Chemar

Hi Kallik wood is frequently treated with arsenic a number of outdoor playgrounds here in central florida were replaced because they were made of wood with high arsenic levels. the environmental protection agency may have info for you re testing your well a Google Search also brought up a lot of links for testing in Texas

Hi Amy just wanted to mention that SSRIs (aka anti-depressants) do not specifically reduce tics. they are usually given to help control OCD/depression etc. our experience on them (luvox) was horrid!!!! tho I know some have been helped by them

we did try eliminating wheat/gluten and dairy at one time but it honestly made no difference for my son as he is not allergic/intolerant to those foods however, removing artificial foods and chemical food additives made an enormous difference for both his tics and OCD and ADD. This includes all preservatives (especially sodium benzoate) MSG, carrageenan, food colorings, artificial sweeteners like nutrasweet/aspartame and splenda/sucralose, high fructose corn syrup and most everything else that appears on packaged/canned/bottled foods that have looooong lists of ingredients with unpronouncable chemical names if my son injests any of those we see an explosive waxing of tics and OCD and "fuzzy brain" we try to eat pure whole organic food

Hi Janene yes, mercury is a known tic trigger and is the subject of many threads here on vaccinations and heavy metals etc my son had somewhat high mercury and we used a supplement called chlorella to help remove it from his system he has tourette syndrome altho I do believe the mercury contributed to his tics (likely from my teeth fillings leeching into him while pregnant as well as from the thimerisol he probably was exposed to in childhood vaccines) yet I know in his case many things worked together to cause his genetic predisposition to TS to manifest. we have a family history of tics, Tourette and OCD

Hi Calicat bruxism isnt always associated with tics and can also occur in people who have no history of tic disorders my son had bruxism which *was a tic* and which was helped by vit B5/pantothenic acid....but again, he did not grind when asleep, only when awake. We observed to be sure as doc wanted to give him mouthguard but he wasnt grinding in sleep perhaps it is the TS tics that calm when asleep and other tics dont???

picking is often OCD related Jenny. May be a serotonin deficiency at work there. from my experience ANY reminder re tics triggers them

I do feel for your situation as it is so hard when tics can be hurtful yet we always have to bear in mond, as your daughter has explained, that when we draw attention to the tic, it DOES seem to trigger it more, so we walk a fine line I learned that the very hard way ): maybe try espsom salts tubs in the evenings to promote more restful sleep. my son did go thru a lot of lip related tics moist chamomille and calendula tea bags are very soothing. I used tp leave a little bowl of them for him to apply himself as needed.

big thanks to Sheila and our webmaster for agreeing to the change of this forum's name to incorporate PANDAS we have IMHO one of the most active and informed group of PANDAS parents anywhere on the web and now it's official !

Hi Janene the only time my son appears to be totally tic free is when asleep. However he has always been somewhat of a restless sleeper, but his tossing/turning is very different from his tics he has Tourette Syndrome.

Hi Janene so sorry we missed your post and have not replied yet have you tried looking at the sticky on Finding Medical Help that Sheila has here? http://www.latitudes.org/forums/index.php?showtopic=565 hopefully one of our members in your area will have a good doc to refer you to all the best

I couldnt agree more on cutting back on supps when one feels needed or especially if there is an indication of a supp maybe causing more tics each person is so unique and I honestly feel supplement and diet modifications are not a "one works for all" situation.....or even that what helped once will help forever. things are never static I have found and one needs to continuously be modifying, especially as health improves with all the other stuff one is implementing my son instinctively now "knows" what helps and what hinders, and he really has been in charge of his supps for a number of years now. I think once a child is of the age and ability to be able to understand that (beyond the "I hate the pills" aspect ) they really should play an active part in formulating their own health plan my son has also found that sometimes supps that once were helpful to him, now seem to have effects he doesnt want and so he doesnt go near them anymore (eg 5htp and l-carnitine, which were major helps for him in the past) I think too that as the hormonal changes etc kick in along with whatever systems may have been correctly jump started by supps, diet, detox or whatever, sometimes less is more with our kids. one thing my hubby and son have found tho is for their tics, they cant do without magnesium and a source of multi supp with good B vit representation.

Hi Emma, nope not industrious enuff to make my own cream base LOL but I just dissove the epsom salts in hot chamomille (tea) water and then blend it into a cream base. I like calendula cream. I also add a little coconut oil. one needs to blend well and I do find I need to stir often as the water tends to separate from the cream/oil mix does anyone else have a "recipe"? as I know mine is fairly primitive but hey! it works

Hi Emma yes, I have intentionally stayed away from the Kirkman cream because of the chemicals they have in the base I make my own epsom salts cream mix

yes Emma, if she has candida "yeast" infection then a probiotic will be helpful but will not kill the yeast. for that you need specific diet and anti-fungal treatment.......as mentioned I like Candida Clear by NOW best of all the products we have tried. seems to get the job done quickly and minimize the dreaded "die off" reaction excellent book is The Yeast Syndrome by Walker & Trowbridge that includes good recipes for anti-candida diet

Emma did you see the info peglem posted re candida?

thanks sooooo much for posting this peglem!! you are so right about the yeast often preventing other stuff from working correctly. Emma, have you ever had candida testing or treatment done for her? We have great success with Candida Clear by Now tho there are other anti candida remedies that have worked well for various members discussed on a number of threads here too. we have a link in the sticky essential threads 101 for a non scientific but helpful diy spit test to see if maybe candida infection is present. Antibiotics are known to promote yeast overgrowth when not used with probiotics so maybe candida is at work here!!

