Chemar

my son was given it 10 years ago, supposedly to help with his tourettic OCD , but(as with most meds) he had a bad reaction It is generally prescribed for alcoholism and opioid dependence, I believe related to it blocking endorphins? ....and many people with autoimmune disorders like multiple sclerosis seem to be reporting good results however I have not found any info on why it would be rx for tics per se

Hi everyone just a request to not let this convo extrapolate too much re PANDAS and this murder case. It is distressing some members Personally, I think if any should be a bit offended it is people with Tourette Syndrome, to have the lawyer suggest, as per the link I posted, that a TS dx is grounds for a murder. After all, the vast majority of people with TS have *only* tics, not OCD or any of the other neuro-psychiatric disorders that *some* people with TS also have. And the vast majority of those who also have some of those co-morbid are not angry or violent people at all ! However, whatever the background behind all this is, I am just going to request that this discussion continue with sensitivity toward other members who may find the suggestion that an equation can be drawn from untreated PANDAS to pre-meditated murder very very alarming, understandably.

sucralose is marketed as Splenda, and added to a lot of stuff now. It was not approved by the FDA for 10 years after it came out because of possible health concerns, I believe mainly digestive. Not sure who did what to get it approved but it seems a lot of people are noting unpleasant symptoms and when no longer using the sucralose, it seems to improve. My son finds it messes with his tics as well as the Crohn's sucralose is sugar molecules chemically altered by replacing some carbon atoms with chlorine. sucrose is different, it is a combination of fructose and glucose and occurs naturally in many plants, inclusing sugar beets etc. Unfortunately a lot of it nowadays is derived from corn, and often the corm is genetically modified, mold contaminated etc but given the choice, sucrose is a far better alternative than sucralose imho

Night sweats are also often indicative of liver stress, and also can occur with other illnesses. I do think members need to be careful about attributing a particular symptom as being ONLY related to PANDAS, or LYME or even only infection. Yes, it is helpful to share with one another in case someone may be missing a piece of the puzzle. But, there are frequently symptom overlaps with different illnesses, and that is why clinical analysis and testing is the only accurate way to know for sure.

welcome Hong dietary modifications are generally based on potential allergy/sensitivity to foods. the easiest way to test this is to eliminate food groups one at a time for a few weeks and then add them back again. you will quickly notice if tics improve while you are off eg dairy and if they increase when you go back on it. Same with gluten. You can also keep a food diary and note if tics increase when you eat specific things One thing that seems pretty widespread is that artificial ingredients like food coloring, sweeteners like aspartame/nutrasweet. sucralose/splenda, MSG, high fructose corn syrup amongst others seem to be universally bad for people with neuro issues adding extra magnesium seems to help. Many members here use a product called Natural Calm (ionic magnesium citrate) as well as bathing in epsom salts (magnesium sulfate: 2 cups in tub warm water, soak 20min) very helpful I have a link in my signature on what helped my son, updated over the years. others will have additional info for you too

Hi many people have also found the amino acid L-carnitine helpful for vocal tics Sorry for not remembering the specifics but have you had your children evaluated for strep or other infection triggered tics? Do you have a family history (apart from the kids) of tics and TS?

thanks for the advance apology EAMom I realize you were replying to a specific post and lol mati's mom...you're hired now back to your regularly scheduled programming

Interestingly, my son stumbled on the "OCD helped by anti-inflammatories" when he started taking Boswellia/curcumin supps as natural remedies to help with Crohn's inflammation....he knows it helps his OCD too. Well our subsequent research showed that Boswellin is long known as Ayurvedic medicine for the symptoms of illness that we know as OCD! My grandma (a nurse) always said inflammation was at the root of all illness. Whether caused by infection or allergen or whatever triggers it....seems when the inflammatory response is outa whack, stuff goes wrong!

one more time I really think it would be best to take other discussion onto a separate thread so that this one can remain "on topic" to just that single question initially asked. When someone is trying to get a clear answer on something, it really becomes confusing when the topic goes at a tangent. I know it is all related, but the original poster was not asking who should be tested or why, only asking who does **not** have Lyme. thanks

