Chemar

Hi it's hard to single out the craniosacral as my son would have acupuncture, craniosacral and reflexology in the same session he becomes very very relaxed from the treatments and has immediate relief from tics afterward we have other parents here who have mentioned the good results they see with cs

we get our Natural Calm from iherb.com or from our local The Vitamin Shoppe. I order most of our supplements at iherb as prices lowest even including shipping my son was over 100 lb and took 500mg L carnitine a day, with his magnesium and taurine. the magnesium taurate you are giving is a good "staple" for tics (provided no taurine sensitivity) so good to continue with that

mom2a in many cases intrusive thoughts are related to OCD /serotonin imbalance. We have a sticky thread here re natural ways to treat OCD and also to sites with Cognitive Behavioral Therapy info http://www.latitudes.org/forums/index.php?showtopic=1963 where dietary and supplement changes make an enormous impact in improving things, therapy is also a valuable tool. Although my son has never had the level of intrusive thoughts discussed on this thread, he was enormously impacted by aspects of his OCD that had unwanted thoughts in other areas. Getting his serotonin/endorphin levels elevated as well as the CBT really helped him cope. We feel cleaning up his diet of all chemicals and supplementing correctly played a very important role in the synergizm that has led to his OCD being so much more stable, and so calming those intrusive thoughts

Hi and welcome I split your post off the pinned thread as that is more for linking useful sites and threads, not discussion I have never noticed my son having any pull toward looking at the sun probably a good idea to have your child wear sunglasses while outdoors till this passes

our acupuncture therapist does craniosacral...very beneficial for my son never tried the visceral

yes, I reported back in 2003 that one of my son's biggest tic triggers is chlorine. it is also documented on Sheila'sarticle about the ACN survey on triggers for tics http://www.latitudes.org/articles/finding_triggers.htm

I have often wondered why my son (and myself plus older son) react to B complex with a digestive response(constipation) and spacy feeling? we can take multi's with all the B's in them, but if we take a single B co tab we suffer consequences. we have also been able to tolerate royal jelly queen bee supps, even tho it is loaded with Bs. son tolerates P-5-P better than B6 and he doesnt react well to too much niacin (beyond that in the multi) I guess it is the same with fishoil...it makes my son tic more but some people with TS seem to really benefit from it. He takes flaxseed oil instead, used in diet rather than a supp He feels lately he is sensitive to nuts, especially pnuts, more in terms of his digestive issues re Crohn's than re his tics. so he now avoids all nuts which is a pity as he used to benefit from the walnuts/serotonin

if you feel you "have to do it" it may be OCD morphing with a tic this is fairly common is TS and such tourettic OCD can last for long periods

it depends on the drug myrose i dont know anything re topamax other than usually used for seizures/epilepsy have you determined what the rash is yet? hope all this goes smoothly for you and your little one

According to classification, not all TS is genetic, tho I often wonder if many are misdx with TS when their tics are in fact due to something else. even if no one in the family that you are aware of has tics, OCD and other neuro issues can be manifestation of the genetic susceptibility

checking things is usually indicative of OCD if you have a TS diagnosis, it could be you have what is known as tourettic OCD, where the two can freqyently morph into each other

Hi waxing and puberty seem to go together with TS...it's probably the steroidal hormones seems he is getting waaay more calcium than magnesium and magnesium is what is believed to predominantly help with TS tics. Perhaps adding another source of magnesium....my son likes his natural calm in the evenings. We were always told 2:1 cal:mag but I know some docs recommend a closer matched ratio. my son doesnt take extra calcium beyond what he gets from his Jarrow multi-easy shake and diet. he doesnt have dairy allergy so mixes shake with milk and eats a fair amount of cheese L carnitine is usually suggested when vocal tics are waxing...it helped my son a lot initially. as he got older he said it made him feel weird so he didnt take it again. but it sure helped control a screaming tic he had when younger and we sure appreciated that!!

yes being anxious or stressed can trigger tics as well as that feeling of shortness of breath & tightness in body

Guy you symptoms sound very much like what my son used to have he is dx with Crohn's (confirmed by colonoscopy) he has managed to keep it in remission by careful diet and specific supplements from what I know, the skin test seldom reveals GIT tuberculin infection http://emedicine.medscape.com/article/376015-overview let me know if you would like any of the info on how my son is keeping the Crohn's under control

it's a nicely summarized article of stuff but it really is mainly a copy of much from Sheila's book http://www.latitudes.org/book.html The triggers for tics is direct copy from the list at the bottom of Sheila's 2003 article http://www.latitudes.org/articles/finding_triggers.htm but good to have it all together

myrose, could you possibly have pasted the wrong link for this? there is great info on the link you posted but it doesnt mention ACN nor tests etc for tics/tourette that I can find??

