Chemar

I would go with CBT to start emma it teaches coping skills and has a proven track record for OCD the OCD experienced by those with TS and PANDAS really IMHO falls into a different category than "classic" OCD The biofeedback therapy my son gets is done by our acupuncture physician and it involves energy fields recorded and then inverted in order to restore balance to unbalanced systems etc. (very simplistic way of describing a complex therapy...... sorry) the neurofeedback is more of a cognitive thing from what I understand and employs a learned "habit reversal" Claire has a thread where she mentions how she was NOT pleased with their neurofeedback experience and I have similar feedback from others http://www.latitudes.org/forums/index.php?...l=neurofeedback

hi emma neurofeedback is very different from biofeedback we have used biofeedback (aka resonance biofeedback therapy) and found it very beneficial I have looked into neurofeedback and have reports (some from parents here) on it and would not personally go near it JMHO that CBT is a far better help

thanks for the feedback Kelly i am not always able to keep up with the many threads here so likely missed previous reference to this Doc. Soooo glad to hear it is a good practice, cos we sure need more of them dont we. Looks like they are very up on nutrition and stuff too

This appears to be a pediatric practice in the Chicago area with at least knowledge of PANDAS. Our members with more knowledge on PANDAS than me would be able to offer better critique of the info on their site http://www.webpediatrics.com/pandas.html here is their homepage with info on the practice http://www.webpediatrics.com/practice.html

Hi Faith my 18yo son has a daily protein shake that is fortified with muti vits and minerals. he started it to help with the Crohn's after we found that the carrageenan in the Boost and Ensure he was originally recommended actually promotes inflammation he has been doing excellent on the protein shake and has noticed an overall additional benefit in his health. no colds, not stuffy this spring I do believe that some people (especially those with kidney issues) should be careful of supplemental protein Also think it would be wise to check with a doc on how much any children under 12yo or 120lbs should have

good to see you Claire and hope things are going well for your family yes, first time I heard "Anyway" I was so encouraged too. thanks for linking it and hope it inspires many

Hi Tami glad you were able to save $ too we are real careful on any affiliated product endorsement here, but anyone wanting to post links to helpful sites or products that they are not earning profit from...we absolutely dont mind that. I have been using iherb.com for years now cos of their prices. My hubby really likes the natural calm and as noted above by MaryAnn, the large size tub at iherb costs what the small size one does at vitamin shoppe!! some things (like monolaurin) I get from our local Vitamin Shoppe as iherb doesnt carry them.....yet!

Here is the full article: http://news.yahoo.com/s/ap/20080412/ap_on_...vaccine_meeting

Hi and welcome Dr Tanya Murphy is at Shands in Gainesville Florida and Dr Swedo in Maryland. They are considered experts in the field of PANDAS research I hope others will be able to offer more pointers I am boggled that you doctor knows enough to diagnose PANDAS yet would offer anti SEIZURE??? meds and anti- depressants anti BIOTICS are the first stage of treatment for PANDAS usually with most reporting that azithromycin helps I am not a PANDAS parent so will defer to those who are to offer more insight

glad it is of help to you MaryAnn and yes, I usually place a big order too and get the free s/h tho even when one has to pay it, it is still cheaper than buying locally! not sure if you have seen iherb's Natural Library as well, where they have info on many supps as well as interactions, best supps for various conditions and a whole lot more!

dont know how to help re doseage there my son has never gone higher than 500mg per day

Hi Mary yes, it is good info to take to a doc, isnt it this diagram in particular is what I feel really says a lot http://www.touretteconference.com/Photos/tourette-cycle.jpg

wondering how many may have looked at those interesting diagrams and the info put up by Great Plains labs.... http://www.TouretteConference.com seems someone at least knows what we are saying so often here huh LOL I guess they read the boards! but seriously, even for those of us who cant consider attending the conference, the info on the site is worth reading

Hi CP I waited a while to answer this as I dont want to let our personal experience with my son interfere where something may be beneficial for yours I dont know anything about Tarentula homeopathic remedy beyond what I have linked below. before all the pieces fell together in understanding the TS link in our family, my son was already seeing a traditional homeopath (since he was 6yo) who did provide some very helpful remedies for him, primarily as calming agents, environmental allergy etc stuff and to help his ADD and restlessness/insomnia. shortly before his major outbreak of tics/ocd/depression/anxiety/phobia/paranoia etc etc (that happened explosively just after his 10th birthday) the homeopath recommended Agaricus pillules which he was on a couple of months and seemed to be helping. and then came that almost overnight transition that marked what we now know was the onset of his fullblown TS spectrum of disorders. the homeopath continued to try to help him but as things were going progressively downhill and I was concerned at the intensity of the tics and that he might severely injure himself, we began the route of doctors that sadly ended up at the neuro/psychiatrist mix that put him on the rx drugs........... anyway, that is background. fast forward a bit and we were seeing a wonderful pediatric doc in the Orlando area who is Integrative in that she is conventionally trained MD but also a specialized homeopath. In her evaluation report on my son she noted that the Agaricus could well have "brought forward" the inherent TS symptoms. trigger in other words. she was careful to say that anything else may well have done that too, and that it wasnt necessarily a bad thing, as it may well have "come out" another time and possibly with a wrse manifestation. In homeopathy they dont work with disease "labels" as such but more with the whole person and all symptoms they display after that visit I went and read up more on agaricus and it left me I know what my son got was homeopathic miniscule doses............. but................ so all I would suggest is read up on Tarentula carefully and ask questions. It may be an excellent and very beneficial remedy for your child and others. but just be mega informed on what it can "bring forward" there are apparantly two forms of tarentula, so maybe ask which they refer to T cubensis http://abchomeopathy.com/r.php/Tarent-c T hispanica http://abchomeopathy.com/r.php/Tarent

