Chemar

Hi Alyssa and welcome. Thanks for sharing all your info We do actually have numerous posters here who are dealing with PANDAS (usually they are the parents of kids with PANDAS and also have many threads here on it

Vicki...a big welcome to you and thank you for your open and very encouraging post! Once we get a grip on our emotions and begin to focus on solutions rather than the problems, things seem to really change And Irena...I have heard SO many people with TS (kids and adults) make that comment about the awful feeling they had when they sensed their parents were continuously trying to "fix" them......... Doing things to help and improve general health and wellbeing, while eliminating tic triggers and adding good nutritional supps etc etc can be accomplished in such a way as to make it more of a normal healthy transition, rather than an obsession. And for a parent to have a meltdown every time a child has tics is a really heavy burden on the child, and makes them so acutely aware that the parent observes something "wrong" with them. I have posted the link to my friend Lara's commentary on this before, but here it is again in the hope that it can again help parents whose children have Tourette Syndrome to gain perspective in their efforts to help the children.....doing what we can to improve their quality of life IS our responsibility, BUT we should always try to do it with an attitude of acceptance and never make the child feel they are "sick" or imperfect or broken because they tic!! I stress again, this doesnt mean we just "give up"....of course not! But we control our obsession with the "fix", gain understanding that people with TS tic, and work in the needed tests and changes in such a way that it is seen more as normal health improvement than having to stop those tics. We and our children benefit enormously from such an approach. believe me, I know from my own experience!! Here is a link to Lara's "IT's OK TO TIC" http://neurotalk.psychcentral.com/showthread.php?t=1486

Hi Carolyn yes, whey protein has high levels of amino acids and so could increase tics .....if you need to use it maybe start at very low amounts and see how you react I can only think that it must be some form of absorption issue if you remain low in your aminos even tho you are eating the natural sources of them

CP it is NOT a good idea to give a comprehensive amino acid supplement to anyone with Tourette Syndrome some amino acids stimulate dopamine and hence increase tics alanine, arginine and tyrosine are amongst those and I know Bonnie Grimaldi has stuff on her site about this http://www.bonniegr.com I never give an amino acid complex to my son, but only give the specific ones that he needs

Hi I am glad you are seeing a therapist to help you with these very disturbing thoughts I would also like to recommend the online community at PsychCentral.com http://forums.psychcentral.com/ they are a very active and caring community, with a resident psychologist as admin, who also does live interactive chats every Friday afternoon

I do have to weigh in here and comment that for some people, the medications prescribed for OCD can and do have very severe and unpleasant side effects. So for many people, they do not avoid meds because of any stigma, they avoid them because of those side effects. there are alternative ways of treating OCD that are very effective for those that prefer not to use prescription drugs

hi Enryu honestly, I dont know the answer to your question. I have been told that the best excercise it that which gives all the muscles a good work out and so I would think that whether it is brisk walking, or jogging or anything that works the whole body, that is best. Weight lifting, from my limited knowledge, works only certain muscles?? I think the aspect of excercise that is good for mental health is that excercise releases endorphins in the brain, which are our natural "feel good" chemicals

Hi CP here is a good site I have bookmarked on hidden MSG http://www.naturodoc.com/library/nutrition/MSG.htm re natural free gluatamates in tomatoes and legumes....many foods contain glutamic acid or its variants and that in itself is IMHO not bad, unless one has a definite sensitivity to that food or to glutamic acid / glutamine/ free or bound glutamates example is that my son takes L-glutamine for his Crohn's Disease and it does not appear to in any way negatively impact his TS or OCD. He can also eat natural glutamic acid containing foods without reactivity However, if he eats anything with MSG ADDED his tics and OCD skyrocket, as well as digestive distress I think it is that the MSG that is reactive to many is the concentrated substance made as a food additive used to flavor and tenderize foods and usually derived artificially albeit from natural substances ..........

Deanna a daylight lamp is one that has one of the daylight simulating lightbulbs in it (Full Spectrum Light) there are specialized sites that sell these, and you can also get the bulbs at home depot etc

Deanna I dont know about the glasses but I do know that having a daylight lamp on in the room has always been helpful to my son . He doesnt have very high photosensitivity, but we have definitely noticed that it increases if the room is darkened and the flicker flashing happens. Movie theatres are a big trigger for him, with darkened room, much flash/flicker/, loud noise, and many chemical smells

how about this that came in one of my health newsletters today, Kim yeah right!!!!!

Ama he is the right age for possible PANDAS induced OCD/tics this is caused by strep infection that doesnt only show as a strep throat...often the throat test comes back negative but when they run a strep antibody blood titre it is sky high re the Inositol I believe 250 mg per day is considered max dose for a child under 12 who needs it for neuro issues

Hi Ama many kids with tic disorders/TS also have OCD (obsessive compulsive disorder) which can sometimes "blend" with tics to produce this kind of behaviour. my own son went thru a phase of obsessively touching his uvula (little tongue) and gagging and he HATED it but couldnt stop.....it was a tic that became OCD in nature your husband most certainly needs to understand that this is NOT something your son can control, and I most certainly hope he isnt serious about causing his own child severe pain by putting chili on his fingers to stop this Inositol is an excellent supplement that can help with OCD type tics and is generally safe even for young children. As he is on a B complex he should be getting Vit B6 which helps the Inositol to work best (Inositol is also a B vitamin....you can get it at most health stores) Also, as this seems to have happened rather suddenly, it is very possible that your son may have a strep or viral/bacterial infection that has triggered this I would also highly recommend that you eliminate all artificial foods from his diet...ie things like artificial coloring, artificial sweeteners like nutrasweet(aspartame) and Splenda(sucralose) and all MSG etc These are known to trigger tics and OCD hope that helps a bit and here is also a (((hug))) for you Cheri

