Chemar

Hi Faith yes Crohn's is autoimmune which means the immune system is "hyperactive" and so no, one no longer wants to "boost" it but rather to "modulate" it (one of the reasons azith seems to work well for many with PANDAS - which is also believed autoimmune, is that it apparently has immuno modulating properties in addition to it being antibiotic.) In autoimmune illness it is like the body sees areas of itself as "foreign" and so sends the immune system into overdrive reaction so one is seeking to balance the immune system with autoimmune illness, causing it not to overreact so easily. This is why anti-inflammatory diet/supps etc is also needed for Crohn's as the hyper immune system causes inflammatory reactions over little triggers that wouldnt normally cause such intense inflammation in someone with a "normal" good immune system Omega3 is an excellent anti-inflammatory but omega 6 boosts the bodies inflammatory response so is not wanted in autoimmune disorders it is a fine line between things that are good for the immune system and those that boost it to the point where it actually triggers symptoms in autoimmune disorders my son stopped taking the supps he used to for immune boosting support after his Crohn's dx ...they are excellent supps and usually needed by most people, but not a good idea for autoimmune illness. eg pycnogenol/grapeseed extract and even too much probiotic, too much vit C/citrus stuff. He has learned by trial and error which foods to avoid too. it was hard initially to get the balance of supporting what he needs for the TS/OCD while avoiding anything that could cause the Crohn's to flare but he has it really well tuned now and doing great hope that helps answer your questions...let me know if more specific info needed

Hi IMO sounds like the focus of driving is triggering tourettic OCD This isnt a new car is it? we have reports of whatever chemicals are used interior of new cars sometimes triggering tics/OCD do you take anything to keep your serotonin levels up? There are supps and meds that do this. the supps that have helped my son are samE (or the less expensive methionine), Inositol and when things were very severe, 5HTP (some prefer tryptophan) remember you shouldnt mix these without a doctor advising you and always start at the lowest dose and work up as needed I am assuming you already take magnesium to help with tics?

for us the changes just represent the characteristic waxing and waning of TS tics I must say tho that my son has never ever had the very loud vocals he had when younger. He was on l carnitine for a while when he got the banshee shrieking tic and after that, tho vocals have come and gone, we have never seen that intensity or frequency again

par for the course with that reply from your neuro They negate that which they are ignorant about! here is a helpful list of some tests http://www.latitudes.org/forums/index.php?showtopic=755 the spectracell test is very accurate NeuroScience Labs also does some specialized testing https://www.neurorelief.com/index.php?optio...9&Itemid=74 we had hair analysis done and then followed it with blood tests and were quite amazed at how accurate the hair analysis was there are other tests but those are some that come to mind immediately

Medication. when we used medication for my son to try to help reduce the tic severity, we got precious little tic relief, and a whole heap off added side effects that were way worse than the tics!! Yes, some people do find help from meds, and feel the benefits are worth the potential side effects, but I would again urge everyone to do very careful investigation on the potential side effects before making the decision to put a child, with a still developing brain, on "medication" for tics, especially when there are more natural ways that may help. We found that the doctors gave glib "minimal and rare side effects" answers when we asked, but the experience we had with my son, on a variety of meds, was horrid!!

usual recommendations on supps is half adult dose for child under 12yo and 1/4 adult dose under 6 yo we have always preferred natural kefir as probiotic (I get the Lifeway brand at our supermarket) and also use Stoneyfield farms yoghurt (most other yoghurt is just sugar and artificial garbage!)

Hi I agree it is very odd that the doctor would diagnose TS that way! TS is diagnosed after manifestation of BOTH vocal and motor tics for at least a year, and usually with family history of tics. Good that you havent filled the clonidine...it can have some really nasty side effects and especially when it may not be TS, I am astonished that a doctor would be so quick to rx it....sigh then again, Iguess I should be used to conventional docs doing this by now we cant offer any diagnosis here, but the repetitive vocal and especially the "is this ok" sounds more like an infective agent OCD/tic type reaction....what some call PITANDS...similar to PANDAS but not strep related, rather some other microbe. It could also have been a reaction to the tamiflu, which some have reported as well. Did they check your son for strep at the time he was ill? there have also been some posts here recently related to some people having tics as a result of TMJ problems (temporomandibular joint)and many of us have also noted that teething issues can increase tics (even for people who dont appear to have TMJ probs, like my son, who does have genetic TS) try not to worry and rather just keep doing your own investigation. Your pediatrician sounds level headed so hopefully will be willing to guide you thru all this and read up on what you discover

olive leaf extract is an excellent general antimicrobial as is monolaurin(lauric acid from coconuts) personally I wouldnt go near Threelac as I have been hearing some ick reactions to it http://www.holistichelp.net/blog/is-threel...-and-effective/

just be careful of Nystatin, Faith unlike things like Candida Clear, it is a DRUG ie artificial chemicals, and a lot of people seem to get ick side effects from it. personally I dont think it is a good idea to use any medication (drug or supp) if there isnt a specific need but that is just IMHO. I just feel that using it when not needed can reduce its effectiveness when one really does need to use it. why not try the "spit test" and see if it gives a clue? most people nowadays have candida overgrowth...it comes with modern diet of refined and artificial foods, plus the overuse of antibiotics and other over sanitization...I know people who have had candida skin infections traced to overuse of "antibacterial" soaps and hand "sanitizers"...we kill off so much of the good bacteria that we provide a fertile breeding ground both inside and out for bad ones. the Yeast Syndrome book I referenced suggests many ailments are actually candida based, but modern medicine tends to overlook it, or put it into the "quack stuff" category I know that our overall health has improved since we began monitoring candida.

