Chemar

Deanna the Kid's Calm has magnesium plus Vitamin C and zinc the Natural Calm is just magnesium citrate both are in the ionic form so are quickly absorbed there is also one that has calcium and magnesium I found iherb cheapest but sometimes my local The Vitamin Shoppe has it in sale as well http://www.iherb.com/Peter-Gillham-s-Natural-Vitality

a lot of kids with neurological issues also have photosensitivity, possibly related to sensory integration dysfunction We don't have wireless controllers and my son is definitely worse off after playing. It is somewhat better when he plays on our flat screen versus the old TV, but regardless it affects him. TV, computer, DS & movies all affect him negatively.

Hi Lyn this chart at Leslie Packer's excellent TS site may help you differentiate between simple and complex tics http://www.tourettesyndrome.net/Files/CommonTics.PDF re the "fun" tic, I think it is may be more his way of describing the relief that comes from releasing the tic....

Wombat I think we had tried to answer...it sounds like tourettic OCD and yes, many people with TS experience similar symptoms. here is an article on Tourettic OCD http://focus.psychiatryonline.org/cgi/content/full/5/3/361 are you taking any supplements or meds for the tics & OCD? Cognitive Behavioral Therapy is very helpful for tourettic OCD

the jury is still out for me on this until I know more about it cognitive behavioral therapy helped my son tremendously with OCD and he did learn a lot of very helpful techniques on tic substitution etc... if this is similar, then "yay!" but if it involves anything more like forced suppression or habit reversal that is not by someone experienced with the involuntary nature of TS tics, then I am very wary of it. saw what a brief time with a psych who tried those on my son did and have heard enough similar not good reports from others. Prolonged suppression of tics can sometimes cause waxing of OCD and other co morbid symptoms. We saw that with my son. I know the term habit reversal has taken on new meaning in modern psychological jargon, but I must say I personally dont like the terminology as tics arent "habits", they are involuntary neurological reactions soooo hopefully this study will lead to good treatment almost anything has to be better than the TS drugs IMHO!!

hi i think this is one of those areas in treatment that are so variable depending on the individual and the severity of their symptoms, plus whatever co-morbid disorders/illnesses may be associated my son has been on variable combinations of supplements since 2001. Prior to that he took a multi and got the rest of his RDAs from his food since starting the specific supps "medicinally" we have sure learned a lot about his individual needs and even how those can vary too we have discovered that, as far as his Tourette tics and the associated OCD go, he needs his extra supplemental magnesium and one of the supps that naturally elevate serotonin. If he doesnt have those, we see waxing of both lots of symptoms. We have also noticed a negative impact if he stops his higher intake of omega3 and also the Bs, especially B6 & B12, He varies his serotonin supps, but I do know when he was on 5HTP and decided to come off it, our physician recommended titrating down as with a med, because especially 5HTP or tryptophan have a dramatic effect on serotonin levels. The rationale provided to us was that anything that is altering the neurotransmitters needs slower removal so that the system can modulate. In fact we do this with all supps now when starting or stopping them. a question...why are you giving 5HTP if there are no issues other than tics? Does your son have low serotonin? OCD? I see you are also giving Inositol, another serotonin booster? re the P5P, as long as he is going to be taking a multi that has the RDA for B6 it should be ok, altho as I mentioned, my son cannot go without his. my son no longer takes taurine and seems to have done fine without it, although some years back, when he started the supps, we found it was very important for him to have 500mg a day with his magnesium he takes way less supps for his TS/OCD now than he did back then and is doing great so I guess my answer is still..."depends" on your son's reaction to having the supps removed. really would be a good idea to withdraw them one by one over a period of a few weeks so you have a better idea of which are needed and which are not

hi Lynn...dont ever worry about posting a lot....that is how we have all learned here re the neurologist....honestly, from our and many other experiences here there are very few neuros who think outside of the med school textbook in that they will likely tell you to watch and come back, or offer you a quick diagnosis and a prescription for drugs. if you try to discuss things like diet and supplements, most often they will tell you that is "quack stuff" the value of a neuro exam is if you need to rule out more serious issues like seizures etc also if you need a diagnosis for insurance or school accommodations of course, there are also neurologist's who are in tune with progressive developments in alternative therapies etc. If you find such a one, you have struck gold

glad to hear things are going well Carolyn it also sounds similar to what our therapist does with biofeedback all the best

