Chemar

Hi Santi yes, it is an excellent book and was written by our own Sheila Rogers here is more info on it http://www.latitudes.org/book.html

blurting out words or phrases is a recognized TS tic http://www.tourettesyndrome.net/Files/CommonTics.PDF

bubbasmom special ed doesnt mean the kid isnt bright or not good at academics...high IQ gifted kids can also be in special ed when they have health problems or other disorders if your child doesnt need the IEP for academic stuff, maybe consider the plan 504 that covers so much other territory for accommodations it really is worth fighting for IMHO, especially when you are dealing with someone like this principal sounds there is another recent thread here http://www.latitudes.org/forums/index.php?showtopic=7783

oh yesss! the school district makes a big difference in the ease of getting as well as the accurate implementing, of any accommodations. we have a great school district and they went out of their way to provide everything my son needed most rather than a case worker, he always had his counselor, the special ed administrator and the school nurse available to him at any time of the day...all he had to do was ask to be allowed to go to see them. And they in turn communicated with me regularly at one time, when he was newly dx with Crohn's and in severe inflammatory pain, we had a period of months where he was only attending some classes and doing the remainder at home with notes and email/phone contact with his teachers. They were wonderfully compassionate and caring however I have heard nightmare stories about other school districts where parents have to fight, and sometimes even bring in a professional advocate, to get what their kids need! even now, with Tourette Syndrome legally covered under the Americans with Disabilities Act for educational purposes (IDEA) some parents are still having to fight for their child's legal rights we used an independent educational psychologist for all my son's evaluations. Some of the free evals done by the school psychs can be excellent....but sadly again in some districts, it almost seems that they want to prove why the child should *not* get accommodations than to try to help them get what they need! My son was also in gifted program, but yes, even gifted kids can sometimes require an IEP as they just may learn differently or have their academics severely affected by their health/disorder He was better served by the 504 I think is that his academic accommodations needed were very few (eg the handwriting, position of seating in classroom, and a few other things) but the accommodations he needed relevant to his specific health and TS/OCD related issues were paramount

perhaps it varies from state to state or related to the type of disorder/illness here, the IEP is related to special ed classes which my son did not need, even tho he does qualify re the ADD and CAPD. He primarily needed accommodations for health, and the tics, behaviors, emotional/mood issues that accompany TS/OCD as well as for the physical illness that comes with Crohn's Disease. Those accommodations were not covered by his IEP and so they advised us to switch to the 504 plan. he had the IEP in elementary, and began the 504 in middle school, carrying it thru highschool. We found it a much better plan for him than the IEP had been Chemar -- Curious as to what that means, "doesn't cover the emotional and other health related issues the way that a 504 plan does." We haven't run into any troubles or conflicts in that regard, and the IEP is inclusive of additional services (like a caseworker on site who helps DS advocate for himself, etc.) that the 504 was not. Our classification with the IEP is still OHI, or Other Health Impairment, just as it was with the 504, as well. From everything I've read and heard elsewhere, as well as with our own person experience thus far (though admittedly limited), the IEP seems to help every bit as much as the 504 and then some. Can you give some more specific examples so I know what to be on the lookout for?

just wanted to mention that my son carried the 504 all the way thru end of highschool. we were advised not to switch back to the IEP as it doesnt cover the emotional and other health related issues the way that a 504 plan does. One can still have the same accommodations provided in an IEP for academic issues built into the 504

yes, absences and even arriving late can be added. this was especially helpful for my son re the Crohn's which was often worst early in the morning. A doctor's letter explaining really can be very helpful in getting the needed accommodations

our personal experience with neurologists was not good so I am biased if you suspect seizure activity or feel you child is in any form of danger from the tics then it is worthwhile going otherwise, and especially as the tics have not been there for a year (the clinical definition of TS is one year of both motor and vocal tics waxing and waning) you will likely either get a hasty diagnosis and a prescription for some drug, or be told it may be "transient" and to come back in a year very few neuros recognize the natural/alternate treatments and most likely if you mention it you will be told it is quackery with no evidence

my son was older when we started it all so it was easier. he understood and was able to see for himself which foods etc were not good for him and he felt the positive effects of the supps so took them willingly are you removing video games because you have found a trigger there? we have not ever restricted my son from his games, instead we have used daylight lamps and LCD screens to reduce the flicker effect

