Chemar

we have some parents here who have mentioned that their kids have asthma. http://www.nytimes.com/2008/10/07/health/r...amp;oref=slogin

Hi Linda not sure what it is in the fluoride that triggers tics. I have seen a number of anecdotal reports on it having this effect. I know my son has Multiple Chemical Sensitivity (MCS) so maybe its related to that. Also if you google adverse effects of fluoride you will come up with a lot of other info on it My son has been tested for celiac disease, as well as checked during colonoscopy/endoscopy, but does not have it. however he does have Crohn's Disease, which is also autoimmune

bmom have you read Claire's many posts on "screens" and "photosensitivity" / "photosensitive" on the TS/tics board some kids have photosensitive induced tics even tho they have no seizure activity. Many react to flicker, fluorescence etc . Altho this is common in epilepsy and other seizure disorders, photosensitivity isnt always associated with these

Linda when your son had the dental cleaning, did they use fluoride? My son reacted strongly to it with increased tics. His teeth have always been a major tic trigger...when younger we always knew when one was coming out or in as he would have increased tics, OCD, tummy trouble etc

Hi sure sounds like OCD. Both my hubby and son have it, and me to a lesser degree and yes, it can be genetic I so identified with the need to "balance"things! That is a BIG one with me Many of the other things you mention are OCD symptoms too here are some OCD resources that may be helpful to you http://www.latitudes.org/forums/index.php?showtopic=1963 our family uses diet and nutritional supplements to keep the OCD from overtaking things, and my son had tremendous benefit from Cognitive Behavioral Therapy if you do an advanced search (top right) on my name and the keyword OCD you will find some info, and I also have documented some of the things that helped my son's OCD as well as his Tourette Syndrome http://www.latitudes.org/forums/index.php?showtopic=687 hope that helps a bit

they also offer money back if not satisfied and one of our members is still waiting for that be very very careful of people selling "cures" most of these books contain info you can find free here and on other free sites they just collect it and package it and sell it

Pat I think mrsD has posted here before about how some drugs do deplete vitamins & minerals Maybe take a look on Neurotalk at her Magnesium thread and also this one on drug induced nutrient deficiency

I dont have personal experience of IVIG, tho a young girl at our church is having it for Lyme Disease complications and has had some very serious side effects. I will try to get a list of them from my son as he is on the email prayer list so more aware of what has been happening. granted her condition is already very serious (brain stem lesions, seizures etc from years of undx Lyme) so possibly not a fair comparison with PANDAS but I know it has ranged from her having hair loss to going into shock and extreme nausea, headaches and weakness, increased seizures etc here are some IVIG 101 sites I have bookmarked http://www.cidpusa.org/P/ivig.htm http://en.wikipedia.org/wiki/Intravenous_immunoglobulin

I dont think this refers to an actual spider bite, but rather the description used for hemangioma (did i spell that correctly?) that has the appearance of a spider?? If I understand what a spider nevus is correctly, then no, havent noticed any on my kids, Kim but I do have some spider veins (varicose) inherited from my mom. all are blue tho

Bonnie I just wanted to give quick comment on this from our experience. My son tics more when he has metal contact. It is weird I know but a fact. At home he uses plastic utensils and avoids direct contact with metals where possible. they always trigger teeth/lip/jaw tics for him our docs and dentists agreed it would be best to avoid any braces for him because of this tic trigger, even tho orthodontist was also pushing for them some years back. his teeth grew out just fine without them. I know they now have those non metal (i think) Invisalign braces

interesting info from Dr Weil today on HFCS causing fat gain http://www.drweil.com/drw/u/WBL02109/Does-...ke-You-Fat.html

Hi so sorry to hear of the suffering you are going through with OCD we have a list of resources pinned here http://www.latitudes.org/forums/index.php?showtopic=1963 I would highly recommend the PsychCentral site and especially the forums as they have live chats with psychologists and also many caring members going through similar things that will be able to share coping tips with you and offer support seeing a good therapist to help you work through this may also be a good place to start. there are natural supplements as well as medications that many people find helpful too

