Chemar

l-carnitine

hope and pray you get a clear dx and effective treatment Bonnie good that you are focusing on you as you cant be at your best for him if you arent well ((((Bonnie))))

are you having him checked by a PANDAS doctor if he has that much strep history? I would think that in a case where strep is so prevalent in a child, then first evaluating for PANDAS would be where to start...apologize if you have already done this and posted about it on the PANDAS forum...I dont get time to read all posts there so may have missed an update from you

bumping this up for those struggling with acceptance of TS tics here is Lara's post, which I know she wont mind me copying here:

Hi Fixit not sure if you meant to post a reply but all that came thru was a quote of my post?

things usually slow down as well here over the holidays I have also heard from some newbies who get confused at being PMd to check into the PANDAS forum as soon as they post here, so hopefully we will be able to see a balance of providing the info needed so that new parents can check into the very real possibility of PANDAS, while not making them feel that is the only possible dx and so causing them to miss out on also learning about the other potential tic triggers and treatments hope things are going well for your family, Faith my son is doing really great since having a troublesome wisdom tooth pulled. Both tics and OCD are very subdued which is great as Dec/Jan has always been a waxing time for him. He recently had his 20th birthday so hopefully he is also now entering into the post teen waning that many people with TS seem to experience

Hi this is a fairly common tic. hopefully as he gets older he will be more able to adapt to cognitive behavioral therapy in order to prevent and/or heal any injury caused by tics/OCD when my son had the lip licking/wiping tic, we found warm chamomille teabags helpful. My son found them soothing and they dont have that sticky feeling that ointment gives

my son has a number of triggers...primarily chemicals. So he reacts to everything from artificial food additives, to household cleaners, scented products, perfume, chlorine in water etc stress is another trigger for him and he has also had tic waxing with teeth coming out or in interesting observation is that he also has waxing when the moon is full. we have kept a record for years now and it is a fact that his tics and OCD increase when the moon is waxing flashing lights in darkened rooms trigger him too, as does fluorescent lighting he has other triggers but those are the main ones that come to mind not sure if you have read the triggers article from the main section of the website here http://www.latitudes.org/articles/finding_triggers.htm the bottom of the page has the results of the informal survey on tic triggers

thanks Bonnie Hope everyone has had a peaceful Christmas and that the rest of the Holidays will be happy and that the New Year brings good things

Just an FYI that we have found that less melatonin is more effective for us, so we get the 300 MICROgram size and take two (ie 600 mcg) when needed. both son and myself find if we take the higher dose ones, it has the opposite effect and we sleep a bit but then are restless and wake groggy and "edgy" lol peglem, when I tried to give my son valerian he released a dreadful howl at the smell and said he refused to have something that smelled like yucky stinky socks

Hi Melanie does your son have a PANDAS diagnosis now? coprolalia is a recognized Tourette tic. conventional neurologists tend to offer antipsychotics for TS, and unfortunately the side effects from the antipsychotics can sometimes be worse than the tics, as we learned by bitter experience when my son was newly diagnosed and in a crisis state with severe tics/OCD and we were desperate and caved to pressure from school, neuro and psych to put him on the meds we certainly saw no decrease in coprolalia then....if anything it got worse, as did his tourettic OCD I dont know if your son has PANDAS diagnosis, nor do I know whether coprolalia is a PANDAS symptom, but I do know from experience to caution you to be very careful of antipsychotics Forgive me for not remembering your son's age, but by age 12 my son had learned really good substitution techniques in cognitive behavioral therapy which helped him "mask" the coprolalia by substitute sounds that still allowed him to release the tic, but in a more socially acceptable way

Tatoomom Dr Tanya Murphy is in Tampa Florida, so a day trip from you. She was one of the first doctors to begin recognizing and researching PANDAS. I honestly dont know what her protocol for treatment is at present, but did see she was listed in that NIMH PANDAS research info that Buster posted. She is now at Univ Florida Tampa and does see patients tho I dont know if she is accepting new patients at present perhaps your pediatrician may know of her (she used to be at Shands Clinic, Pediatric NeuroPsychiatry in Gainsville Univ Florida) and at least be willing to contact her? or as others have suggested, to contact other doctors at the forefront of PANDAS research and treatment to discuss the trial abx protocol with them on your behalf

