunningham test is being offered routinely now? but a while back the PANDAS community seemed to feel it was a very reliable indicator of possible PANDAS, so opening the door for further testing and treatment. Has he ever had strep? tic bite? other persistent viral infections that you are aware of? Remember too that infection stuff is not the only other potential trigger for tics. You have been here a while so likely remember how many different folks have passed though and found so many assorted triggers for their kids tics...but when they addressed the problem, the tics resolved. It can also be TS that is being exacerbated by a specific trigger....I don't remember your possible family history of TS?

with no TS history and a PANDAS dx , hopefully you will start seeing the improvement soon! I know for some PANDAS kids, the steroids have been so beneficial, so I do hope the same for your child. So much is misdiagnosed TS that honestly, scientific or not, to me the genetic link is a very relevant factor when there is confusion over the dx. JMHO

Hi Bonnie with all the many anecdotal reports here about orthodontics increasing tics, that may well be the problem. Are his teeth so badly aligned that these braces are an essential? or is it more cosmetic? We declined braces for my son when he was younger for this very reason and his teeth grew out just fine. Honestly, if you are seeing not even a slight benefit from magnesium, then I would wonder whether your son's tics are really TS. As he ticced before the braces, those alone can't be the root cause, tho yes, it does seem they are being a trigge. Did you ever investigate that possible infection connection re PANDAS/PITAND stuff?

thanks croatian mom I try to help wherever I can, but as you are discovering, there are so many variables with tics that one can never be sure what may help or not! If you feel sure the PANDAS dx is accurate (I assume they did all the testing possible etc and Dr K saw your child in person?), then it seems you should likely follow what the PANDAS doc said to do. Have you discussed this on the PANDAS forum too? The parents there have so much experience with steroid bursts. My only concern about the ongoing steroid use is *if* there is also TS present. Is there a history of TS or tics in your family? Sorry if you already posted that in another thread and I may have missed it.

PANDAS and TS are not mutually exclusive...ie a child who already has genetic TS could also have PANDAS. But that does make treatment with steroids problematic. If your child is not TS but PANDAS then there is the distinct possibility that the steroids are doing exactly what they are supposed to do, and that things are going through the 'worse before better" phase. It seems to me it would be best to talk to the doctor who prescribed the steroids and see what they say.

Croatian mom...I guess the main question here should be whether or not your child has PANDAS? or TS? or both ? or is it still an unknown diagnosis?? The actual diagnosis really does make a difference in the benefit or adverse effect of steroids!

Did the doctor know that your son had a possible TS diagnosis before prescribing the prednisone? Our doctors warned us NEVER to use it in a TS patient due to it increasing dopamine and therefore potentially increasing tics. Even my son's GI specialist knew not to even try any steroids for his Crohn's disease due to the potential for tic exacerbation due to his TS And yes, I do know someone who had prednisone as a steroid burst due to a back injury and had a major tic explosion. This person was in their 60s, with TS since childhood, but had stopped ticcing decades before. The prednisone triggered a tic waxing and the tics have remained, waxing and waning as in childhood. They had the burst some years ago. It also affected their cognitive functioning. We have other anecdotal reports about steroids increasing tics, and if you do a Google search, you will find studies that link it to the dopamine increase.

Hi TS Mommy I just wanted to welcome you and say how I feel for all your precious child has been through! It's good you may be speaking directly with Sheila. I would honestly wonder if the tics are a result of the chemo and or Leukemia onslaught on his system, rather than actual TS (but I am not a doctor so this is just my wondering) When the immune system is disrupted, things can manifest. All this is stuff that Sheila knows a lot more about, so I do hope you will contact her, and also find a good naturopathic, preferably Integrative, doctor in your area. hoping for your little one to get much better.

Hi we have a portable reverse osmosis unit, under the sink and connected to a separate faucet. The whole house softener can be very pricey I think tho I don't know much about it. Not sure what is actually in the salts/chemicals that they use?? We just have the filters on the bathroom faucets to remove chlorine etc

Kevin, I am really not wanting to go back and forth as you are fully entitled to your view, as I am to mine.....but did you happen to notice that some of the studies related to androgens possibly increasing tics are by some of the same authors you have quoted? So even there, results and hypotheses vary over time. Remember too that my son was first diagnosed 13 years ago, so yes, much has changed since we started this journey....but I can only state again that if I were to have accepted everything that some of the doctors and "scientific" researchers have claimed over the years, rather than also investigate much of the anecdotal info documented by patients and caregivers, I would never have been able to help my son the way I have. The number of times I was told by physicians that there was no such thing as "triggers" for TS tics, and that diet/nutrition made no difference to tics, and that food and environmental allergies had not effect on tics etc etc etc..........and all cited the lack of so-called "scientific" evidence..... Also as I have said over and over, I am not an expert or professional, and post only from what my experience or gleaned info is, and I also try to never make emphatic statements, but usually add may, perhaps, imo, imho etc. We tend to chat here and try not to get upset with each other, realizing that we are all just trying to learn, share and support one another. So even if we disagree, it is not a personal thing...just people expressing their opinions and sharing their experiences.Your response response to me and to Chris seemed to suggest some level of upset? No-one "shunned or mocked" you? at least that I can see?? So I do hope you understand that no one is trying to negate your opinions by posting about their own. Anyway, of course your opinions are as welcome here as any others. I would just suggest that perhaps, as this is now taking this topic (about tics and restless leg syndrome) a bit off course, maybe start a new thread on any topics you would like to discuss I do also need to ask if you would mind editing those quotes above that you posted in their entirety in case that is copyright violation and so the authors/publications may get upset at them being posted here that way, including without any quote tags. Usually, the best way to refer to an article or quote from another website, and not risk infringing their copyright is to give the title, authors and place of publication and then just either a snip or the abstract in quote tags...then the link so others can read further. You can usually see if something has copyright by looking at the bottom of the page...if it says anything like "All Rights Reserved" or © or Copyright etc then one has to be very careful

