Chemar

I have started the "helpful threads" thread with the same format that we have on the TS/tics board so members can start building it here. I will ask our webmaster to pin it to the top of the forum

Hi to all of our members this thread is primarily for posting links to important topics here at Latitudes/ACN, whether link to a thread (copy and paste the URL in your browsers address and then paste here) or link to a specific post within any thread (if u look top right of the post there is a number eg #1...just click that and the post is brought up so u can copy and paste that URL) Any links for *other* sites, where you feel they would be beneficial to the members, are welcome, but it would be a good idea to really limit those, so that what is truly clear INFO 101 threads by our own members are grouped here, allowing all members, and especially newcomers, to be able to easily find them. We also have to be careful of the perception of "endorsing" research, products, physicians etc. If in doubt as to whether a link here is suitable, just PM me and we will check it for you What we want to do is try to only use this thread to minimize confusion and provide a comprehensive database of info that has primarily been gathered here for anyone searching for answers Please NO DISCUSSION on this thread. Feel free to start a new thread below on any topic here for discussion thanks for your help in putting this valuable resource together

it does sound interesting doesnt it...surprising more Docs dont use it.

Hi Buster the purpose of an Essential Threads sticky here would be to link to threads on this forum that members feel contain valuable and relevant info, rather than to use the sticky just to link to outside material. Referencing research articles etc in your posts is fine, but the problem with having a sticky just for those external links is that not all research always agrees with other research, and there is much ongoing as the whole area of PANDAS research is vibrant and in a continuous state of flux, so we dont want the appearance of "endorsing" any work over others, which is what the perception may be were we to directly link only certain research work in a sticky thread. so, for example, linking to your other composite threads is fine, as would be if you create a thread titled "Buster's Selection of Research Articles" or something like that and then list all the research you feel relevant there, and then link to your thread in the pinned one as this forum is new and will evolve over time, all things are open for consideration Hi Chemar, I had originally intended the "PANDAS research for your doubting doctor" and the "a little bit about ASO titers" to be a form of PANDAS and GABHS summary that I wish I had found several months ago. I'd sure like to see (and would be happy to contribute) to an essential thread that has references to the key papers (and their findings). The discussions are excellent but I also think some reference material or a FAQ would be great. Is there a way to put out a post, collect discussion and then nominate the post to the sticky state if it proves useful to enough folks? Every day I'm running across more material and would dearly love to share interesting papers I've run across with others who are also struggling with this wacky disease. Best regards, Buster

Hi myrose I dont know much about dry blood tests other than that it is used, I believe, to analize oxidative and metabolic parameters I found this summary on it: do let us know about the results and analysis as this is something that may be of help to other members too!

yes, I think this will provide maximum benefit to everyone to be able to keep the focus on those things that they are primarily here for ps If I accidentally move a topic to PANDAS that member feels is best suited to this board please let me know. As I cant read every single thread I am going by what is in the titles or opening paragraphs

hello Hope the bedding covers (known as hypoallergenic covers) are primarily designed to minimize the effect of dustmite allergens. we have used a variety of types, but have found the all cotton ones best. Some brands use an inner plastic layer and we found that induced sweating and discomfort, in addition to the fact that my son's MCS (multiple chemical sensitivity) seemed to cause reactivity to it. Some people use the woolen ones but as my son gets mega itchy from any wool products, we have not ever tried those. they come in a vast range of prices, but there are well made cotton varieties available at fair cost. Some of the cotton/polyester blends are also good. IMO it really is just the plastic/latex lined ones that one should try to avoid

if it is felt that a "sticky" thread here would be helpful like the "essential threads" on the TS/tics board just let me know and we can arrange that

thanks to our administrator and webmaster for creating a new forum here at ACN/Latititudes for all discussions related to PANDAS and strep I will be gradually moving all the threads that are primarily related to PANDAS over there so please dont think they are "gone" Redirects will be left on this forum for the threads that overlap some, others will move without redirect but will retain their URLs so if you have them bookmarked, you should still be able to access them the same way as before here is the link to the new forum http://www.latitudes.org/forums/index.php?showforum=17 the same guidelines and terms of service will apply there as on all of the forums here Let me know if any glitches or anything that needs my attention

thanks we will be gradually moving the PANDAS threads over here from the TS/tics board, so that we can keep things a bit more organized and help members find what they need most on the relevant forums

((((Dedee)))) so sorry for your new concerns Dr Murphy is now at University of South Florida (Tampa-St Petersburg area) and the phone # is 1-727-767-8291 hope that helps

