Chemar

That is such encouraging news mommy007. Thanks for the update and I hope your info will be able to help others too, especially those whose docotrs dont understand about PANDAS! Congrats to you for being a mom who persevered and did research!

Hi Giselle interesting discussion! I am not sure if everyone has their tics start in the eyes, but the eye rolls and blinks were what we now believe my son's first "tics" In K4 his teacher alerted us to the fact that he was rolling his eyes in class and then we started noticing it a lot at home too. When we took him to the pediatric opthalmologist we were told he needed glasses and the eye rolls did stop after that. However, by 4th grade he had started both vocal and motor tics and received the TS diagnosis. I should also mention that, when my son was an infant, he made strange little clucking noises during the first few weeks. The doctor told us it was likely due to a "floppy larynx" and it would go away, which it did. I sometimes wonder if those were vocal tics? My husband cant remember how his tics started As to why the eyes seem to be an early focal point for tics....hmmmm...hard to speculate on that as there is so much we dont know yet about TS and tics! For tics that are TS related, we know from the research that the basal ganglia and the dopaminergic neurotransmittor system are the main areas involved. It is also believed that the TS gene is activated more in boys because of the circulating androgens (steroids) and we all know that stress is a major tic trigger, most likely because of the elevation of cortisol, again a STEROID And then there is the research on magnesium......... Lots of little pieces but how do they tie together and why are the eyes so prominantly affected ?? Certainly something I will be thinking about and researching myself. It will be interesting to see if Kim has some info in her article sources!!

Deanna some people may not be actually ALLERGIC to certain foods yet still be very SENSITIVE to them. So perhaps the elimination diet is more one of determining those sensitivities that wouldnt show up in an allergy test per se?? this is just my guess as it is not an area I know much about so hopefully one of the members who has had more experience in this will be able to explain it accurately for you

Hi deanna when my son was allergy tested we had a RAST skin test along with blood tests I know that there are many more advanced methods avaiable now, but as my son doesnt have food allergies, it is not an area I know much about

Taurine is good..... but NOT A GOOD IDEA to take it without magnesium, and also, some people tic more with it!! Hi Amanda although I strongly feel that it is the specific blend of supplements that help people, yet if you are going to only add a few I would suggest a good multivitamin, high in the B vitamins(no colouring,or artificial flavours etc) along with extra calcium and magnesium in a 2:1 ratio, with zinc. Usually adults need 1000mg calcium:500mg magensium:50mg zinc Magnesium has been found to be very important in helping to reduce tics. The best form of magnesium is the one that comes compounded with taurine as magnesium taurate, provided you arent sensitive to taurine Omega essential fatty acids are also valuable, but be careful again as some people are sensitive to fishoil, even tho it is the best source of omega 3 if you are, then rather take flaxseed oil, or better yet a blend of flaxseed, borage and evening primrose (they come in single blended capsules) That is a good point to start at I think

Deanna this is something that Ronna (Ronnas) or Alison (ad_ccl) are most experienced in and so you could try sending them an email or a PM via the system here HTH

Here is some balanced info re PANDAS http://www.tourettesyndrome.net/pandas_overview.htm A blood test IS a very important diagnostic marker as it shows strep ANTIBODY titres and therefore gives a good indication of whether there is strep in the system. often the strep infection does not manifest as the classic strep throat and so simply doing a strep culture from a throat swab may not reveal the PANDAS case. Although NIMH is a very informative source, unfortunately govt sources are not always at the cutting edge re breakthroughs in diagnostics and treatments. We have some posters here (Ronna and Alison, amongst others) who have had much success with PANDAS treatment. My son did not have PANDAS and so I have more limited personal experience with this

Fluoride is a BIG no-no for both my kids. the first time, years ago, theyhad that awful fluoride paint at the dentist they got ill and I said never again. Since then I have avoided everything containing fluoride (including toothpaste) and they have great teeth!! (even the TS son who used to grind his!)

