Chemar

trubiano it certainly seems like something seasonal is triggering the tics and yes, I would think an Environmental Doctor may be a good one to see on this

Pam the Natural Calm and Kid's Calm magnesium citrate has a natural laxative effect. That may IMHO be preferable to mineral oil to start if you arent already using it

Hi Cell Food is excellent! I can personally vouch for that, as our whole family uses it as part of our regular nutritional health, and we know the difference when we dont take it I dont know of any specific benefit related to tics etc tho...rather just overall cellular health which of course in turn affects all health do remember that where fish oil is an excellent source of the essential Omega 3 needed, SOME people with TS and tics react to fishoil and do better with flaxseed oil I dont know that particular source of metal detoxer just a note on quackwatch.............if I paid heed do them my son would still be suffering as a drug-induced psychotic or worse !!!! there needs IMO to be a watch on them!! It is essential to be cautious, especially in alternative treatments, because there are sadly those who take advantage and push unproven or dodgy/expensive remedies BUT quackwatch is not a reliable source of information and I would look elsewhere to research stuff than there

Pamela, I would agree to be very careful about using a colon cleanse formula on a child without it being specifically recommended by a doctor and with a specific product There are also colonic treatments (which are IMO very uncomfortable and not a very pleasant experience to have) but are done by a professional and so monitored etc

Hi Michele a good doctor should go over and explain test results to you in detail and then recommend appropriate plan of treatment I would think the primary issue is first to bring the strep under control (did you discuss azithromycin instead of penicillin with the doctor? especially as it seems to also have immuno modulating action) While controlling the strep, the restoration of his GIT and the modulation of his immune system is so important. dont forget the probiotic must be given at least 3 hours BEFORE OR AFTER the antibiotic as otherwise the anti kills the pro

This PubMed abstract is very interesting thanks to Lara at Neurotalk for finding this!

Hi Pamela sorry I havent replied sooner but my workload is rather intense lately and so time limited for here. Here is a thread that Claire put together on testing.....hope this helps http://www.latitudes.org/forums/index.php?showtopic=755 her also is my thread on the treatments that have helped my son, and I also document there the testing we did http://www.latitudes.org/forums/index.php?showtopic=687 I have also bumped the threads up HTH

bumping for reference

Hi Michele...hoping you got these answers sorted from the discussions recently, and also bumping this thread for all newcomers.

welcome to Latitudes, Frazer yes, Carolyn, I do most emphatically tell company, teachers etc that perfumes and scented products are detrimental to my son's health and I request that they not use them. It is even documented in his 504 educational plan. As an aside, yet still on perfumes, studies have shown that the musk compounds in perfumes etc are in mother's milk and so being transferred to babies nursing......musk xylene in particular as well as other of these compounds. The list of potential negative effects in babies was alarming!!! never mind what those things must be doing inside of women who wear perfumes. I stopped using perfumed products when I first met my husband as he had extreme sensitivity to them (he also has TS/SID) Real glad I had already eliminated these from cosmetics and household products before our kids arrived CP, it is real hard dealing with people who dont get it, and especially when it is family one cares about. All you can do is be consistent and very firm in a gentle way. It is your child's wellbeing that is at stake!

Hi Tom's Mom sorry..no...I sure dont think seeing a nutritionist is a waste of time....quite the opposite! I was referring to the comments related to the frustration that was being expressed after appts with some conventional docs, and suggesting that docs with a more open minded protocol may be the solution

sorry to be rushing through here and will try to reply in more detail later, but honestly I would suggest trying to find a different kind of doctor (eg DAN, Integrative etc) as you are likely going to get the same closed minded and IMHO ignorant response from so many conventional doctors It boggles my mind that they are so slow to listen and so quick to dismiss anything they dont understand Diet, nutrition and GIT health is KEY to so many human ailments, yet so few doctors recognize this essential fact and instead function as little more than prescription writers for the Big Pharma companies Just keep reading here and elsewhere where you find good info. I hope to have more time later to respond more to your specific concerns welcome to all our new members

Hi Michele I do hope you are also giving ProBiotics while he is on the antibiotics....really important as the antibiotic kills both his good and bad bugs and that is when gut problems, candida yeast etc can occur good to give the probiotic at least 3 hours before or after the antibiotic(otherwise the anti will just zap it too) I personally like kefir and plain natural yoghurt like (stoneyfield farms) but one can also get excellent probiotic cultures in the cold section of health stores