((((((((((((((((((((Ronna)))))))))))))))))))) how wonderful to hear from you and especially the encouraging news! I have thought of you often and how you truly were one of the original pioneers for PANDAS here love and blessings to you and your family

this is the TSA section on education strategies and accommodations that may be helpful to you...there are a number of sections there so be sure to check all http://www.tsa-usa.org/educ_advoc/education_main.htm for my son's 504 we had many accommodations related to all of his health issues, including the tics and OCD and his Crohn's I had his doctors also write notes on things like need for bathroom visits to not be restricted, and for the teachers to allow him to leave the room if he felt a tic storm coming on. He had accommodations for handwriting and was allowed to turn in typed homework because the OCD caused him to write over letters till they were "just right" etc there were many more basically you need to ask for accommodations for everything that you feel he needs, and also remember you can call a meeting at any time to ask for modifications to the plan. with a PANDAS child there may be additional issues of emotional volatility etc that need covering

glad to hear things went so well at the meet Kevin dont forget those epsom salts baths for not just the tics, but tired worked out muscles as well !

hi Michele if he has been on antibiotics without probiotics then that could definitely cause a problem I wish doctors were regulated to have to rx probiotics whenever they write a script for the antis

Hi again I didnt notice reference to the vaccines when you posted on the TS forum but there are a number of anecdotal reports there of parents correlating the onset of tics with a round of vaccinations if you search there with the keyword vaccination or vaccines you should bring up a lot of posts. it seems for some kids with susceptibility, that immune reaction that the vaccines bring can also be a tic trigger that is not to say that you should not also explore the very real possibility of an infection connection! it does seem that at least for some of our kids, there can be more than one trigger at work to compound their condition

Hi if you do a search on this forum you will find many threads related to increased tics because of environmental allergies some parents have had success with NAET. search Patty's posts for more info HTH

licking is a recognized tic calling out a tic can cause it to intensify. especially with children, they should never be made to feel they are doing something "wrong" when they tic, as tics are involuntary and it becomes majorly stressful when they feel they have to control a tic because it is upsetting someone else there are ways to gently help with socially unacceptable tics, or ones that can cause harm. cognitive behavioral therapy can assist with this

it depends on what the tics are caused by if they are Tourette Tics then they are involuntary neurological reactions and not behaviors, and so the tics themselves cannot be "cured" by behavioral therapy of the kind you describe IMHO behavioral therapy can help with coping mechanisms related to tics, but has to be done very carefully as often drawing attention to a TS tic makes it manifest more strongly most people with TS do "accept" their tics and often are less aware of them than others who are noticing them

Hi the only accurate way to determine hormone levels is by blood test so your doctor checking for hair etc is a bit odd to me, as yes, that can indicate whether the androgenic hormones are elevated (as in puberty) but would not be a clinical test for "hormone abnormalities" IMHO

Hi and welcome where I absolutely agree it is always worth checking whether there may be PANDAS or PTAND, yet there are also many other possible causes for tics, including genetic Tourette Syndrome, allergies( food and/or environmental), photosensitivity, TMJ and many more, as well as the ubiquitous "transient tics" I do think that doctor was too quick to give a TS diagnosis tho, and hope you will keep looking into other possible causes

???I am not seeing this thread cross posted on the PANDAS forum, or am I missing finding it there?

