Chemar

Indigo I know nothing about IVIG other than that a young girl from our church is having it for complications from Lyme Disease and is having really bad side effects. They are continuing the treatment tho but I know it is proving hard going. This could be related to the severity of her condition (possible Lyme induced MS suspected at this point) and so again I dont know how relevant this is to what is done with PANDAS kids. I guess the benefits must be outweighing the side effects if they are continuing tho.

lol ms Kim you speaking a foreign language again! I will spend some time trying to digest all this (as you know my brain turns to jello with most of these research papers that use many formulae or numerals) but it is of much interest to me as the auto-immune link sure seems evident in both mine and hubby's family trees just wanted to thank you again for the time you spend sharing this info here. I think there are many golden keys that could unlock doors to healing in much of what you detect.

no experience with SPECT Guy, but thought you may be interested in taking a look at Dr Amen's website and work if you dont already know of it from PBS etc http://www.amenclinics.com/

a referral or some kind of direction would have been nice tho

the statements were kinda emphatic P.Mom and dismissive of any other point of view, and so I can see why feathers have been ruffled. i have heard from more than one person upset by this however, once again all I can do is ask that everyone respect the fact that we have a forum made up of people with many and varied diagnoses with only tics as the common denominator. We just need everyone to be careful about trying to negate the diagnoses that others have or to insist that they must fall into one category. It does tend to get people upset when they have been through extensive testing with reputable physicians and know their own children's medical history. I know that wasnt the intention as such. But it can come across that way. anyways, I hope all will maybe reflect on this and try to remember that we all come to this place via very different paths and where they cross each other and we can help each other that is a blessing, but we cant presume that our path is the only one that leads the right way. That is IMO what has gone wrong in so much of conventional medicine and is after all what has brought many of us here in the first place. with much care and respect for all of you

lol Guy based on some upsets here tonight I can emphatically say not "everyone" I am surprised tho that you were given such a brush off and so do hope you will find someone who can point you in the right direction

((((((((Tami))))))))))) you are way too valuable a member here to lose you. I am hoping you and PMom can maybe just agree to disagree just remember, there are people who find hope when we share what we have experienced and what you have to contribute is so valuable i always remember that if just ONE child can be helped by me sharing what we have been thru........... deep breath and maybe rethink....the nest wouldnt be the same without ya

I sure hope everyone remembers that I do not hesitate to step in when any form of flaming occurs. I feel this board's strength has always been the mutual respect shown by our members along with the understanding that there is not one answer here. The Forum is for anything related to tics and over the years we have had some very interesting discussions that have sure revealed just how many different issues there are that can cause tics and how treating those issues can often resolve the tics I am sure Dr K is an excellent doctor and I am glad he is so very helpful to those with PANDAS but it really has to be remembered that this is a board where we have members who represent either themselves or family members with a very wide range of diagnoses and causes for the tics. It most definitely is not "all strep" here ...... just like it isnt all "tourette syndrome" or "vaccines" or "dietary allergies" or any one thing. It becomes very frustrating for those who know they are dealing with other issues when the PANDAS dx is injected into almost every discussion, as has been happening lately. I am really thankful that we can offer a place with so much info for PANDAS parents. But this place is home to others too and so we all need to be able to get along and respect that fact

very good point Tami my son has always ticced way more when he is ill and especially if he has fever. Interestingly tho, he hardly ever has illness like colds etc these days, which we have mainly attributed to his excellent supplement and diet, and as chemical free a life as possible.....

sorry but I find it very hard to believe "80 to 90 percent of those with OCD and Tourette’s are strep carriers" I feel the same when any docs start attributing everything to vaccines, or diet or.... or...... or......... my son has full blown genetically inherited Tourette spectrum and was evaluated for 6 months at Shands under dr Murphy's care and showed no positive strep cultures or elevated titers. They classified him "not PANDAS" He has never exhibited any strep symptoms and when his brother had strep throat some years before his TS manifest fully, we had him checked too and culture then was also negative now do I think a microbial involvement could be at the root of things....very possibly. I do feel my son my have a PITANDS component to his health issues. But I dont believe it is necessarily just strep bacteria ....there are many other microbes that have negative neuro effects there are many factors at play, including genetics and where the strep connection may be a big one, I feel a lot more research is needed before such a claim can be made in such an emphatic way. theories and opinions abound. this is just one of many

