Chemar

Hi Irena the Vitamin Shoppe is an excellent store (also online) and frequently their own brand is much cheaper and acceptable in terms of purity it is also one of the few stores where I can purchase monolaurin, the coconut derived antimicrobial we were never told to avoid NAC (altho I do not give it to my son) methionine is one of the aminos that is very helpful for OCD and anxiety (best used in the samE form) My son did not experience any upswing in candida activity while he was on it (almost four years) phenylalanine is one to be treated with caution because it is a dopamine booster and so can increase tics We used it for about 3 months in the D form (not the L form) as the D form stimulates endorphin release and that is beneficial for those who experience self injurious tics/OCD. The D form should not be used longterm! The L form helps with depression, but has that unwanted dopaminergic boost, and so should be avoided in people with TS

sorry I missed your question Deanna yes, we also use the GE Full Spectrum bulbs we used to buy very expensive ones thru a website, but have found the GE to be perfectly adequate and yes, I agree with Claire that you should avoid any fluorescent lighting ..........fluorescence is known to be a tic trigger, especially in photosensitive individuals

Hi CP the only iron supp my son can take without having increased ticcing and digestive upset is Solgar Gentle Iron, an iron chelate with 25mg iron bisglycinate he cant tolerate any iron in a multi and he also cant use any other brands of even gentle iron

Sunshine I absolutely agree that strep and all kinds of microbes can be treated naturally, with natural antimicrobials like monolaurin, olive leaf extract, garlic, honey and others, including some homeopathic remedies, and also by working to strengthen the immune system My concern is that when there is stealth strep of a level as to result in PANDAS and when the toxins that strep produces are possibly manifesting as rashes etc....that the natural methods may need a booster from an antibiotic As all regulars here know....I am pretty anti-pharmaceuticals myself ...both because of what prescription meds for Tourettes and OCD did to my son, but also because I feel more often than not all they do is mask the symptoms rather than cure the illness. In the case of PANDAS, although I personally have no experience with it, other than having had it ruled out by Dr Murphy at Shands Clinic when my son first began manifesting his tics and OCD etc, yet from what I have learned on this and other boards, and from my own reading, a correct antibiotic protocol seems to really be important in moving forward on the path to healing that does not eliminate the need for the natural treatments....quite the contrary, they are needed all the more because we know that where antibiotics can kill microbes, they also kill off the good stuff and so even more diligence in probiotic and immuno-boosting is needed anyway, please dont think I am in any way being critical of your decisions on how you wish to treat your child....I applaud you for being "in charge" of his treatment it was just that you had asked questions that I have encountered before with a PANDAS parent and their child did have secondary Scarlet Fever as a result of the toxic output from the strep and antibiotics were the only thing that resolved that for them I was just trying to share that experience with you in case that is what your son is showing, and always do try to emphasize that I am speaking only from my opinion (IMHO) rather than as an "expert" on the subject

Sunshine as i mentioned in my previous post, it is my opinion that the toxins are from the untreated STREPTOCOCCUS bacteria in his system i also feel the rash and flushing are related to these same toxins

toosilly specialized psychologists are trained to do Cognitive Behavioural Therapy

Sunshine the flushing and the rash IMHO are more likely due to the fact tht he has strep in his system than anything else. without antibiotics (eg azithromycin) to kill the strep, his body is continuously having to mount an attack on it and so I would think his immune system etc is in overdrive Does he ever run fevers with the rash? when kids are PANDAS positive and not being treated for it with correct antibiotics, one does have to be on the lookout too for Scarlet fever, a rash caused by the toxins that are excreted by streptococcus bacteria Itchy skin can also be a result of toxins within, which the epsom salts is bringing out you could try reducing the epsom salts to 1 cup and see if he still itches, or let him take a quick shower after the bath

Lenny I would like to recommend a very good forum that specifically deals with Celiac and gluten sensitivity.... http://neurotalk.psychcentral.com/forumdisplay.php?f=13

Irena GRAPE SEED extract is very different from GRAPEFRUIT extract, which is what your doctor is likely referring to if he is talking of citrus effects I know people on certain meds are told to avoid grapefruit However, grape seed is NOT the same thing at all and grapes are not members of the citrus family of fruits I may be missing something, but I dont see where that reseach in any way suggests avoidance of citrus bioflavinoids as we find them?

