Chemar

eyesongod, you may want to also post on our PANDAS forum to get answers there http://www.latitudes.org/forums/index.php?showforum=17 yes, you do have the right to demand throat culture (not just rapid test) as well as bloodwork most conventional physicians, especially neurologists, are still pretty clueless re PANDAS, so you will probably have to educate the family doc first, possibly by asking him/her to take a look at the info on PANDAS that you bring them it may not be PANDAS and if so please dont lost hope my son's OCD was always the very worst of his symptoms, far more bothersome than his tics alone, and we have had it under control for years now with careful diet and correct supplements. he will soon be 20 and is doing just great...whereas at around 10yo he was so bad that we were told he may need to be institutionalized..... we tried the medications, but they honestly only made things much much worse as he developed drug induced psychosis and a host of other side effects Once we got him off the meds with a good doctors help. and onto diet and supplement program, with acupuncture, the change became dramatic and things have just gotten better as the years have passed there is always hope.................

Hi Laurena OCD is a recognized co-morbid condition with Tourette Syndrome, and recognized as a subtype known as "tourettic OCD" the tics arent generally a "defense mechanism" against the intrusive thoughts but research has shown they are biologically linked ie the tics trigger the OCD and vice versa and often the 2 "morph" as many of us here can attest.....going the "traditional" route for OCD and having doctors prescribe medications for it has often done far more harm than good medication is not always the best or only solution, and coming off the SSRIs that are traditionally prescribed can be a very long nightmare. also, with PANDAS, a sharp spike in OCD/intrusive thoughts etc is a common first symptom and most traditional MDs dont have a clue about it!

Faith there is evidence that ritalin can trigger tics in susceptible individuals. It is a stimulant medicine prescribed for ADHD, and has recently had scrutiny for serious other potential side effects

so sorry to hear of all this....my heart goes out to you and I do hope and pray things stabilize soon I am really deeply concerned at the way the steroid burst is used as a diagnostic tool so frequently my husband has TS and had a steroid burst for pain after a car accident, despite my warnings to him and the doctor It made him totally manic and brought out tics and OCD that he hasnt had since childhood, and caused him cognitive loss, which has not improved even after a year. I know that steroids can greatly benefit some kids with PANDAS, but for others, especially if they have underlying TS, it can be a major problem.

any infection can trigger more tics so yes, H pylori could too IMO Mastic gum (mastica) is an excellent way to get rid of pylori and DGL-liquorice root (must be DGL) heals the ulcerated areas caused by pylori. which herbs did they give to treat the pylori? I noticed you mention that the Dr has her on "amino acids" do you know which? I ask because some amino acids can increase tics for people with TS has she been treated for the solvent toxicity?

Hi and welcome where I cant claim that our son with genetic TS is "cured" by dietary and supplement modifications, I certainly can attest to the dramatic improvement this approach has made for him. we do have other members whose children's tics have fully resolved (ie not TS) from dietary changes or other treatment resolving their tic triggers Caryn can attest to this going gluten free

Faith JMHO but I think it likely has been. Just maybe that others looking into this are not suggesting that this is the *only* reason people with TS tic and have OCD etc. but rather see it more as but another factor to be looked into I still believe this will work for some people because the TMJ possibly IS the root cause of their symptoms for others, where it even may bring some relief because it may also be a factor in their tics, yet it may not be a "cure" because they have more going on than just TMJ, or they may not have TMJ at all.... and so it will not be of help in resolving that which IS at the root of their specific condition I am really pleased for anyone who is benefitting from this approach and mylittleangel, also pleased to hear how well Dr Sims is following up for you. Hope the specialist in your area is able to help your child and also that much will be learned from that conference!

