Chemar

my son isnt being ultra rigid because he doesnt have allergy to the gluten or the dairy. But he avoids as much as possible, and completely at home He was out with friends recently and his only choice was regular pasta and he had no negative effects from it. he has also started introducing small amounts of the sprouted grain products by Food of Life/"Ezekiel" grains and has either the bread or the cereal each day now and noticed his system tolerates it well. We get the bread in the freezer of the organic section of our local publix supermarket, and the cereals there too. we never eat white bread-rice-sugar etc. Refined foods are something I have always tried to avoid for all of us I have to say that since my son made these changes, I have been eating differently too and I like the effect

Faith, there are so many great rice products available to substitute for the wheat and corn to get those carbs my son by choice is also avoiding white potatoes and nuts, as he feels they upset his crohn's. He tolerates tomatoes well tho, but not green and red peppers and hates eggplant! lol so never eats it so that makes our choices less, but we really have been surprised at how easy it has been to substitute with brown rice products. He uses a little soy to substitute for some of the dairy stuff he does eat a lot of fruit and veggies and salad, all of which his Crohn's and TS symptoms seem to be ok with, even the salicylate ones, but he has found grapes, pineapple and watermelon irritate the Crohn's so avoids those

Hi and welcome so much of what you write could be describing my own son! we do have a family history of Tourette Syndrome with its associated tourettic OCD my son first manifest with some learning disabilities (ADD & CAPD) as well as sensory problems at a very young age and progressed to developing a rather dramatic onset of full blown TS/OCD etc just before Christmas 1999, after his 10th birthday I have documented his story in the link you will see in my signature http://www.latitudes.org/forums/index.php?showtopic=687 and recently updated it as my son is now 20yo and doing great http://www.latitudes.org/forums/index.php?...=687&st=120 you will also find helpful threads compiled here http://www.latitudes.org/forums/index.php?showtopic=2459 PANDAS is something worth looking into, especially if your child has a history of strep infection, but even if they havent had strep. still worth investigating it is an autoimmune illness, mostly seen in children, where exposure to strep(not just strep throat) can set off an immune problem and brain inflammation, that manifests with tics, OCD,often GIT problems, sometimes rages and moods and other mental/mood/behavior stuff there is also a theory that this can be symptomatic of other microbial infections eg by fungus (see many threads here on candida "yeast" infection) cold, flu, epstein barr, herpes etc viruses, and bacteria like mycoplasma, and those that cause Lyme Disease, staph etc. When I first learned of PANDAS, this other category was known as PITAND(S), to distinguish it from the strep induced ones the current methods of treatment seem to favor longterm antibiotics, IVIG, PEX etc tho I wonder if my son being on natural antimicrobials for so long has helped contain what I do believe a PITAND aspect to his TS. He had epstein barr, and some doctors believe Crohn's is related to one of the mycoplasma bacteria. He was evaluated for PANDAS by a doctor who was doing research on it, but he has no history of strep, tested low on the antibodies for it and has a genetic family history of TS we have a PANDAS forum here http://www.latitudes.org/forums/index.php?showforum=17 many people also feel vaccinations may have triggered these symptoms in their kids and we also have parents here who have discovered that food allergies (primarily gluten, dairy) have been responsible for the symptoms and then there are the mysterious "transient" tics which likely do have a trigger, but also seem to resolve on their own if I had to give one main suggestion as you start this journey it would be go as pure and anti allergen as you can in diet, supplement magnesium(oral and epsom salts baths) and a good multivitamin/multimineral/trace element, omega 3 and a natural probiotic, and try to keep his environment as clear of irritants or allergens as possible. stress, excitement, exhaustion, anxiety etc are known tic triggers and yes, sometimes in TS the tics and OCD can "morph" into each other, what our doc called tourettic OCD your son is also at that pubertal age where it is believed the hormones affect dopamine levels and so trigger tics in those with TS susceptible genes etc. One of the reasons more boys than girls manifest TS is believed to be that the androgens impact dopamine more. well, I have rambled on!! hope that helps a bit to get you started and that you will ask as many questions as you need to. We are all here to help and learn together.