Hi John as someone who saw the awful results of allowing a doctor to "drug my son up" because I was told it was the only way he could live a full life I want to again encourage you NOT to go this route, especially as by all the examples you have given here, your child has very mild and not injurious tics anyway, because of your location and so not being certain what testing will be available, here is a basic list of what I personally feel is most important (I am sure others will also give their input as I may well miss some things) 1. PANDAS & PITANDS 2.CANDIDA albicans (aka "yeast overgrowth" ) 3. Heavy metals 4. Food and Environmental allergies 5.Pyroluria 6.vitamin, mineral, amino acid and neurotransmitter levels I realise not all of these may be familiar to your doc and so if you need more info on any of them, just ask or use the search here as we have many threads related to it. sorry to have to be so brief but I have a heavy workload today all the best Cheri

Texas Gov. orders anti-cancer vaccine (AP) (From Yahoo) AP - Bypassing the Legislature altogether, Republican Gov. Rick Perry issued an order Friday making Texas the first state to require that schoolgirls get vaccinated against the sexually transmitted virus that causes cervical cancer. Click Here to Read the full article... We recently had a discussion here about the potential dangers of this vaccine. I am mind boggled that this is now going to be enforced in Texas, and I hear from friends on another forum that an Illinois senator is proposing similar legislation there here is an exerpt from our previous discussion on this

that is such good advice re the documenting mommy Keeping records really helped us to identify triggers and also to determine which supps were helpful and which not etc etc. That is also how we discovered the lunar cycle effect on my son's tics as well as his response to illness, stress, excitement and more I sure hope that this PANDAS debate convinces your doc mommy...........amazes me how it can be staring them straight in the face and yet they dont see it hope you will update us

Hi Laurie my son has to take very low dose melatonin when he uses it (rarely nowdays) as anything higher than 300 MICROgrams at night leaves him totally fatigued and groggy next day also, you may want to ask your doc to do a haematocrit check (usually a quick fingerprick) to be sure haemoglobin is ok...just to rule out anaemia as the cause of the fatigue generally, fatigue would not be considered to be a symptom of TS altho I do know that some kids with hyperactivity get "burned out" easily especially if they have been in hyper mode maybe some of our other members will have additional input on this for you

hi John...you do mean EPSOM salts when you say bath salts right? regular bath salts is not the same thing and yes, a cup would be a std measuring cup size (8oz)

John...so sorry things have taken a downturn. Yes, illness and especially viral illness can make things worse and frequently underlying issues can impact the effectiveness of the supplements. I dont have any contacts for doctors in the UK, but I would suggest that you try to find an Integrative doctor (conventionally trained and specialised in alternative medicine) or a naturopath. Honestly, from my own bitter experience, the conventional healthcare providers are really ignorant on all this and still follow the old fashioned approach of "live with the tics or take an antipsychotic med" Most of them dont even know much or anything about developments in PANDAS and PITANDS research that show a clear link to tic disorders, and they scoff at the mention of nutrition and supplements being a vital aspect of healing. I am pleased you have ordered Sheila's book and hopefully you will find a doctor who is willing to either also read it or at least research info that you provide from it Have you tried doing the Epsom Salts baths yet, John. I really cant recommend those highly enough, especially when tics are in flare mode. 2 cups of the salts (epsom salts=magnesium sulfate) in a tub of warm water and a 20-30 min soak before bed really helps!

that is really encouraging to hear Carolyn! I am so pleased for you. Thanks for sharing and I too hope this will bring hope to many worried parents.

thanks for that link Kim, tho sorry...I still do NOT agree about Tourette Syndrome being autoimmune Correct me if I am wrong but most TS/tics patients need BOOSTING of their immune system..at least that is what the anecdotal evidence seems to indicate...ie when the immune system is built up, they seem to do better In autoimmunity, the immune system is hyperactive and so boosting it would have detrimental effects and so cause an escalation in tics....not what a majority of folks seem to see Dealing with autoimmunity in my son re the Crohn's disease has taught me a lot about autoimmune processes, and I personally just do not see the fit between this and TS..........perhaps with other tic disorders and certainly with PANDAS/PITANDS yes.............but with TS???? TS is known to be a malfunction in the dopaminergic system and centered in the basal ganglia.....and so far I havent seen any research that would suggest that this is related to the myelin sheath being damaged by an autoimmune reaction in genetic Tourette Syndrome I realise that MUCH research still needs to be done and that I may be proved wrong on this....but for now, I just do not see the connection between autoimmunity and TS

Faith I am still totally puzzled by your doc's rationale and as to why on earth he feels a diabetes med that lowers blood glucose would benefit your growing child http://www.actos.com/sub_sec1_about_actos.asp

CP the PM would have to be for you as the pop up box only displays for the person it is intended for Just go into the section at the top right that says New Messages and you can read it Faith I personally dont agree with this doct0rs premise about TS being an autoimmune disease I will be back to post more later on this

Hi Cindy a skin test for candida is something new to me perhaps you are reacting to one of the allergens that were used in the test. Did you contact the doctor to report the reaction you are seeing? Did you have the first dose of nystatin the same day as the test? hope the eye blinking wanes quickly some people do find the amino acid L carnitine to be very helpful with eye tics (usually 500mg/day)

hi Cindy i cant see where the candida test would cause tics...it was just a blood test right? the Nystatin may have an affect tho....also, remember that with candida, once you start treating it you have what is called a die off reaction to the toxins it releases when it does....you should be taking increased antioxidants and drinking lots of water. Epsom salts baths are helpful and so is acupuncture. I also recommend drinking a cup of hot pure lemon juice 3X day (i cup boiled water with jiuce of half a large lemon or one whole small lemon squeezed in) The hot lemon juice is really good for detoxing