Hi most of the info that I have re pyroluria is anecdotal as many medical professionals dont even recognize it as a condition. Alternative doctors do and there are also labs that can test for it there was some very definitive work done by a researcher who went by the user name FJ* on the now lost archives of another neurology forum that documented her research and her own child's misdiagnosis with TS when he in fact had pyroluria. Her information was very comprehensive but when that database crashed in 2006 it was all lost and I havent been able to trace her since there are also a number of posts here related to it, again primarily anecdotal, but also with info on testing, symptoms etc here is a link to the search results for it Pyroluria Info from ACN Forums perhaps Abbe will have some additional resources on it

I am also allergic to penicillin and must say I havent had any reactivity to turkey or eggs but maybe my senstivity isnt as intense or perhaps the fact that we use only free range organic eggs, tho when I get turkey I get Butterball so not sure if they also use antibiotics on their birds?

that would have to be your child's decision but honestly I wouldnt recommend that I know when I tried to intervene that way it caused my son stress and made things worse. The "restriction" albeit gentle and loving, caused a more dramatic tic response believe me I know how scary it can be, especially when the tics look like they may cause injury I would suggest you just ask your child if he minds if you hold him, but be very careful in how you approach this i just asked my son (now 20yo so in a whole different place than when he was younger) and he confirmed that restricting tic movement that way could cause a much more dramatic tic response there is also a theory that too much tic suppression can cause the "tension" to manifest as anxiety, OCD etc so I guess what I am trying to say is, unless there is serious danger of severe injury, try to remain as detached as you can.

I really dont know the details on all of them Bonnie but I do know my son (and me) have a very bad reaction to B complex...we can take all the Bs in a multi, but the actual B complex alone has a weird effect on both mental and digestive for us, and I have heard that from some other people, altho some do just fine with it in addition to getting all the Bs from his multi (jarrow multi easy powder mix) my son has always also taken extra B12 (has to be methyl b12 not cyano) and B6 (he takes P-5-P form) also takes Inositol vit B8 daily he used to also take extra B1 (thiamine) and when he had bruxism tic, he took extra B5(pantothenic acid) as it is good for teeth tics the B's are generally important in neurological functioning I personally think B6 and B12 are most important re tics for my son, with the Inositol being good for his OCD/anxiety, but at the same time, I know he needs his daily multi with the other B's in as well ,for all to function together correctly if you take a look at Bonnie Grimaldi's ingredients you will see the B's she has specifically included in her TS-plus hope that helps a bit http://www.bonniegr.com/products.htm

Buster, that was an amazingly generous act of kindness from those of you that did that to help other parents I am curious as to why the research hasnt received funding? From what I have gathered, isnt this the most definitive "test" available for PANDAS? Is there any specific reason that NIMH is not providing the funds needed? or any other funding source?

Hi Deagar yes, we always found my son's tics to be up after waking (he never tics in his sleep that I am aware of) and yes, the big release after school is very common. it has been described like shaking a soda bottle and then releasing the cap....they suppress the tics while at school and then whooosh as soon as they feel safe to release them when back home or even in the car on the way back from school. We often had days where my son would come home and immediately take his epsom salts bath to help relax him and his tics a good way of describing a tic urge is like a persistent itch...you can try to ignore it but eventually it reaches the point where you just HAVE to scratch I know it is so hard for us as parents to not intervene, but whenever possible we do just have to pretend we dont even notice unless the child opens the convo in the beginning, before I had learned the hard way, I would do things like say "so were the tics ok during school?" or even "how are you feeling?" and would trigger tics...even if I just looked at him it could set him off bigger. altho his tics are really mild now, I still have to be so careful as a wrong word or glance when a little tic shows can result in a big reaction! the best you can do is just provide a calm environment for him to feel comfortable to release as much as he needs to, and just keep doing the best re keeping his diet and environment etc as free of potential triggers as possible hope that helps a bit

I used to be involved with medical research.....I saw first hand how some "scientific studies" get skewed in many directions depending on the vested interest of the researcher I tend to have far more faith in anecdotal reports borne out by the observations of many people seeing the same thing than I do in "scientific evidence".................

