Chemar

Hi just wanted to mention that where Nature Made does not have anything particularly bad in it...it is magnesium oxide which is pretty useless as it is very poorly absorbed. Much better to get a different kind of magnesium and avoid any of the mag oxides (most companies use it as it is cheap to make...but the amount absorbed is far inferior to other types of magnesium If I can give you a bit of advice that I wish I had heeded when my son first manifest his tics many years ago.....try to stay as calm as possible and take it a day at a time. Tension in mom translates to tension in child = stress=more tics! One of the things always mentioned is that the more one draws attention to the tics, the more the person will likely tic. As hard as it is, you need to try not to let your son see that you are stressed or continuously focused on his tics. If he does have TS, there will be waxing and waning, and that is just a fact. Finding what the things are that may be triggers can help enormously to reduce the frequency and intensity of waxing phases...... but people with TS tic. You will drive yourself nuts if you keep blaming yourself every time he may have an increase in tics! It is not your fault. It helps to keep a journal and when you read through it, you'll be amazed at how you start being able to identify tic triggers! But try to do this in a way that does not make your son feel his tics are in some way the cause of distress for his mom. Hoping you find a good doctor who can guide you through all this.

you can still give the supplement as well as the epsom bath for TS at least 300 mg magnesium is suggested daily for kids.

Quick reply as I am at work....magnesium is best at night as it can also promote restful sleep. Consider also doing the magnesium sulfate=Epsom salts baths in the evening as that both relaxes and calms tics before bed. If magnesium is helping and there seems to be a family history of tics....TS may well be the dx imo...the strep may have triggered things, but that does not necessarily mean PANDAS resulted....may just have caused the TS to manifest....jmho

Hi twinklestar and welcome I am on my way to work so will post a bit more later...but would suggest you read our Helpful Threads pinned to the top of this forum (I also have a link in my signature below) as that will be a good place to start learning more. Also highly recommend Sheila's book (also linked in that thread)

Hi MMMommy I just want to mention that if 2 doctors ...one considered a PANDAS expert, have told you it is not likely PANDAS, then I am not sure why you would want to try antibiotics as suggested in the post above? But that of course is between you and your physicians to decide., especially with the past history of strep and whatever that Lyme test showed. Please also be very cautious if anyone suggests steroids, as those can make things worse in people with TS, and I have also heard they are contraindicated for Lyme. In terms of investigating other potential triggers for the tics, I would look for an Integrative or Environmental doctor (MD or DO) as they are usually more clued up on things The fact that your husband has tics and that light switch 5 times thing sounds a bit OCD....perhaps you are seeing genetic TS? If you do get a TS diagnosis, the school is legally bound to accommodate his tics and any other manifestations, as TS is covered under the ADA for education. We found having a 504-plan very helpful for my son There is a very good website that discusses all things related to TS http://www.tourettesyndrome.net (though they are not very clued up on PANS related tics imo) Do be sure to read the "Helpful Threads" pinned to the top of this forum...I also have a link to them in my signature below...as you may get some good pointers there too. I hope you manage to find a good doctor to guide you, and get some clear answers as to what is causing your son's tics, so that you can begin correct treatment strategies.

Welcome to the forum frikfrak I am just bumping your introductory post up so other members can respond. I see you also posted to some existing threads so hope you will get answers there too. all the best and hope things get better for your son.

I had never heard of it before...not sure why it would have specific benefits for TS? It's good to have fruits and veggies but not everyone can handle all of them, and especially not in such concentrate form! Your child may be sensitive to one or more of the ingedients. Personally I would not go near anything with maltodextrin in it....it is an artificially produced sweetener and imo not a very healthy substance.

Hi I have only ever heard of hair testing to measure existing leavels of nutrients or toxins etc....but have not heard of doing it to test for potential allergies or reactivity? Maybe that is a newer development. When we had it done over a decade ago, it was pretty accurate compared with the blood tests we also ran in determining levels of heavy metal toxicity as well as nutrients etc. We had sensitivity/allergy testing done via radiogenics, which again was rather amazingly accurate when compared with later blood tests.

yes it can be either environmental and/or food allergies as well as other possible triggers I knew of someone whose child had tics increase whenever she used those dreadful carpet shampoos and in between...hardly anything! Same with pesticides, and other chemicals that are periodically used....and of course there is the summer flare which is possibly related to swimming more in *chorine* water............. So you really may benfit from also keeping a journal to see if you can correlate the periods of increase with anything that is maybe not around when the calm periods happen.

Hi Some tics can be intense, but honestly, I would take him to his doctor for an evaluation.

I don't know of any research suggesting that potassium, calcium, or zinc are "low" in people with TS..........only that they usually benefit from extra magnesium. Some nutritionists suggest that when one ups magnesium, one should ensure that the calcium and zinc intake is also balanced. Here is Bonnie Grimaldi's hypothesis http://www.ncbi.nlm.nih.gov/pubmed/11863398 as an FYI This was Bonnie's original nutritional plan on which I based my son's treatment http://www.oocities.org/torcha.geo/ts_main_bonnie_sup.html She had that page up before she formulated her line of Bontech Sopplements http://www.bonniegr.com/more-info.html There are some good test suggestions in our Helpful Threads here http://www.latitudes.org/forums/index.php?showtopic=2459