Hi and welcome to Latitudes I would highly recommend that you do some searches here re PANDAS This is a condition where tics can be caused by high strep (NOT just strep throat) and can only be diagnosed from a blood test........if your daughter has PANDAS, then a prophylactic treatment with specific antibiotics is needed....this freqently causes the tics to go into remission. DO note that many doctors are not very knowledgable about PANDAS and so you may need to do a lot of your own research. Also, until you have ruled out PANDAS, please be VERY cautious about any medications that the neurologist may suggest as these can frequently cause nasty side effects. sorry I dont have time to post more right now but hope that gives you some info

Thanks for posting about the camp Carolyn! I have only heard of them but havent ever met anyone who had actually been and so have no idea what they are all about. sounds like fun Such a pity though about the food as it reinforces that even those running the camp dont yet realise that junk food is a big tic trigger! Makes me sad too for all the kids who are unwittingly stuffing themselves full of stuff that is just going to mess up their systems and likely make their tics worse Have you tried the Candida Clear by NOW for use in conjunction with the probiotics? We are very impressed with it. Your GIT probably has reacted to the "foreign" foodstuffs and will hopefully settle down real quickly once you are cleared of any residual candida and toxins from all that and back on your healthy diet. Is there anything at TS camp directly related to TS, or is it rather just a regular camp where kids with TS can just be themselves and have fun. And, do you have any problem with mimicing tics of others while there? I think all this is of interest to any parents with younger kids who may consider TS camp thanks for sharing and "welcome home"

thanks for the update Carolyn hope you will also post some more about the TS camp Your doc is sooooo right about the importance of drinking enough water, not just during chelation or acupuncture or any detox therapy, but just every day! I have to really push it with my son too as he actually doesnt like water but is working on reaching the required amounts...I have found that letting him have some purified seltzer water as well as the regular reverse osmosis water makes it easier for him as he actually enjoys the cool seltzer and so he will take some glugs of regular and then a few sips of seltzer and so get a lot more in than when he is just trying to drink the regular alone

actually Hermann, aspartame is a chemical compound made from phenylalanine PLUS aspartic acid ........aspartic acid is EXCITATORY and thought to be the major cuplrit here. Phenyalanine (the DL form) was actually VERY helpful to my son when he was going through a phase of very troubling OCD induced tics that caused injury. D phenylalanine stimulates endorphins while the L phenylalanine seems to stimulate the serotonin system. This proved to be very effective treatment in controlling those OCD linked tics for my son. It is also a very good pain reliever in the DL form It is not recommended for long term use, but rather on an "as needed" basis However, Aspartame is VERY different from pure phenylalanine as it is: Splenda aka sucrolose is glibly marketed as "tastes like sugar because it is sugar" when in fact it is sugar which is chemically altered by replacing carbon atoms with chlorine ones............... Chlorine is a major tic trigger for many people

maybe this thread can help you Deanna http://www.latitudes.org/forums/index.php?showtopic=648&hl= it MUST be a urine test for accuracy...kp does not show in blood

Hi Hermann yes...we call monosodium glutamate MSG and it is a BIG tic trigger for my son and I believe really unhealthy for everyone! the other big food additive thing that sets my son's tics off is the high fructose corn syrup which the American food companies seem to put in EVERYTHING the sweeteners like aspartame (nutrasweet) and sucralose(Splenda) seem to also cause him increased tics and mega increased OCD/brain fog as do those pesky artificial colours like red40 and yellow5 etc Why o why do they feel they have to make everything coloured??!!! even white marshmallows have blue colour added

Hi deagar I hope someone with info on this will be along soon have you done a forum search on "pyroluria"?... I seem torecall that Claire may have posted info re the labs to use without a doctors prescription? we had the pyroluria testing done thru our doctor at the time when all the other tests were also being run and so i really cant remember which lab they used. it is a good test to get done tho