Hi mom2Samuel, yes, I do agree with Patty that one of the first things you should check is your new home as it sounds like something environmental could be triggering tics. New homes are filled with formaldehyde and other chemicals in carpets and wood etc it seems very likely that the Nystatin has caused a rapid die-off reaction and this is aggravating tics. Are you giving a probiotic too? That is so important at this stage. Kefir is an excellent source as is real yoghurt like stoneyfield farms My own preference for eradicating yeast is a more natural method than the prescription drug Nystatin. I like CANDIDA CLEAR by NOW as it comes formulated with things to help in die off and has a more gradual effect than things like nystatin I have also heard good reports on THREELAC please try to find hope here.........I know it is so sad and scary when we feel helpless to help our kids...but his little body has been through a lot and you are doing good stuff to help him. Most of all he needs a mommy who isnt exhausted and worried so take care of you too! (((hugs))) to you

hi trubiano usually the dose for under 12yo is half the adult dose but I dont know the specifics of your powder

trubiano a DAN doctor is one that specializes in treating autism, but many of them also deal with PANDAS, TS and many other issues too. they are all either MD or DO so conventionally trained doctors who are specializing in more alternative or lesser generally used treatments the sticky thread pinned to the top of this forum has info on finding DAN and other Integrative MDs/Dos Do always ask FIRST before making appointments that they do in fact have the experience in treating these issues and not just autism. Not ALL DAN docs do, tho many are broadening their patient base and gaining more experience in ASD and other neuro stuff too

where sensory issues (sensory integration dysfunction=SID) are common in kids in general and especially in those with neurological problems, the things being described ie licking, telling people what is being done or thought or felt etc, intensity in collecting things etc etc sound far more like OCD characteristics than SID, although there is anecdotal evidence that shows so much overlap in all these things in TS/PANDAS kids however, we know that especially in PANDAS, there is a heightened OCD/anxiety etc reaction and certainly many people with TS find their OCD to be far more bothersome than just the tics alone In addition to the CORRECT antibiotic treatment in PANDAS (and again here azithromycin/zithromax seems to -- at least anecdotally -- have been found to work best, especially as it appears to have immuno-modulating properties ) the OCD itself is best helped by a combination of Cognitive Behavioral Therapy (CBT, really beneficial) and supps or whatever works best to boost serotonin levels many doctors recommend SSRIs (Luvox, Paxil, etc) for this, but our personal experience was that these bring more nasty side effects and minimal benefit just on a personal note, before we started the supps and CBT to help my son's OCD, he exhibited many of the symptoms being discussed above. ps re Sensory issues, the book Patty mentioned is excellent http://www.out-of-sync-child.com/

Hi Clark Do you give taurine? Taurine and magenesium seem to work very well together overall re tics some folks find L carnitine helpful, tho some get edgy on it I am assuming your child has always done ok on B complex? I ask because some people do not tolerate B complex well and need their Bs separately Also be sure to check diet for any artificial additives. My son has always reacted to artificial additives with more VOCAL tics

just a word on GMO in the corn and in others they have genetically engineered a PESTICIDE into the plants DNA eat the produce=ingest the pesticide!!!!!!!!!!!!!!!!!!!!!! there is a lot of speculation that this is one of the factors responsible for the disappearing bee crisis and if the colchicine is inhibiting seed production in these plants............do we really know what it is doing to us I would rather spit out seeds than eat anything genetically modified!

Hi trubiano it is likely that your child may again have been exposed to strep and that the antibody titres are up Has you doc ever suggested azithromycin? (zithromax) It just seems from what is reported here that it has a more effective track record re the OCD:(which, as you know, is a symptom of PANDAS) the safest supplement to try for OCD is INOSITOL (one of the B vitamins) Methionine( also available as samE) is also veru good for OCD 5HTP is very effective for boosting serotonin levels, but should be used with caution as it can make some feel very edgy Honestly, if you are finding that your child is not doing well at crowded or exciting activities, limit or exclude them We learned early on in our TS journey that we were going to have to make adaptations (we hardly ever go to the cinema as that is a big tic trigger for my son, and he never swims in chlorinated pools anymore for the same reason) hope you manage to get things back into waning mode before school starts Cheri

yes Patty...you are right. CP, my son hardly tics at all when very focussed. The tics will also come out later Also, different people have the ability to also suppress their tics for varying periods of time

hi mblack the TV audio triggering a vocal tic is something I have noted here too, and with the eye blinking when spoken to by an authority figure, this could be a stress reaction ie feeling a tension with authority (which is not an unusual thing for a child...some kids twirl their hair or even their clothes etc and others shift from foot to foot or touch things etc when in a similar situation kwim? cant help re personal experience with tonsils but I do know that any infection is a tic trigger HTH Cheri

LOL nope...you dont have to use a corner Faith....middle of the room is fine I just wanted to be sure that the other things got attention too, while keeping Mike's PANDAS thread on track...we all tend to go off at tangents and yes, sometimes it is a very relevant continuation of a topic. This way tho, we keep these other topics from being buried in this thread.........

it may be a good idea to start a new thread for other issues so that we dont take Mike's thread on PANDAS off into another area. that makes it easier for those doing research here to stay on track thanks

interesting....my son has never described his checking as doubting his own memory.....but rather just the compulsion to recheck as he has crystal clear recall.