Hi Sarah yes, we have quite a lot of threads here in the archives on heavy metals triggering tics and a number of members who have had success with various methods of detox, including chelation therapy If you do a search from the top right of the page you will come up with a ton of info. just use the keywords metals chelation detoxification entered singly and also grouped my son had high mercury, believed primarily from the many mercury amalgam fillings that I had when pregnant/nursing and his early vaccines may also have had thimerisol in them (mercury containing preservative) we went through a successful treatment of a combination of electromagnetic biofeedback resonance therapy with acupuncture and reflexology, naturopathic remedies, and gradual chelating supplements of chlorella and ALA. Additionally epsom salts baths (whole and foot) were part of the detox protocol

Hi lynsey and thank you so very much for that encouragement! we had a thread running here some years ago about positive things related to TS which I will search for and bump up again. thank you so much for coming back to share your special news with us and remind us all again about that light at the end of the tunnel

its a mixed bag with him now Bonnie in some respects his maturity, high IQ and that intuitive insightfulness have him to be very rational and so he has been able to work through and overcome a lot of his childhood fears (when he was younger he was also very reckless and in some ways almost fearless, which contrasted greatly with the over reaction to other things) Now he is a cautious young man who seems to really show good judgment and sense. but that paranoia still creeps in at the strangest times and over odd things sometimes. he attributes it to the OCD and I must say since he has been on his self researched supp combo to boost his serotonin it is waaaaay better. I do feel there is a pattern between exposure to something disturbing and the anxieties and so yes, with growing up and more world awareness, that aspect also factors in

not sure whether any of you also notice paranoias with your kids when ill or even tiny injury. I know it is related to my son's OCD but wow he sure can get freaked sometimes for the tiniest scrape or become worried at eg a headache and say "do I have a brain tumor?" He has been that way since very young

Hi again Linda dr Murphy never mentioned tennex to us...perhaps because she did not feel my son was PANDAS? but she did keep him on antipsychotics and SSRI as I mentioned before and like you, (although I realized there was no "permanent solution" for genetic TS at this time,) yet I was seeking an alternative to a life on strong prescription meds. I dont know anything about tennex but I do know that my husband had a horrible reaction from clonidine (made him psychotic). he was given it after a steroid burst for herniated disc induced a massive waxing of his TS tics---steroids are contra-indicated for Tourette as they can intensify tics. Anyway he stopped taking the clonidine after a week because the side effects were so horrendous and he is keeping the tics somewhat controlled with Natural Calm and other supps, altho they are still much elevated than they were pre steroid burst, But the clonidine experience made him determined that he too would not take any more rx meds for his tics I do so agree that wherever possible and especially with kids and their developing brains, one wants to try to avoid these strong meds, especially long term. I am hoping some of the parents with more recent experience with dr Murphy than mine might have more info on her current protocol for PANDAS dx and treatment.

hah yup! guy thing for sure !!!!! (sorry guys ) lol lurker we must be married to the same guy illness always brings out the drama in all my guys here, so I do also think there may be a neuro-immuno component to it as well that seems to trigger more of the mood/behavior stuff for them when any illness strikes, nomatter how mild the illness

your are welcome Linda Dr Murphy has been at the forefront of PANDAS research for many years and so I really do feel she would be very up to date on treatments and also the safety issues related to them. I dont personally know whether she offers IVIG but I have no doubt she would know a lot about it. her treatment and diagnostic protocols may have changed a lot as it is 8 years since we saw her A number of parents here have taken there kids to her with reports of being very satisfied As she is the only PANDAS doc I have had personal experience with, I cant compare her to any others you could also call her office and see if perhaps they have any info on docs in Texas that are clued up on PANDAS we really liked Dr Murphy a lot and again, her track record as being at the forefront of the research for so many years really does make her a very solid source for information. She has numerous published research papers in highly respected publications and also is on the TSA advisory board etc. Her credentials are stellar and as I mentioned above, she also is a really caring person with a clear desire to help kids. I do just want to mention that I am posting this info as a parent whose child saw dr Murphy only. this is in NO WAY an ACN/Latitudes "endorsement" just my opinion and experience