ADHD In Children: PESTICIDES May Be Missing Link http://www.huffingtonpost.com/2010/05/17/a...s_n_578366.html

ADHD In Children: PESTICIDES May Be Missing Link http://www.huffingtonpost.com/2010/05/17/a...s_n_578366.html

yes there is always the possiblilty of strep or any other microbe being a factor but if TS wasnt also a distinct diagnosis with clear dopamine malfunction then I would think that for example in the case of my son, it was treating him with a protocol based on Bonnie Grimaldi's program that alleviated his symptoms ie he didnt have antiobiotics (at that time not even natural ones) or any of the other PANDAS treatments but immediately showed improvement when treated with magnesium and natural serotonin boosters so again, no one is suggesting strep may not have been a factor for any of the family members...just the fact that my son improved with a natural TS protocol, coupled with the generational history of manifestation in males (another TS characteristic) coupled with no known history of strep in him etc I also know of enough other improvements for people with TS to feel not everyone with TS has an infection there are as I mentioned above, people who have TS who do not show any PANDAS-like symptoms and there are others who do that in itself seems to suggest again that TS may have a root cause different from PANDAS but that yes, some people with TS may also have PANDAS

nope, OCD and other symptoms apart from"just ticcing" are very common in genetic TS, although yes, some people with TS may only exhibit tics as their main manifestation, but from my research, it is less common to only have tics without some other issue or issues as well eg tourettic OCD, sensory dysfunction, learning disabilities, ADD/ADHD, CAPD, ODD, depression, anxiety etc probably related to the mix of genes

Hi are you referring to Central Auditory Processing Disorder? If so, it is a recognized learning disability and so accommodations should be offered for it

Hi good that the doc was willing to give you the rx for a longer period of antibiotics I dont think that TS and PANDAS are necessarily mutually exclusive ie I dont think it has to be either or in some cases but maybe a combination of the two from someone whose child does have "genetic TS" (long family history of it spanning many generations) I can tell you that the neuroleptic meds that are conventionally rxd for TS only made things worse for my son. They also had him on SSRIs for the OCD...again just a heap of nasty side effects so at this time, where you know you are dealing with PANDAS, treat that with what is known to help IMHO and dont complicate the healing by adding those TS meds with their potential for ick side effects, especially as you have no firm evidence that there is separate TS as opposed to TS like symptoms from the PANDAS there are numerous ways to help the TS side of things more naturally, and many of them can also be good complimentary treatments for a PANDAS child too, even if no TS, as where TS is known to be in some way resultant of a dopaminergic system malfunction, the immune/inflammatory connection seems very evident, so areas of overlap I have what helped my son documented in my signature link and there is a ton of info on the TS/tics board here that may be helpful for you http://www.latitudes.org/forums/index.php?showforum=1

Hi Giulia yes, teeth stuff is a recognized trigger, as is the chemicals in fertilizer and especially also pesticides. many kids with neuro probs also have multiple chemical sensitivity, so everything from perfume to pesticide can set them off. we have gone "natural" on all these for years and see very positive results...I sprinkle cinnamon and herbs in crevices and have a bug free home, and we use only organic gardening methods the hepa filter is a stand alone machine that you can put in his bedroom. you can also get others for separate rooms too, but the bedroom is the most important one to keep allergen free while he sleeps. there are also specialized air filters to place in the air conditioner return that help re the teeth, for some people it may be related to a misalignment in the TNJ region, while it is also thought that the actual inflammatory reactions and chemical changes with teeth coming in or out may be triggering adding a probiotic is very helpful re candida but to actually get rid of it one really does need something to kill the candida. modifying diet is helpful as that eliminates the substances that the "yeast" thrives on...primarily sugars and refined starches. we like Candida Clear by NOW, tho our initial yeast buster of capryllic acid worked well. just do be aware that eliminating yeast does bring what is known as die off when the candida releases toxins on dying....that is where the probiotic is so helpful in replenishing the good bugs to fight the bad ones, and lots of pure water and epsom salts baths aids the detox. TS tics do wax and wane so one tic can give way to another always add supplements one at a time and at lowset dose and then work up. 2-3 weeks is usually the timeframe to see results tho for some people it can be almost immediate

hi Lynn my son never took mag taurate but instead used magnesium and taurine separately with success. I dont recall how much magnesium is in the TS-plus but people with TS usually benefit from a higher dose I dont recall if you said you are doing epsom salts (magnesium sulfate) baths, but if not, highly recommended as a pre bed relaxant. The transdermal magnesium calms tics and the sulfates are excellent detox. 2 cups epsom in a tub warmest water..soak for 15-20 min we never used acetyl-l carnitine but did use the plain l carnitine very successfully for vocal tics as both taurine and carnitine are amino acids, if you do try them, start at lowest dose and only one at a time to be sure your child responds well to them, as different people react differently to different aminos