Kevin...just as an FYI there are studies that do suggest androgens may be associated with increased TS tics...again just Google androgens and tourette tics. And again, this was something our reputable physicians discussed with us, as part of the discussion on why so many more males than females manifest TS and also why the pre- and pubertal years seem to be associated with a higher incidence of tics, and also why it seems the tics subside when those "hormonal years" are over As with everything related to TS, there is much that is still not really known "scientifically" and the research of some shows one thing while that of others shows another. Many variables and methods that often "muddy the water"...again why actual experience seems a very valuable parameter...yet also with the understanding that we stress here all the time...different people have different experiences and about the only thing we can all agree on is that people with TS tic! When we discuss things here, none of us is claiming to know everything....... nor to be an "expert"....so as you read here, you would be best served to see all commentary as anecdotal discussion based on what we have experienced or learned over the years. We are just patients and parents discussing things with each other. That is the purpose of this forum.

As I mentioned before, our experienced physicians (both neurological and GI specialists) told us to avoid ALL steroids Kevin, because they are dopaminergic and so have the potential to increase tics. Period. I am not talking about puberty or androgens here. Just steroids, dopamine and tics. Truth be told, if we had followed the "scientific" and "official" stuff...my son would have been in a far worse place! It was coming here, finding tons of very relevant "anecdotal" evidence and thankfully having physicians who think outside the textbook that gave my son his life back. As someone with a Physiology background, and years of medical research experience, I can tell you honestly that I know how skewed "scientific" can be. Give me "anecdotal" any day as those are people living with the illness and relating directly what they experience. If you are only looking for "scientific" and "conventional" info...then this may not be the right forum for you as the focus here is on alternative/complimentary treatments and anecdotal reports rank high! wishing you all the best as you seek answers for your child

Hi again..... I have documented my son's journey in the link in my signature. He is now 23yo and his TS has become negligible in overall health. But his improvement began back during those ":peak" years, which I attribute directly to the nutritional/environmental changes we implemented. That did not "cure" his TS....but it definitely made what was a very severe case much milder. I do think that as he has passed out of the "hormonal" teen years, so things have also stabilized. yes he still has TS and yes, he still has some tics, but most people would never notice them or know as it really is so mild now.

Hi Kevin no it is not just anecdotal about steroids increasing dopamine, and not only have we been told that by numerous healthcare professionals, but if you enter the term steroids increase dopamine in a Google search, you will find numerous research papers on the subject, including from NIMH Additionally....the anecdotal evidence itself is pretty clear on the subject, including our own personal experience, for what it is worth.................

My son never used it alone, but it has always been a component of his multi. No noted effect, especially as it is in trace amounts

The manifestation of waxing and waning is as variable as the manifestation of tics! For example, when my son was younger, waxing and waning simply meant a change in the frequency and severity in the tics...but he still ticced to a greater or lesser degree every day. Now, as a young adult, his tics are minimal and he will go through long periods in waning mode, then something may trigger waxing tics for a bit. But there may still be occasional tics even when in waning...so again very relative. When a child goes through long periods of no tics at all and then they suddenly start up again....I would strongly consider investigating something other than TS as the possible cause for the tics eg PANDAS/PANS, food or environmental allergies, toxin exposure, etc

Two sons, only one who has TS/tics, dx when he was 10. Their father has TS, as did his father...so it is genetic. But only my youngest seems to have manifest, as the oldest, at 26yo, is long past the time for it to show. He is 3 years older that the one who has TS

Hi there so sorry to hear of your struggles. I am not a doctor but I don't think what you are describing is just OCD...to me it sounds more like PTSD (Post Traumatic Shock Disorder) which is sadly quite prevalent in victims of childhood sexual abuse (as well as other traumas in childhood and as adults) The best treatment there is talk therapy, with a qualified psychologist who has experience with PTSD and other sexual abuse issues. May I suggest you check out http://www.psychcentral.com as there is a lot of helpful info there. If you click COMMUNITY there at the top right of the page, it will take you to their mental health support groups and there is a section specifically for abuse survivors as well as one for PTSD. There is also a section where you can post questions for the resident psychologist. Hope that helps a bit and please do consider starting therapy as sometimes just being able to talk through these things with someone who is qualified to help can make a world of difference!

Spartan....PLEASE be very very cautious about using anything that is a steroid if you have TS! Steroids can trigger tics in people with TS due to their effect of increasing dopamine. This may not be the case for you but if you look back on some other threads here you will find that many parents have reported a major ramping up of tics when their kids used those steroid inhalers!!

there are also some good reports about those nasal gels that are supposed to help lessen the allergens that get through the nose, as well as combat the allergy symptoms as well.

Hi Jon this really sounds like something you should return to a physician about! From your description, this does not sound to me like just a tic. It almost sounds more like some kind of seizure or something like that, but I am not a doctor so I am just speculating from what you described.