Melanie, doesnt he also have PANDAS? or was that just something you were trying to rule out if PANDAS it is an entirely different scenario and yes, so is Aspergers untreated allergies can severely disrupt the system and also prevent supps etc from working correctly as the body is continuously waging war on allergens have you ever tried Cognitive Behavioral Therapy?

Thanks Faith and Tom's Mom It is hard to relive it but at the same time brings such relief to see how far he has come! Most people meeting him now dont even realize he has TS. Melanie we had a long and hard withdrawal from the meds....titrated down and then many months where withdrawal symptoms still present even tho he was already off the meds. But we persevered and fine tuned the supplements and dietary changes plus regular acupuncture, reflexology and biofeedback detox along with those oh so valuable epsom salts detox baths. Patience, perseverance and prayer were what got us through those months of readjustment.............. I will never forget the joy I felt when I saw those dull glazed drugged eyes regain their sparkle There is an excellent book by Dr Peter Breggin called Your Drug May Be Your Problem.

myrose you can find kefir in different flavors(all natural) in the organic section at all Publix stores. the plain one is also good with honey

the worst was after starting the meds and during the year he was on them. some of his tics were intense prior (and possibly what some who are used to very mild tics might have considered quite severe) but they were not horribly injurious as they became on the meds and most were the eye blinks/rolls and shrugs, squeaks etc. He had stuff like neck whiplash tic and the teeth grinding and some loud vocals etc. before....scary but not in the same league of horror as what followed starting the meds IMO the meds are what triggered the severe tourettic OCD as well and that is what turned things into a living nightmare we were med free for the first year after the TS dx then on meds for a year after being bullied by a neuro and psychologist in tandem with the private school he was at within 2 weeks of starting Haldol he was in hospital after repeatedly and uncontrollably biting right thru his lower lip. they strapped him to a bed and IV pumped him full of more haldol and then added luvox to the mix and told me he would probably need to be institutionalized and that the only way to prevent that was more meds. I was so traumatized by what was happening I listened to them instead of following my instinct that the meds were what was causing psychosis and intensifying his tourettic OCD. I am not going to list the self injurious tics that progressed thru that awful year on meds as I dont want to trigger anyone but they were horrific Haldol, luvox, naltrexone and finally zyprexa...from bad to worse side effects I know some probably roll their eyes when I continuously caution on the posts of med use for tics, and I realize some people have been helped by meds.....but I cannot in good conscience stay silent after what happened to my son. I still feel tremendous guilt because I should have known better especially with my own education and personal experience with naturopathic medicine. I allowed desperation to cloud my vision and believed the "professionals" when they told me only meds could help my son. that is why I still come here to try to help. My son has been fine for a number of years now. but if my sharing what helped him can spare just one other child the agony of what he suffered on those drugs.....it is more than worth it!

I understand Faith and sorry if I sounded upset...I guess I just went thru the pain of this so intensely that it makes me hypersensitive when I think maybe there is misunderstanding of just how involuntary some severe tics are yes, of course there are some who try to milk their condition by using it as an excuse for stuff and yes, as responsible parents we do need to try to impart social skills to deal with this...that is why both my son and I were together often in the CBT sessions so I could learn how to help him cope too not having seen the show i cant comment specifically on the girl filming and saying boobies repetitively but that would be a mix of coprolalia/echolalia if in fact a tic. my son had really bad coprolalia at one point which was awful for us and especially for him. as we dont cuss it was shocking that he even knew some of those words even more shocking that he learned them at his private Christian elementary school thankfully when he started the CBT and he learned substitute words/grunts and really was very good at masking them. But honestly, I saw his struggles and held him when he cried himself to sleep over his helplessless in blurting things out nomatter how hard he tried and learned his biggest heartache was that he felt he was disappointing me and God. I went out of my way to reassure but I know those scars are still there, even tho his life is so much better now anyways, yes, I wish we could educate more parents and doctors about the things that do help....more reason to say kudos to Sheila et al for her book and conferences like the one they just had

