Chemar

hi Calicat yes, taurine had a very positive effect on my son very quickly too when we first started to use it you very well may get a better impact spreading it into 2 1/2 doses so always worth a try. Do you give it with the magnesium? we were told to and I know Bonnie actually has magnesium taurate as a single supplement becasue the two work so well together. Cardiovascular Research brand of magnesium taurate is also available from The Vitamin Shoppe stores or online

my son has been avoiding anything with carrageenan in it since he read reports of its suspected role in the explosion of IBD. Dr Weil weighed in on it in his newsletter today and so I felt maybe important to note it here too. http://www.drweil.com/drw/u/id/TIP02608 I honestly dont know if it has a direct effect on tics, but as we all have learned the hard way, if it is bad for the gut it is BAD

annag if you read just above your and my last posts you will see pesosmom gave an update today on how well her child is doing now on the supplements and good diet

what wonderful news pesosmom thank you so much for the feedback, and I am so glad that you too have found such good results from what many of us have found to be beneficial in reducing tics. all the best Cheri

yes, well put Alison....strep is contagious, PANDAS is not. However, in families that already have one child with PANDAS dx, one should be aware that more than one child may have the genetic predisposition for PANDAS. Also important to note that some people can be strep carriers without ever manifesting strep symptoms

hi Tourette Syndrome is considered by some to be on what is known as the Autism Spectrum Disorders (ASD) Personally, I am very cautious about anything that claims to be a "cure" for Tourette Syndrome, or for autism. I am not saying that for some people who have been given these dx and then show a complete remission of symptoms is impossible. Just saying be very careful at anything that claims to be THE cure. As complex as these conditions are, so I believe are there treatments. All part of a larger picture. Also, this site alone has tons of info on alternative treatments, and our administrator has literally "written the book on it" http://www.latitudes.org/book.html my son sure is living proof that alternative treatments for TS can vastly improve things, even for someone with genetic TS. But I think we are still a ways off from finding the "cure" for genetic TS...it will come...but I would still urge caution for claims of "cure" edited to add: I know of quite a number of people who have TS as well as autism or Aspergers, so I know the two can be co-conditions

Hi annag and welcome I think many of us can identify with your frustration there are a number of things that can cause childhood tics and as you dont know for sure what is the root of your child's tics, medication may really not be the way to go. whether with children who have genetically inherited Tourette Syndrome (TS) or whose children have tics from strep (PANDAS) or from many other things that have been found to trigger tics, anyway most of us can say that increasing magnesium, adding other supplements specifically needed and cleaning out artificial additives from diet goes a long way to a healthier child and less tics. my best advice to you is to start reading slowly thru topics here and ask as many questions as you need to. also do remember that with many kids, childhood tics are not unusual, and in many cases they do just go away on their own. I would highly recommend a good chiropractor too to help reallign the parts that the tics are putting out. this will help so much with the discomfort. even something like an evening epsom salts bath (magnesium sulfate powder) with 2 cups magnesium in a tub of warm water, 20 min soak, can have a very calming effect on tics and ease the aches and pains they can cause, while promoting a good sleep. I have a link in my signature as to what we did to help my son's tics. we did try meds for a year with disastrous results. After focussing on nutrition, and alternative therapies like acupuncture and also regular chiropracty, we have seen remarkable improvement, maintaining for many years now Cheri

hi help4matt my son has genetic Tourette Syndrome, and I can most certainly say that dietary changes have helped. In his case, even tho there are no actual food allergies other than extreme sensitivity to artificial food additives. By cleaning up his diet of all those additives, and supplementing with specifically what he needed, he went from having severe and debilitating tics to now having very mild tics. so yes, the doctor you quote is correct in saying that IF your child has actual TS then waxing and waning is often part of life..........however, where I would strongly disagree with him is the blanket statement that there is no improvement with dietary modification........it may not *cure* TS, and yes waxing and waning may well continue, but it sure made a dramatic difference in the frequency, intensity and duration of the waxing periods for my son, and, many here can attest, the same is true for other TS dx people too when my son has compromised on his diet, or neglected his supps, his tics have become elevated. When he watches what he eats and takes his supps, things settle again. Yes he tics, and the tics wax and wane, but it is nothing at all like what it was before nutrition became the key factor in healthcare for him.

it definitely sounds like an allergic reaction and I would leave an *urgent* message for your doctor to contact you asap. hopefully the neuro will have some input I am allergic to penicillin and I had severe hives, itching and swelling from it, also shortness of breath etc.

oh great that you found at least that Laurie! I had a thread running here a few years ago linking to FJ's detailed pyroluria thread on BT and I know it helped so many people. good to have that copied post you linked, so thank you very much

Hi yes, we were also told to stop supps one week before the pyroluria testing and yes, sadly all FJ's very informed and detailed posts on pyroluria and specifically tics resulting from it, were lost in the braintalk crash along with tons of other valuable info . It's a hollow shell of its old self which is why I have given all my health forum energy here and at NeuroTalk since ..... I am trying to remember which lab did our testing , it's so long ago now, and it was done thru our integrative doctor's office, but I know it wasnt Brightspot

Hi Juls if he has a TS diagnosis then this doesnt surprise me. Apart from in the very beginning when my son's tics first manifest, and also during the year he was on those meds, for the rest his tics, tho waxing and waning characteristically, have always been pretty much head neck arm tics and a group of vocals. even when he is in seasonal or lunar waxing, or is triggered by something, it always seems to be the recognisable tics that appear. However, during that year on the meds I saw tics manifest in him that were very very different

honestly, I dont see why one should pay so much for probiotics. Kefir and natural yoghurt packs a powerful probiotic punch for a very low cost and if a higher probiotic count is needed, most health stores stock good probiotics that dont bite the budget.