Hi Karen yes we did have doctor guidance for the supplements when my son was in severe OCD waxing after the med withdrawal, the psychiatrist who was supervising the withdrawal recommended 5HTP and it did have a really positive effect on my son, with a rapid decline in some very alarming OCD symptoms he was having at that time. he was using a minimal dose tho (50mg each evening) once his OCD was stable (still there but not the awful intrusiveness like before) he slowly came off the 5HTP and remained on Inositol (one of the B vitamins), methionine and St John's wort which helped we removed the SJW as well as long term use isnt recommended and the hypericin in it can also cause sensitivity to sunlight when he tried 5HTP again a few years later during an OCD flare , he did not respond well..it made him edgy and restless) he went on a high dose of Inositol then(12-16 gm a day) and it brought the OCD back under control. Again, high dose Inositol is not recommended longterm recently he decided to try the samE form of methionine and that has had a very very positive effect. He still takes around 1 gm of Inositol daily I should also mention that he finds taking Vit B6 (he uses the P-5-P form) and vit B12 (MUST be the methylcobalamin not the poorly absorbed cyanocobalamin) along with vit D3 are essential to his general mood and helping the OCD/anxiety issues. He notices a big difference if he isnt taking these re the distinctions in OCD, there are a number of threads here related to it. We first came to understand the difference when under the care of a psychiatrist who showed me a number of research papers related to "tourettic" OCD with the morphing of tics into OCD symptoms and vv that we saw in my son

IF there is any chance of Tourette Syndrome (and not saying there is in your child's case, just commenting.....) then steroids can dramatically increase tics. I know the steroid burst is a really beneficial treatment in PANDAS so please, before anyone misunderstands what I am saying again, I am NOT suggesting it shouldnt be used for PANDAS kids.... I would just be remiss if I didnt keep reminding anyone who may have a child who also has TS, that steroids can dramatically trigger tics

Hi Karen many conventional docs do prescribe the SSRI antidepressants for the OCD that is often comorbid with TS altho the OCD with TS is frequently somewhat different from "classic" OCD or even from the OCD that I hear some of the PANDAS parents describe, still the basis for it appears to be a deficiency in serotonin. the OCD with TS is sometimes "tourettic OCD" where tics can become OCD and vice versa...very distinctive. Still, even with this, other more "classic" OCD symptoms can also exist My son's OCD falls into this mixed definition my son was on Luvox initially but it really zombied him, much personality damping as well as resulting in a total loss of interest for the artistic/musical talents that were his passion! it also sadly caused some psychotic reactions (tho in fairness it is believed that may have been a result of the combination of luvox and haldol that the neuro/psych had him on initially) However I can say emphatically that the Luvox never really helped his OCD much, IMHO in a way maybe even triggered new aspects of it we had to go thru a very very slow weaning and rather debilitating withdrawal period when he came off the meds but it really was a relief to see his personality return...I will never forget the joy I felt the day I saw the familiar mischievous sparkle in his eye replacing the dull glaze he had on the meds amyway....I mentioned the med reaction just to say that we actually found a combination of CBT and natural serotonin boosting supplements to be far better at controlling his OCD than the Luvox ever was but if your husband responds well to SSRIs then yes, those are what are also rx for TS OCD because at the primary purpose is to increase serotonin

yes, I hadnt heard the connection until I saw a brief piece in our local paper a Google Search brings up quite a bit of info Mycoplasma and Crohn's

abbe interesting re the flashing as I have heard the same from others with pyroluria...that it seems to heighten photosensitivity

just linking in this same discussion from the TS/tics forum for additional perspective http://www.latitudes.org/forums/index.php?showtopic=6310