I do think it is very important to remember that when OCD is occurring as a comorbid or resultant condition with something else, that it frequently doesnt manifest in the "classic" or "textbook" way we learned this the hard way with my son's Tourettic OCD, and our psychiatrist explained how OCD occurring as part of a syndrome can manifest variably, and not always be recognized in the way the more defined parameters of "classic" OCD are I would think this is the same for the PANDAS child

many people with Tourette Syndrome exhibit a type of blending or morphing of tics and OCD where a tic can become OCDish and an OCD symptom can trigger a specific type of related tic. A doctor we saw some years back showed me research related to this "subtype" of OCD unique to people with TS and called it "Tourettic" OCD as mentioned in my other post above, Cognitive Behavioral Therapy (CBT) is I think one of the very best ways to help kids with neurological disorders that manifest with difficult behaviors. It helps them find coping skills without having to suppress my son had very severe TS when younger and he manifest full blown coprolalia, which shocked me no end as we are not a cussy family and he wasnt exposed to bad language from TV or movies, only peers at a smaller church school. The CBT really helped him find sounds to make to cover the words he felt compelled to say. One cannot tell someone with coprolalia to not do it...that only makes that urge to do the tic stronger, as with any tic suppressed. My son's therapist helped him disguise the words with other sounds so he still had the release of the tic, but no one knew what he was saying and thought it was just one of his other vocal tics as a mom who hates bad language ...............it was very hard for me to accept it and let him release privately at home. But I had to learn that, again as with any tic, he needed to have a safe place to let it out, and that he wasnt trying to use bad language...it was like any tic...there and needing to be released! as he learned more CBT, so even at home it became less bothersome the CBT really is a very good treatment.... just be sure to "interview" the therapist yourself first before taking your child to first appt. as a Mom you will quickly know if this person will be able to communicate with your child well. You may have to try a few till you find a "fit"...but the benefits are really worth it IMHO...not just temporarily but also because it teaches the person lifelong skills and enables them to basically do their own therapy in future because of the techniques they learn.

hi Michele coprolalia (inappropriate words) is a recognized TS tic. Not well understood but nevertheless a tic and as with all tics, involuntary touching and inappropriate gestures can also sometimes be tics http://www.tourettesyndrome.net/Files/CommonTics.PDF here is some helpful info re behavior and neurological disorders in kids http://www.tourettesyndrome.net/behavior.htm if there is also Aspergers then behavior/mood issues can be more intense Cognitive Behavioral Therapy can really help a lot with teaching coping mechanisms and social skills, but one does have to find a therapist who also understands the involuntary nature of TS tics and the association with OCD etc. Trying to suppress a tic can often result in a more explosive release...so the therapist needs to know how to teach the child to be able to still release the tic, while covering the socially unacceptable expression

Hi some members have found it helpful I think Patty has done extensive homeopathic treatment we have used homeopathic remedies for other things but feel the agaricus remedy given to my son by a homeopath prior to his dramatic onset may actually have triggered the onset of his TS. This was suggested by another homepath who is also an integrative MD. She felt agaricus was a very wrong remedy for my son to have been given. so one does have to be cautious and also, if you see a homeopath, be sure they are fully qualified in classic homeopathy

Hi my son is not PANDAS. He has genetic inherited tourette syndrome, which my hubby has too (grandpa and greatgrandpa as well) We believe he also is likely PITAND (similar to PANDAS but triggered by infections other than strep, in his case Epstein Barr virus) in addition he has Crohn's Disease, which may also be associated with mycoplasma My son's condition has been pretty stable and mild for some years now (he is 20yo) due to a variety of natural treatments that we have used (see my siggie link if you want details) one of the natural antibiotics that he takes is Monolaurin, which is also lauric acid/lauricidin. extracted from coconuts. We use the Cardiovascular Research brand that I get at our local The Vitamin Shoppe. It is considered a pretty full spectrum antimicrobial. Interesting to also discover that lauricidin is produced in breast milk to function as a natural antibiotic for newborns (he also takes olive leaf extract and candida clear (contains assorted antimicrobials including oli of oregano, capryllic acid, pau d'arco, wormwood etc) and the amino acid L-Lysine, a potent antiviral There are also a lot of natural antibiotic foods like garlic, honey, turmeric and probiotic stoneyfield farms yoghurt, kefir. I do know a number of people who feel colloidal silver to be very beneficial as an antimicrobial. The only problem is one cannot use it longterm because of the silver depositing in the skin many of the PANDAS children here are very ill tho, and do seem to need the full strength of prescription antibiotics.