Hi efgh I am so glad to hear that things are going well If your son is having a lot of gas/burping, then two flags raise for me...one is allergy and the second is candida usually, when we get a lot of gas, it is because we are either not digesting something correctly or we are allergic to it. the candida can impact digestion, as can a lack of enzymes, while allergies can certainly cause poor digestion and gas. maybe others will have some additional ideas, but those are the first I think of with gas now, blood in stools, nomatter how little is something you should definitely have a doctor check out...especially as this is co-inciding with poor digestion=gas there could be a parasite problem, or it could be something like a Hemorrhoid or it could be some form of bowel inflammation...whatever....it really does need to be checked by a doctor. they will likely want to do a stool test My son's tics are so mild that they are barely noticeable which is a real blessing. However, he is dealing with his own GIT problems which are likely still a throwback to years ago when he had those toxic reactions to the medications for TS. Anyway, this is also why I am urging you to have a doctor check your son out re his digestive issues....just better to know and then to be able to effectively treat whatever the problem is

Hermann congratulations on starting a Forum over there Here is the contact information for Sheila Rogers so you can ask about linking http://www.latitudes.org/contact.html Although my son is not vegan or vegitarian, yet he has certainly found that healthy eating is an essential for keeping his tics and his OCD under control. He avoids all artificial foods, especially artificial flavouring, colouring, artificial "diet" sweeteners and preservatives, also no MSG, high fructose corn syrup etc Taking a correct balance of vitamin/mineral/amino acid and herbal supplements has also been key in helping his TS go from very severe to now very mild. I will write more about it later, but I am even more Anti-prescription medication for tics now than ever before, as those brain drugs really hurt my son, and, even 6 years since coming off those meds, which he was on for a year, we are still discovering the damage they did to him!!! although I dont speak German, I understand a little of it as I can speak Afrikaans, which is derived from Dutch (from South Africa) and so I understand Dutch and Flemish well, and a bit of German

Hi Satu there is no way to give half of a capsule. Honestly, I wouldnt start with 100 mg, especially for a child Perhaps you can ask the store where you found it if they can order the 50mg for you? that is just my opinion...others may difer

Hi Hermann and welcome you will find that this forum is filled with people who believe in the natural approach to treating Tourettes and we certainly do feel that diet is a key factor in this! If you start to read through many of the threads here you will find a great wealth of information on the various things that we have found to be helpful. Many have also found, as you did, that the prescribed medications dont help much and instead bring a whole nasty lot of side effects! Sheila Rogers, who is the Editor of Latitudes and to whom we all say "thanks" for this great website has also written an excellent book on these natural ways to treat tics and Tourettes http://www.latitudes.org/book.html My son has, in addition to the diet and supplements, has always found acupuncture to be very helpful, and his therapist has recently obtained some new technology from Germany called Frequency Specific Microcurrent or FSM....a revolutionary form of resonance biofeedback that is especially for pain/inflammation etc, but which my son also finds calms his tics..................here is a website about it http://www.frequencyspecific.com we look forward to learning more of your own methods, and getting to know you

it is generally recommended that one should start at the minimum dose of 50mg 5HTP taken in the evening You are already taking a very high dose of inositol (500mg per day is generally what is used) so definitely start low on 5HTP and if required move up..............may also be a good idea to take the inositol at the start of the day and the 5HTP at the end.

if you can let me know which area you are in I would be happy to help you find a doctor. if you dont want to post your location on the forum, just send me a private message

Simon yes, many of us buy our own supplements either online or at healthfood stores Here is the thread where I describe how we did this for my son (I have also bumped it up for you) http://www.latitudes.org/forums/index.php?showtopic=687

bumping up for Simon

I am glad to hear at least you have an answer Satu! Amazing isnt it how mainstream docotrs are often so totally uneducated about important information, and how they are also so resistant to learn about it! They seem to think that just because they havent heard of something, that it therefore isnt valid! anyway, at least the Keflex will beigin to do the work. However, if this is in fact PANDAS as opposed to just a strep throat infection, then you really do need to find a doctor who will do a strep titre blood test and, if that too is positive, prophylactic antibiotic treatment. Hopefully you will be able to connect with a doctor who either understands about the significance of PANDAS and PITANDS or at least one who will investigate it further. keep us posted! all the best to you

Simon have you emailed Bonnie AND tried to call Cas?