Hi littleDaniel it is good that you are exploring all possible answers and getting the allergy testing done as well as checking re strep. Sometimes so many of the symptoms overlap and so one really has to be very careful to get an accurate professional diagnosis and correct treatments. And often kids can have more than one issue so good to check as many areas as possible. I noticed Caryn mentioned Sheila's book and wanted to also give the link to it for you as it has a wealth of information http://www.latitudes.org/book.html all the best to you and I hope you will soon see that light at the end of the tunnel

Hi if any threads need to move over here that I may have missed as not primarily about PANDAS please feel free to let me know via PM and I will move them over. If overlap areas I can leave redirect on the TS/tics forum so folks can find them easily at both

me again Boswellin is an ayurvedic herb and curcumin is extracted from the spice, turmeric they are anti inflammatory in action and boswellin also boosts serotonin (helpful for OCD) as to effect on tics....... when his Crohn's inflammation and OCD is under control, that results in better overall health and so it has an indirect positive effct on the tics I purchase ours at iherb.com

Hi again Linda I know nothing about DrK other than that which I have read here, but do have personal experience with Dr Murphy, as my son was under her care for 6 months in 2000. Although we have a family history of Tourette Syndrome, the dramatic onset of severe symptoms in my son in late 1999 just after his 10th birthday made me suspect some "trigger" and when I learned of the strep connection to tics and OCD etc, I decided to have that tested, even though my son has no history of ever having had strep. My son was not classified as PANDAS but we did stay under Dr Murphy's care as my son bonded with one of her psychiatric interns, who greatly helped him in dealing with the severe interactions of tics and OCD that he was suffering at the time. I honestly cant say where Dr Murphy is now in her protocol for PANDAS treatment as this was 8 years ago, and also because my son was not treated for PANDAS, but for Tourette Syndrome with co-morbid OCD. Her approach then was to continue him on the antipsychotics and SSRI medications that his diagnosing neurologist had prescribed because of the severity of his tics and debilitating OCD. However, when the side effects from the meds became worse and the benefits remained hardly noticeable, both she and her associate immediately assisted us to safely withdraw him from the meds and provided support and guidance for the alternative route that we wanted to pursue I really liked her as a person and found her very open minded and genuinely caring. As she was associated with a university hospital I also did not feel "fleeced" by the cost of seeing her I did give Dr Murphy's new contact info on another thread ...here it is again: Tanya Murphy, University of South Florida (Tampa-St Petersburg area) and the phone # is 1-727-767-8291

Hi and welcome I just wanted to give you contact info for Dr Murphy who is now at University of South Florida (Tampa-St Petersburg area) and the phone # is 1-727-767-8291 although there are many areas of overlap between Tourette and PANDAS and some kids may have both, yet the treatment protocol for PANDAS kids is very different for those with "regular" Tourette (ie without complications caused by strep) the PANDAS parents will be able to weigh in for you here as well, but I did just want to mention that, as a mom and wife to guys with genetic Tourette, I feel there is a big difference between the two conditions, and so strongly disagree with the view of that neurologist who suggested to you that they are "the same" I do hope you will find the answers you are seeking to help your child, and I sure know you will receive much support here

Hi Mary sorry this got no replies before we have never used Bontech supps but I did base the original protocol that helped my son on Bonnie's research and I do know many here have found her products very beneficial. a small number of people do seem to tic more on TS-plus for reasons we dont know, tho some have suggested possible intolerance to one or more of the ingredients overall tho the reports seem to be very favourable