Chemar

DOUBLE???? the original price! wow is all I can say!

we havent used mag taurate...only magnesium and taurine seperately IMO the only problem with the mag taurate would be if you were one of the minority who do not tolerate taurine products

Hi as the others have posted, yes! foods can be major tic triggers my son doesnt have food allergies per se, but he does have MCS (multiple chemical sensitivity) and so exposure to chemical food additives can set his tics off dramatically. we have had a number of cases of parents who have reported tics resolving once they remove allergens

yes, for some parents eg Caryn who posts here on occasion, their kids tics have resolved by removing the offending agent, which in her son's case, was gluten. Just because someone has tics, it doesnt mean they have TS, altho sadly doctors often confuse by handing out a TS diagnosis before exploring other possibilities, again sadly because so many conventional docs do not keep up with the info re tics and other triggers, often negating it as "quack stuff". It is certainly worth trying the elimination diet again as if you see marked improvement that may be the issue for your child I should mention too tho that many kids who have TS ALSO have other issues going on. Although TS appears to be a genetic illness, yet not everyone who has the gene may manifest tics etc....I believe that the genetics gives the predisposition to tic, but something triggers the manifestation. Commonly, it appears that the androgenic/steroid hormones are perhaps that trigger as TS manifests more in boys than girls and seems to also manifest in the pubertal ie hormonal years. But exposure to toxins, allergens, infectious agents, irritants etc can also be that trigger IMHO I hear ya re the cost of the tests.....if we were starting out on this journey in the position we are now I wouldnt be able to afford the testing I paid for out of pocket for my son. The last I recall seeing tho was that the CAMK test was $200? which is already steep considering one also has to cover the doctor to get the rx for blood draw and then the lab cost for the blood draw. Has she doubled the price now?

Hi Bonnie when my son is without magnesium his tics go up we havent used mag taurate, only mag and taurine separately some people do not tolerate taurine tho so I would think for them maybe the mag taurate would also be a prob even if you dont give taurine, IMHO giving mag is really important in TS my son takes daily mag supp as well as the epsom baths or footbaths and he notices a big difference when he skips it

as I mentioned before, the tic remission for 6 mths at his age just isnt usually characteristic of TS, but that doesnt mean it is impossible...just unusual we have had parents here whose kids have tics related to a wide variety of issues ranging from those undefined"transient tics", post vaccination tics, food or environmental allergies, photosensitivity, pyroluria , Lyme Disease, and recently some who feel that TMJ is the cause of the tics. sometimes it is a combination of factors, but we have had parents whose kids have stopped ticcing when they discovered the trigger and treated for it if you have the means it may be worth doing that CAM kinase thing with Dr Cunningham that the PANDAS forum has info on. It isnt yet "scientifically proven" but it seems many have a high regard for the accuracy

you dont have a PANDAS diagnosis yet, right? leaving TS untreated is something many people do as often the tics are so mild, or not bothersome, and tend to stabilize a lot when people pass those hormonal years. It really depends on how the tics, and especially the possible comorbid disorders are impacting one's life but leaving PANDAS untreated can be very serious from my understanding, as it involves brain inflammation and from what I have gathered, can ramify to more serious issues. dont forget that there are also other reasons for tics apart from TS and PANDAS, and that tics after illness are not necessarily always PANDAS /PITANDS

Hi tatoomom as it is so hard to get many conventional doctors to even acknowledge that PANDAS is a real clinical diagnosis, I think there are likely more kids who are dx with Tourette who in fact have PANDAS there are likely also kids who DO have genetic TS, but also have PANDAS, so I dont think a dual diagnosis is out of the question it would surprise me if it were any more than a tiny minority who are dx with PANDAS incorrectly when in fact they have only TS and not PANDAS