Guy my husband remembered recently that as a child he was so seriously ill with strep/rheumatic fever that his grandmother stuck him in a tub of ice while his mom was at work. he doesnt remember how old he was but prolly around 3 yo. all family are deceased so i cant check. His dad definitely had TS based on the symptoms I remember in him, and from what I have learned of his paternal grandpa, he likely also exhibited TS spectrum I also think there may have been TS in cousins on my dad's side when I think back to childhood and what I now know about tics and the TS spectrum however, I have wondered often about my son and whether a microbial infection triggered his TS manifestation, (he has never had strep to our knowledge, although my older son did have it once, and has no tics/ocd) when my TS son was tested at Shands under Dr Murphy in 2000 we were told he did not meet PANDAS criteria, but from what I have later learned, one needs a lot more blood titres done. His throat cultures have always been -ve My son had explosive manifestation of tics/OCD/depression just after his 10th birthday, dec 1999...tho we realize he had likely had some tics from infancy, and had always been prone to moods/behavioral issues. we just didnt know much about TS then and my hubby was not formally dx till after my son'd dx My son does have epstein barr antibodies tho he has never had mononucleosis. and I also wonder about mycoplasma pneumoniae related to his crohn's All this does make we wonder if he is PITANDS if not PANDAS undx. he does respond well to monolaurin, the natural antibiotic, from lauricidin found in coconuts which he uses periodically tohelp re the crohn's stuff I also wonder whether maybe my hubby's own TS was triggered by that childhood infection ie could he have had PANDAS? and how did that maybe affect his sperm? lots of questions but no answers just thought I would throw them out there to add to your research

Hi Lyn Natural Calm is magnesium citrate but what makes it special is that it is an ionic formula that is very rapidly absorbed. It's available at iherb.com for a lot less than in health stores (the large tub at iherb is around same cost as the small ones elsewhere) Mommy so glad to hear your good news massage/chiropractic has always been very beneficial to my son along with reflexology. we havent ever done actual cranio-sacral although my son's chiro and acupuncture therapists did teach him some pressure points to relieve on his head/temples and upper cervical area. I do think inflammation is a big trigger and so anything that can relieve it is so beneficial

http://www.jonbarron.org/diabetes-program/2008-09-29.php more deceptive advertising to try to "sell" unhealthy additives

Hi my son has dustmite allergy which definitely triggers his TS tics, plus irritability we use a HEPA filter in his room as well as non plastic protective mattress and pillow covers frequent vacuuming/dusting helps as well as trying to keep things that harbor dust (eg stuffed animals) out of room or frequently washed. We have tile floors not carpets which also helps this may not be the primary cause of the tics and it is good you are looking at other possible causes, but allergy definitely makes things worse IMO

I just wanted to welcome you and say I hope you are finding the information and support you need here My own business/family and other commitments have left me so much less time to go through all the posts here, and so I do apologize for not welcoming you on your threads. I am here because the Latitudes website ( http://www.latitudes.org) and magazine were instrumental in helping me find answers for alternative treatments for my son (who has genetic Tourette Syndrome) when he was having severe reactions to medications back in the early 2000s. (I have a link in my signature outlining what helped him) It has been a real privilege to see this forum grow into the active community it has become, covering so many different areas related to tic disorders. we have a section pinned to the top of the board for Essential Threads that contain what we hope is info that will be helpful to others http://www.latitudes.org/forums/index.php?showtopic=2459 there are many more "essential threads" here that arent yet listed there so do make use of the "search" function at the top right of each page to find info you may be looking for may you find hope and and paths to healing here

Caryn yes dark choc is great and Dr Weil has been touting its health value in moderation and again checking the "other ingredients" I am a chocoholic so real pleased to have a healthy reason to eat it.

