Chemar

Hi Tracy I had no idea you were in Florida or I would have passed on this info to you before Dr Tanya Murphy is one of the USA's leading physicians in the field of PANDAS and she is based at the University of Florida/Shands Clinic in Gainesville She is very active in PANDAS research and she also sees pediatric patients. http://www.psychiatry.ufl.edu/people/bios/murphy.htm

hi Spartan salmon oil is an excellent source of omega 3 and if you tolerate it well...it will be very beneficial. Unfortunately, you really wont know if you areone of those people who tic more with fishoil until you try it If after about 3 days being on it you notice a significant increase in tics, then it is likely you are reacting, and would therefore be better off with flaxseed oil(preferably in combo with borage) My son can eat all the fish he cares to (and he loves it) but if he goes near supplemental fishoil of any form, he tics a LOT more almost immediately!

also http://www.apa.org/releases/children_meds.html

Hi Amy that was me, Cheri, posting not Ronna I was quoting a post by Ronna, who is our expert mom on PANDAS! Sorry if I confused you the University of Colorado article is only accessible via paid subscription....I simply posted it so that you could get the name of the doctor Barbara Geller, MD perhaps you can contact the University of Colorado school of medicine and try to get information from Dr Geller as to whether she sees patients or if she can recommend another physician who does (this is the full link to the article psychiatry.jwatch.org/issue_pdf/JP0403.PDF )

Hi and welcome usually the clearest indicator of PANDAS induced tics is when a sudden onset occurs in conjunction with high strep antibody titres. The only effective treatment for PANDAS is prophylactic (longterm) treatment with the CORRECT antibiotic (not all antibiotics are effective) Here is a copy of a recent post from Ronna hopefully someone from Colorado will see this and be able to give you personal input. I also just found this on Google, and so you may want to check this out University of Colorado, School of Medicine. Barbara Geller, MD it is a link to a journal article related to PANDAS

bumping this thread up for Pandamom

Pandamom I am pasting a quote here from another thread where Ronna reports on the success with zithromax

In the absence of any further updates from the administration of BrainTalk, and based on the fact that the site is still down, many people have "moved on" ...........and thankfully what has affectionately become known as BT2 (BrainTalk2) is up and running and developing into a really great community (thanks to Dr John Grohol, who also has a great site known as PsychCentral http://psychcentral.com/ ) so, in case there is anyone reading here who is searching for Braintalk, here is the link to the BT2 Tourette board http://forums.braintalk2.org/forumdisplay.php?f=25 and here is the link to the main menu index for this growing and vibrant community http://forums.braintalk2.org/index.php

Hi as this forum is rather quiet i did want to let you know of another one where your question may be answered http://forums.braintalk2.org/forumdisplay.php?f=8

PetB this is a tic that I really would suggest you see your doctor about. It is a common tic, but can become serious if infection sets in. I know this from bitter experience. There are soothing oral antiseptic solutions available at most pharmacies and even in the toothcare aisle of supermarkets.......oral B makes one I believe and there are others. You can also use a dilute solution of hydrogen peroxide and also diluted tea tree oil is excellent also let him have healthy popsicles as the cold helps the swelling to go down ( remember to get ones without artificial color/artificial sweetener etc)

Hi Claire re the oregano oil in Candida Clear by NOW, not only is an excellent yeast buster, it is also superior general anti-parasitic remedy, and gets rid of worms and all other nasty critters that try to set up home inside of us

Hi although this is all way out of my area of knowledge, yet I can sympathise with what you are all going thru and my best advice would be COGNITIVE BEHAVIOURAL THERAPY (CBT) http://www.nacbt.org/whatiscbt.htm Having to live with the constant battle against your own thoughts is exhausting and counter productive. Although 5HTP helps many people with OCD because it helps to elevate serotonin levels, yet it isnt always the right supplement for all people, and for some it can have a negative effect. It should also NEVER be taken with anti-depressant medication SSRI's and needs to have adequate Vit B6 to compliment it. Inositol is a mild vitamin B supplement that many people also find helpful (again vitamin B6 is essential to compliment this.) and some people find samE or methionine (an amino acid) helpful too However, I cant stress enough that for severe OCD that is interfering with normal life, it really is important to see a psychiatrist who you feel comfortable with, and undergo CBT. There are also self help books and websites related to CBT Correcting chemical and nutritional imbalances, and avoiding aritificial foods (like coloring and nutrasweet/aspartame, splenda/sucralose) etc goes a loooong way to helping, but solid psychotherapeutic intervention is an avenue of help that I really recommend for this kind of OCD

Hi Cave it really worries me that so many young people who visit here seem to feel nervous or afraid to tell their parents about their possible OCD as I dont know your individual family situations, I can only say that I do hope you are able to talk to your mom about this and that she will be supportive and helpful now, nomatter how small your college is, there must be a clinic/student health center surely.There is also the County health dept to try....the doctors there would be able to give you a referral to see a psychologist. here are some websites you may find helpful too http://www.healthyplace.com/Communities/OC...mm_calender.htm http://www.geonius.com/ocd/organizations.html http://www.ocdonline.com/relsites.php I have also recently learned of a natural OCD treatment remedy sold by a company I have a lot of respect for http://www.nativeremedies.com/ocd-alternat...treatment.shtml I hope that helps you find something Do stay in touch with us here.....although I dont personally have OCD, my son has it as part of his Tourette Syndrome and so I know just how it can interfere with your life but I also know from our experience with my son that it can be easily and effectively brought under control with the right treatment also do remember that you are not crazy or silly for having OCD symptoms........it is primarily caused by a chemical imbalance and is often genetic, and many people suffer with it. However, as I said before, it CAN be fairly easily and effectively treated, and without having to resort to expensive prescription drugs and their often nasty side effects

with the new school year now underway, I am bumping this up in case anyone missed it. You will find the article in the second frame, middle of the page. http://www.tsa-usa.org No more having to beg and plead for the accomodations that children with TS deserve...now it is the Law!