yes, my son's theory is that people are ingesting so much corn, its "byproducts" and most importantly, its "chemically" altered forms like high fructose corn syrup HFCS that something has changed in the way humans were meant to eat corn!!! HFCS sets off both severe gut reaction for him re the Crohn's inflammation, but also spikes his tics and OCD Corn often has mold contamination and that is another big trigger for neuro and general health stuff I believe there are sooo many artificial food additives that are messing with people's minds and bodies, and one of our naturopaths feels many ails that people have are related to this form of multiple chemical sensitivity (MCS) because of the overexposure to these things from cradle to grave. we absolutely avoid all food additives like HFCS, also the dreaded food dyes!!, and Splenda/sucralose, aspartame/Nutrasweet, MSG (and all its hidden forms in those ubiquitous "natural" flavorings! ....carrageenan, sodium benzoate and other chemical preservatives, maltodextrin, etc etc etc. Basically if it has a long list of ingedients we are suspicious! Same with chemically enhanced household products,especially those with chlorine, also perfumes, toiletries with lots of additives and dyes, PESTICIDES! etc etc We discovered the hard way just how those things negatively impact my son's (and our general) health and saw dramatic improvements when we went "pure" in organic foods and as chemical free everything else as possible

Hi I replied to the PM too, but will also post the info here in case anyone else is interested do remember tho that my son is on his diet/supps for Crohn's, TS/OCD so PANDAS patients may need variations we based a lot of his diet on info from Dr Weil, I have a number of his books and here is also some info on anti-inflamm diet from his website http://www.drweil.com/drw/u/ART02012/anti-inflammatory-diet as well as on the book The Makers Diet by Jordan Rubin (altho we didnt follow that to the letter...rather just got ideas and recipes, and we dont use the website subscription at all as I find that ridiculously pricey) My son is recently gluten and dairy and corn free, not because he has any food allergies, but because he has personally found this helps decrease inflammation. He is high on omega 3s and tries to keep omega 6 low, as well as choosing foods that are low glycemic index a lot of his diet is based on personal choice, as he has learned the foods that seem to work best for him. remember too he is now 20yo and has been dealing with all this since in elementary school, so we have had a lot of trial and error along the way! The Boswellin/curcumin supplement is an essential part of his diet, as is extra turmeric garlic, ginger and honey I recently updated on his current supplements on my long running thread on the TS forum as to which treatments help him http://www.latitudes.org/forums/index.php?...ost&p=55099

piperine, which comes from black pepper is supposed to aid in the absorption of the curcumin from turmeric some curcumin supplements have the piperine added

there is also a recent thread on curcumin, the active anti-inflammatory found in turmeric my son used it for his autoimmune Crohn's http://www.latitudes.org/forums/index.php?showtopic=7075

Hi my son is on an anti-inflammatory diet for his Crohn's Disease, which is also auto immune In addition to the careful diet, he takes no medications, only specific supplements for his Crohn's, TS and OCD he is doing great on this

not all kids who have TS have PANDAS or have had strep infections

I and others have posted before that even tho our kids can eat fish with no problem, yet fishoil (any kind) seems to be a tic trigger, and so they get their omega 3 from non fishoil sources well, someone wrote to me elsewhere with this info. I dont fully understand all it is saying yet But I get that fishoil contains the EPA and DHA whereas with flaxseed oil, it is ALA (alpha linoleic acid, not alpha lipoic acid)which is then converted to DHA and EPA, so maybe that is why it is better tolerated than the fishoil in susceptible individuals?

as a follow up to the info that some people with TS seem to show intolerance for fishoil I got this info from someone today

Maybe also try asking at Dr Tanya Murphy's office at the Univ Florida Tampa campus. She was one of the initial PANDAS docs when at Shands/Univ Fl Gainesville and now she is in Tampa. her Office may know of docs near you as you are on the west side of central florida (I am between Orlando and Daytona so NE of you)

