Chemar

Hi Leah my son is an adult now (24) and still doing well regarding tics. (He does also have Crohn's Disease and that is much harder for him than the TS) If you look in my signature below, you'll see a link to what has helped him. We have used only alternative/natural treatments since he was 11 (tried meds for a year with horrible side effects!) I also have a link to the Helpful Threads in my signature There is a lot of info here on natural treatments as that is the focus of this forum The book by Sheila Rogers is an excellent reference http://www.latitudes.org/book.html

Welcome borsoog You may want to start a new thread for your post as it is likely to get more responses that way as not everyone will see it on this other thread.

Hi thundermonkey I believe Jim has other threads here re the physicians he decided to go to. Dr Sherry Rogers is on our advisory board at Latitudes/ACN though I realize Syracuse, NY is a ways from NJ but still, may be worth it. http://www.latitudes.org/brd_mem.html#Rea You may want to also post on our ADHD board as this being the TS/tics board, the approach we have is somewhat different than for ADHD.... one important one being that those stimulant meds your son is on are a major potential tic trigger for anyone with TS, and there are also reports here of some kids developing transient tics after meds like ritalin. I am just adding this in as I have concern that some TS parent may read and see the two meds mentioned as helping and not realize you meant helping for ADHD not TS!

If there is a chance of there possibly being TS, with or without PANDAS, it is IMHO very risky for anyone , nomatter how qualified, to try to diagnose PANDAS by phone! My personal suggestion would be to see a PANDAS specialist in person, with your child present for a complete evaluation. Some of the treatments for PANDAS eg steroids can be detrimental to people who have T, as discussed above

Hi it looks ok I think, but I have no idea what the last 3 ingredients are as I have not heard of those fruits? But yes, more magnesium would be needed, especially if he has tested low on that or does in fact have TS

Yes, the allergies are usually to the milk protein ie the casein or to the lactose so it makes no difference whether it is organic. Some people with cow's milk intoerance do see to be able to handle goats milk. Elimination really does provide clues as when you reintroduce the offending food after a period of being off it...the reaction is usually very clear! That is so good that she has a clued up teacher too

Yes, it makes absolute sense to try to get an accurate diagnosis to help with school. We did, and then got a 504 plan for my son which really made a big difference. He used it all the way from elementary through high. Some people prefer an IEP. If your child does have TS, it is covered in the education system under ADA, so many accommodations are entitled by law That is great that you have found a pedi doc with a more holistic approach

Hi TNLady Honestly, from what you are describing, things sound pretty mild and do not seem to be disturbing your son's normal functioning. I agree that it is helpful to actually know what is causing the tics and other symptoms like OCD, but frequently finding a good Integrative or Environmental Doctor is easier said than done. Where I agree it is always a good idea to be sure there is no underlying infection triggering the tics and OCD etc, as PANS (as it is now called) is a very real diagnosis that can be better helped if identified and treated early. But please don't become so focused on that, or even a TS diagnosis, and possibly lose sight of the other potential reasons that your child has these symptoms. Most of all, I think it is important for your child not to sense that there is something "wrong" with them and become concerned, as that can often be a trigger in itself. Just do your own sleuthing, and hopefully find one of those rare gem doctors who don't just write a prescription for everything, but are actually clued up and willing to help heal holistically rather than just give stuff to mask symptoms!

Welcome to both of you Lisa, sorry your post got missed! As logismum mentioned, some people with TS do seem to react negatively to fish oil and so for them flaxseed oil, or freshly ground flaxseeds are a better source of Omega 3, along with eating more omega 3 rich foods (avoid farm raised salmon !!!!) Allergies (food as well as environmental) can be a tic trigger and we have many reports here of tics resolving once the allergens are removed. Do take a look at our Helpful Threads pinned to the top of this board

If you are looking for a more natural approach rather than just medicating, an Integrative or Environmental doctor is a good choice. I would suggest you look at our pinned Helpful Threads to get some more info on the many things that can cause tics http://www.latitudes.org/forums/index.php?showtopic=2459 Our admin, Sheila Rogers, also has a helpful book http://www.latitudes.org/book.html re the steroids...it is only tics related to Tourette Syndrome that may get worse on steroids due to the dopaminergic trigger. We were warned early on never to give my son steroids so never have. Some allergy meds can be tic triggers too You may want to take a look at this survey on tic triggers (scroll down the article for the list) http://www.latitudes.org/articles/finding_triggers.htm