Of course you need to do what is helping Mel. But armed with the knowledge that there was enough evidence to suggest a warning by the FDA, your doctor should therefore be paying extra attention to monitoring cardio-vascular effects while Danny is on the Celebrex. Same as when someone is on meds that may impact liver function, the docs should stay on top of it by extra careful monitoring while the patient is on the med.

my son is on the D3 mainly for Crohn's, but he has definitely noticed mood improvement with it. He has not noticed any effect on tics per se

Just steering this back to what the original question was

Hi and welcome I wish I could give you encouragement about the visit to the neurologist, but most of us have found them on the whole to be closed minded and that you will likely either be told to come back in a year if tics still persist or offered one of the meds They will likely tell you that alternative treatments and all the other stuff we discuss here is "quack" And they are also quick to dismiss any other cause of tics and add a TS label, even when a wealth of information is now available on the many *other* conditions that can mimic TS ranging from allergies to infections and a whole lot in between TS is a genetic condition. Do you have a family history of tics, OCD etc? Has your child had strep, especially related to when the tics started? Any other known infections? Was there any correlation between the start of the tics and childhood vaccines? other shots? Any known allergies? Have you tried eliminating any food groups one at a time to see if any improvement? ( eg dairy or gluten?) Our admin has written a very helpful reference book to help with all this that you may be interested in http://www.latitudes.org/book.html and here is an informal survey on potential things that can trigger tics http://www.latitudes...ng_triggers.htm I have a link in my signature below on what we have done over the years to help my son hope that helps a bit to get you started on your quest for info

just do also be aware of the 2005 FDA alert on Celebrex http://www.fda.gov/D...s/ucm124655.htm as with so many meds, one has to weight the pros and cons and then make an informed choice

Hi is this grape seed or grapefruit seed? if the latter, do be advised that it can seriously interact with some medications! I may be unaware of the info, but have never heard of grape seed used for yeast? Only ever heard it used as an immune booster/antioxidant? eradicating yeast can cause die off reaction so maybe that is what is happening?

me again just saw you had already posted this on the Lyme forum so it is back here again for TS input it does seem that illness of any kind, not just infection, can trigger more tics in many kids. it really is hard to say how long before it stops tho. It could be die off reaction (herxing) with the antibiotic Are they sure your child actually has TS? or were the TS symptoms a possible result of the Lyme? hope things start getting much better once the antibiotics/herxing is past

her lawyer is trying to use Tourette Syndrome as defense! http://www.orlandosentinel.com/news/local/crime/sns-ap-us-endless-hiccups-arrest,0,3153148.story

Hi I moved your post from the TS/tics forum to the Lyme forum as members here are likely to have the most info for you on this

glad to hear things are going well Kevin btw, if any candy allowed again, dont forget The Natural Candy Store (All The Fun, Without The Funny Stuff! is their Motto ) http://www.naturalcandystore.com/

