Chemar

I see there have been past FDA warnings on the product Zicam, related to loss of smell http://www.fda.gov/Newsevents/Newsroom/Pre...s/ucm167065.htm so glad to hear your child is so much better!

so sorry to hear he is ill bev. whatever the root cause of tics, it certainly does seem that, with some exceptions, kids seem to tic more when they are ailing. It is most likely the immune system reacting to the illness and so somehow triggering the tics. This would be an excellent time to try to get a strep test as well just in case! hope he feels better soon.

fixit, you do need to remember that this is referring to people with Tourette Syndrome! (ie on Bonnie's site) people with TS have to avoid things that are dopaminergic One cannot look at general info and then extrapolate to TS. if your child is showing low dopamine and high taurine and needs tyrosine....perhaps he doesnt have TS? in which case none of this would be relevant to his specific condition not saying this is so ...just mentioning the contradictions

Hi fixit sorry I am not too sure what you are asking? not everyone needs taurine and it is generally only used by people who have confirmed Tourette Syndrome as for some of them, it seems to help reduce tics. Some people (even those with TS) seem to not tolerate it and so perhaps they already have enough of it in their system or are just sensitive to it people with TS generally should avoid extra tyrosine because it is dopaminergic Bonnie comments on this here (see points 7 & 8) http://www.bonniegr.com/Interview%20with%20Bonnie.htm

we used l-carnitine not acetyl l- carnitine so I am not sure re the appetite /weight loss thing I am not sure why the person questioned a teen using samE? my son was 11yo when he started using methionine. Methionine helps to elevate serotonin and so helps with OCD, mood, depression etc we had tests for heavy metals and my son was found high in mercury. He took supplements to help that (chlorella, and right at the end of the process. alpha lipoic acid) and had intensive acupuncture, biofeedback and reflexology treatments etc to help the detox here is a helpful thread on testing http://www.latitudes.org/forums/index.php?showtopic=755 5HTP makes one sleepy so should be used at night. my son never took more than 50mg daily. If one is reacting badly to it then instead of relaxed and OCD down it can cause edginess, restlessness, agitation etc I do want to emphasize again that all these things are very much dependent on the individual and not everyone reacts the same to a supplement. another reason why it is best to add them one at a time and watch for a few days to make sure well tolerated before adding the next

bev, it depends on his age and body weight, but he already is pretty much on adult dose of mag and taurine already have you tried soaking a washcloth in warm epsom salts and letting it rest on his neck? is he doing epsom salts tubs? that is w good way to increase magnesium without having to ingest more he could be in one of those mysterious waxing modes, or may have been exposed to some trigger. Is he excited or stressed about anything? (apart from the tic increase of course) Exposure to any chemicals/pesticides/perfumed stuff?

spectracell measures the vitamin and amino acids I believe, and directlabs did the mineral tests these were tests our integrative physician ran for us there is an old thread on the TS forum about all these tests. As we had ours almost 10 years ago, I am not sure if there may be more advanced methods now.. http://www.latitudes.org/forums/index.php?showtopic=755 also this lab can measure neurotransmitter levels etc https://www.neurorelief.com/index.php?optio...9&Itemid=74

just wanted to post another aspect of this, being that some people have neurological symptoms caused by zinc deficiency! An example is pyroluria. Both my husband and son find they need daily opti-zinc in conjunction with other supps that help with their TS tics so yes, excess zinc is bad neurologically, but so is not enough. another reason why it is always a good idea to try to use things like spectracell analysis etc to determine whether one has too much or too little of vitamins, minerals and other essential elements and then supplement only if needed

Hi Laurena Sheila will likely respond here soon but no, ACN/Latitudes is not part of, nor affiliated with the TSA

Hi TSA has been pretty resistant to alternative stuff and yes, they tend to only refer one to "conventional" doctors. They have had Sheila as a guest speaker in the past so at least they dont totally close off alternative ideas. When my son was younger, he was invited to be on a Q&A session to discuss the treatments that had helped him. He also spoke at one of the meetings that Sheila was guest speaker at. they do have helpful info re getting accommodations etc at school, but if you are looking for any alternative or "out of the box" thinking...they are not the ones to go to

IMHO, no. I posted above how chlorine is a big tic trigger for many with Tourette Syndrome Michael, re your question on the hydrogen peroxide for toothbrushes we use about 1/3 peroxide to water and have those small glass juice cups per toothbrush. We keep the toothbrushes in that solution (peroxide is also good for teeth/gums as it whitens teeth and kills bacteria) and rinse toothbrush thoroughly after use then back into the peroxide solution. We put in fresh peroxide solution about every 3 days I guess

I think the invisalign would probably work well for those who have the metal trigger things....but with the info re the TMJ and some people who display TS symptoms, I am not sure if it is the altered jaw/dental allignments that affect those who are TMJ susceptible ?? so whether regular braces or invisalign...the re alignment may be the trigger?

toothbrushes can also be kept clean by soaking in a diluted hydrogen peroxide solution..we store our brushes individually in cups of the peroxide solution

I did post this above yours...think we were posting the same time I dont remember the dose but it was the regular 5 day prednisone burst pack where it starts high and tapers downward for 5 days he noticed the elevated tics very shortly after first dose on day 1 and it got worse and worse with each day altho the intensity of his tics now is not like it was during and for a few months after the burst, the overall number, frequency and duration of his tics, both motor and vocal, are still far higher than they were a year ago, before he had the steroid burst