Hi John some are blood and some are urine and it usually takes about a week to get the results there are also hair analysis tests and some stool tests that can give some of the results

Hi Laurie I think you have learned the hard way what many of us have discovered....if a supp plan is working....tinkering with it can really cause upheaval! Personally, I think the B complex may be to blame here....my son cannot tolerate Bcomplex supplement....He does take a multi with good B doseage and seems to do fine with that.....but the minute we add any B complex things go wrong for him. He can take B's individually (tho I dont ever give him extra B12, niacin or folic acid as he reacts to extra of those too) IMHO Your son is already on a very high dose of Bs from his multi and really shouldnt need any more B at all, in fact, that multi may already have way too much B in it!! ...personally, I feel even that extra 600mgB6 a day is high! unless a physician has specifically recommended that amount. Those are just very high doses of B!!!! even for an adult, nevermind a child! Please do rather wait for his system to recover from the massive change it endured before you rush to medicate Laurie Honestly, from experience I can say that can bring a whole heap of extra problems, especially as his system is now so out of tune Maybe consider something simple like Bach's rescue remedy till the anxiety passes. You really want to allow his system to balance out again, and also consider switching to a multi that has less B content...it is good to give adequate B's and even at slightly higher than the RDA, but too much of a good thing can have the opposite effect!

I hear ya Kim...I hear ya

hey Kim great research as always! yes, I know the archaic suggestion is still there on NIMH re meds for PANDAS, but I still dont see why this neuro feels TOPAMAX would work? as an aside, noting that suggestion on fluoxetine (prozac) on the NIMH site here is a link to a discussion on NeuroTalk re those types of fluoride containing drugs (and fluoride itself) being thought to be responsible for the rise in fibromyalgia http://neurotalk.psychcentral.com/showthread.php?t=13427

CC NOW brand Candida Clear is by far the most effective candida treatment I have found, tho I know many people also like THREELAC Using caprylate with the NOW Candida Clear is optimum IMHO, in conjunction with a healthy diet that cuts down or out on the sugars, alcohol and high refined carbohydrates that candida thrives on It should be available at most health stores that stock NOW products...but the least expensive I have found is at www.iherb.com

I am so pleased to hear you have found an inner peace and a personal healing too Patty For me, all this is wrapped up in my faith.......when I spend time with God in prayer and worship and meditation on His Word, I find that the negative is dispelled from my consciousness and His positive flows in...........I believe that He is the "good vibration" in the universe and that when we draw on His power and love, it flows to us and so we in turn can let it flow out to others. And at those times in my life when I have been so consumed with the negatives of fear and worry and frustration that I am not able to even consciously pray ...yet even the feeblest whisper of a "help me God" starts that positive flow from Him to me For me it was truly liberating to understand that it is not my strength that matters but His and that it is HE who does the work of empowerment and equipping and healing if I will but open up to Him I do so agree with finding a doctor that one feels good about, and that has compassion and an approach to healing that is positive. blessings to you Patty, and may the positive changes that you are experiencing continue to envelop you and your family

Hi Patty yes, a couple of us here have written on the benefits of craniosacral therapy before It is IMHO, like acupuncture and chiropracty, a very very helpful treatment for TS, and a number of therapists do now combine them, along with deep massage and reflexology for optimum effects

I absolutely agree with Carolyn, Dedee an antiseizure medication to treat tics induced by streptococcus infection is IMHO a VERY strange treatment route and I would have to wonder if this neurologist actually knows anything about PANDAS?? the ONLY really fully effective treatment for PANDAS is prophylactic antibiotic use, preferably with azithromycin (zithromax) Introducing a medication like Topamax is beyond my ability to comprehend?? did she explain why???