Hi Char my son did not show high arsenic so that was not treated he did show high mercury, most likely from my many mercury containing dental fillings when I was pregnant and nursing we treated and yes, his levels went down dramatically arsenic levels can show high in kids exposed to it in woodwork, especially wooden playgrounds that may have been treated with it. just google high arsenic from wood and you will see the dangers I am not a doctor and so I cant say what is high or low levels of arsenic and at what point they should be treated, but honestly if I got a result showing high arsenic and my doctor simply brushed it off I would ask many questions based on all the warnings about high arsenic and kids did you watch that youtube video I posted on mercury....seeing what happens to the neurons really drives the point home

this is remarkable electron microscopic live footage of what mercury does to neurons

we had hair and blood testing done...with amazingly close correlation! Char, I am speechless that you ND would say not to worry at high arsenic and mercury levels!

Hi Abbe we used chlorella coupled with acupuncture/biofeedback when mercury detoxing. after the tests showed his systemic mercury levels were way down to below "normal" range, our physician recommended alpha lipoic acid to mop up the rest (one has to use this last as it crosses the blood brain barrier and so can attach mercury and carry it into the brain) we had already done the candida elimination and didnt find any flare up of that so it is possible that the remedy you are using may be affecting his GIT...do you know what is in it?

((((((Faith)))))))) ya need hugs not whacks I think if we are all honest these are mess ups we have all made at one time or another....I have sometimes done a "whaaaaaa!" when bringing something in, only for my son to find I missed something on the label and it is a no no....how embarrassing is that!! that TBHQ is nasty stuff so it wouldnt surprise me if it were a culprit also remember that with our kids being on such pure diets, even a tiny bit of an offender can cause a dramatic result re the carnitine...just thought I would mention that when my son was able to tolerate it, he did better on l-carnitine rather than the acetyl. as mentioned before, he reacted badly even to that when we last tried it for a vocal, even tho it had worked wonders a few years bf on a screaming tic. also to add that he seems to do much better on P-5-P than just B6 Hope things stabilize soon gonna whack ya with another ((((hug))))

lele TS is classified a disability and so BY LAW no school can punish or deny education to a child with TS because of their TS symptoms here is information about it http://www.tsa-usa.org/educ_advoc/education_main.htm

my son has ADD and CAPD which necessitated the initial IEP however, when he was switched to a 504 at our request, they built in the accommodations for his learning disabilities so that what he had on the IEP was covered in his 504 plan altho you cant have an IEP and 504 simultaneously, the 504 definitely can cover the ground in the IEP, and build on it to accommodate the additional health, emotional, behavioral etc needs

the Kids Natural Calm magnesium was mentioned above. many have reported very good results with it. (dosage is on the tub) http://www.iherb.com/Kid-s-Formula-Calm-Na...226-g/5120?at=0 you may want to check the PANDAS forum as a throat swab showing negative for strep doesnt rule out PANDAS http://www.latitudes.org/forums/index.php?showforum=17 lele, people with TS dont turn into "monsters" even when at its worst, people with TS are often the kindest, most compassionate and gentle people around, blessed with many talents and abilities. I am not sure why you have that concept of TS but I hope as you learn more about it you will see that it is just another neurological disorder after my son was diagnosed and I was very depressed over it, someone wise recommended I spend some time reading about kids with terminal cancer and other truly heartbreaking conditions. It sure helped me get my perspective straight on my son's diagnosis. As I mentioned above, he is now almost 20 and the challenges he has faced having TS have made him into a young man who has qualities that shine!

Hi and welcome I cant post much right now as working but wanted to agree re the importance of magnesium (we really like the natural calm products too) and epsom salts tubs are very beneficial for my son L carnitine worked for my son with vocals some years back but more recently it made him feel really spaced out and didnt help much so it really is a trial and error thing I have a link in my signature on what has helped my son also, have you seen the book written by our administrator, Sheila Rogers http://www.latitudes.org/book.html it has excellent information and is carefully researched and written I agree you should checkinto other things that can cause tics, like PANDAS, vaccines and food and other allergy etc etc not all cases diagnosed TS *are* actually TS as many conventional docs still are sadly not fully educated on the other multiple causes my son is almost 20 now and was diagnosed TS age 10, tho he had symptoms (tics, OCD etc) since very young. We tried meds and found they only made things worse with multiple serious side effects, and saw dramatic improvement with diet and supplements, acupuncture and the other stuff I mention in my siggie link thread. He got thru the good and the bad times just fine and is a wonderful, very talented young man. I pray you will find answers to help your son too