((((Emma)))))) sorry I havent replied to PM yet...my hubby hasnt been well and I am multitasking whether this is classic OCD, strep induced OCD or TS spectrum OCD ...all OCD seems to be in some way related to a deficiancy in serotonin, so hopefully the samE plus Inositol will begin to kick in. However, the fact that your daughter had high strep titres is to me indicative that this is the root cause of her OCD, even if she isnt still responding to the antibiotics honestly, with my son it wasnt till we added the 50mg 5HTP to the mix that we got a dramatic improvement in his OCD so if you dont see an improvement within a few days on the samE you may want to do a trial. You will quickly know if it isnt a good fit for her ............ it is just one of those trial and error type supp. it does promote sleep so be sure to only give it at night hoping the CBT specialist can help as well

Hi Lori and welcome I have a link in my signature here on the natural methods of treatment that have helped my son over the 8 years since his TS dx do also take a look thru our Essential Threads 101 as you are sure to get much info there http://www.latitudes.org/forums/index.php?showtopic=2459 the book written by our administrator, Sheila Rogers is an excellent reference http://www.latitudes.org/book.html

Hi determinedmom I am not a PANDAS parent so cant really answer your questions, but did want to welcome you to ACN/latitudes I know other parents here who deal with PANDAS will have some input for you

thanks Jenny...I felt real bad that you may have thought I was referring my comment at you . I agree Tami, I wish schools et al would simply recognize when needs exist and accomodate "as needed" without all the hoops one has to jump thru to get the classifications/labels etc...with some school districts actually making it hard to get accommodations, even when the "labels" are attached. for the record, my son does *not* like the term "special needs" although he recognized why it was beneficial on his 504. Now that Tourette is classified "disability- other health impared" for the education system by law, I am hopeful things will get easier for parents having to request accommodations for tics, OCD or any of the other disorders that can frequently occur with it http://www.tsa-usa.org/news/TOURETTEOHI0806.htm

Hi emma as with the epsom salts baths, the magnesium cream allows rapid absorption of the magnesium which has a calming effect on tics some buy it (I think from Kirkman?) while some of us make our own by dissolving epsom in hot water and then blend into a cream base

ooooh I am in fear factor mode on steroids so just want to throw this in for consideration steroids INCREASE tics for those with Tourette Syndrome I am not sure whether this pertains to PANDAS related tics as well we rejected steroid treatment for my son when he was dx with Crohn's for that reason My husband was recently injured when someone hit the drivers side of the car and has spinal/sciatic nerve very intense pain The ortho insisted on giving him the steroid burst (ie pulse) with Medrol and it made my hubby's tics wax bigtime, hypered him something horrible!, totally messed up his cognitive functioning, and he is still suffering dreadful neuro/digestive side effects a week after it The doc negated our concerns and said the short burst wouldnt have the negative effect and my hubby followed his advice (he was desperate for pain relief) even tho I begged him not to take it as I really dont know protocols for PANDAS, this may be a really good treatment there but I would urge anyone with a TS dx to be VERY cautious of steroid treatment this old article exlains a bit why steroids are bad for TS http://au.geocities.com/jones_kacm/chem.htm

Dear Mack5mom the paranoia is probably related to the OCD that most PANDAS kids have as a result of the illness My son doesnt have PANDAS but has Tourette Syndrome, and the OCD aspects have always been hardest for him, way more so than the tics. we used serotonin boosting supplements and cognitive behavioral therapy to help him, and acupuncture always calms him when OCD is up if you dont mind sharing which area you are in, others may know of PANDAS treating docs to suggest

Hi Jenny I am so sorry if you misunderstood my comment as being directed at you or anyone on the thread....it was based more on a general feeling that many parents have about not telling the schools and not wanting their child "labelled" different etc etc and seemed relevant to the conversation. I was writing more from my personal feelings on the subject rather than in response to anyone specifically I have seen so many kids fall thru the cracks and not get accomodations they need or be punished in class for things they cant help etc etc that I am a major advocate for getting correct accomodations in place, whether IEP, 504 plan or special needs or disability clasification...whatever works best in the specific situation. The correct classification can truly save the child a lot more needless problems than having the "label" ever could produce IMHO very often kids are not getting accomodations because of parents reluctance to have them "classified"...and where i sure can understand that reluctance (been there myself) I also know how negatively it can impact the child again, sorry if my comment upset you and yes, I sure did understand that you were asking if your child met special needs criteria not whether you should reveal that she does

hi Jenny I wouldnt hesitate to get special needs accomodations if I were you my son had his 504 plan designed to meet his special needs and I am very thankful we had it in place as it made his life (and mine) a LOT easier at school. special needs are not restricted to chronically ill or mentally challenged people when something can really be of help to a child, who cares what other people think