Chemar

Hi Faith I was about to reply but see that Vickie already did copy what I posted on Michael's thread...thanks Vickie I have actually been getting PMs from parents who are very worried as they agreed to steroid bursts for their kids from Doctors on *phone consults* ie doctors who have *never* seen the child in person!!! who therefore have not evaluated whether the child has TS (whether or not they also may have PANDAS) some of these parents are seeing a dramatic upswing in tics when the prednisone is used I personally have a serious concern about this because I have witnessed first hand the *long term* harm that the steroid burst has done to my TS husband, not only with the spiking of tics, but also with cognitive impairment and some other issues that he never had this way prior to taking that prednisone. as I mentioned in the quote Vickie posted, I do know that steroid burst treatment can be very very helpful for inflammation and I have friends with MS and other illnesses who desperately need their prednisone treatment. I also know it's value for PANDAS but if there is the possibility that there is *also* Tourette Syndrome, then it IMHO should be approached with extreme caution. ps just for the record, Sheila Rogers runs this website ( http://www.latitudes.org ), not me I just help her by volunteering my time for moderating the forums

(((((((((((((((((((Bonnie))))))))))))))))))))))) just wanted to leave a hug and say I am praying for you that you will be able to get through all this till Friday and that the relief of having your home back to yourselves will help calm ds greatly I used to smoke many years ago (quit when pregnant with oldest son), and I confess when I smell it now I am totally nauseated so I sure sympathize. I cant abide bad language or crudeness either so I sure feel for you! only 2 more days to go! more ((((hugs)))) of support

Michael PLEASE Please Please be very careful before considering a steroid burst if you have Tourette Syndrome (even if you also may have PANDAS) steroids can trigger tics in people with TS my husband is in his 60s and his tics were almost non existent for many years now he suffered herniated discs in his spine over a year ago ago and despite my warnings, agreed to a prednisone burst recommended for the inflammation by his orthopedic doctor. I tried in vain to warn both of them of what I had heard related to steroids and tics. They felt I was being overly dramatic my husband had horrendous side effects from the prednisone and in addition to cognitive impairment, it also triggered a massive spike in his tics, which are still intense after over a year I know the steroid burst is very beneficial for inflammation and yes, has helped many people with PANDAS BUT if you have TS as well *please* proceed with great caution on this!

Hi Mar Integrative doctors are covered by insurance altho some of the tests/treatments they use may not be we were referred to ours by our acupuncture therapist you could also try googling Integrative physician for your location and see what comes up keywords like "alternative doctor" can also bring results do also look at the pinned thread at the top of this forum for Finding medical help in case you can find a doctor in your area from that sadly, most regular doctors will probably dismiss the tests and treatments we discuss here

sorry hit submit before finishing it is fine to do the Kid's Calm and epsom salts baths together I think best doctors to deal with all this are naturopaths, integrative, environmental type physicians. Some also go to DAN doctors, who primarily work with autism, but often can help with the tic spectrum disorders too I prefer Integrative doctors as they are conventionally certified yet also have specialized in more natural and alternative methods

Hello Mar I have found the lowest price for all the Natural Calm products to be http://www.iherb.com

he's a lot better than he was when this flare started but still not back to the stable place he likes to be...so yup, we are hopeful for a calming of the "edge" he has been feeling to return once the moon has done its show tomorrow I am trying to talk ds into starting NAC as I really think he will benefit from it, but he is reluctant to try anything new until this has waned sooooo i will report back if he agrees and on the results we see