Hi Is there any history of TS or tic disorders in your or her father's families? Just do note that where it is often very helpful to have a neurologist diagnose, they often suggest the strong meds which can have very adverse side effects. Just be informed before giving any to your child. There is an excellent website to learn more about TS and the conditions that sometimes accompany it http://www.tourettesyndrome.net Here at ACN/Latitudes, the focus is more on natural ways to help kids with TS/tics, and our admin, Sheila Rogers, has written a very helpful book about all this http://www.latitudes.org/book.html Do also take a look through our Helpful Threads at the top of the page http://www.latitudes.org/forums/index.php?showtopic=2459

Honestly I would not be so quick to say it is Tourette and not PANDAS, especially with recent strep in his sibling, and similar symptoms of it for him!!!! TS (or other tic disorders) and PANDAS are not mutually exclusive so he really should be checked out by a PANDAS specialist. You may want to also post on our PANDAS board to get more input there. If it is Tourette Syndrome, those steroids for the cough may well have triggered more tics as steroids elevate dopamine, which in turn increases Tourette tics. There are many factors that can cause tics, apart from TS or PANDAS, and so it really does not sound like the doctor who treated him is very clued up about all this. As an aside, please be very cautious about medicating for the ADD as some of those meds can cause tic increases in kids who are TS.

Spartan IMO the only way to have a better doctor experience is to choose an Integrative or Environmental medicine doctor. Sadly very few conventional doctors do anything other than conventional treatments. As you are no longer a child, and you say your tics are getting worse, all the more reason to see a physician who thinks outside the textbook and can help you determine what is triggering the tic increase rather than just give medication to cover it up and potentially bring adverse side effects. jmho

Just an FYI that Mastic Gum (aka Mastica) is an ancient Greek remdy for ulcers, now understood to eradicate H. pylori and heal ulceration it causes. It's sold in capsule form as well as the chewable.

I agree with Chris that it is important to know just what the root cause of your son's tics are. If a child has tics from PANDAS, they are going to have very different responses to supplements than a child who tics due to TS, or allergies or environmental toxin exposure etc etc Also, the type of supplement can make a big difference in a person who may have sensitivities to some of the ingredients. We finally understand why my son has always been so acutely reactive to meds, some supps and food additives etc as he has an official Multiple Chemical Sensitivity diagnosis, which explains why he has to use supps that are very poor with no "filler" ingredients etc It's also important to have baseline levels and not to supplement if the child already has good levels. Adding a supp when there is no deficiency is not just a waste of money...it can actually have a negative effect.

That is good news croation mom So it sounds like the PANDAS diagnosis is the more accurate one then, rather than Tourette Syndrome?

Hello Angie we used a diet rich in Omega 3 as well as supplementing with it, and Gingko biloba

Our physician advised us to introduce all supplements at low dose and individually,working up to recommended dose, noting any adverse or beneficial effects, and then adding the next. We were advised to keep a detailed journal which really helped determine what was good or bad, identified triggers etc etc My kids had been on multivitamin/mineral since they were tiny, so that was always present.

If you just introduced an anti-fungal, he may be herxing ie experiencing the toxic die off of the fungal infection, which always makes things worse before they get better. Is he doing Epsom Salts baths to help with the detox? as well as drinking lots of pure water? Our doctr had my son on specialized detox remedies during anti-fungal treatment to minimize the herxing

My son used it as part of the OCD/anxiety regimin some years back and found it helpful. The methionine helps increase serotonin. Np specific use for tics...we definitely saw no increase....and usually when mood/stress is relieved, tics go down

croatian mom, by "until today" do you mean there is relief today or still no relief at all?

Bonnie have you looked into the TMJ tic connection. There are some people with tics who have found relief when they have treatment to correct misalignment of the trans mandibular joint. Sheila did a piece about this in a recent Latitudes issue and there are some threads here about it. There was a bit of hype about all TS being related to TMJ etc, which is obviously not so...but it does seem that some people tic due to TMJ problems, and if your son has these issues...well maybe this could bring the help he needs?

Hi Spartan all I can say is that a number of people (including my son) have reported increased tics with any fish oils Flaxseed oil omega 3 seems to be a better option for people sensitive to fish oil

Hi Nadine just a quick reply to those 3 points you asked about 1) Kids Calm is no longer being made as just a magnesium supp...it is now a multi-liquid. But yes, Natural Calm appears to be well tolerated, and helpful, for kids too! 2) For a half to full tub of water 2 cups Epsom is suggested with a 20 min soak. With under half tub of water, 1/2 cup is suggested 3) L-carnitine seems to be the supp that has most anecdotal reports of helping vocal tics hope things get better soon!

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?