Hi faith yes, caffeine is considered a tic trigger. I posted a bit above as to why it is often difficult to find balance between some things that help mood while remembering that they may yet be tic triggers green tea has very low caffeine thanks Pmom for clearing up re the "vitamin" water and glad to hear it is all natural. the only ones I had seen were those propel with sucralose

(((((((((((((myrose))))))))))))))) thanks for explaining and know my care for you and your precious daughter has always remained the same

some of that stuff, at least the Propel brand, has sucralose aka splenda which is linked to a lot of health issues and definitely a tic trigger for my son www.mercola.com has a lot about sucralose/splenda dangers Dr Weil has loads of info re the health benefits of tea. I am not sure why the amount matters. A cup of tea will either help or not as mentioned before, my son finds strong black tea very soothing when he is anxious. He drinks 2 cups green tea each day I drink about 3 cups black tea myself daily and another 3-4 cups green tea and I know it helps soothe my mood too. I dont dare have coffee tho as it wires me and does same for my son.

I took caffeine tabs once when in college to stay up to study......it messed me up for days. Just do be careful especially with kids. tea has high caffeine and actually has some health benefits too. a lot safer than pure caffeine IMO

ps I take glucosamine for rheumatoid arthritis and it helps BIG time I can feel the difference if I dont take it!

I really do want to caution again about the other ingredients in Pepsi Max so no one starts giving it to their kids in hopes of medicinal benefit. aspartame is known to be one of the biggest tic triggering food additives in addition to other effects on the neurological system etc and the evidence mounting about the very dangerous effects of sodium benzoate make it alarming considering how many foods it is in I do think the benefits trubiano noted were related to the very high caffeine content and /or the panax ginseng and that this was related to mood and anxiety and focus etc not to tics. caffeine and possibly even ginseng are not generally considered good for tics...in fact the opposite with regards to caffeine which seems to be a tic trigger for many again one needs to balance benefits in one area vs negatives in others....but at the end of it all I really dont feel, looking at pepsi max ingredients, that one should consider it "good" for kids, especially any with neurological disorders. I dont imagine for one moment that trubiano was suggesting that...rather noting a result from an unexpected source and trying to determine what caused the positive effect lol tho I am sure her son is definitely trying to get her to buy pepsi max by the case full

Hi Caryn yes, there is actually a very interesting research on ginseng and PD, and it was becasue of reports by one member of PD board at NeuroTalk, that my hubby decided to ask his doc about it's possible benefit for him the studies suggest ginseng has a neuro protective role, rather than one of neuro stimulation...ie the dopamine receptors are being protected from the breakdown they suffer in PD rather than dopamine production being increased my hubby's tics have been up since the steroid burst (which happened a while before he started the ginseng), but he is not noticing any further tic waxing when he is on the PANAX ginseng. he did not like the other kind of ginseng at all. but it really is the MOOD stabilization that he has noticed the benefit on and that it 'defuzzes" his brain...brain fog has been a problem since that steroid burst. most of all he appreciates the help re the "going problem" as that was really getting to him Trubiano, I have just looked at the ingredients on Pepsi max and where the high caffeine or the panax ginseng extraxt may have had a benefit, I would strongly caution against its use regularly as there is a lot of stuff in there that is baaaaaaaad including aspartame and sodium benzoate.....

bet your son is hoping its the pepsi max, trubiano my son finds drinking strong black tea very soothing sometimes (tho coffee buzzes him in a negative way) so yes, I do feel caffeine may have a role. He drinks a lot of green tea daily too which isnt as high in caffeine but has a real + vibe for him my husband has been taking panax ginseng (NOW brand) for a few months now on physician recommendation and did notice that it really calms his mood/anxiety etc If you take a look at what is on the Natural Encyclopedia about it you can see the mood stabilizing and enhanced mental function effect http://healthlibrary.epnet.com/GetContent....;chunkiid=21536 my husband did try the other kind of ginseng too but only the PANAX type has this positive effect for him it has also helped tremendously with his "going problem" as he always had the urge to urinate but either couldnt or did not feel it completed so would have to go frequently....since starting the ginseng that has really resolved well so far son wont try it as he is very resistant to adding any new supps at present but thought I would share the plus it has been for hubby

hi jtp and welcome in addition to the other suggestions above, I would also consider that perhaps an allergy to penicillin iswhat triggered the worsening of things the first exposure would have sensitized and then the second exposure causing an immune reaction it happened to me as a child and I was very ill for some time from an allergic reaction to penicillin where I reacted only after the second exposure.