Chemar

if you suspect strep may still be a culprit, I have read on the PANDAS board here about a test done by Dr Cunningham to measure camKinase which if high seems to indicate a PANDAS case? but I dont know enough about it to know if that is an accurate description...best ask on the PANDAS board for details. I do know it costs $400 ! and that you would have to do a blood draw and then send the plasma sample to her. candida can cause so many health problems! so it is good you are trying to eliminate it.

yup! we saw a rapid die off with it. I think it is the combination of all the yeast buster stuff it has in it my son was having a lot of epsom baths , pure water and also hot water with fresh lemon juice (1/2 lemon to 1 cup boiled water) to help the die off detox reaction and he also had acupuncture/biofeedback/reflexology to aid

bumping this up for anyone who may not have seen it and would like to submit their PANDAS story to Sheila

Hi Jules I can move this entire thread over to PANDAS forum for you and leave a "breadcrumb" here on TS if you like I cannot copy posts to multiple forums here tho

Hi LLM I deleted my own post earlier today as i felt it better to let Sheila respond as she had all the full information. I deleted it shortly after making it, for that very reason. I felt I was overstepping by responding and replied to the member in PM instead I posted again later when the continued posts to this thread called into question my motives as I felt it necessary to clarify thanks for updating Sheila, and I do hope this can all settle now so that the focus can return to helping the precious kids represented here

Hi I got your PM and have fixed the post for you. the quotes got messed up when you typed the reply which is why it all blended into one so let me start from the top yes, magnesium makes my son very drowsy so he gets his magnesium "fix" at night with his epsom footbath (or tub) and his calcium, magnesium, and zinc the continued confusion exists over the pros and cons of taking cal/mag/zinc together , some say dont and others say do. My son prefers them together and they seem to work fine. He takes 800mg calcium & 25 mg zinc from his supps for those, as well as some in his multi too. His magnesium is usually the natural calm and he also has a mag supplement of 400mg mag gluconate, if he decides on that instead of the natural calm, but the only mag he gets in the morning is from his multi (sadly Publix no longer makes the dye and artificial free one they used to. so my son uses Jarrow multi easy powder in a smoothie each morning.) he honestly isnt rigid about exactly how much extra magnesium he takes in, as many supps do have mag stearate as a binder. but it is minimally absorbed. my son uses the NOW brand p-5-p and yes, I get all our stuff at iherb as I find them cheapest, even factoring in shipping.. altho we have a new local health store here in my area that is selling all NOW brands at similar to iherb so I am stocking up. the NOW p-5-p is an oval tablet that can be easily scored and broken in half the samE is a form of methionine. my son used to take plain methionine but prefers the samE form now he takes 200mg a day only tho many people take 400mg daily hope that answered the questions ok

glad to hear he is thru the surgery and recovering Faith not sure re the pain med mix and tics. My son seems to have handled tylenol ok on the few times he has had it but hasnt ever had codeine. hope things just keep getting better for him

I have asked our administrator to post here as it really isnt my place to do so. as I am sure you are all aware, I have only ever tried to be helpful here, and in fact when the PANDAS topics on the TS forum where becoming many, I requested a separate forum just for PANDAS please understand that people sometimes delete their own topics too, and sometimes issues related to the forum rules (which are pretty simple...be nice, dont fight, dont solicit, dont spam ) All forums have basic rules! sometimes the issues are related to the way that ACN is set up etc these are things I will leave to the admin to explain here From my personal point of view, myself and the admin and webmaster have only ever tried to be as accommodating as possible to everyone here, so I am truly puzzled and regret that our motives are being questioned this way.

Hi Janna so glad this has been helpful to you he has been on methylB12 for a couple of years now when he was on the 5HTP, he took it at night and also took plain methionine, not samE. Now he just uses the samE, no 5HTP. He was on the 5HTP for about 2 years He still takes his Multi (Jarrow Multi Easy) that has all the B vitamins in it. he has never taken a Bcomplex separately the complex you got in New Zealand sound interesting, and as that is very low dose 5HTP and samE, it may be worth trying it

Hi Lilyma we used L-carnitine, not acetyl, and yes it really helped with vocal tics. I know others here have successfully used the acetyl form are you still giving the BonTech or have you stopped them? I ask because there is already B6 in them so just be sure you arent overdosing on B6 by giving the P-5-P as well. My son takes half in the morning and half at night He usually takes his zinc at night, along with the extra calcium and magnesium, but it is fine to take it in the morning...just always have zinc with food. We like the chelated opti-zinc by NOW best. Havn't noticed sleepiness from zinc but have from magnesium, again why my son takes his at night. If he is ticcing a lot, then he will have extra magnesium in the morning I am thinking you meant to say Vitamin C is an ANTI-histamine, which, yes, it is and so is good for allergies the only time my son has ever had real massive rage attacks is when he has had excess exposure to chemicals, either in food (MSG, coloring, artificial sweeteners etc) or environmental (perfumes, scented stuff, chemical cleaners, pesticides etc) Have you had any testing done? any strep history? other infections? recent vaccinations? that sudden rage attack you mention makes me think some trigger set him off, so sure is worth investigating

Hi Janne my son used to use St John's Wort but has not in a very long time. It was part of the supp program to help his OCD/depression/anxiety. Once that stabilized some, we reduced what he was taking.SJW is more recommended for depression than OCD he feels the methylB12 is absolutely essential to his system If he doesnt take it first thing every morning, on empty stomach with his samE, then he can feel irritability and a fuzzy brain reaction. He takes Jarrow sublingual methylB12 tablets. the other form of B12 (cyanocobalamin) is so poorly absorbed that it has minimal benefit currently he takes samE and Inositol as well as the P-5-P(B6) VitD3 and the methylB12 for the OCD/mood stuff however, when things were very intense some years back, the only thing that brought his OCD under control was 50mg 5HTP each night One has to use that with caution tho as some people react to it, and it is very strong

