Chemar

I think you are misunderstanding me I am saying that perhaps some kids just plainly and simply have never had strep and they they therefore do not have strep antibodies, nor have ever exibited any signs or symptoms of strep. however, those same kids may have eg Lyme Disease and so have PANDAS-like symptoms and be classified PITAND, but without the strep having triggered their disorders ie triggered by another microbe I am not saying that kids with low strep titres are not PANDAS but that some kids with PITANDs may not have ever had strep infection ie a PITAND diagnosis can be given without any evidence of prior strep infection

my understanding from what I was told by dr Murphy was that there would still be at least some evidence of antibodies to strep even if a strep infection had never been "noticed". ie even if the antibody levels were not raised, there would nevertheless be some antibodies if strep had ever been in the persons body

From my understanding, the initial infectious trigger does not *have* to be strep to initiate PITAND ie a PITAND child isnt necessarily also a PANDAS child tho all PANDAS kids are also PITAND (if that makes sense)

one doesnt need to swallow the fluoride (or anything else in your mouth) for the transdermal absorption to take place and have a negative effect if one is sensitive to it.

just an FYI that many kids with neuro probs seem to have extreme sensitivity to fluoride my son got very ill whenever the dentist did the fluoride stuff and this was way before we even knew he had neuro problems I learned later about fluoride triggering some kids

done my vote for the day I see you are now ranked 82nd!! btw not sure if you know, but you can also apply a shortened URL now to your facebook page (allowed once you have 25 or more members) you can choose anything you like, and people who have the old url would still be able to find it so you could make it www.facebook.com/ProjectPandas instead of the current long one http://www.facebook.com/username and look in the drop down box for the page you are changing

Hi and welcome we do have members who note that the tics seem to be seasonal but generally those are ones who see an upswing during the spring&summer/pollen season due to allergies but we have had numerous reports here of a negative reaction to flu & other vaccines so it well may be something in the flu mist that he is reacting to do remember that blood tests alone cannot diagnose PANDAS, but rather a combination of strep history, throat cultures, blood tests and other clinical observations. A regular pediatrician often is not up on the latest diagnostic methods also note that infections other than strep can also produce PANDAS like symptoms = PITAND reading what you report tho, it just doesnt sound like PANDAS/PITAND as it does n ot usually have that kind of seasonal pattern nor does it just resolve without antibiotics or some other intervention to fight the infection and reduce the inflammation hope that helps

I would think by now you would have noticed an improvement if the gluten or dairy were connected to the tics the fact that the allergies are improving does seem to suggest a sensitivity there maybe? hope the new doc is able to be of help

Hi Colleen I have no doubt that most of you know far more than most physicians will ever know about PANDAS, but that does not remove the serious liability issues involved in advising someone to alter their prescribed medication dose, especially when a child is on more than one medication, and may have other issues than PANDAS in the mix My caution is not meant to denigrate the expertise PANDAS parents have with this illness, but to remind us all of that fine line in sharing our own experiences and the serious liability problems of "dispensing medical advice".

Melanie, please do be careful about altering the dose on a prescribed antibiotic without first consulting with the prescribing doctor! as much as others here want to be helpful, it really is not a good idea to alter the dose of a prescribed medication based on internet advice. You need to first check with the doctor to be sure it is ok to do so, especially as Danny is also on other medication!

Hi Debbie I dont have much time to post right now but just wanted to try to encourage you remember, if it is Tourette Syndrome manifesting with the Aspergers, you wont always be able to find clear "triggers" for all tics...sometimes it has more to do with hormones and other internal things that one cant possibly track. That mysterious "waxing and waning" that is so characteristic of TS just keep doing the best you can re identifying things that may be triggering coming off the meds and the resultant withdrawal issues can in itself be a trigger, which one just has to ride out if one decides to go med free re the grapes, some people have salicylate sensitivity and grapes are high in salicylates. Some people with TS follow the Feingold diet which advocates low salicylates. Not everyone has this sensitivity but it is worth checking into if you dont have evidence for him needing to be GFCF then it may not be necessary for him. My son is not limiting gluten and dairy for tics, but for his Crohn's. Eating gluten and dairy foods has never seemed to be a tic trigger for him remember too that some (not all) people with TS seem to be intolerant to fishoil (even tho they can eat fish without problem) That is why my son gets his omega 3 from flaxseed oil I also noticed you mentioned that he was ticking more after mowing the lawn. that could be allergy or, if you use outside pesticides/fertilizers, they could be the trigger there. remember too that the hormonal years of puberty are the worst for tics, as the steroid hormones are dopaminergic, and dopamine seems to be at the root of TS tics, so hopefully you will begin to see things stabilize once he is out of the teens. I am not sure if there are any interactions with the meds he is on, so do first check with the pharmacist or physician, but the amino acid L-carnitine seems to help with vocal tics in many people it helped my son very much when he had a screeching tic years ago, but interestingly when he tried it again a few years later, it made him restless and edgy. will keep you and your son in my prayers for guidance and comfort. I know how hard it is when we want to make things better for our kids and feel helpless. Hoping too the hearing re the insurance will be favorable for you. God Bless Cheri