Hi chap we have used it for anxiety...minuscule amount and for short periods only as needed. the outline of the study in the TSA grant award booklet was the first I had heard re it's possible action re tics, tho I am sure there must be other studies if this grant was awarded to further study the connection the warnings we were given by the psychiatrist who prescribed it for my son were never to use it with any medication and with caution when using any sups that alter neurotransmitter levels including all the amino acids etc essential to tell the physician of all meds and supps prior to starting it to be sure of no interaction because it is a powerful neuro inhibitor (in a class with something like the med diazepam=valium) too rapid withdrawal can result in hyper excitability of the CNS with epilepric like seizures and other stuff that you dont want to happen this really isnt one of those "try it and see supps" but best treated as a medication and used only under physician supervision

the OCD doesnt always cause distress tho Ellie....it can manifest in so many different ways, especially the tourettic form that accompanies TS. In fact, it is often defined as a subtype of "classic" OCD, which is more what you are describing My son, now 20, has been dealing with OCD since tiny, and in fact it is far more bothersome to him that his tics, but his obsessions as well as the compulsions arent always ones that negatively impact him, in fact some have just become part of him, as his tics have....some even quite endearing.....but yes, still anxiety for him if they are not fulfilled And yes, he knows all too well about the majority that are negative impacting, and become a very distressing factor. He has had excellent Cognitive Behavioral Therapy tho that has really taught him phenomenal coping skills.

Tatoomom my son has done this since very young we were told by both his developmental pediatrician as well as his neuro and also a psychiatrist and psychologist that this was part of the OCD that he has comorbid with his Tourette Syndrome so yes, it sounds like OCD to me most kids (and some adults lol ) do get fixated on stuff and take it to extreme--- but what you are describing really reminds me of the OCD I see in both my son (and hubby) Certainly from our experience, not only aspergers kids have this kind of fixation/repetitive behavior. My son has other friends with TS, and they show it too and yes, so do some with ADHD oh boy do I remember the Pokemon days and dreading entering Target with him wanting every pokemon thing in site and then talking about them for the next who knows how long................

Wendy I had posted here a number of times at how so many of my son's onset symptoms matched those of kids with PANDAS and how I often wondered about whether altho he was ruled out as PANDAS, perhaps something else, maybe a PITANDS component was at work I have posted many times re his having been under dr Murphy's care. SHE is the one who ruled out PANDAS in him years ago...after much testing and consultation over a 6 month period. This was just a confirmation of that for ME... I thought perhaps those that had shown interest in his case may be interested to hear of the experience on azith I dont see how anything I posted is "wrong information"? I posted about my son having a five day course of azith and seeing a tic spike immediately, and that I felt that IF he had a PANDAS component there would have been a reduction in his tics NOT a spike How is that wrong information? It is an anecdotal observation based on fact...that is what happened I am not sure where the aggressive tone you have toward me is coming from but I really dont have the energy to deal with it so I will just leave this thread back to Mary's info and hope that all works out well for your son Mary. Sorry that it went off track. That was certainly not my intention..I really just wanted to let you know about dye free azith

SF mom perhaps you arent aware of my son's history and that he is now 20 yo and when 11 yo we spent 6 months under the care of Dr Murphy when she was at Shands and she absolutely ruled OUT PANDAS for him he has never exhibited any strep infection, and she ran comprehensive titres and other evaluations on him we have a 3 generation family history of genetic TS I was just posting our info re the 5 day zith, not suggesting that this was the finite way we ruled out PANDAS. Only that it settled a nagging concern in my mind and that I would have expected a decrease in his tics on azith if he had any PANDAS component, not the spike that we saw in fact the only reason I posted was to let Mary know that there was a form of azith without red dye so I really dont want her thread to go off at a tangent on our results

I replied above your post Faith and yes, anything is possible re infection and tics...I posted on the TS forum that it may have been "die off" reaction that spiked his tics my point is that IF he had a PANDAS component to his tics then I would have expected the azith to show a reduction in tics or no effect, not a spike

he must have had the infection for a while prior to his dental appt and his tics were not increasing at all..didnt know it was infected till the dentist noticed it from the xray the dentist put him on azith and he had the tic spike start that first night after taking the 2 aziths and it continued while on the antibiotic. he finished the antibiotic last week and immediately the tic spike ceased(within 24 hr of the last tab) seems pretty clear to me it was a spike while ON the zith

Faith, I have seen documented cases of tics ceasing after treatment for pyroluria in people who were misdiagnosed with TS, when in fact they had pyroluria. Zinc and B6 are the usual treatment supps Pyroluria seems common in families with alcoholism genetics re the Olive Leaf extract...yes it is a potent antiviral, but also a general antimicrobial and yes we only use it (along with the monolaurin and candida clear) for one week every month primarily as a help for my son's crohn's disease (conventional treatment has people with crohn's on periodic flagyl antibiotic, which my son did try in the beginning and had yuck side effects from....)

no, we had the white azithromycin as my son has documented reactions to food coloring, especially the reds.