Hi Fixit my husband's was the 5 day tapering prednisone steroid burst

yikes!! well I guess this may be ok for some kids....and I can see the possible benefit in eradicating infections.. but chlorine is a major tic trigger for my son...to the point where he cannot swim in chlorinated pools, we have special filters on all our faucets, and I cannot use any bleach in laundry or cleaning products this chlorine sensitivity seems to occur in a number of kids with Tourette, and we have quite a few threads about it on the TS forum

Hi Patty is the retainer metal? that can be a trigger as can any type of dental/orthodontic work we have had reports here of retainers and braces spiking symptoms my own son refused to have orthodontics because at the time he knew he could not tolerate any metal in his mouth. (he even ate with plastic utensils for a while because of that trigger from metallic stuff in is mouth) His teeth actually grew out just fine! hope things settle soon for your son

hi reactive yes I guess it is possible you are looking at both TS as well as either PANDAS or, if the term is still in use, PITAND, where an infective agent other than strep can trigger all these things as I honestly dont know enough outside of the TS/OCD realm that we have dealt with, I cant comment beyond that. all I can comment on is the personal and anecdotal reports of TS tics increasing after steroid burst

does your child have tourette syndrome? if not, then the burst should hopefully not cause a tic increase. it is the increase in TS people that is the concern, or in those suspected as possible TS

Hi my husband had the steroid burst almost a year ago and his tics are still elevated compared with prior to the burst his TS tics were minimal prior to it and had been for many years. they used to be high when he was a child, but had reduced to an occasional eye blink or throat clearing for decades immediately that he started with the steroid burst on prednisone (day 1) his tics began to wax and by day 3 it was so bad that he couldnt even walk he was ticcing so much, and also very loud vocals as mentioned above, his tics are still elevated, almost a year later. his may be an extreme reaction because of his age and general health. but I have heard from other people who have noticed an increase in tics with steroids too. I guess it is a hard call to make and I am not in any way suggesting that this isnt a very beneficial treatment for PANDAS kids (and for autoimmune illness in general) just cautioning on the possible tic triggering effect for those with Tourette Syndrome

Hi 7upMom we have a family history of TS, dating at least 3 generations that we know of all have had OCD co-morbid with tics as part of the Tourette Syndrome, and have manifest what our doctor called "tourettic OCD" ie where tics and OCD sometimes "morph" into each other all have had tics that waxed and waned I dont know much about PANDAS beyond what we were told by Dr Murphy when my son was evaluated by her back in 2001 so I honestly dont know how doctors would differentiate what you are asking about 7upMom from my limited understanding they look at a combination of history, cultures, titres etc and now also the camkinase results to determine whether PANDAS the difficulty I think in terms of the steroids is that some kids do also have genetic TS as well as PANDAS. I guess that is when one would need to be careful the "textbook" criteria for TS is to have motor and vocal tics that wax and wane and are present for at least a year continuously. I do personally think that family history should also be considered before giving a TS diagnosis as I think many kids who tic with OCD may be dx with TS when in fact it is something else causing them, eg PANDAS or some of the other things we discuss on the tics board but I am first to admit I dont know much about up to date PANDAS info was just posting because of the steroid burst question

no, my husband's tics have not returned to pre-steroid burst levels and are more elvated than they have been since he was a child. He is in his 60s I am not a biochemist etc but from my understanding it has to do with the stimulation of dopamine or maybe altered dopamine receptors that occurs with corticosteroids? I am not sure that anyone has actually done research on it so this is pure speculation on my behalf. I know there has also been discussion on this happening with androgenic steroids, and that this *may* be why more boys than girls manifest TS it is one of those things that I only mention because of our personal experience re my husband, and also the anecdotal reports I have from others on the subject. My son's GI doctor had also heard of it, as when my son was also dx with Crohn's , the doctor agreed it was too risky to give him prednisone as it may trigger his tics

fixit I am going to just mention again of the potential problem with a steroid burst *if* your child may in fact have TS some people with TS react with more tics if they are exposed to steroids that doesnt mean it will be that way for everyone, but there is always the possibility. It happened to my husband where tics he hadnt had since childhood re-emerged after a prednisone burst to help with severe inflammation from a spinal injury. I have heard from other people with TS who had tics wax after steroid treatment if your child is PANDAS then I know the steroids are very beneficial! so I am not negating the treatment at all.... just again mentioning the possibility of increased tics IF Tourette Syndrome

I hope it will go very well for him CP and that the vocals will settle down. it could be the excitement and "stress' of starting that has them waxing a bit I dont know if he does epsom, but my son has been doing the footbaths each night (1/2-1 cup in footbath...we have a Homedic one but one can also just use a basin of warmest water) The footbath means they can still read or watch TV or computer or whatever. we just keep a towel under it to step out onto will be keeping your son and (((you))) in my prayers

Hi Mar I always avoid the term "yeast free" diet as that isnt all the candida eradication diet involves...there is a great book by Walker and Trowbridge called The Yeast Syndrome that details diet and gives some recipes too the candida clear dose and duration really depends on the individual, as do side effects to any of its ingredients the toxic die off reaction is a side effects one gets nomatter what, as that occurs when the candida dies and releases toxins