Chemar

good that he is getting Inositol Juls but wow!! that is a VERY high dose of Inositol. The usual for kids is around 500mg a day or up to 1000mg under deficient conditions so I am very surprised by that level? It does sound like he is getting a very good combination of supps Just to mention, for my son MSG (monosodium glutamate) is possibly the biggest trigger for his OCD, followed by the dreaded food colourings and the artificial sweeteners(nutrasweet/aspartame and splenda/sucralose etc) Illness, lunar cycle and now it seems, environmental allergies also seem to cause OCD waxing for him

welcome kkver I too would suggest asking your doctor to run the comprehensive BLOOD tests to check for strep antibodies and so PANDAS A throat swab is not going to give that info and yes, it does take a while for the antibody levels to be detectable Altho it is good to begin healthy diet and supplements, yet, if PANDAS is the underlying cause, the lurking strep needs to be treated

what a great article Kim!! Bonnie really does have so much info and research CP best to start with 50mg and work up if needed also some people seem to do much better on P5P than B6

Welcome Juls that is so encouraging to hear how effective the supps are for your son yes, what you describe as "stuck" on things certainly does sound like OCD The samE and GABA can be very helpful there, but I too would suggest adding INOSITOL at 500mg/day Inositol (aka VitB8) has a gentle yet effective way of increasing serotonin levels, which are known to be low in OCD There is also 5HTP, but my recommendation would be to try the Inositol first as some people dont react well to 5HTP If the VitB6 in your Bco is under 50mg, maybe consider supplementing that too (or better yet P5P)

hopefully Ronna or Alison will stop by and share what the results mean, as they are our 2 moms who have a LOT of experience with PANDAS kids once you have the actual figures, it would be very helpful if you could post them here as a reference source

Hi although I am not Catholic, I can attest to the fact that if it were not for the comfort, hope, peace, guidance and understanding that God graciously provided for me and my son on this journey with Tourette Syndrome, we would assuredly not be in the better place that we are today than when this all started for us. Time and time again, I have been so thankful for the clear answers to the many prayers said on behalf of my son by myself, family, friends and caring others. And, through all this over the past 8 years, my son has come to faith in Christ in a very deep experiential way, which, even more than his physical and emotional improvements, is the primary reason I am so thankful to serve a risen Lord

hi CFinEP it may be worth doing PANDAS testing to see whether all the children have high strep antibody titres.....when you say your sone has only had twi incidents when tics and strep were linked...was this strep throat or strep antibodies?

deanna probably the best person to help you understand the exact dosage in compounded substances like natural calm would be mrs doubtfyre, but she only checks in here on occasion if you would like to ask her on the Vitamins etc Forum of NeuroTalk she checks in there quite often here is the link http://neurotalk.psychcentral.com/forumdisplay.php?f=49

very interesting article Daniel...thanks! so much research seems to indicate that a mediterranean diet, rich in fish, fruit, veggies, nuts, seeds and superlative olive oil etc is by far the healthiest diet around! (and oh so tasty too!)

My son was on the zithromax (azithromycin) Z pack (5 day course) last year for an infection and we did not notice any particular change in his tics as far as i can recall....but then I really wasnt looking for such an effect and was just watching the infection rather than the tics

severe ticcing is generally considered to be that which interferes with the individual's ability to function in normal daily activities, and also when tics are injurious. It relates to tics that are very frequent and intense. as parents, it is hard for us to ever see even the slightest thing "wrong" for our kids, and so yes, we may react deeply to what someone else might consider a mild tic. however, in terms of the actual definitions of tics....severe tics are ones that impair normal functioning and/or cause injury or potential injury

for the person who contacted me in connection with this thread, but gave no reply email address you can get info on Bonnie's vitamins at her website http://www.BonnieGr.com

itsme I dont like to try to put figures on things like that but before he was debilitated and hospitalised and had to be withdrwn from school from severely injurious tics I try never to specifically name my son's tics as I understand full well about speaking of a type of tic being a trigger for others who have TS..........but my son's tics were very frightening back then Once he came off the meds and started the natural treatments those severe, complex and injurious tics stopped TOTALLY and have never returned, and he is now 171/2 yo His tics became very mild and have remained that way...even when waxing they do not interfere with his normal life