Hi Adrian and welcome first off I would say find another doctor as it astounds me that he would not have paid attention to the tics, which are likely the cause of the headaches! it is really hard to know why you have these jerking/tic symptoms, but it doesnt sound like Tourette tics to me. So many things can trigger tics, from TS to allergies to misalignment of in the TMJ region of the jaw etc etc etc to mention but a few you really do need a doctor who is more careful in trying to find out what is causing this. Maybe consider a DO or an Integrative Doctor as they tend to be more open minded and thorough IMO I do know that the kind of head/neck "tics" you describe can put your spine, especially the cervical region, out and that in itself can lead to headaches and other strange sensations, especially if your atlas vertebra is off balance. A NUCCA chiropracter may be able to help with that as they are highly specialized and do very careful adjustment, very different from regular chiro http://www.nucca.org hope that helps a bit

yes, Patty is a long time member so been part of many discussions on the TS/tics board here treatment really does vary very much with the individual and what other issues they may have cognitive behavioral therapy is considered to be the most effective foundation in treatment coupled with whatever medications or supplements the patient takes for their tics and OCD that is where the variations come in...many kids with tourettic OCD seem to react negatively to SSRI's, not because they dont need the extra serotonin, but possibly because of the mechanism by which the SSRI's work (selective serotonin reuptake inhibitors) for them, often supplements that help boost serotonin are more effective some take meds for the tics successfully...others have nasty side effects from them with very little help in reducing tics again, it is the individual genetic make up, biochemistry etc that makes a "one size fits all" treatment difficult my purpose in posting that study was more to validate the distinction, than to suggest a treatment protocol for us, where my son's tourettic OCD has always been far more bothersome to him than just the tics, a supplement program combined with CBT has worked wonders! he also has found acupuncture especially helpful whenever he has been in any type of waxing mode. (my signature link has details of our treatment protocol) i know Patty is already very familiar with a number of these alternative treatments...and she is in fact studying classic homeopathy at present

just wanted to also leave a link to a 2007 study which was one of the more recent ones I had bookmarked on this *distinct* subtype of OCD, known as tourettic OCD, that seems to occur in some people with Tourette Syndrome. http://focus.psychiatryonline.org/cgi/content/full/5/3/361 The physician who first made us aware of this is 2001 had lots of journal references as well I guess I am stressing this asI think anyone who suspects TS should be aware of it and remember that it *is* distinct from "classic" OCD, not so much in the manifestation (eg the repetitive, just right, have to stuff) but in what is likely the root cause, and where that overlaps with the tic origins in the brain. so the cause of the OCD behavior in the PANDAS child without TS may be very very different than that of the TS child who has comorbid OCD, of the tourettic subtype. Hope that makes sense...I know what I am trying to say but the terminology doesnt lend itself to easy description )

respectfully.....for kids who have Tourette Syndrome, OCD behaviors that morph with tics ARE classified as tics...they are known as tourettic OCD. Sometimes it is very hard to differentiate between what started as a tic and became OCD and vice versa so, as there is no clear diagnosis, I dont think one can emphatically state that "this IS OCD and not tics" when the two morph, the lines blur so, what may seem like "just OCD"...... in a child with TS may in fact be that blend of tics and OCD known as tourettic OCD and therefore be both a tic AND an OCD once again I am speaking from the TS perspective, and not in any way suggesting that this occurs when a PANDAS child with no TS exhibits OCD behaviors like these

