Chemar

I heard someone needs a hug here Here ya go Marianne You are receiving such good support and info here that all I can add is to encourage your to keep seeking and asking and you WILL find answers. As most of us have learned, having an excellent doctor(s) to work with is essential BUT taking charge of the direction of treatment is something that we have to do ourselves. You clearly are doing so and you will find that, with a support group like this be able to vent, or cry, or inquire or share info with, you and your child will do just fine! welcome to Latitudes/ACN

Hi Michele we got a TS dx when my son was 10yo, but his earliest diagnosis was ADD (no H) with Central Auditory Processing Disorder (CAPD) and Sensory Integration Dysfunction (SID) My son was four and a half and just about to start k5 I honestly feel that, based on our developmental pediatrician's advice, having him privately tested by an educational psychologist (like Sheila is) and then getting him his IEP (while in private elementary school) followed by a 504 plan when he started public middle school into highschool has been the best move we ever made I believe it is essential to be proactive in letting teachers know what the dx is and that the physicians and you do not want to medicate pharmaceutically, but are instead trying a different form of treatments. Once you get the accommodations your child is legally entitled to at school, it is SO MUCH easier for him and for you, especially when you run up against those teachers who just dont get it when it comes to tics and other issues related to neurological conditions Having documented accommodations built into your child's educational career can spare him and you a lot os misunderstanding, stress and strife with educators. hope that gives a perspective from a mom who has been dealing with this now since my son was four and he is now seventeen. He is a straight A multi-talented student who would likely have been discouraged academically and emotionally looooong ago if it were not for the IEP and the 504 accommodations thruout his school career

yes, itsme, altho the Bach's RR is more of a calminative, we found it also seemed to soothe respiratory allergy symptoms for my son CP yes, steaming with aromatherapuetic oils is also very beneficial an African plant called BUCHU is excellent for this

hi humming is recognized as a vocal tic

I have heard good reports on the allergy remedies found at www.nativeremedies.com we run the air conditioner with specialized filters 24/7 and my son frequently cleans his nose with a saline solution, along with using Bach's Rescue remedy when needed. We also have a hepa filter in his bedroom

I would receommend asking on the Gluten Forum at NeuroTalk. They have a wealth of info and recipes, tip etc on living GF http://neurotalk.psychcentral.com/forumdisplay.php?f=13

Deanna I honestly dont know about that! perhaps you could try calling the company to see what they say?

Hi Spartan yes, testosterone increase is believed to be a tic trigger Dont know if you ever saw this article I posted once...but if you scroll down the article you will see the info on androgens there http://www.latitudes.org/forums/index.php?showtopic=1673 also, if you are new to fish oil, that could be a culprit too. some do fine on fish but we have many reports here and elsewhere of some people who have TS reacting to fish oil with more tics. you could try substituting flaxseed oil for a while and see if things improve

Jane I do seem to recall that just recently we had another member from UK here who needed to order products online too. I am not sure if she is still posting here. The best way to enquire re Bonnie's supplements is to send her an email via her website at www.bonniegr.com If your son is struggling with swallowing pills tho, he may have a problem with BonTech supps, not because they are large, but because a number have to be taken I am not sure if the drinkable magnesium powder "Natural Calm" is available there, but many of our members are reporting much success with it. You could also try the Epsom Salts (magnesium sulfate) baths (2 cups epsom salts in tub warm water: soak for 20-30 min bf bed) Those are two ways of at least getting the magnesium in I sent you a PM re the OCD too

A new member, Jane.c , has asked me to post her PM here on the board for input from other members

I think I can say for sure we have one of the most dedicated and loving groups of moms (and dads ) here I hope you all have a very blessed Mothers Day and that your children truly appreciate how special you are

Hi powerofprayer...what a great username Alison ( ad_ccl ) and Ronna and Dedee know more about the importance of the ASO and the AntiDNAse and the antibody levels that each is able to detect. I have always understood it may be necessary to have both for a clearer PANDAS dx, as well as the specialized throat culture (I forget the name now) but it is more sensitive I believe than the usual swab for strep throat) hopefully some of our members with PANDAS experience will be able to answer with more detail

hi Tatoomom fishoil triggers tics for my son, even tho he can eat fish with no problems I use mainly NOW or ORIGIN organic flaxseed oil for our family

Epsom Salts is magnesium sulfate, and the effect of soaking in this magnesium salt seems to be very calming for tics and also has a detoxing benefit