Bonnie could he have had stomach flu or another tummy bug? nervous digestion is not uncommon with our kids IMO. stress, excitement, upset, anticipation, new stuff etc can do weird things to my sons GIT, even before he had the crohn's symptoms.

Emma If they wont return calls or let you speak to the therapist, would suggest going to the initial appointment yourself alone. If that isnt acceptable to them, keep looking!! when there are bossy receptionists/ nurses the doc is usually in the same category IMHO did you see the 2nd link I posted is the association for CBT practitioners...maybe contact them and ask for referrals?

ACN, Great Plains Labs and New Beginnings Nutritionals are going to co-sponser a great sounding conference in Spring of 2009 in Dallas, TX! Info on the conference http://www.TouretteConference.com Latitidues/ACN homepage http://www.Latitudes.org

I sure understand Tom's Mom. Sooooo hard when they see the junk stuff all around them and their friends and the TV and everywhere people are eating it. My son used to sneak in blue "raspberry" slurpees and Doritos when out with friends initially, till he quickly realized what the dose of chemicals in that mix really did to him! seasonal changes affect my son in a number of ways I guess than just the pollens here. lunar cycles in spring and the fall harvest moon, to big temperature changes... (tho here in Florida it tends to hovver between hot and not too hot lately ) my son is a lot less stuffy (we think thanks to some extra dietary modifications related to his crohn's), tho has some tic/OCD waxing this spring. He went for a full acupuncture with chinese cupping, biofeedback, reflexology etc session last week and is much improved. He really does get such benfit from it, especially the acupuncture the cups showed very little markings which is already fading, so he seems to be maintaining detox state with the diet, supps and epsom tubs I have heard good reports on the natural allergy products at Native Remedies and I know Dr Weil has some recommendations on natural allergy stuff on his site too

yep re diet too in the healing process caryn as mentioned before, my son has based his diet on guidelines in The Maker's Diet book by Jordan Rubin and sees improvement in so very many areas, even tho he doesnt have natural food allergies per se.

some more info on neurotrophic factor http://en.wikipedia.org/wiki/Brain-derived...otrophic_factor

the focus at present seems on repair to injury but who knows where the research may lead in helping those with neurological impairment! http://www.sciencedaily.com/releases/2008/...80405165601.htm

my son had about 6 months of therapy, Emma, and we only went once a month as that was what we could manage.(more was recommended initially and we did also know we could call and schedule appt if needed sooner) My son really appreciated the help in understanding and then developing coping skills for many of the things that had been really debilitating to him re his OCD and other mood/behaviour issues related to his TS spectrum of disorders He then felt comfortable to use the techniques learned on his own and has certainly maintained them well. He had a very good relationship with the therapist who sadly no longer lives locally. I think only psychologists do CBT as a rule. I would say key to a good therapist is that you and your child like them and sense compassion not control in their approach. here is some info on it on the OCD sticky http://www.nacbt.org/whatiscbt.htm http://www.nacbt.org/

Hi seasonal changes and temperature extremes have always been tic triggers for my son. He does have some pollen sensitivities documented interestingly, since his dietary modifications for his Crohn's Disease, he has remarked on how the seasonal "stuffiness" etc is so much better. Chatting with his acupuncture specialist last week, we confirmed just how many people find their environmental allergies being helped when they taylor their diet, even those who dont have specific food allergies

((((((ilovedogs))))) being on vacation and having things take a downturn aint no fun!! the CBT training that my son received has been a real solid foundation in helping him deal with anxiety, OCD etc. Just please be sure that you first interview the psychologist as some, instead of helping the individual function better alone, seem to want to impose their own standards which isnt always helpful. The first psychologist we saw wanted to change my son to her mold, rather than help him attain coping skills within his own we used GABA short term (a couple of weeks) when his anxiety was unbearable and it gave immediate relief, and yes, methionine (also compounded as samE) is a remarkable supp for mood/OCD issues are you already giving Inositol? It can be used at minimum dose (500mg) with the others best wait with the 5HTP till u are home tho as it can have the opposite effect in some. It helped my son relax, sleep and calmed his raging OCD, but it made my hubby very restless and edgy if your child doesnt have any flower allergies/intolerances then Bach's Rescue Remedy is an excellent rapid relaxer! A few drops under the tongue works wonders!! hope things calm down

I have seen a number of discussions on HBOT (Hyperbaric Oxygen Therapy) at neurotalk but never thought of it beyond pain management/ wound healing that is discussed there, primarily for RSD/CRPS and TOS here's some info on it http://www.hbot.com/LowPressureHy.html and more http://www.hbot.com/conditions.htm