((((eljomom)))) no, I do not believe any of those could "cause" tourette per se yes, maybe stress can bring TS out IF there is a family history ie genetic predisposition I think all of us have been through the "what if it is something I did wrong" phase. but honestly, even if it were...the focus needs to be on healing, not self-recrimination! If things between you and dh are beyond just regular marital tiffs, maybe some relationship counseling would help? Similarly if you think you need help re anger management? and definitely a visit to your gynie for something to take the edge off that PMS is a good idea. I personally prefer natural treatments always...evening primrose oil has a great reputation. Even something like the Bach's Rescue Remedy can be helpful when you feel the "edge" on your mood I have great respect for parents who homeschool...we tried for a year but knew there was no way we could continue. My son and I have a great relationship but it went very bad when I became "teacher mom" Honestly, there comes a time when one has to step back and breathe and stop obsessing over the possible "whys" Don't let the tics overtake the value of just time spent enjoying your child here again is something a friend of mine, Lara, posted a long time ago that helped me greatly to get my perspective straight. It's OK To Tic Just want to share something with you all, please. Sometimes I find it hard to express myself on some of the threads. I hear you but I don't always know how to get across how I feel. People with TS tic. It's OK! Sometimes some tics can be self-injurious or problematic, that cannot be denied. Some tics interfere with all manner of things, like reading, writing, walking, breathing, talking etc. etc. etc., (yes, I know) but the majority of the time they are JUST tics. I don't even notice people's tics much anymore. I know this might sound most peculiar to some people, but I also find tics of people I know very well, quite endearing. People tic when they are relaxed. People tic when they are stressed. People tic when they're driving. People need to feel they can tic freely and not feel as if they're being watched, or being studied. It feels good to let it out. People tic 'cause they gotta tic!!! My son sure has bothersome ones but they are only bothersome to ME when they are dangerous or are causing him grief for some reason or another. I think the most grief he faces is from people who don't seem to just see him as _him_ anymore. They see his constant ticcing and it's as if they negate the existance of his 'self'. Every single day I am reminded how comfortable home is for my children. That's because school, for example, causes so much build up of unreleased energy. Kids and staff at school, despite education, still don't see past the tics. They don't see past how much my children have changed tic-wise since they were in Year 1. They don't look!!! I'm not denying that tics can be of concern. I'm not denying that tics can be a right pain. I'm not denying that tics can really affect some people's quality of life. I'm not living in some unrealistic place where I deny the concerns and the pain these _can_ and do present. Believe me, please, I know. However, I think we need to understand in our own minds, that there are many more things that can cause more distress to a person than tics. We need to start with ourselves. Start at the source. Change the way people view TS from here. I truly empathize with you all who are struggling with this in your young children. I have struggled, still do struggle, and will struggle in the future with some issues. I think the greatest thing we can all do though, is to look BEYOND the tics. Hey, maybe the rest of the world might get the same idea! Your children's tics are just part of the tapestry of who they are and who they will become... just a tiny part.

Hi I am totally mind boggled by the fact that a school called a doctor to instruct him medically about a patient of his ??? The school has absolutely no right to call your doctor's office to make demands If the doctor feels a change in meds is needed that is one thing...but not because a school instructs him to! I am really shocked by that!

ds= dear son dd= dear daughter etc

yup. we have tracked the lunar effect for years now. My son actually is doing way better with moon waxing nowadays. We think that balancing all the nutrients and neurotransmitters has made a big difference we aren't the only ones who have noted this and there are some threads with linked research. One suggested that as the moon's gravitational effect impacts the tides, so it also has an impact on our bodies, which are predominantly fluid. Other stuff too. Interesting reading. Obviously not everyone is affected by the lunar cycle, but still worth noting as a possibility Maybe start keeping your own calender on any possible correlation. ER workers talk about full moon time too, and how many more people seem to show up in flares of one kind or another. PANDAS doesn't always have to have OCD although yes, it is unusual not to. Also, OCD does not always manifest dramatically in everyone and may be more subtle and so overlooked as a symptom..... Did the tics ramp up or down with the antibiotics? Sometimes antibiotics can cause an increase in tics as a result of what is known as herxing (herxheimer or die off reaction) which results when the microbes are dying and they release toxins into the system. In addition to PANDAS, related to strep, there is also PITAND, with similar symptoms, but related to microbes other than strep. I dont know if staph is documented as being one of the triggers, but the parents on our PANDAS/PITAND forum here may know

Kevin, you have checked into PANDAS, yes? and yup, a tiny bit of "junk" can have a very big negative reaction, especially when a child has been on such a "clean" diet I do also want to mention that it is full moon tonight, and as documented by myself and others here over the years, tics, OCD etc often wax with the moon. fact not sci-fi fiction............

Hi I am not sure if you saw my reply above to you earlier today, but I tried to explain PANDAS and other infection triggered tics/OCD=PITAND we have a PANDAS/PITAND forum here http://www.latitudes...hp?showforum=17