Carolyn.N on the TS board has experience with NAC my son prefers samE

mary my son has just been on a course of azithromycin for a tooth infection and he had white tabs as our pharmacy knows he is not allowed red dyes...this was the 5 day course so not sure of how that compares with what you need for dosage btw for anyone interested...the zith helped my son's Crohn's symptoms and cleared the tooth infection BUT it resulted in a massive spike in his tics which has cleared any doubts I may have had re him possibly having a PANDAS component to his TS editing in to avoid any confusion: My son was evaluated for PANDAS in 2001 by Dr Murphy at Shands and she felt the combination of his never having had any known strep infection, negative cultures and also no elevation in strep antibodies with having titres checked ruled out PANDAS. he was under her care for 6 months and was in extreme high tics and OCD at the time

Hi abbe I do realize that if there is infection then antibiotics are needed so I am sure not suggesting that no one should use them. My son had to have an antibiotic to clear infection around the tooth before they can extract it at the end of this week. he does feel the azith actually helped his Crohn's symptoms, and there are doctors who believe Crohn's may be caused by mycoplasma pneumonii sooooo but as far as the tics go, there has been a definite increase from the azith, whether a direct result or because of "die off" reaction we dont know...but I would have expected that if there was a PANDAS component to his TS, then we should have seen either a decrease in tics or no effect, not the spiking that resulted. my son takes natural antibiotics (monolaurin, olive leaf extract, candida clear) once a month for a week to keep things like candida and crohn's infective agents at bay, and has never seen tic spiking from those.. quite the opposite as they seem to be helpful, so I am not sure why the azith had the triggering effect.............he has been on it before, in 2006, when first dx with Crohn's. At that time his tics were up anyway from the stress of the Crohn's pain he was in so we dont recall if they increased more from the azith, which once again then helped re the Crohn's

Hi I wanted to report back as well that as my son is having a wisdom tooth extracted, we had an evaluation done and it does not seem that he has any TMJ problems we have a history of TS dating back 3 generations on my husband's side, and also possible TS in cousins on my own father's side again, where I can absolutely see that tics (and other neuro disorders) may be caused by TMJ for some people, and may even intensify tic issues for people with TS, yet I think my son is now clear evidence of someone who has inherited TS with no TMJ

if I had any doubt that my son categorically has TS it was confirmed by the fact that he had to go on a course of azithromycin last week prior to having a wisdom tooth removed this week....and the azith made his tics increase! we had him evaluated in 2001 for possible PANDAS at Shands clinic when Dr Murphy was there, and she classified him not PANDAS my husband's side of the family has TS, and I was reminded recently as well of some cousins and an uncle in my family on my father's side who exhibited what I now know may have been tics altho my son had a rather dramatic onset of OCD and severe tics at age 10, yet he had shown both vocal and motor tics from a very young age...we just didnt recognize them as such. My husband also never had a name for what he and his dad had until our son was officially diagnosed. anyways, I do feel this recent experience with the antibiotic has finally laid to rest any lingering doubts that I may have had about my son perhaps also having PANDAS btw we also had the dentist do TMJ evaluation and it seems that is not an issue for my son he has genetic TS.

honest Bonnie I would let him have whatever music helps him lol nomatter how "intrusive" it may sound

Hi Melanie it is known as GABA not gama, and stands for gamma aminobutyric acid it is the primary inhibitory neurotransmitter in the CNS, which is why it needs to be used with great care!!! and preferably under physician supervision and yes, it can be bought as a supplement, usually used for anxiety

just a PS GABA is a strong supplement so please check with your physician and if you do decide to supplememt with it, start LOW and go SLOW!!!!! as a very little can have a very big effect!