Hi not that we are aware of, tho I have always suspected a PITAND aspect to his Tourette Syndrome He does also have Crohn's Disease, which some docs think is related to mycoplasma. We know he once had Epstein Barr tho never mono. he is now a 20yo and doing just great. some mild tics, rare OCD and when it shows, not intrusive or scary like it used to be when it could "morph" with the tics and result in either psychotic behavior or unintentional self injury. Now it is more mild precision/organizing OCD, which he releases via his music and artistic stuff. He still has diet/supplements(nutritional, herbal and natural antimicrobials & probiotics) and things like acupuncture as his primary healthcare. I did have him under the care of Dr Murphy and one of her associates for many months, but they did not feel he was PANDAS based on the testing they did then, and him having absolutely no history of strep. I took him because of his sudden onset of the severe TS/OCD when I first learned of PANDAS in 2000/2001 while frantically researching what may be happening to him. In our journey, we realized that my husband and his own dad, and possibly in retrospect memory of some of my cousin's and uncles, had symptoms of Tourette Syndrome. We are pretty certain we are dealing with genetic TS, but as I mentioned above, there is also the PITAND component. We feel possibly the natural antimicrobials he has been on for many years keep that aspect under control

lololol I can attest to the excellent public HealthCare System in the UK I'm a South African Brit who studied, and lived there for a number of years (in London) I did find some good alternative doctors there too tho. Even saw a guy on Harley Street once who prescribed homeopathic sulphur pillules for a maddening allover body weird itchiness that I was experiencing at the time those pillules worked within a few days and I have never had that itch again! but it seemed the alternative docs were primarily private (and like here, often very pricey!!!!!!! ) because they are few and far between and many desperate people who really prefer to take a more natural approach to health and healing but yes, re the NHS...they all seemed to be "by the textbook" as did the institutions that taught them. I did some tutoring while at univ in London, and so met some of the medical students and teachers. Very little lateral thought beyond the pills to fix all ails approach, and most alternative medical thinking roll-eyed as "quackery" it is great that you are trying to advocate there Jules! all it will take is for you to convince one doctor there who already thinks a bit out of the box to start reading here and the other places with info and you may start a movement

I think many of the kids from lower socio-economic groups get "mental illness" diagnoses rather than further investigation. I think numerous "quasi psychotic" PANDAS cases are missed because they are simply lumped into the MI group I was watching a documentary the other day about adopted kids with "mental illness". Many of them are not Caucasian. From the little I know of PANDAS and the lot I know of TS/OCD, it struck me that a number of those kids could be undx PANDAS/PITAND or Tourettic OCD. Breaks my heart to see kids drugged up on anti-psychotics and other strong meds, sent to rehab and psych wards simply because their well meaning parents have no idea of these other conditions, and as we all know, many doctors dont either when my son first manifest some of the more troubling tourettic OCD symptoms, a psychiatrist told me he would likely have to be institutionalized Thankfully I refused to accept that evaluation, and seeing my son now at 20yo doing so well, I have an even stronger concern for the many kids who are being misdx

my son was born in Africa, and lived there till 2yo. I am South African (born to parents of European/British ancestry) and my husband is American (European Jewish Ancestry)

I filled in english/european but in fact it should be British as my UK ancestry is Welsh lol not sure the Welsh would like being called "English" I dont have time to look for it now but there was a discussion here some years ago on ancestry and it basically left the conclusion that TS is widespread

Faith and Hope Oh Yes!!!!! Hope I sure do remember how it was when my son was 11 and dealing with multiple tics He had very strong vocals then and we did find L carnitine very beneficial. We used it only until the vocals had settled from strong and intrusive to mild. A few years later, when he was 15, he developed more loud vocals and tried the carnitine again and this time he found it had a side effect of leaving him feeling a bit odd mentally and so he decided never to use it again. I say all that to suggest it is worth trying as it may help...but start low and go slow so that you can remove it if you need to The only other thing that has always had a dramatic impact on calming my son's tics is acupuncture. his acupuncture therapist has experience with TS another "quick fix" for calming waxing tics some is those epsom salts baths hope that helps a bit

hi fixit curcumin is from turmeric so yes, cooking with it is good we do use turmeric in a lot of our food. my son definitely needed the extra in supp form for dampening the inflammation from his Crohn's tho I read an interesting study once on the low incidence of some neuro illnesses (including I think Alzheimers) in the populations that eat a lot of turmeric

my son takes curcumin as an anti inflammatory for his Crohn's Disease. It is remarkable in it's anti-inflammatory properties, and I know of people with PD who take it too. I dont know about this product tho. Is it just curcumin? or other ingredients too? I keep hearing more and more good things about curcumin, so great if it also has anti-viral/anti-fungal properties! the curcumin my son takes is mixed with Boswellia. he uses the NOW product Boswellin boswellia apparently also has OCD reducing properties so we have added benefit from that blend of curcumin

