Chemar

he had tics and other OCD symptoms from a very young age (toddler and even before probably...)...we just didnt realize fully what they were although my husband recognized himself & his dad in much of it....just didnt really know about TS then just after my son's 10th birthday he did have a dramatic manifestation of intense tics, OCD and depression we were told by the neuro it was the TS gene "switching on" with hormonal changes but it was dramatic enough for me to investigate possible PANDAS connection. Based on no evidence of strep (never has had sore throat, negative cultures, negative titres etc) he was classified as genetic Tourette Spectrum Disorder

that is great news, Nan

My son has been through this as well as the "tell all" stuff where he literally would report everything he did to me "I touched my nose" I walked 3 steps" etc etc the only time he ever had that "confess and tell" mode was when he was still on the meds so I am not sure if that was a factor now when he is in OCD wax, he will sometimes want to discuss any fears, phobias with me for reassurance. I have to just say "no it cant hurt you" or whatever he designates as THE answer....... as far as we know he has never had strep, but we know he has been exposed to epstein barr virus (no mono symptoms tho) and possibly mycoplasma. I have long felt he has a PITANDs component to his genetic TS/OCD

what great encouragement! this place wouldnt be what it is without the contributions of all of you! so thanks to all the members

hi Faith maybe this can help re the tyrosine. I dont recall Bonnie saying anythig about tryptophan increasing tics but may have missed it. http://www.bonniegr.com/Interview%20with%20Bonnie.htm we found taking combined aminos not a good thing for my son and so stick with just the individual ones he tolerates

Hi Vanessa just wanted to encourage you that the one year mark really is just a loose parameter set by the med profession as a guideline detox itself can also be a tic trigger until the yuck stuff is out of the system I did not see magnesium in that supp lineup? most people find it to be THE main tic reducing supplement, especially for Tourette tics. my son has genetic TS and the only foods that trigger more tics for him are chemical/artificial food additives. He does have many environmental triggers tho I hope you will persevere with nutritional supplements and maybe try adding magnesium to the mix and see if you notice improvement. How about epsom salts tubs, footbaths or creams? have you tried those? Acupuncture? praying you will not lose hope and keep searching for that light at the end of the tunnel

sorry I am kinda puzzled by this? Paxil is an SSRI used to elevate serotonin. Where it might have a calming effect on OCD and help lift depression, and that may indirectly relieve tics, yet paxil isnt an rx med for tics are you still taking clonidine as well? please do remember that should you stop taking either of these, ESPECIALLY the paxil, you *must* titrate down in dose as stopping "cold turkey" can result in serious withdrawal symptoms I dont know anything about clay baths for detox. we use Epsom salts

(((((((((((Patty))))))))))) I sure understand the feeling. Been there so very many times. yet, hard as it is, we both know that drawing attention to it is only going to make it worse and add all the extra stress too........ perhaps he caught a whiff of the fishoil and this has triggered the tic. could it even be obsessive now?? is he still on the fish oil? as you know from my other postings we see a definite correlation between increas in tics if my son takes fish oil supplements, not if he eats fish. He only takes flaxseed oil supp for omega 3 now and eats wild alaskan salmon for the extra praying this tic passes soon and that you will have that extra measure of patient endurance so needed when this kind of tic happens

Hi Kizza by asking if maybe one of your parents would read up on TS I was just suggesting that if 1 (or better yet BOTH) actually read up on it they may be more understanding of what you are going through rather than just telling you to stop btw Trichotillomania is classified as an OCD symptom glad you are finding the links helpful

welcome Kizza what you are describing does sound like the tics associated with Tourette Syndrome, especially how you feel when you try to suppress them.....however other things can also cause tics so it truly would take an evaluation by a qualified (ie experienced with Tourette/tics) doctor to determine if this is TS....and even then many people are sometimes misdiagnosed (strep and other bacteria and viruses can cause tics, as can heavy metal loads, vaccines, food allergies, vitamin deficiencies, yeast infection of the gut and also some environmental things) do you also have OCD? (obsessive and/or compulsive behaviors) is there any way one of your parents may be willing to read up some on TS and tics? In addition to all the information here and on the Latitudes article pages for Tourette http://www.latitudes.org/tics_tourettes.htm there is a really good site by Leslie Packer http://www.tourettesyndrome.net as well as a lot of info on the TS association at http://www.tsa-usa.org hope that helps a bit and that you will keep posting here. we will all try to help you find answers

Bonnie, has he ever tried tryptophan or 5HTP? as they do increase serotonin that can be helpful. my hubby just finds SJW better as the trypt and 5htp make him spaced and a bit edgy samE also has benefits for lifting mood but is a bit pricey IMO Fishoil or flaxseed for increased omega3 can only be good....again something mrsD has a lot of info on http://neurotalk.psychcentral.com/showthread.php?t=6092