Lisa magnesium taurate is often preferred by people who have Tourette Syndrome as it is a compounded form of magnesium and the amino acid, taurine, both of which are generally beneficial for TS and yes, magnesium oxide is very poorly absorbed apparently magnesium lactate is one of the best absorbed forms.... tho many are reporting good results with natural calm magnesium salts which I believe is magnesium citrate

Hi Lisa an Integrative doctor is one who is a regular MD who has gone on to specialise in alternative medicine I think they usually have MD PA on their name naturopaths and homeopaths may but are not always also MDs Other docs who sometimes can help are DAN (Defeat Autism Now) as well as Environmental Doctors and DO's finding them is hard and sometimes searching specifically for the doctor type on google can be the best way

bumping up for new members who have asked about our treatment protocol for my son ps I have a very heavy work schedule at present re my online business, so may not be posting as many replies...but I am here checking in to Latitudes, throughout the day and will try to answer any specific questions

welcome to Latitudes Tricia yes, Faith is correct...tyrosine is one of the amino acids that are known to be tic triggers that could have been what was causing the increase for your child

welcome to Latitudes, Lisa from what you are describing I would certainly say that it is worth having comprehensive PANDAS blood testing done it has been reported that all the supplements and diet modifications will work so much better once the underlying issue of the strep antibodies is addressed, so if there is a chance that your child does have high strep titres (which can be the case even if throat swabs are neg) then that needs to be the primary focus for everything else to be optimal

hi Parisa there is a lot of very good info on PANDAS on our Tourette forum http://www.latitudes.org/forums/index.php?showforum=1 most parents are reporting that the antibiotic that helps most is zithromax/azithromycin

welcome to Latitudes/ACN Rom and thanks so much for sharing your story. Even tho my own PANDAS knowledge is limited (my son tested negative) yet I know how pediatric autoimmune neurological disorders assosiated with streptococcal infections has exploded, and how many kids are being misdiagnosed with Tourette's or even classic OCD, and other neuro disorders (and being given strong brain drugs for!) when in fact they have PANDAS and most likely will need prophylactic antibody treatment (where it seems Zithromax/azithromycin works most effectively) so every time we have a new parent join who has information and experience about PANDAS, we are adding to our database to help others! As to finding good doctors knowledgeable in treating PANDAS, they are few and far between at present. I know of some of the experts in the field who are Dr Susan Swedo in Bethesda MD who is associated with NIMH and Dr Tanya Murphy (who we saw) at the Shands Clinic in Gainesville, FLORIDA. Dr Murphy is the researcher associated with the Tourette Syndrome Association here is Dr Swedo's info http://neuroscience.nih.gov/Lab.asp?Org_ID=448 and here is Dr Murphy's http://mdc.mbi.ufl.edu/murphy.htm I also have an article on post streptococcal illness, written by doctors from UCLA. Perhaps these doctors are in private practice too? and may be able to either see or at least refer you? (The PANDAS info is about halfway down the article, but their names are on top) http://www.aafp.org/afp/20050515/1949.html hope that is helpful Cheri

hi kkver my son also has ADD with the TS etc and we have found much benefit from Borage Oil along with high omega 3 (we use flaxseed but fishoil is best, if it is tolerated) and Gingko biloba I have heard good reports on the ADD products from Native Remedies and yes, a good diet free of allergens and artifical stuff helps everything else work better

welcome Caryn Carolyn has been using the rotation diet with success so she would be one to give you good input on this when she checks in

Hi Alison yes, i had missed your post...sorry....I read here real quickly when posting this morning.... I was actually replying to Patty's original question as to whether her son was showing stimming I honestly dont know much about stimmimg per se as it is used re autism, but I sure do know about endorphins and OCDs/Tics that become each other and would likely be referred to as stimming by some??? The end result is that the person performing the action gets a "feel-good" reaction which either helps their condition or their emotions etc even tho to the observer it could even appear that the opposite should result as in actions causing pain and injury From my understanding, and as per what Kim posted, stimming is either to calm hyper or to stimulate hypo....so that is also where I think some people dont like the term, as the desired reaction is either calming or stimulating depending on the individual. here is what Wikipedia has to say http://en.wikipedia.org/wiki/Stimming

"stimming" is a term used for self stimulatory behaviours where the motion or sound is bringing pleasure or relief I know that some who deal with autism take offense at the word! http://www.autismtoday.com/articles/What-Is-Stimming.htm I honestly dont think what you are describing is "stimming"