oh hee hee hee! "exotic and beautiful" gonna have to tell my family that. seriously, the black and white scanned head only photo hides the flaws real well!! I do look forward to seeing photo avatars of some of our members as well (tho I sure do understand that some may wish to remain anonymous...and that is just fine too)

Hi did you get my private message?

oh Kim you crack me up! I thank my mom for the hair genes as she is 81 and no grey hair! I just decided, based on feedback from another forum, that it really does make it easier to be able to converse when you know what the person you are talking to looks like. Soooooooooo, c'mon y'all.....be brave and add some photo avatars! ps scanned black & white photos also help to hide the wrinkles LOL

Hi OCD isnt something you need to be scared about. Millions of people live with it and manage to live normal fulfilled lives. There are many ways to help make OCD less intrusive in your life. I would certainly recommend finding a good psychologist who has a caring and gentle nature and see if they feel that OCD is an accurate diagnosis for what you are experiencing and also then maybe start having Cognitive Behavioural Therapy to help with it. There are medications that are prescribed for OCD but sadly they do have the potential for side effects. Many people have found great relief by using over the counter supplements for OCD HTH

TO TEST FOR PANDAS you should have a blood test to assess elevated streptococcal antibodies (Anti-DNAse B and Antistreptolysin titers (ASO) Be sure to include a throat culture of group A B-hemolytic strep. Ask that the specimen be cultured, not just the rapid test.

TO TEST FOR PANDAS you should have a blood test to assess elevated streptococcal antibodies (Anti-DNAse B and Antistreptolysin titers (ASO) Be sure to include a throat culture of group A B-hemolytic strep. Ask that the specimen be cultured, not just the rapid test.

Carolyn I am pretty sure checking the cooler would work, but maybe you should call the airline to be certain

yep! sounds like OCD equalising, organizing and "just right" are among the most common themes seriously though, if it isnt bothering you.........let it be! nothing of what you describe falls into the serious OCD issues that can sometimes really disrupt people's lives If you want to try a mild supplement that can sometimes help tone things down, it is INOSITOL one of the B vitamins. It usually has Vit B6 in with it...if not adding that is beneficial there are stronger supplements that can help, but they are usually recommended for more severe OCD (samE/methionine and 5HTP ) Cognitive Behavioural Therapy (CBT) is also very helpful Eliminating artificial colouring, artificial sweeteners (Nutrasweet/aspartame and Splenda/sucralose) and other artificial food additives seems to also improve things for many people with OCD

Hi Tracy and welcome I have never personally had to deal with PANDAS as my son's tests were negative however from all you are describing, your child sounds like a classic case. honestly, from the experience of others documented here and elsewhere, it may well just be that you are using the wrong antibiotic. Ronna and Allison have recently reported good results with zithromax (azithromycin) if your child is PANDAS symptomatic...all the other meds may well be innecessary and just prophylactic antibiotic treatment may be needed. on a personal note, zyprexa had horrid side effects for my son, and was the med that finally made us go med free re the drugs for OCD and tics/TS if your child is exhibiting the tics and phobias etc because of the PANDAS, then by eliminating the strep you should see a dramatic improvement in all the rest. The other medication cocktail may well be hampering things rather than helping. Just my unqualified opinion! I am sure others will have input too

hope you got my email back last night Svetlana

HI Svetlana Sheila Rogers has written a really good book about alternative treatments for tics http://www.latitudes.org/book.html now, re the acupuncture, supplements etc do remember that, because of the Crohn's disease complications, your son is not absorbing nutrients/supplements as well as he could, and therefore needs a more specialised program also, because of the inflammation related to the Crohn's, the acupuncture alone isnt going to miraculously stop the tics or the Crohn/s for that matter. Our therapist does a very specialised mix of acupuncture, reflexology, resonance biofeedback and FSM (Frequency Specific Microcurrent http://www.frequencyspecific.com/ ) It works wonders for my son, and his most recent blood test results have amazed his GI specialist who wanted him on the prescription drugs for the Crohn's and was somewhat sceptical when we decided to follow the natural route I remember our previous coversation in this thread, where I gave you more info on what we find helpful for Crohn's http://www.latitudes.org/forums/index.php?showtopic=1709 Are you trying any of the Crohn's supplements or is your son on the anti inflammatory meds and immunosuppressives for the Crohn's? Those can trigger tics big time, especially the corticosteroids! So your son's tics may well be related to those Is your child still only on the formula? or is his diet improving? that formula you mentioned has a lot of corn oil in it and your son may be sensitive to corn Some insurance plans do cover naturopathic doctors, especially Integrative physicians, because they are fully qualified conventional doctors Also osteopathis docs are usually covered (those with DO degrees) and they usually have a far more naturopathic approach that regular MDs in conventional medicine. DAN docs are also Integrative, as are most Enviro docs I agree that for you to be spnding a lot of money and getting little or no results is futile, and so I really think that there must be something missing in the treatment protocol, or possibly something being used that is disagreeing with your son Anyway, I have rambled on, but the point I am trying to emphasize is that, because of the Crohn's disease,your child needs a very specialised alternative treatment program PLEASE do feel free to email or PM me so that I can provide you with answers directly to your specific questions and concerns