Hi myrose i think we have some misunderstanding going on you said in the TITLE of this THREAD that most certainly did indicate children could benefit from taking it, and can sometimes cause people to run out and buy it without checking further into potential problems it can cause. then later you said without clarifying just *what info* on DHEA was actually from Latitudes so again I was responding to that comment with exactly what *is* on Latitudes to avoid any confusion for anyone. Even tho you had quoted it above, it hadnt been attributed nor linked so I was ensuring readers knew what the Latitudes info on DHEA actually is myrose, this was not in any way a criticism of you passing on info you have found....only ensuring that no-one reading misunderstands that info, especially based on the title of your post. We all share info here, and that is commendable. But both Faith and I immediately had concern at your title as well as the first article you had posted. If any of us (me included) posts info that could potentially cause a problem for any child represented here, it is surely not a bad thing for others to add info to balance and clarify things. That was all I was doing. using the QUOTE feature here (above the typing reply box in those little icon buttons) is really helpful too as then people know what are our own words and what we are quoting from other sources. it then puts the text we are quoting into a separated section like this adding a link and attribution also helps to avoid confusion

hi myrose the only info I see on Latitudes website re DHEA is very generalized and nothing like that article in your first post and also does *not* suggest that children with TS may benefit from DHEA. It is what you quoted a few posts above http://www.latitudes.org/depression.htm

PLEASE!!! be VERY careful with DHEA supplementation *especially* in children as it is a hormone precursor that can therefore impact normal endocrine balance and development from mayo clinic and http://www.mayoclinic.com/health/dhea/NS_patient-dhea

st John's wort (SJW) can help as can L-phenylalanine (the latter only if he doesnt have TS as phenylalanine can be dopaminergic therefore increase tics) my husband has used SJW successfully for depression this time of year (winter, shorter days) many people get S.A.D (seasonal affective disorder) induced depression and there is a lot of good info on light therapy for this mrsD did an experiment on herself with it with very positive results http://neurotalk.psychcentral.com/showthread.php?t=12301

Hi if you do a search on the TS/tics board for ad_ccl and Ronnas posts you will find lots of info that they both posted over the years I have not yet moved all those older posts over here now that we have a separate PANDAS board

that is soooooo good to hear Alison I think of you and Ronna often and so appreciate how the two of you truly were the "pioneers" of the info here re PANDAS (well actually on the tics/TS board as we didnt have a separate PANDAS one then) and also the first to report the success of prophylactic azithromycin much love to both of you

compounding pharmacies can help with dye free meds if he tolerates salicylates then white willow bark is a natural "aspirin"

hi usually that kind of scratching is something I have come to associate with allergy could they be using a carpet shampoo? pesticide? air freshener or something like that that is causing a chemical sensitivity for him also sometimes sweating can cause itchiness. but yes, scratching can sometimes be tic related too, tho from my experience it is usually a specific area tic rather than allover

hi Char illness has always intensified tics for my son because of the high incidence of strep induced tics it really is a good idea to always have a culture done at least when a sore throat or even just exposure to strep also, whenever there are swollen glands there is a chance it could be epstein barr virus (the one that causes mono) again a tic trigger re the homemade fudge brownie...it would depend on the ingredients you used. so many of our kids are very sensitive to certain food additives i doubt upping the mag taurate would have caused increased tics provided he has always tolerated it well before

I am *really* concerned whenever I read more of this use of steroid burst to try to differentially dx PANDAS I have seen first hand the serious reaction it can cause for someone with TS I realize DrK is highly respected in the field of PANDAS treatment but it troubles me that he is using steroid burst this way when it could cause serious problems for people who have other conditions

we have a young girl at our church who has been ill for many years dx with seizure disorder, MS etc they finally discovered she (and the rest of family) have Lyme Disease if left untreated it can do serious damage

glad to see the B6 has helped Char re your post a few up...my son used L-carnitine *not* acetyl L-carnitine altho I know some people prefer the latter the carnitine was very effective in helping with both vocal and eye tics for him and he used it for almost a year however, he later became reactive to it with it making him edgy and spacy and so we eliminated it from his supps he now takes the P-5-P form of B6 along with various other supps and prefers that to the regular B6

Hi Char yes, Candida albicans aka "yeast infection" in the gut can cause digestive changes like that. Bloating and gas also often accompany it The Yeast Syndrome by walker & trowbridge is an excellent book on symptoms and treamtent of candida as well as great recipes for a yeast buster diet too

I dont know Dr K's criteria but I do know what an insistent doctor did to my husband by giving him the steroid burst for pain and I would again strongly caution anyone who has suspected TS NOT to have a steroid burst as the effect on tics can be very serious. People *can* have both TS *and* PANDAS The 2 are not mutually exclusive Just as my son has Crohn's (also autoimmune) and TS and we have to be very careful that we dont use things that can help the one but hurt the other. Even his GI specialist agreed we could not treat his Crohn's with the usual steroid meds as that would make the TS much worse