Faith I was really surprised by this response as it seems to me you may not ever have been in company of someone with severe TS. It may be educational if you went to a TSA meeting in your area to see for yourself what some suffer INVOLUNTARILY. Sometimes, suppression just isnt an option and yes, sometimes with coprolalia the words are very hard to suppress too. That is one of the reasons cognitive behavioral therapy can be helpful in teaching these kids coping skills. But to tell a kid with coprolalia that their "behavior" is inapropriate is like trying to tell a kid with a blinking tic to stop that immediately A tic is a tic is a tic and just be thankful then that you have never had to deal with the severe or embarrassing ones. Many a kid with a broken heart over being punished, reprimanded or ridiculed for severe tics that they *cannot* help would tell you they would give anything to have "control" over it, and that telling them to stop or drawing attention to it is often the biggest trigger for more. I am so very thankful that my son had an excellent CBT mentor who really helped him, plus that the dietary/supplement modifications have helped so too, but I know that even with training, and all the good stuff we try to implement, it was still very very hard to suppress some things and caused him a lot of emotional trauma when younger. remember too that most of the kids who are in these "documentaries" are likely either on meds (which we saw bring out the worst tics in my son!!) or untreated and possibly eating junk 3 x day etc etc so subject to multiple triggers I guess it takes living with severe TS to fully understand just how hard it really is for some. One of the reasons the TSA is advocating for full disability status for those whose tics are so severe that they seriously impair normal functioning. I thank God daily that my son is no longer in that category....but he was, and tho I havent seen this show, I have a feeling that some of his early tics would have left you in shock.

Hi Jen and welcome my son is now finished with school, but we had him on accommodations even before we had the official TS diagnosis. In elementary he was on an IEP, primarily to help with his attention/focus probs as well as the auditory processing. simple things like a desk near the teacher and her making eye contact when giving him instructions and helping him stay organized were a great help.He also used an AlphaSmart in 4th & 5th grade and being able to type assignments as his tics and OCD affect his handwriting(OCD= "has to" go over letters till they are "just right") Middle and highschool we had him on a 504 plan which I feel is the best way to go with our kids. We had regular meetings where all the teachers had to be present and where he and I were able to articulate his needs and they were most helpful in accommodating them. Each child learns so differently and has specific and unique needs, and the 504 plan is so good for that Our highschool even allowed him to discreetly keep a small piece of (healthy!) candy in his mouth during class as he has found this helps him keep the vocals down in social situations. teachers allowed him to leave the room via a hand signal if he needed a quick step outside to release more noticeable tics. He was an A student thruout school but did need some accommodations re learning because of the writing mentioned above as well as his ADD/CAPD etc as Tourette is now legally classified as "other health impaired" under the Americans with Disabilities act, schools are obliged to provide accomodations within reason here is more on it at the TSA website http://www.tsa-usa.org/educ_advoc/education_main.htm

Great reporting Caryn I am really looking forward to the updates etc so sorry I couldnt be there...I really wanted to go so much, but it just couldnt be.....hopefully next time! Sheila is a rare gem, isnt she Our family have a deep gratitude for her as my son's life was restored after I found that issue of Latitudes all those years ago, when desperately seeking other ways to treat him apart from those awful drugs and their horrid side effects. (((((((((((((((((Sheila))))))))))))))))))

Jack it just occurred to me that often with antibiotic, one can get that "furry tongue" feeling as the antibiotic kills off "good bacteria" in the mouth too.....now maybe your son feels that and so it triggered the teeth on tongue tic for him? Are you giving him a probiotic as well? that is essential when taking antibiotic to help restore healthy microbes. Some people use the supplement kind....we have always used plain kefir and yoghurt. I am not sure if anyone who may have PANDAS can use those...other parents here would know I think.....but all will agree a probiotic is important. It is recommended to always give it at least 3 hours before or after the antibiotic