10-11 yo was the worst time for my son in terms of severity, frequency and duration of tic waxing phases hard to say if it would have continued but we started on the alternatives a month before his 12th birthday and everything dramatically improved

Mike Ronna and Alison are likely the best ones to answer this for you as they have been dealing with PANDAS in their children for some time now If I recall correctly it was a continuous rollercoaster till they had the full course of azithromycin followed by prophylactic use

I first heard of this very disturbing news about the bees a few months ago! Although I know we here in central Florida have much higher pollen counts (and hence allergy symptoms) than normal because of our drought ..........yet news reports indicate the polen count around the country is at record levels wondering if the disappearance of so many bees is related to more pollen being around ie the bees are not collecting as much etc etc there are many news reports and articles on the bee disappearance........here is a recent one from ABC News http://abcnews.go.com/WNT/story?id=2999495&page=1

Mike I am not a PANDAS expert as we have never dealt with it... but it has always been my understanding that the immune system here would be under attack because of having to continuously fight off the strep......therefore boosting it would be helping it? ie from what I understand the autoimmune reaction here to the strep is in effect damping the rest of the immune system. at least, that was my understanding perhaps those with more knowledge and experience of PANDAS would be able to correct me on this if it is inaccurate Dedee fish oil is by far the best source of Omega 3 EFA however, SOME people tic more with fishoil If this is the case, then the next best source of Omega 3 is flaxseed oil

yep

I tend to agree this is likely referring to good nutrition along with immuno boosting supps, antioxidants and phytonutrients etc

what great replies you have received Gina as to your question re EPSPM SALTS BATHS Epsom salts is magnesium sulfate and spaking in a warm tub with 2 cups of the salts dissolved in the water brings an immediate calm and seems to soothe my son's tics and give him a very peaceful nights sleep. He soaks for around half hour, tho 20 min is fine. He likes to have a cup of chamomile tea and I always try to get him to drink a bottle of Aquafina water while soaking too other people have also commented on the benefits of these "sitz" baths on reducing tics

((((Gina)))) it is good to see you again, tho I am so sorry it is under these circumstances I know this is going to be hard to hear, but at 11yo your son is now in the classic time for the worst of TS.......when the puberty hormones are on the rise. are you doing Epsom Salts baths? Highly recommended for these waxing times I would also try Bach's rescue remedy as that can help to bring calm with severe tics and also seems to help with allergies also, in terms of the supplements that he is on....can you list them and we can see if there is anything we can give input on The best encouragment I can give you is to remember that THIS TOO WILL PASS

we NEVER have Pizza Hut but only eat pizza from our mom&pop Italian cafe here locally...good stuff! with all the food scares recently, plus this horrid pet food situation, and now the very real possibility that the tainted wheat gluten may have found its way into the human food supply............. well I sure am glad that I cook from scratch and only use organic from reputable suppliers! and when I do buy anything in a packet, or jar I read every detail of the label We no longer have anything from an aluminum can thanks for posting that Carole! hopefully anyone still using the Hut for their pizza will switch or start making it at home

itsme rebuilding immune system is dependent on how much it has been suppressed and what you are doing to boost it Probiotics, antioxidants and immune boosting herbs and supplements all help also check with your doctor about Uno de Gato (aka Cats Claw) which is a very powerful immune boosting herb, usually taken in liquid tincture form or tea. I stress very powerful and that you should consult with a knowledgable physician before giving it to a child, especially such a young one Kefir is a real help too, as is natural yoghurt My son has Crohn's Disease and we refused any prednisone for him as we knew that steroids are a tic trigger There are natural anti-inflammatories that work as well, if not better and even the regular GI specialist is amazed at my son's progress on these (He is the doc that insisted that without steroid treatment my son would require surgery )

lenny pesticides and fertilizers (ie chemicals!) on lawns are known to trigger tics

Mike there are reports that Kava Kava can cause a strain on the liver so I would avoid using it for a child. It also has somewhat of a hallucinatory reputation if I recall correctly similarly I really would be cautious of valerian in a child...........it is a VERY powerful herb (never mind that it smells like dirty old sox )