Worried Dad I posted the info re Latitudes Online Magazine as I had just received my notification of the new issue being up and saw it had some sections on PANDAS my post wasnt in any way suggesting it was Latitudes "up to the minute PANDAS info" nor was it representative on behalf of ACN rather, it was just just one member letting other members know that the new issue was out, and I actually posted it on TS/tics re the microwave and dietary stuff, but felt PANDAS forum parents might also be interested as I had seen those links for PANDAS info, not my "speciality" as my son has TS I have notified ACN's administrator of your post so that she can comment personally, but did want to clear up any misunderstanding that this was an "official" thread. She has been most gracious in hosting a PANDAS forum here at ACN/latitudes.

oh Carolyn! Aiden is soooo cute wonderful to hear how well you both are doing!

Hi some kids with Tourette tics dont seem to do well on fishoils for omega 3 but others do great. For those who dont tolerate it well, flaxseed oil is a good alternative as far as I know it is the essential correct balance between omega 3 and omega 6 that is important, and especially for anyone with autoimmunity, like in PANDAS, their should be a much greater amount of Omega 3..I dont know the ratios recommended, but it is because omega 6 is a pro-inflammatory agent, which is good in normal immune response but not good for autoimmune inflammation. Omega 3 is anti-inflammatory. fishoil has the highest amount of omega 3 so if a child can tolerate it, it is best I dont know about the use of this supp re autism so hopefully someone else will be able to give you info on that

sounds like you are making good progress in following all the right steps Laurie! I hope you will get lots of insight to help with a diagnosis, and so be able to implement the best treatments and see healing begin keep us posted please

I noticed the new issue of Latitudes Online Magazine has a piece related to microwaves too kids are surrounded by so much that is "off" for their developing neurological systems, and then add in all the garbage that comes in via artificial=chemical everything in food and surroundings.. this is such a very valuable discussion that is often overlooked yet surrounds them all the time! I cringe when I see the ads for those "cool" docking stations....mats and such where all their stuff like ipods and cell phones and more can hook in at night to charge up!

I know many of our members may not ever have been to the home page http://www.latitudes.org and many also dont know about the excellent subscription service online magazine from Latitudes/ACN http://www.latitudes.org/membership/1/curissue.html? interesting that we have been talking about EMF and I see there is an article on microwaves also articles on sugar, fructose, fats and health, as well as on Prebiotics & Probiotics, Food Additives and quite a bit on PANDAS, etc

the new issue of Latitudes Magazine Online is just out with quite a bit on PANDAS if you dont already subscribe, it is well worth it as each issue is jam packed with helpful and informative stuff http://www.latitudes.org/membership/1/curissue.html?

be sure tho when you get the strep test that you ask for a culture rather than just the rapid strep throat test!

we use ghee as well as coconut oil/spread...I buy the coconut oil, which is solid at room temperature, at my local Publix and a jar lasts a long time you can make your own ghee easily...and even walmart sells it now! $6 for a good sized tub here is what someone posted that I use to make my ghee

Hi Laurie glad the appointment went well, tho I dont fully agree with their saying TS tics are "simple"...in fact they are defined as simple and complex tics, motor or vocal, where for example an "uh" sound would be a simple vocal; tics while a string of coprolalia sentences in a mini tirade would be more complex tics. Similar with motor..an eye blink would be simple but a series of eye rolls, blinks etc or walking while twirling or kicking is complex tics this is one of my favorite sites for explaining TS http://www.tourettesyndrome.net it does sound tho like your son doesnt have TS tho do be careful on just accepting the behavioral dx as well....if they are uneducated re PANDAS, they probably are so in terms of what some other "triggers" can do to both the physical and the mental/emotional health !! cognitive behavioral therapy with a gentle therapist is a very beneficial thing so hopefully this will be an added help to your son, while you continue with the diet and check into PANDAS and other possible triggers one thing most of us here have learned the hard way is we often have more background knowledge than the docs do!! we just need their smarts in the medical field to guide us thru all this. That is why it is a rare treasure to actually find a physician who gets it, or is at least willing to educate themselves with an open mind about stuff one brings to them, rather than just to dismiss it from ignorance or unwillingness to think outside of the dusty old medical textbook!

thanks so much for sharing Hope! my son did some public speaking things too, once even for the TSA, and so I share that wonder you feel My son has always said that, despite the big challenges his TS has brought to his life, yet he knows he is a stronger and better person because of it most people with TS do seem very talented. Letting those talents be fulfilled is often one of the best therapies for TS!

magnesium is used as the primary supplement to reduce TS tics (some research info at http://www.bonniegr.com ) around 400-500 mg a day is the usual dose

I do just need to mention for balance here that some people with TS, or with allergic reactive tics, or some other trigger etc. can also exhibit symptoms of behavior that are erratic and "off the wall" in combination with tics I think it essential to check for a strep connection....but it isnt necessarily the ONLY factor that can result in these symptoms

thanks Bev we sure found that by just accepting the elephant as part of our family, it morphed into a mouse we have 4 cats.......... it's hard when we want to really just make it go away huh! hopefully for most, it will. that is so true of not letting the elephant ever get in the way of those plans and dreams!