Chemar

Hi Diana you could try a search for neurofeedback with user name Claire to narrow it down she never went back as far as I recall. She felt it was detrimental. her son's tics eventually did resolve after she found they were primarily photosensitivity induced

If I recall correctly, Claire reported some years back that neurofeedback triggered stuff for her son.I have seen anecdotal reports both for and against it when I asked our Integrative physician about it some years back I was cautioned about it as a treatment for tics/TS we have used resonance biofeedback, but that is very different

I have written a number of posts here re how valuable chiropractic adjustment is for my son and yes, he finds tics reduced after he is adusted we only go to NUCCA chiro's (http://www.nucca.org) as we prefer their methods

Abbe there are some physicians who also feel mycoplasma is in some way involved in Crohn's disease and/or other GIT problems as well as neurological issues, so if you are seeing GIT stuff....it could be due to the mycoplasma along with the food allergy

Hi Mary as a patient one surely has the right to insist a doctor do a routine test like for strep? you cant insist on the medication/antibiotic, I guess, but you can insist on them doing a strep test I would think. It isnt invasive, nor, as far as I am aware, does it need insurance approval to do a throat culture for strep??? honest, when doctors take that attitude, I would say goodbye and find another. no way I could stay with a physician who refused to realize there is more to health, disease and healing than they already know! all it would take is a little personal research on their part...a few hours just on the internet...to see a clear pattern of parents OBSERVATIONS from daily living with their kids. For physicians to simply shut the door and refuse to even look deeper than "speaking to a few (probably equally biased colleagues ) is typical of why so many patients are seeking alternative medicine and peer support groups like this one. I dread to think where my son would be today had I listened to that neuro who told me only medication & psychiatric care could help, and that the "other stuff" was "all conjecture without any evidence".............. I have all the evidence I need....................my son!! who is so very much better than when he was following "conventional" treatment sorry for the rant, but honestly it really gets to me to hear doctors be so totally dismissive of something they just dont have experience or knowledge of! Wendy, sure hoping today is a better day and that your time away will be safe and peaceful and relaxing

((((((((((((((Wendy)))))))))))) you have been through so much recently that I do hope you are taking care of your own health too! Yes, I am wondering if infection may well be the major trigger for her. I dont know if the term PITANDs is still used but that was suggested to us as a possibility once they told us my son was not PANDAS. It stands for Pediatric Infection Triggered Autoimmune Neuropsychiatric Disorders, and the way it was defined back then, PANDAS was seen as a subset of PITANDs, with PANDAS related specifically to strep, while others are triggered by assorted microbes...bacterial, viral, fungal, amoebic etc I dont know much about topamax other than that it is given primarily as a seizure med, so not sure why it worked so well before and where that fits into the big picture of what is happening with your little one. but the fact that the zith had such a dramatic improvement and then a regression again when it was stopped just seems to point to an infection component IMHO...I am not saying this is the only thing going on, but, like with my son, an aspect of the whole issue when he was treated for the candida and the epstein barr virus, we saw a big improvement, primarily in his OCD as I have mentioned before, he periodically still takes natural antimicrobials (monolaurin, candida clear, honey, ginger, garlic etc) praying you will have a good trip and soon have the answers you need to move forward in her healing

wendy, that is the generic form of zithromax I do hope it helps stabilize her again. If it does, I think you may well have another pointer in the direction of an infection being the root cause of her tics etc praying things calm and that you are able to have a good time away

not sure if Bonnie may be away for the summer etc my son uses Inositol with great success. He takes around 12 gm daily(Jarrow powder bought at iherb.com for much less!!) along with the P-5-P form of vit B6 (helps the inositol work better) Only short term when OCD is flaring tho!! Other times 500-1000mg a day Methionine (or the samE form) is also helpful. He takes 500mg a day of that with the inositol if OCD waxing severely and ups the inositol to 14-16gm at those times

nope, sorry cant help ya. I have heard of them but we dont have one in my area

Hi Rachel are you asking re diagnostic testing for PANDAS or for tics in general?

Hi myrose yes, I agree that was not acceptable for dr Franz to do that plus the associates thing too we only saw her that one time almost 10years ago and things went well, but then I was only there to get a referral to Shands, and to get her take on things at the point we were at.She did introduce my son to acupuncture and we then followed up with that with my longtime acupuncture therapist who he now still goes to. The reason we didnt return was she was so far away from us (we are north of Orlando, nearer Sanford) and the expense which for us was out of pocket. so sorry your experience wasnt good with her. my son got so disillusioned with all doctors that he no longer goes to them other than to our local clinic for routine annual physical. his accupuncture therapist and chiro are the only ones he trusts anymore thankfully he is overall very healthy especially now he has the Crohn's under control. he doesnt even get colds anymore which he attributes to his healthy lifestyle/diet/supps etc (((((((((((((((((Wendy)))))))))))))))) I do pray you will get answers with the added history of family tics/OCD that you have described, IMHO it is very possible that, just like with my son, there are more than one set of variables & triggers that cause the symptoms for your dd. I do hope you pursue the ruling in or out of strep involvement tho based on her most recent symptoms plus the quick response to the azith. In retrospect, and since I learned more of my husbands severe strep/scarlet fever around age 4-5, I wish I had followed up more than I did on the PANDAS, or at least PITANDS, aspect. I have always suspected a PITANDS component to my son's initial severe onset of tics & OCD, and I do personally think that, along with other factors, triggered the intense switch on of his genetically inherited disposition to Tourette Syndrome, a dx which I fully accept for him based on family history. I think in many cases, this isnt just a "one cause" syndrome of tics and OCD etc hoping your trip to New York is peaceful, restful and fun

myrose it may help to consult a regular doctor (pediatric or GP) rather than a neuro for this. Did you ask Dr Franz if she would rx it as a trial? IMHO neuros have ranked as the least helpful to us . we no longer go anywhere near them.