that is so good to hear CP

congrats!!! on my way to vote on FB

one of our most active and helpful posters on the TS board withdrew from posting because it was so upsetting her son I think one can still be involved and advocate without having to post about one's child. Having you child's trust is most important IMHO My son doesnt mind me sharing about him as he wants to help others, but if he asked me to stop, I would continue posting to try to be helpful, but would just stop referring to him in any way. also, your son is at that very awkward preteen age where image and acceptance etc matters so much to them, so he likely just doersnt want to be seen as "different"

we were taught that probiotics and antibiotics should have at least 2-3 hrs time lag or else the antibiotic just begins to wipe out the probiotics

we were advised not to do neurofeedback by our integrative MD as she felt it was not a good idea for some kids with TS & OCD. I have seen similar anecdotal reports of a negative reactrion posted by some parents whose children also have tourette syndrome with OCD I dont know why it can have a negative effect on some of these kids, and was not willing to try it for my son (who does also have mild ADD) based on our physician's advice and those anecdotal reports we did do biofeedback, but that is very different I have heard good reports re neurofeedback and ADHD so I guess, as with all treatments, it depends on the individual as to whether it is beneficial or not, and as to whether it can have unwanted side effects or not

my son has always reacted very negatively to any probiotics other than Kefir or Stoneyfield Farms plain fatfree yoghurt. We too have found that these fully supply our probiotic needs as a family we do all take the Candida Clear by NOW for one week of every month as well

I guess the only person who knows the truth on whether the results were "skewed" is dr Wakefield........... however I think he is being targeted. he isnt the first physician to be dragged thru the mud for daring to challenge the conventional status quo and sadly he wont be the last. Look at what they did to Dr Peter Breggin when he dared to start speaking out about the horrible side effects of some psychiatric drugs on the developing brains of kids. How about Drs Marshall & Warren when they first suggested H pylori bacteria caused ulcers in the 1980s. The list goes on and on and all I can say is kudos to every physician who risks this backlash! whether or not the results of that 1998 study were skewed..... this link that Kim recently posted shines another spotlight on the danger of MMR http://www.dailymail.co.uk/news/article-38...l#ixzz0lqkJLTdJ

only the Candida Clear by NOW is formulated with a mixture of antimicrobials (oregano oil, pau d'arco, wormwood, magnesium caprylate=caprylic acid,black walnut, garlic, olive leaf, cat's claw root=uno d'gato) all the others(olive leaf extract, monolaurin and l-lysine are individual supps. my son also takes Mastic gum (mastica) as it is recommended to control H.pylori and other bacteria that are common in people with Crohn's

it is only when the virus is active that there is cause for concern I told my story there to show that it *can* reactivate under conditions favorable to it's reproduction. In most people it remains dormant after the initial infection I personally take my natural antivirals (olive leaf extract, monolaurin aka lauric acid/lauricidin & l-lysine + the antiviral oregano oil, pau d'arco etc in candida clear, for 1 week of every month which seems to have stopped any further activity and has also prevented the shingles that I had manifest during those months after the pesticide poisoning from flaring up again. Both EBV and shingles are herpes family of viruses my son takes the natural antimicrobials once a month too, not just to be sure there is no EBV reactivation, but also to keep candida and any other bugs that may be associated with his Crohn's in check

Melanie here is the info from CDC on EBV as that may be of help to you http://www.cdc.gov/ncidod/diseases/ebv.htm I had infectious glandular fever (aka mono, mononucleosis) when I was 12yo and was very very ill In 1997 I was exposed to a massive dose of pesticide when sprayed with malathion by a mosquito control plane, as I was on a dawn walk on the beach at Captiva Island I reacted with a lot of horrible symptoms months later, and interestingly one result was massively swollen lymphatics and +ve for ACTIVE EBV again, so the thinking is that the pesticide so compromised my immune system that perhaps the dormant EBV was re-activated? My son showed EBV antibodies when tested years ago, but hasnt ever manifested any mono symptoms

lol yes dut posted about the whipworms & crohn's on the TS forum and my son's reaction was one to behold http://www.latitudes.org/forums/index.php?showtopic=7907 no way no how someone with his OCD "finickitiness" is gonna eat worms!! he really does have the crohn's under control with careful diet and the supps, but I did read that article with interest as it makes sense to me we are so busy "sanitizing" ourselves and our environment that I do think we open ourselves up for some diseases because of it

how exciting! here's hoping they accept your application

my son takes natural antivirals Olive Leaf Extract, Monolaurin and L-lysine to keep Epstein Barr virus under control, and as part of his natural antimicrobial supplement regimin for the Crohn's Disease(also takes Candida Clear as well as boswellia/curcumin(turmeric) blend, plus extra dietary antimicrobials like ginger, garlic, honey etc I am dealing with an icky head cold at present, and we were remarking just today how he never gets colds or flu anymore in addition to being so stabilized re tics and OCD

I fail to see why anyone would find fault with a doctor diversifying his practice? there are many doctors who are involved with more than one specialization and at the end of the day all that matters is how satisfied their patients are with the care they are receiving it seems that those who have seen DrB are very satisfied as has been stated above this forum is really not the place for this type of posting and so I am going to be locking this thread pending Sheila's review of it