Chemar

but there is! I have posted over and over of the success we have had with natural antimicrobials that have antiviral properties as well as the L-lysine and some homeopathic remedies. Also the acupuncture and biofeedback to target the infection(s) (*not* neurofeedback) I do think my son is proof positive that "the microbe is nothing, the terrain is everything" as Dr Pasteur is reported to have said on his deathbed, acknowledging his arch rival on microbial research,Dr Beachamp, was right We have seen my son go from very very severe TS/OCD to very mild symptoms and now even have his Crohn's disease (possibly caused by mycoplasma) under control with natural and non-invasive treatments. We started this journey when he was a preteen and he is now 20yo and has been doing great for years! My son was determined PANDAS negative but does have the PITAND component likely with his genetic TS I have also been reading of promising studies being done with lauric acid/monolaurin and HIV+ patients I know many conventional doctors refer to using alternative/natural treatments as "quackery" and discount the anecdotal evidence for their effectiveness.....but for me the proof is on my son!! as in the other parents reports of success using these methods remember that just as the PANDAS community faces uphill battles in convincing naysayers that it is real...we who advocate natural treatments for neurological disorders have met with this resistance too!

just wanted to mention that when my son tested +ve for EBV a number of years ago, in addition to homeopathic remedies, we were also advised to use the amino acid L-lysine as apparently it helps keep viruses dormant ie inhibits their reproductive cycle I know people with herpes/shingles also use it successfully other natural antimicrobials that seem to have anti-viral properties include monolaurin (lauric acid) and olive leaf extract

hi Lele I dont remember if you have already tried the L-carnitine that many have found helpful for vocal tics often popcorn has msg for "natural flavor"

Hi it does sound more like allergy induced ticcing headaches are a common symptom of allergies too have you identified what he is allergic to? ie are you eliminating the allergens rather than just using the medications that stop the symptoms? is he allergic to anything in your home? dustmite? that is a very common allergy to have and using hepa filter air purifier, especially in his room at night, can help. how about any mold anywhere in your house? does he have food allergies? possible MCS (multiple chemical sensitivity) which would make him react to airborne chemicals like perfumed stuff, household chemicals, pesticides, some toiletries and even chlorinated water, as well as ingested chemicals in the many artificial food additives does your husband tic at all when his allergies act up? lastly, has he been tested for things like strep, candida albicans "yeast" infection of the GIT, et just some ideas I am throwing out in case any of those may be triggering for him he is still young and so you implementing a healthy environment & pure natural diet for him now may well be what helps his tics resolve sooner

Hi my son (now 20yo) was 12yo and adult weight when he took l carnitine for vocal tics. He had 500mg/daily as far as I know it is not a supp for long term use. Rather to be used more "as needed" my son used it successfully back then, but recently when he tried it again, he didnt like how it made him feel If you do introduce it it would be best to start low and see if your child responds well or not usually under 12yo over 6yo get 1/2 the adult dose on supps

hi and welcome glad to hear what has been helping your son as you have likely noticed here, we are very much all about dietary modifications, supplements and other natural ways to treat tics & Tourette Syndrome my own son, who used to manifest with severe TS/OCD, had dramatic improvement from supplements etc as documented in the link below in my signature we have had some recent posting here too about some people who may tic because of misallignment in their TMJ region. I wonder if the spacers were messing with your son's TMJ and so triggering more tics MSG, Aspartame and other artificial food additives have been amongst the primary offenders in triggering tics for my son thanks for sharing your story here

we saw dr Murphy 10 years ago so I am not sure about current info on her testing or treatment protocol we liked her very much as she was thorough and very caring, but she wasn't very tuned in to the natural treatments we were seeking to start for my son her evaluation and testing indicated my son was not PANDAS and so we continued seeing one of her associate psychiatrists who helped my son greatly with his tourettic OCD and helped with weaning him off the TS meds he was on

Hi I would think that depends on the condition of the patient, as well as the protocol of the treating physician obviously if someone is in crisis with an infection, then the first response should be to stabilize them asap, and usually that is done with antibiotics if an infection is found our physicians (integrative MDs and naturopaths) worked toward a healing that targeted identifying and eradicating the microbes, toxins, irritants, potential allergens etc (ie the "triggers") as much as possible while implementing healing for the compromised system. other doctors may use different methods. our docs have always indicated that just eradicating the trigger without trying to work on the environment that allows it to conduct its triggering, is an incomplete treatment and rather "patching" what is broken instead of "fixing" it

Hi I have a quote from something attributed to Louis Pasteur in my signature "The microbe is nothing, the terrain is everything" I honestly feel that yes, things like heavy metals, chemicals and other toxins, allergens, the multiple childhood vaccines and other things that can compromise the immune system or GIT etc..... along with a genetic predisposition, is what makes someone more susceptible to infection, and also determines their reaction to the infection

phenylalanine & tyrosine are dopaminergic so therefore have the potential to increase TS tics I believe creatine also attenuates dopamine action I dont know if HMB (Calcium beta-hydroxy-beta-methylbutyrate) is also dopaminergic but it wouldnt surprise me if it was so I think the combination of at least three dopaminergic substances, possibly four, is causing you to tic more

just wanted to add here that my son and I have gone back over the log we keep of flares (we have kept this for a number of years so as to identify triggers for tics, OCD and Crohn's) and we do not find thet he has had any significant correlation of waxing of OCD when in Crohn's flare. His OCD waxing seems to have always closely followed tic waxing. His OCD was classifed "tourettic" by his physician (a form of OCD that seems unique to people with genetic TS where tics and OCD symptoms can "morph" into each other) so not sure if that is that has any bearing. We do not see an apparent significant increase in tics on the log related to Crohn's flares either. Stress/exhaustion seems to be the #1 trigger for his past Crohn's flares, followed closely by eating triggering foods, and altho yes, stress is a tic trigger for him, it ranks lower on the list of his triggers than eg chemical exposure, food additives etc re family autoimmune disorders, I am only aware of husband's mom having rheumatoid arthritis and an aunt of mine who had lupus. Neither hubby or I have autoimmune illness that we are aware of, and my oldest son (23yo) does not have TS or Crohn's or any known autoimmune illness