IMHO = in my humble opinion IMO = in my opinion

Hi myrose yes, OCD predisposition can be passed on thru generations IMHO I have OCD tendencies as does my mother. My brother doesnt seem to nor did my dad. My husband and his father tics + OCD my eldest son mild OCD without tics.....youngest son tics + OCD

Hyperbaric Oxygen Therapy http://en.wikipedia.org/wiki/HBOT

hi ccc my son has had a similar tic to what you describe some of his TS tics have both vocal and motor components and I have always classified that one as one of those

Hi I have no info on it but others have used it try searching No PHENOL and you will get a lot of pages of info

well you know if Claire were here now she would say AHA! re the TV it could be that combined with the "different" environmental triggers that may be in the hotel room really hope things calm so that you can enjoy the time away

so sorry to hear this Bonnie it does sound like maybe the hotel room could be triggering the waxing...??pesticide?? maybe or cleaning fluids, or as you say maybe mold or some chemical in the carpet, wood etc? if they have a Vitamin Shoppe nearby, cant hurt to try some Natural Calm and see if any relief hope he manages to still do well in the tournament!

myrose yes, my son did the "confession" thing but only for a few weeks after he was released from hospital when he had the psychotic episode, which we now know was caused by the Haldol that he had started a month before. He literally told me everything and yes the "I touched my face, I rubbed my nose, I touched that thing etc" I just assumed it was a kind of post traumatic shock thing, but in retrospect, as they pumped him full of haldol and luvox in the hospital it could have been more psychosis my son has been through frequent urination phases, including bedwetting, but only when he was younger Yet, when I read on the PANDAS board I see the "confession" thing mentioned often, along with the frequent need to pee etc and I still am left to wonder if maybe when we took him to Dr Murphy to check for PANDAS after he was hospitalized...maybe they missed something? They assured me he was -ve but so much of his history, including the dramatic onset of tics/OCD just "fit" we do have the family history of TS on my husband's side...but then again my husband has recalled serious scarlet fever(strep) when he was around 5yo...................... anyways, I guess what I am saying is that even with a clear diagnosis, I still feel many factors can interplay to bring about waxing and waning and with the symptoms your little one is showing, well it cant be a bad idea to rule out a microbial trigger

Wendy....I quoted some of the lines from your post that stood out to me Many of the PANDAS parents see this too.....that azith and ibuprofen very rapidly calm things when there has been strep flareup OR strep exposure (ie around someone with strep) I am not saying your dd has PANDAS, just mentioning this correlation in case there is a connection there....you mentioned the urinary frequency too...again a PANDAS symptom of note! *if* there is an inflammatory trigger here ,whether it is related to strep or maybe mono/epstein barr?? (you mentioned swollen glands) or come other infectious agent, then the calming after ibuprofen and antibiotic may be becasue the microbe is being subdued and the inflammation reduced?? I do agree with lurker also re that sometimes meds like topamax take a few days to "kick in" so not sure if she just needed it for longer praying that things just stay stabilized now and also that you will be able to get some rest too

(((((((((((((((myrose))))))))))))))) so sorry to hear that things have not been going well please consider having your daughter checked out for a possible ear infection as yes, infection can trigger more tics! the fact that it is all on one side may well be connected....or.....the biting down and jaw tic may be causing the ear pain....but it sure is something to have checked out I know with my son just a tooth being lost or one coming in would trigger tics. I continue to pray for you and her

couldnt agree with you more powerofprayer there are a number of people out there touting their "cures" and it does amuse me how many of them use the info that we share here for FREE as tho they uniquely "discovered" it Sheila's book is not claiming any "cure" nor other hype...but it rather a very careful look at the issues related to tics and Tourette's along with solid info on natural treatments. Some of us contributed our stories as well. It is a very balanced reference book here is that link to it again http://www.latitudes.org/book.html

hi Mike and welcome stress and excitement are very frequently noted as tic triggers for those with TS. Both involve release of steroids from the adrenal glands, which in turn are known to stimulate dopamine which then increases tics we all know how hard it is to avoid such stimuli...it's part of life! but calminative remedies can help eg Natural Calm magnesium drink, epsom salts baths, deep breathing techniques, acupuncture, chamomille tea, Bach's rescue remedy are a few of the treatments my son has used to help reduce tics after stress/excitement trigger

Hi Wombat we dont have many members here from the UK and so it is likely you havent received a reply as no one has the answer for you. You may want to try to find a naturopath /holistic doctor in your area and call their office to see if they may have pointers for you