and a PS for those who have a TS diagnosis...remember it is the LAW for them to give the accommodations needed under IDEA ...classified "other health impaired" some schools are great with providing what is needed but some can be a real pain!!!! with TS diagnosis you have the law on your side to demand the accommodations required for someone with TS

Remember to keep a list of accommodations needed and add to it each time you think of something...then take it with you to the meeting. if you have a doc or educational psychologist who will add many of those in their letter/report it carries so much more weight we found the older teachers were usually really good at implementing the needed accommodations, but the younger ones sometimes need a meeting or two to "get it" and ensure that they allow what is necessary. dont hesitate to call the special ed person in charge or school nurse or guidance counsellor to request a meeting if you feel a teacher isnt providing what is written in the plan, or if things need to be added

a 504 is a better option than the IEP in these cases I think, as IEP deals more with learning disabilities, where a 504 covers *all* aspects of the wide ranging symptoms (including emotional, frequent bathroom visits etc!!) found in PANDAS, TS etc we initially had my TS son on an IEP but switched to a 504 which proved to be far better for him my son had the 504 plan in place all the way thru school and it was one of the very best things we ever did! We met at the beginning of school year with all teachers he would have that year, and had doctors notes plus his educational psychologists evaluation on his needs as well as our own requests re needed accommodations based on his sx etc. These would then be documented and each teacher got a copy and had to comply. I was entitled to request follow up meetings as needed with all or specific teacher to discuss new needs or concerns etc. the school nurse was always present too altho dealing specifically with matters related to TS, this info on the TSA website may be helpful to you http://www.tsa-usa.org/educ_advoc/education_main.htm

$$$$$$$ sorry...couldnt resist

eye rolling was one of my son's earliest tics...long before we even knew he had TS He was prescribed glasses which really helped a lot! His eye rolling was later determined to be a tic which was aggravated by him also having astigmatism and myopia. He found the most help from glasses that are slightly tinted which relieves that black print on white page problem too

IMHO= In My Humble Opinion by pure vitamin I mean one without artificial color, flavor and other kinds of chemical additives....its ridiculous but most of the supps and multis, especially those marketed for kids, have garbage added and sadly yes, there are decptive labels that rename or cover up the artificial stuff....if in doubt, call the company and ask exactly what those "natural flavors" or xyz are!! we are very pleased with the Jarrow MultiFood powder that we use to make multi smoothies or shakes to start each day with.

Hi my son is almost 20yo now and doing really well. has been on diet/supplements and acupuncture etc for 8+ years now It is a good idea IMHO to start magnesium and see if it benefits. all the rest can follow but research does suggest magnesium helps calm tics adding a good pure multivitamin and cleaning up diet of artificial additives, while trying to eliminate known tic triggers is also worth starting asap. re neurofeedback...do approach this with great caution as we do also have reports of it having very negative effects on some people with Tourette Syndrome!! finding a naturopathic or integrative doctor to work with is a real help. even if they dont know of the nbenefits of supps and diet etc, some are dedicated enough to educate themselves and then combine that with their medical expertise to guide you but be aware that most conventional docs will likely suggest that alternative treatments are "quackery" and want to push medications. my personal advice is also be wary of alternative docs that charge very high fees. Expensive doesnt necessarily mean better kwim a good way to get started IMHO is to get Sheila's book http://www.latitudes.org/book.html

there is an interesting discussion on this on the PANDAS forum here http://www.latitudes.org/forums/index.php?showtopic=5122