Hi airbucket Dr Murphy tests, dx and treats PANDAS, in addition to also dx and treating TS and other pediatric neurological and psychiatric disorders The blood for PANDAS evaluation is drawn there at Shands and tested there too and the results are then analysed and one goes for the follow up to discuss them and the recommended treatments Tanya Murphy is one of the most knowledgable people around re PANDAS, OCD, tics and TS She is also one of the nicest doctors I have ever met....very caring, and willing to give TIME to patients. She is also very open minded and informed re alternatives even tho she is a conventional doc The Shands Clinic is associated with the University of Florida, Gainesville here is more on Dr Murphy http://mdc.mbi.ufl.edu/murphy.htm http://www.psychiatry.ufl.edu/people/bios/murphy.htm

also take a look at the Latitudes/ACN advisory board doctors http://www.latitudes.org/brd_mem.html

((((((Giselle)))))) and all members in California i do hope and pray your families and your homes are not in the fire zones and that you are safe Cheri

hi airbucket most DAN docs are open to alternative treatments Dr Robbins is an environmental doc and comes highly recommended...carolyn_lsc has personal info there re Dr Murphy do remember she is an open minded conventional doc who specializes in PANDAS and so is good to see if you want to do testing for PANDAS, but her protocol for TS is not alternative. she doesnt push meds but does offer them Our physician is no longer here, and sadly I can no longer feel comfortable recommending the other Doc we saw here, after her total misdx of my son's Crohn's ...not on the ball anymore and too much into "trendy" tests etc hopefully others will have input...dont know if Andy still reads but he is in south FL too

Hi Laurie as we have to keep my son's acid low because of the Crohn's , I cant help on this, but I do recall a discussion here a while back on this so maybe a search on betaine HCl will bring that up for you

Carolyn there is also a wealth of GFCF info at NT, where Cara who maintains the Gluten File etc is also a member http://neurotalk.psychcentral.com/forumdisplay.php?f=13

You are welcome, Carolyn. I wish i could respond more but time restraints re work and other committments do make it hard. thankfully we have such a great core group of members who are so willing to share their experience and knowledge. You are all much appreciated!

welcome Sunflower if you follow the link in my signature you will see what worked for my son I am not aware of any "bad" magnesium taurate....and magnesium does seem to be the one supp that all with TS benefit. Some like it in the taurate form while others use it in citrate or lactate or glycinate and take taurine separately. The only magnesium that is pretty useless re low absorption rate is magnesium oxide

thanks Kim yes, I agree that a good thing like grapeseed extract is not likely to have caused my son's Crohn's Disease but I do feel that at the time when his crohn's was misdiagnosed, the continued immuno boosters like the grapeseed extract/pycnogenol blend he was on, coupled with the omega 6&9 supps, were aggravating the autoimmune/inflammatory reactions however, for those who dont have those issues, these are two really good supplements

the problem I have with that sitre you linked to is there are no credientials ot anything like that and so this is someones OPINION I have not noticed any negative skin reactions to epsom salts...in fact quite the opposite, nor to our balanced calcium:magnesium:zinc supplement I would think that the key here is moderation and doseage as to the neighbor, if they are on prilosec, which is usually given to reduce stomach acid, then they should be careful of adding any supplements without discussing with their doctor

Hi Becky sorry to hear you are dealing with a major flare up yes, if your child has TS, then waxing and waning are a characteristic pattern, yet as we and many others have found, the intensity and the frequency and duration of waxing phases can be very much helped by correct diet, relevant supplements and elimination of known tic triggers honestly Becky, even after all these years, we still see a dramatic upswing in my sons tics and OCD if we "slack" on supps or diet From what you have described, the sups were clearly helping as was elimination of dairy. Once the system becomes tuned to getting needed supps and no longer getting allergens and or chemical additives, then exposure to the offending foods, or neglect to take the helpful supps, can often cause a marked upswing in tics/ocd etc....almost an over-reaction. Sounds to me like that has happened with you child....... It may take a while to stabilize things again, but the best you can do is start over again with what helped last time and then gradually add anything else that seems indicated. and yup, ditch the Fruit Loops.....sugared nasty chemicals is what they are!!

emma sometimes with PANDAS, long term antibiotics combined with a specifically designed supplement protocol are needed. My reference on the other thread to the grapeseed extract was based on what we were advised re my son's Crohns Disease, which is also autimmune. As I havent personally dealt with having a PANDAS child, I dont know what the doc's advise there, but would think it is the same overall approach to modulate rather than stimulate the immune system