Hi Michelle and welcome it is good that you are checking into possible causes for the tics as the earlier one can start correcting things that can be corrected, the better we arent doctors here, so none of us can make diagnosis, whether for TS or PANDAS or any of the many things that can trigger tics, but we try to share our experience in the hope that it can help others usually Tourette runs in families and so if there is no family history it would be wise to consider the other possible causes. Even for those with a genetic predisposition, many other things can trigger the tics/OCD etc do be aware that "specialists" and neurologists and most conventional doctors tend to be either quick to give a TS diagnosis or say that it is likely "transient tics" and will probably go away and tell you to come back in a year for a TS diagnosis so dont be alarmed if that is the outcome of your visit there are so many issues that can cause tics, that it would be important for these things to be investigated fully we have had parents here whose children have manifest like yours who have found that food allergies are at the root of the symptoms and other have found it to be PANDAS/strep, others who feel childhood vaccinations were a trigger etc etc many things to look at it is a good idea to try to find a doctor who is clued up about all these other factors and begin testing and checking we are all here to offer as much help as we can. all the best

Hi Beth I moved your thread to our PANDAS forum as you had posted it on the Autism board The parents here are at the forefront of the info on PANDAS so I hope you will get much support and info to help your child all the best

yay! I love reading posts like this congrats to your son and a big congrats to you too CP....he is what you have helped him to become

Bonnie just as an FYI, when my son's OCD is waxing....he doesnt necessarily have it all the time, but usually more at night and early morning. and yes, he describes it as a generalized anxiety feeling sometimes without any known reason. In his case, playing one of his musical instruments or a fave video game is usually his best distraction I will be glad when this weekend with full moon is over!

agreed Michael! I think the most liberating moment for my son happened when a psychiatrist who was helping him with CBT explained to him that the OCD he had was "tourettic" he showed us several research papers documenting that the OCD that is comorbid with TS is a different "subcategory" from classic OCD. it is often very hard to differentiate what is a tic and what is an OCD and they frequently "morph" and manifest in all those emotional/behavioral other stuff too.

when my son said "my mind is telling me....." it always seemed OCD to me I think that OCD often manifests as anxiety and/or depression as well just like TS has become caricatured as a "cussing" disease, I think OCD is oversimplified by the concept of neatniks or rituals etc. frequently the thought processes seem to manifest as other emotional/behavioral stuff IMHO...at least that is what I have seen with my son over the years. when he is in OCD mode, his nerves are generally frayed and he is edgy, anxious, easily flustered, short tempered, depressed etc etc etc

I wonder too if something in the way their body/mind functions makes them more susceptible to other stuff at this time of year? just reading thru our notes ...it is always the last quarter of the year that seems the worst my son's recognizable "onset" was in late December but our notes show Oct always seems to have a spike, although the first year he was on the meds, he went into the hospital in crisis late December, about a year since his "onset" His birthday is in early December Full moon is this Sunday...so just hoping he stays stablilized. The upping of the inositol really helped. he kept it high for 2 days and back down now again sadly, as happens with stress, he had a mild Crohn's flare following all this ):

my son successfully uses a curcumin blended with boswellia for his crohn's inflammation (Boswellin by NOW foods) in addition to being anti-inflammatory, boswellia is also helpful with OCD he also uses white willow bark and ginger for their anti-inflammatory properties

thanks Patty no I dont believe that is the case as his diet is exemplary and should he have developed food intolerance, I dont feel we would still be seeing this marked improvement as he is still eating the same as he was before the flare. this flare wasnt gradual...it was a full blown and very sudden explosion! I do feel the chemical exposure to a freshly pesticide garden at a friend's house contributed to this waxing tho

welcome Schnauzer as faith mentioned...these may well just be transient tics in your youngest too. But it is wise to maintain a realistic view when there is a history of TS My husband's family has a TS history. Our oldest son does not have TS but does show mild OCD, and did have a few transient tics when he was young (now 23yo) Youngest son, now almost 20yo, has full blown TS/OCD/ADD and a bunch more. His tics fully manifest around 10yo, altho we realize that he likely had them younger, we just didnt recognize them as tics (husband and grandpa got the dx after son was dx...they had no idea that what they had was called Tourette Syndrome) My son tried meds for a year with horrible side effects and then showed great improvement from the alternative treatments. If you are interested, I have documented what helped my son in the thread linked in my signature I think it is never too early to begin a careful diet and environmental modifications. It is hard tho to modify diet in a picky eater but perhaps you could try to just get rid of any artificial additives and "junk" food to start. Altho many kids with TS do have dairy, gluten and other food intolerance, many also do not (eg my son) so no need to cut those out unless you see reactivity to them we do have a number of members who have found that flashing and fluorescent lights are tic triggers and so that may be the reason he blinks so after watching TV. Our solution to that was ensuring a daylight lamp always on so my son never watched TV (or used computer) in a darkened room. He limits going to the cinema as that is still one of his big triggers...likely the flashing in a dark area along with all the perfumes etc do just remember, 3yo can have tics for many reasons so try not to worry. Do you know it your child was exposed to strep at all? Any recent vaccinations? hoping these tics will pass quickly so you can be relieved of the worry