CP Vital Choice is an excellent source of seafood and MUCH healthier than anything in the stores I dont know if you have read "The Maker's Diet" by Jordan Rubin....at the back he has a large section filled with information for online and mail/phone order from reputable places to buy everything from eggs and cheese through meat, poultry, seafood, groceries, veggies&fruit, herbs etc etc etc (plus a wide range of yummy recipes)

if I may comment honestly on this....why is an 8 year old being allowed to stay up watching cable till after midnight? and also speaking to a parent that disrespectfully. There may well be a lack of discipline underlying much of her behaviour IMHO, and it is up to you as the parent to set rules and boundaries to ensure that she treats you with respect and goes to bed at an age appropriate time. This doesnt have to be accomplished harshly, but it does take firmness and consistency from you as the parent In terms of the issues like the collar and the velcro needing to be "just right"...this does sound like OCD, but only a qualified physician can make a diagnosis as to whther she has OCD, ADHD or both It may be very helpful to consider counselling, both for her behaviour and also to help establish the right approach to parenting a child with these issues, and also Cognitive behavioral therapy (CBT) can be very very helpful to her

hi Lenny glad to hear you are seeing a respite from the tics honestly, it depends on what the root cause of the tics were, as to whether you can confidently feel they are over If Tourette Syndrome, then yes, the supplements can and do seem to promote less frequency, duration and intensity of tic waxing periods....but people with TS tic, and the tics wax and wane. Sometimes the tics go into remission (usually when the hormonal teen years are past)...a two month period with no tics would seem to indicate to me that your child does not have TS If your son's tics were induced by some other factor, whether dietary, environmental or illness...then there is a very good possibility that, provided you keep his system at this optimum with supplements and whatever trigger avoidances you are doing, you will hopefully have seen the end of his tics. I would be remiss if I did not point out that yes, even in transient tic disorders, tics can sometimes resurface and no, that doesnt mean the supplements are not working....it usually means that there is some new trigger or underlying issue that needs to be addressed ......so dont be alramed if you do see a tic re-emerge..........most often this is due to a slip up in diet or stopping the supps that have been working or, most frequently, an illness or stressful occurrance or some new environmental trigger (eg chemical exposure, new paint, new carpets, new car etc etc etc) nevertheless, having said all that, when you see a period like you have with no tics....you have every reason to be very hopeful that they will not return. Just keep on doing the good stuff you are

oh...that is good news that the ban on tryptophan is over ortho! I hadn't heard that and am pleased to know that they no longer are restricting it I may well see if my husband does better on the tryptophan than the negative effect the 5HTP has on him as for my son...hmmmm...he does so well on the 5HTP that I am loathe to change anything CP, I prefer the chelated zinc

thanks for that very interesting article, Carole!

Irena tryptophan is not available in the USA...only 5HTP some people benefit from the serotonin increasing effect of 5HTP .....BUT for others it makes them very jittery and has other side effects....similarly with tryptophan My son reacts well to 5HTP (no more than 50mg each evening)....my husband cannot go near it! It MUST always be taken with VitaminB6 and should NEVER be used in conjunction with any medication or supp that also boosts serotonin( eg SSRI antidepressant medications) as a dangerous effect known as serotonin spiking can occur Boosting serotonin is not done to reduce tics, but rather to help with the co-morbid issues that can accompany TS eg OCD, depression, anxiety, insomnia etc....some people do find that the overall relaxation effect in turn reduces the tics IMHO, and especially for a child, it is better to start with INOSITOL and if an amino acid is needed, try methionine or it's optimum version, samE Again, vitB6 is needed with these for optimal effect

Faith why do you need to give the teacher details of what you are doing? Surely a simple "we are running tests and trying various treatments to find the most effective one" should suffice? For your mom or family etc...you could explain that you are concerned about potential bad side effects from pharmacological medications and so are first exploring the natural treatment options that have proven to be very successful for many people. If you have Sheila's book, you could give that to your mom to look at. that is how I would handle it. you sound like you need one of these

sorry CP...I thought I had explained amino acids that occur naturally or in things like Royal Jelly etc are ok UNLESS one has a very specific sensitivity to any of those amino acids when supplementing witha comprehensive concentrated amino acid supplement, many people with TS find it makes them tic more, because of the specific amino acids in the complex that stimulate dopaminergic systems and hence increase tics it is therefore better to give things like taurine, methionine etc separately if needed than to give an all purpose amino acid HTH