I updated the thread last month. it is on the last page http://www.latitudes.org/forums/index.php?...amp;#entry55099 tourettic OCD usually refers to when tics can morph into O-C symptoms or vv by symptoms of classic OCD I meant those times when the O-C behaviors are very distinct from and not being influenced by or morphing into the tics, like tourettic OCD does I posted about the two kinds so that you would see why I was sending you to the link I gave on the OCD forum

yes, my son has Crohn's along with Tourette Syndrome (3rd generation genetic TS ....that we know of, likely more tho) he is not experiencing flares anymore tho since implementing dietary modifications and adding specific supplements to the others that he is already on for his TS/OCD. He takes natural antimicrobials and probiotics His Crohn's symptoms were very intense some years back. he tested negative on all strep evaluations done by dr Murphy in 2000/2001 He is now 20yo he tested +ve to Epstein Barr but has not been tested for mycoplasma yet (his choice,) There are a number of GI physicians who feel there is a mycoplasma connection to Crohn's tho some have given me the "quackery" comments when I have mentioned it. Wouldnt surprise me at all My son's Tourettic OCD used to be the worst of his symptoms but has been almost negligible for a number of years now. Tics are pretty mild too.

I do just want to remind everyone that certain things like data collection and research on this forum really does need to be cleared with Sheila Rogers FIRST please.

another aspect to this thought....parents and patients have been using the Internet for years to share health experiences and information and support, especially when they are reaching roadblocks in their healing because so many conventional doctors have refused to acknowledge the value of anecdotal evidence as clinical evidence. thankfully, when my son was in crisis, I found a team of physicians who were willing to read the info I was bringing them from discussions with other parents, and then applied their medical knowledge to that anecdotal evidence to help me help my son

Hi the fact that these thoughts are disturbing you is a good sign as it means you know it is wrong. Thoughts come and go and we all have shocking ones sometimes...it is what we DO with those thoughts that matter you may want to read a past thread here where other people speak of unwanted sexual thoughts http://www.latitudes.org/forums/index.php?showtopic=758 In the meantime I would think it would be wise to not spend time alone with this little child. You know you dont want to act on the thoughts you have been having, but it would be foolish to put yourself and the child in any danger! If you arent able to bring this under control yourself, it may benefit you to find a therapist who can help you work thru why you are having these reactions Are you on any treatment for the OCD? If not, consider Cognitive Behavioral Therapy hope that helps a bit

yay!!!!! I am so happy for him and for you CP

Mar my son had a number of professional CBT sessions and the therapist taught him and me much. It isnt hard to continue CBT with a parent or even on one's own, as my son does now that he is adult. He has learned the coping skills and the ability for self analysis. It really is a solid foundation for anyone struggling with OCD

Hi just catching up here after a long and busy day at work I agree with Caryn. We know a number of children who developed tics from various ADHD meds. There are a lot of natural alternatives to help manage ADHD will post more tomorrow but just wanted to stop in and say Hi

welcome Heidi I will catch up tomorrow and see if I can offer any helpful info for you, but just wanted to say Hi I have a link in my signature that documents what has been helpful for my son we have a lot of past posts linking vaccinations as causing tic increase, so do start searching for those(the search link is top right of the page) hope you find the answers you need to help your child you will find a lot of support here too

was wondering why this old 2006 thread was bumped up Sheila isnt available at present Michael, but I have removed the topic for you

Hi my son drank dilute pure cranberry juice when we were on the candida eradication diet. We bought the Knudson brand of 100% cranberry juice as it is the only one that isnt mixed with grape and apple. I think pure guava juice is also ok, and pure cherry juice too. we drink a lot of green tea and that is also allowed on a yeast buster diet, as is chamomille tea I recall we used a little goats milk as well We followed the 4 phase diet recommended in The Yeast Syndrome by Walker & Trowbridge, so were allowed different things at different times the book also has some good recipes

Wombat, altho tourettic OCD does have distinctive characteristic of that "morphing" of tics and OCD symptoms, there are also many areas of overlap with "classic" OCD you may find the helpful links from the OCD forum useful too http://www.latitudes.org/forums/index.php?showtopic=1963

Hi CP yes, the Candida Clear has oregano oil in it, and we also keep a tincture of oregano oil extract here tho one has to dilute it MUCHO or it burns your mouth big time we use a lot of coconut in our diet as well as taking the monolaurin supps for a week each month however one can get the lauric acid in is good ! tho I am not sure of the actual mechanism of conversion of the lauric acid to monolaurin

thanks for posting that Vickie yes, our developmental pediatrician payments were more in that area and yes, county health departments are the way to go when income is low and no other financial resources some states also have special healthcare plans for lower income families who are above the medicaid threashold. here in Florida it is called KidCare and parents pay on a sliding scale based on income unfortunately, many people dont even know about it and not all doctors take it