Hi my son isnt dx with PANDAS but is with TS/OCD and Crohn's he is almost 20yo now and has been having acupuncture since 11yo and finds it by far the most beneficial therapy, as he gets immediate relief when in flare etc We have an acupuncture therapist who is clinically trained. Be careful in choosing the therapist.

all done I left the original title as subtitle so anyone who had seen it before could still find it good that you are getting a 504plan remember that you as parent have the right to call meetings at any time, including in the beginning, to make sure the 504 is correctly structured to help your child and then implemented to provide the accommodations she needs my son had one for his TS/OCD/Crohn's and it made a major difference in helping him at school. I did not hesitate to contact the school to call a meeting with one or more teachers if they were not implementing it correctly based on the accommodations recommended by his doctors and my input. I also insisted that the school nurse be present at all the meetings

Hi Susan lol kids!!! I can fix the title for you...just let me know what you want it to be

Hi faith yes we have had flares that have made me wonder, including the current one I have documented on TS forum a few times we even did throat culture no sign of strep however, being as he has Crohn's which some feel is caused by microbes (mycoplasma) and that he did test +ve for epstein barr, tho no history of mono...I guess he is more PITANDS than PANDAS but there is clearly the genetic component as well, plus the fact that he doesnt require antibiotics to improve from the mysterious waxings that have come and gone quickly over the approx 10 years we have been dealing with this

my son was a patient of Dr Murphy in 2000-2001 when she was still at Shands Clinic in Gainesville Florida I took him to see her becasue of the dramatic onset of his tics and OCD etc around his 10th birthday I liked her very much, but do sometimes wonder if she was too quick to rule out a PANDAS dx based on his history (no known strep) and blood work. Once she had determined he was not PANDAS, all we were offered was more antipsychotic medications for his then intense TS/OCD my son actually bonded well with one of her psychiatric interns at the time, who we continued seeing (quite a drive from n Orlando area) as he really helped my son with CBT and coping skills, and was the one who helped us wean him off the drugs when we started the natural treatment protocol I know Dr Murphy was at the forefront of PANDAS research at the time, and so imagine she has stayed in tune.

CP my son mentioned last night that he wondered if them blasting that rocket into the moon's surface recently could have also done something to our atmosphere

nope, tics are pretty stable...only the OCD flaring and kinda triggering those tics that morph with it he has more than likely been exposed to illness at various activities etc...but he hasnt shown any symptoms of anything. I specifically asked if he knew if any of his friends had strep but he didnt think so. seems mainly colds and flu doing the rounds here. He has no sore throat or fever or anything else and even tho the last wisdom tooth is emerging, it doesnt seem to be bothering him he currently has an online job and not at college yet so he isnt exposed to workplace or school bugs at present. He personally feels it is "harvest moon" stuff that affects him at this time of year. he is acutely aware of the moon's phases and actually ups his own supps as full moons occur he is back up to the 16gm Inositol each day and definitely feeling the benefit

Thanks Meg'sMom yes, we have. He had it as part of his CBT son is almost 20yo now and been dealing with OCD since he was very young so we have accumulated quite a library of books and resources and methods he has excellent coping skills, thanks to the CBT he underwent, and as mentioned above, it is much much better than it was years ago before we started the supps and CBT etc I am mostly looking for input on whether anyone else notices OCD flares around this time of year as it is a pattern we have noticed.