Hi Vickie only the fishoil supps (liquids and capsules...my son has tried most versions) so yes, other oils with omega 3 seem to be fine (my son takes flaxseed oil which has high omega 3s) EATING fish also seems to be fine...it just seems to be something about the fishoil alone that sets off tics for some people with TS

me again fishoil is remarkable in the many things it can be helpful for!! I know of someone who was able to remain without medications for severe ADHD just by taking good, pure fishoil supplements! and have seen these reports re bipolar help too I do just need to point out for those who also have a TS diagnosis that for reasons not understood, SOME, not all, people with TS seem to tic more when they take fishoil supplements, even tho they seem able to eat fish without problem my son is one who has elevated tics if he takes fishoil supps. we have numerous more reports of this on the ts/tics forum here flaxseed oil supps, as well as eating healthy amounts of wild alaskan salmon and other omega 3 rich foods seems to be a good substitute for the fishoil capsules for those who show this sensitivity

Hi Andrea my son was dx with TS when he was 10, altho he had an ADD, CAPD, SID with possible OCD etc !! from when he was 4yo and just starting preK classes. He had what we now know were early tics then too (eye rolling and blinking..thought to be related initially to his short sightedness/astygmatism, and some vocals) His young friends then never seemed to notice or comment on those early symptoms He had a pretty dramatic onset of the full blown TS symptoms just after his 10th birthday and so things were very noticeable to his friends as he had a lot of motor and vocal tics, and his OCD and depression became really bad. When the TS dx came , he was in 4th grade and he decided he wanted to be upfront about it. I got some literature and learned as much as I could and the school allowed him and me to tell the class about TS (they brought in the other 2 classes in the grade as well) it was a positive move as it not only helped give understanding to my son, but gave him the ability to continue to speak openly about it and so avoid misunderstandings with others. Yes, there were then (and still are now) people who ridicule and are unkind, but that is life (as my other son. 23yo, who has red hair and freckles, but no TS discovered ) My TS son has always dealt with those types by responding firmly but nicely and tried to educate and then, if no improvement, ignored. Yes, I know he has suffered some hurt in his life from this, but overall now, where he is a 20yo young man with TS etc....he is a very sociable, well liked and well adjusted person who has a far deeper and more mature character than his peers. He allowed TS to make him better not bitter, and it came from facing it head on right from the start. For a 7yo I realize it may be a little harder as the level of comprehension is very different from an older child. Still, maybe getting some of those free leaflets/booklets that the Tourette Syndrome Association put out on how best to talk to young children (patient and peers) about TS. I think they also sell a video about it? I dont agree with much about TSA's closed minded views on treatments for TS, they do also have a lot of helpful stuff, especially with regards to education, school accommodations, school advocacy etc. another good site is http://www.tourettesyndrome.net/education.htm hope that helps a bit

I am actually in agreement re not giving prescription antibiotics too often! We hardly ever use them and instead use natural antibiotics like monolaurin, olive leaf extract, garlic, honey etc I hope you see good results with the homeopathic remedies. They are often very effective...they just take a bit longer than the strong drugs I am rather amazed that the GP there doesnt screen for strep when a child has a sore throat. Even here, where PANDAS is generally still considered "quack stuff" they do still take strep seriously and usually will do a throat swab, especially if the parent asks for it. I hope they may do one for you as that would be a clue for you re whether strep is present and if it triggers tics etc for him

Hi Bev by strep test I dont mean the advanced PANDAS testing...I mean just to ask for a throat swab strep culture so that you can see if there is active strep associated with the sore throat. The kind of strep test routinely done by doctors