No...there are numerous other things that can trigger tics....food & environmental allergens, toxins like mold and pesticides etc, artificial chemical additives to foods like dyes, flavorings etc and a whole lot of other things. We have many parents who have passed through here who have come in thinking their kids have TS and left after finding it was something else triggering and when the offending trigger was removed, the tics resolved. The most common are allergens, but we have also had people whose children were reacting to the flicker on screens or fluorescent lights, new paint or carpeting or woodwork in the home or school, etc etc etc. Have you looked through our helpful threads list yet? I have it linked below in my signature

Hi glad to hear things are getting better and that Handle has been helping. Some people seem to benefit from it while others don't. It seems that younger children and those more on the autism spectrum have most benefit? I am not sure if it has changed but years ago when I was checking into it, the cost was prohibitive! and at that time I was already spending a great deal on trying to help my sonm, so to have been shocked by a cost...well...it was very high and one had to make an 8 month committment if I recall. And as we found things were so improved once he started on the holistic nutrition and acupuncture etc....we did not need to try it. If you search Handle Institute on this forum you will come up with a lot of previous posts on it I do think your child reacting negatively to magnesium may suggest perhaps this is not TS?

Hi you really should post all that on the PANS forum which covers PANDAS, LYME and other microbial induced disorders. I don't know sufficient about either to be able to answer your questions on that. My real concern is with doctors who give steroid bursts when they are not certain of a PANDAS diagnosis, and also not ruled out TS or something else triggering the tics? Even my son's GI specialist knew that he could not be given prednisone or other steroids for Crohn's because it could seriously exacerbate his TS tics! TS is usually genetic yes, but there are other tic disorders as well, and also, TS may not manifest for a few generations and then show due to the genetic combinations. We have kids represented here who have tics from food or environmental allergies, toxins, and many other things so your son could as easily have another tic trigger apart from TS or PANDAS/PANS/Lyme etc Honestly, no one can say for sure how long your son's reaction to the prednisone will last...if he does have inflammation induced symptoms or is herxing, it may be a blessing and he may be much improved after. If he has TS, it can have different not so good effects on a longer term. But I really do recommend you also post on our PANS forum if you have not already and get input from the parents there who deal with Lyme PANDAS etc.

Hi and welcome what caused the "suspicion of PANDAS"? Did the PANDAS specialist see him in person and run any blood titre tests etc. If a child has TS or tics caused by some other factor, and only has grimaces left as a manifestation, I am just puzzled at how a physician would deduce that they have PANDAS from that? And especially why they would risk giving steroids IF there was no definitive dx of PANDAS and a possibility of TS!!! Maybe I am not seeing the whole picture from what you wrote. I do have an adult relative with TS who had massive tics resume after many years of having them effectively "in remission" after having a steroid burst of prednisone for a back injury. I hope things resolve for your son, and that perhaps, if this is PANDAS, it is just herxing. Have you posted on our PANDAS forum as well?

I just do want to mention again that our physician recommended natural probiotics in the diet rather than taking those "high powered" probiotic supplements. Things like Lifeway PLAIN A2 casein kefir,or pure coconut kefir, pure yoghurt made from Guernsey milk (A2 casein), sauerkraut, raw local honey, kombucha tea, unpasteurized miso etc

We were told to use a probiotic daily and just to be sure to always take it at least 2-3 hr apart from any anti-microbial Your doctor may have specific reasons for telling you to wait, but imo that is risky as you want to maintain healthy gut bacteria at all times. But again, your physician may have very specific reasons for suggesting not to use probiotics yet.

If he was doing ok on the regular almond milk it is unlikely he is allergic to almonds. My vote would be the fish liver oil, simply because it seems to be a problem for so many kids with TS!

ps also suggest you try adding new things one at a time and wait a few days to see results...then you don't have so many variables. If the chocolate flavor in the milk is in any way artificial, that could be a problem too...especially if he was doing ok on the regular almond milk...I assume he does not have almond allergy?

oh dear yes....there are many threads here about kids with TS reacting negatively to any fish oil even though they seem to be able to eat fish without problem. My son has always had more tics with fish oil and so uses organic flaxseeds instead as his extra source of omega 3 . He used to take the oil in capsule form but now prefers them fresh ground.

I've reported the problem to Sheila and our webmaster. It appears to be a glitch in the system and I am sure they will fix it ASAP

ps you can also get coconut kefir but be sure the "other ingredients" are ok...friends of mine make their own to be safe.

Yes, as long as you use type A2 casein kefir. We use the natural (yellow bottle) plain by Lifeway, which is the only one guaranteed type A2. My son avoids all other dairy but gets tremendous benefit from kefir (he has Crohn's as well as TS) http://heal-thyself.ning.com/profiles/blogs/the-amazing-thing-is-that

Hi partyof5 I noticed you asked about a probiotic....some kids seem very sensitive to the probiotic supplements, and so natural kefir (we use Lifeway) is an excellent and relatively inexpensive source. Welcome to Latitudes Jen If you search around you will find that the theme of healthy diet & correct nutrition is one we harp on continuously. When I first started posting about it on another forum many years ago, I was ridiculed and told I was in "quackville" for suggesting that artificial dyes and sweeteners and MSG etc could be tic triggers....but I knew what we were seeing in my son and so finding Latitudes a few years later was like a breath of fresh air!

The magnesium is oxide which is very poorly absorbed, and some of the other ingredients are one's that we know have caused problems for my son, both re his TS and Crohn's Personally, I would not use it.