Hi Lynn posting in a rush so just wanted to quickly say that yes, for many people who have tics, allergies seem to be a factor and for them benedryl does seem to help both with the allergies and the tics...be careful of the other anti-histamines as some of them seem to have the opposite effect and can trigger more tics. Also, one shouldnt be giving benedryl unless there is evidence of needing to give an anti-histamine...just mentioning this so that some desperate parent reading here doesnt run out and get benedryl in hope of it reducing the tics for her child! re the BonTech supps...they are pretty complete in terms of what is needed by people with TS...are you giving the TS plus as well as the mag taurate? I know she also includes a separate fish oil supp which is excellent source of omega 3 but do be aware that for some people, fish oil seems to also be a tic trigger. for them flaxseed oil or other sources of omega 3 are better. but if your child tolerates fish oil, then Bonnie's is one of the best as it is very carefully formulated do consider the possibility of a strep connection as it is a very real problem for many kids who have no family history of TS yet seem to suddenly manifest the symptoms. We have a separate board here for PANDAS and here is a website where you can look at the basics and see if anything fits http://www.pandasnetwork.org also, did you happen to make any connection between the onset of his symptoms and when he had vaccinations? hoping today is a day that brings light on your path as you seek to help your precious little one

Pat, does your son have a PANDAS dx now? was just wondering as you usually post on the TS/tics board not knowing if the dx has changed, I can only offer that what you are describing could be tourettic OCD where the tics and OCD "morph" in people with TS for my son, the serotonin boosting supps combined with the magnesium and B's really helped stabilize this

I based my son's initial treatment plan on Bonnie's research, long before she had her own Bontech range, and based on a "recipe" she had posted on her then single paged website on what she had been giving her child. The ingredients in the Bontech supps are designed for people with Tourette Syndrome, so unless a child has TS, it is unlikely that they will be fully effective I know that for my son it was like night and day the difference that giving him similar supps to Bonnie's made! Even tho I havent ever used the Bontech supps for my son, but I do know many people who do use them and they feel that they are really worth the money as they are very pure and also correctly formulated. yes, one can get all of the ingredients oneself, tho I do try to be careful of some of the additives in the grocery store shelf brands! and so I have been very careful to pick equivalent ingredients but in forms that have minimal fillers etc Magnesium has been a key ingredient in stabilizing what were once very very severe tics in my son, and the P-5-P he takes for his B6 is essential to his well being too Anyway, felt I needed to also add a bit of cheerleading as I owe an enormous debt of gratitude to Bonnie Grimaldi for so freely publishing her treatment plan all those years ago as it truly was a life saver for my son! it is great to see her research also now being helpful re this histamine info

you are very welcome....my repayment is any time a child might be helped by even the tiniest thing I may share about our experience. it was something my son and I agreed on when he first began to recover after the months of withdrawal from the drugs and we were seeing the positive reactions to the things we were trying....we will always do all we can to try to help other kids dose is always a tricky thing as it does depend on age, weight and individual biochemistry usually it is recommended to do half adult dose for under 12 older than 6, and the adult dose for carnitine is 500mg/day soy lecithin is excellent for the nervous system (it is listed in the supps we used initially-pg 1 of this thread) But it isnt enough omega 3. Borage oil has some in but it really is best from fish or flax...and as flax is out, maybe up his intake of wild alaskan salmon? (we get it frozen when out of season...avoid canned fish) I have also heard that some people who may be fishoil sensitive can tolerate krill oil better, and it is also high in omega 3. if you can get more comprehensive testing done, that is always beneficial, if only to rule stuff out have you done candida testing? often that gut "yeast" infection can be a tic trigger here is a compilation of "helpful threads" too in case there is anything there that may be helpful that you havent seen yet http://www.latitudes.org/forums/index.php?showtopic=2459

Hi Lynn just wanted to leave you a (((hug))) and say I do know how it feels when you first have to come to terms thast something may be not functioning the way it should in your child please try not to lose the precious time you have with him now by worrying about what may never happen! Many kids do outgrow "transient tics" and often there are easy to identify "triggers" for tics/OCD, like food and environmental allergies etc and even if it is Tourette....there is still much hope for a relatively "normal" life as I can attest, with my son now 20yo and doing great! He got a TS dx when he was 10, and in retrospect, had likely been exhibiting symptoms from infancy! i cant post long now, but did want to ask 2 things one is whether your child may have had, or been exposed to, Strep or another infection around the time this started and did you happen to notice all this starting after any childhood vaccinations? I have a link in my signature on the things we did to help my son over the years, http://www.latitudes.org/forums/index.php?showtopic=687 and we also have a pinned thread with links to other potentially helpful threads here http://www.latitudes.org/forums/index.php?showtopic=2459 hopefully that will give you some things to start looking into all the best...and remember....worrying isnt going to change a thing! rather put that energy into finding solutions and just enjoy your child to the fullest because these wonderful younger years fly by before you know it!