((((((((((((myrose)))))))))))) I can only imagine how confused and frustrated you are feeling but hopefully by completing the additional testing you will have clear answers. Just so thankful your daughter is doing well now and praying for continued good health for her as I can only speak about Tourette Syndrome from personal experience I will limit my comments to that, and keep them real simple for clarity My comments are based on my family observations (3 generations of TS on husband's side known), my own "research" (including all the anecdotal info on many forums) and also what was explained to us by various physicians over the past 8 years, most notably Dr Vincent, who used to be an associate of Dr Murphy before he moved abroad. He taught me a great deal and also gave me a number of research articles to read to help me finally to understand the unique aspects of OCD related to TS Tourette Syndrome is characterized by motor and vocal tics. All people with TS have tics, and these are both motor and vocal, although they are not necessarily present simultaneously. TS tics wax and wane characteristically Some people with TS may also have also have OCD. The OCD that accompanies TS seems to be of a different subtype than "classic" OCD, and tics and OCD symptoms can sometimes "morph". This IMO often distinguishes OCD related to TS from other OCD sx so in a nutshell Not everyone who has TS has OCD, but everyone who has TS has motor and vocal tics. Therefore the most distinguishing characteristic of Tourette Syndrome is motor and vocal tics

yup fructose is natural fruit sugar and is generally very well tolerated HIGH FRUCTOSE CORN syrup is a bad food additive, as is sucralose(Splenda) interesting info there on the topamax, Kim

waxing and waning in tourette associated OCD and tics most certainly is *not* always a gradual rise and fall. It can be very dramatic and very explosive at times with no clear trigger.

myrose I would once again strongly suggest that you consult with physicians on this where everyone on the board has experiences to share and is trying to be helpful, yet none of us have seen your child's full medical history and none of us can do more than give our opinions, which, as you yourself say, is only succeeding in confusing and even scaring you Dr Murphy is in Tampa now, but I see you note that you cant get in. Perhaps her office would be able to refer you to a PANDAS specialist locally? Also do check with dr Franz as well in case she has someone to refer you to. It has been many years since we visited her but she did seem a very open minded person and certainly fully Integrative

myrose if your daughter is doing well on the topamax, why do you suspect there is PANDAS? presuming she isnt on an antibiotic is she? if not and no OCD, then imo highly unlikely she is PANDAS, but when history of strep always wise to check. was there any follow up on the suspected seizure activity? Do you still see dr Franz? I am not aware of any PANDAS specialists in Orlando but perhaps she may know

hi Patty I posted before about when my son was under traditional homeopathic care we did not yet have the TS dx, and were later told by a pediatric homeopath that I have much respect for, that the agaricus remedy my son had been on prior to intense onset of symptoms may well have "brought out" the TS to which he is genetically predisposed I would think it would very much depend on the type and concentration of homeopathic remedy and the constitution of the individual as to what may or may not help or intensify the tics. example Bach's rescue remedy (flower remedy) really calms my son and so helps tics.

Hi here is some general info on Tourette tics that may be helpful to you http://www.tourettesyndrome.net/tourette_primer.htm chart of tic types http://www.tourettesyndrome.net/Files/CommonTics.PDF it sounds like a vocal tic, but in truth one really has to see (or hear) first hand to be sure

could you be thinking of bioperine? (extract of black pepper=piperine) I mentioned once that my son takes it to enhance absorption of his curcumin/boswellin anti inflammatory

my son takes Boswellia with Curcumin (the BOSWELLIN formula by NOW) as an anti inflammatory for his Crohn's disease and it has had a dramatic and remarkable effect! even his doc is amazed. as an extra benefit it also is reported tohave serotonin enhancing properties

I have posted before on the danger of oral steroids for anyone with Tourette Syndrome where I agree that a nasal spray will not have the same effect as an oral or injected dose Just do be careful IF your child has TS as any steroid with systemic effect can have a very negative reaction

Guy you may also want to contact the TSA as I know they have funded research on cannibis effect on TS tics and there are reports of benefit, hence the successful use of the prescription med Marinol by some however apart from the obvious legal issues with use of "street drugs" please also remember that the "designer MJ" available nowadays can actually be very very dangerous stuff because it has been genetically modified and does not have the blend of chemicals naturally found in the plant which modulate each other. Instead it has aimed for excessivly high THC which can produce some severe side effects including phobias, paranoia etc and I have even seen reference to it triggering schizophrenia in susceptible individuals I hope you will see your doctor about this

I dont want browser freeze so havent opened it, but honestly ECT for tics seems a very drastic action IMO

from Physician's First Watch JournalWatch summary: http://firstwatch.jwatch.org/cgi/content/full/2008/626/3 CDC releases on the 2 combo vaccines: http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5739a4.htm http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5739a5.htm

my son's eye tics have varied over the years so dont fit any one pattern