here is a good overview of the symptoms Deanna http://www.holistichelp.net/candida.html best book I have found on the subject (with recipes at the back too!!) http://www.randomhouse.com/catalog/display...n=9780553277517

Mar remember that where candida is sometimes called "yeast", it is in fact a different fungus from actual yeast a candida diet is one where foods that feed the fungus are avoided, while the fungus is treated with anti-fungal agents. diet alone wont cure a candida infection we found no bad interactions with candida clear and other supps, but if you dont feel comfy about it, rather discuss with your doctor first. the ingredients are listed here http://www.iherb.com/Now-Foods-Candida-Cle...-Vcaps/462?at=0 do remember tho that when eliminating candida, something called a "die off" reaction occurs where one will initially feel lousy before feeling so much better. that is because the dying fungus exudes toxins. Plenty of water and things like hot fresh lemon juice can really help the detox, as well as epsom salts baths.

Mar, with the family history of TS it is more than likely that your son is exhibiting TS symptoms that's not to say that you shouldnt still investigate things that trigger the tics....IMHO that is essential as by eliminating triggers one can stop the severity and frequency of tic/OCD waxing. but if it is TS, a level of acceptance that he IS likely going to tic is also needed. Sometimes nomatter how we are doing all the right stuff, the mysterious characteristic waxing of tics happens. In our experience tho, it has never been as bad as it used to be before we started the careful diet/supps and other trigger eliminations etc

so good to hear from you CP and especially to hear the encouraging updates on your son mine just texted me a video he made at the top of a mountain in northern Georgia! He has been there since after Christmas visiting a friend's cabin in the woods and having a great time hiking, climbing etc. so there is another encouragement for all feeling despair.....10 years ago I was told my son would likely have to be institutionalized! as things were so bad. And here is is now a 20yo well adjusted young man. he told me some years back that he would never again let TS be stumbling block to him, but would use it as a stepping stone to always lead him forward and upward. he sure has done just that

hi best to just use the add reply button to get a new message posted here...I see my post quoted but no message from you?

Kim the eye thing you describe is what our physician would define as "tourettic OCD", where the tic morphs with OCD "catching" tics/OCD is commonly reported by people with TS, and actually one of the reasons my son stopped going to TSA meetings and avoided the camps etc, as he is very prone to picking up other people's tics as well as developing OCD symptoms by autosuggestion

Hi and welcome working with a good doctor who can guide you is a real plus in all this Bonnie's supplements are formulated to take the guesswork out of what and how much, but even just reading her product ingredient list can give you guidelines on what to try and how much. That is how I formulated my son's supplement program years ago, before Bonnie's supps were on the market, and she had freely posted about what she was giving her son. It worked so well for mine, with some stuff added and some removed based on his individual needs) that we have never looked back! (see my signature link below for details) just a comment on what you are giving so far.....200mg magnesium is low for a 16yo with tics....my son was already getting more than double that daily when only 12yo. Also, do consider trying the epsom salts baths...they really do seem to help a lot! We also now use the Natural Calm inonic magnesium drink mix and my son finds rapid relief from that when tics waxing you mention and aminoplex product....do be aware that some amino acids can INCREASE tics because they are dopaminergic (eg tyrosine and phenylalanine, amongst others) so it is often suggested that people with TS not take a comprehansive amino acid supp but rather focus on the amino acids known to help with tics (eg taurine, l-carnitine etc) but even there, proceed with caution and add only one at a time till you are sure of positive effect. also, the Royal Prim is an excellent supplement, but people with tics tend to need more omega 3 while the primrose oil is omega 6. Some people add fishoil to increase omega 3, but be aware that some TS patients seem to tic more with fishoil supps and do better on flaxseed oil well, I hope this helps a bit and do just keep asking questions and reading thru the posts here, especially the helpful threads compilation pinned to the top of the board http://www.latitudes.org/forums/index.php?showtopic=2459

((((deagar)))) I think every parent here can identify with how you are feeling. As mother's it is our "job" to "make things better" and when we cant, it does feel like personal failure, even tho with tics/TS we can do all we know how and still have to face the fact that the tics are there. when my son was younger and things were real severe, I used to spend many an hour on my knees weeping, and sometimes would even have to pull the car over after dropping him at school to let out my own fears and anguish! Yet here he is now, 20yo and doing so well.....yes, he still has tics .....but oh what a difference now vs then! have you tried getting you husband to read something like Sheila's book to maybe help him understand the importance of the things you are trying to eliminate? If it is any consolation, even tho my son does have some photosensitive induced tics, he himself flatly refused to give up his TV or video/computer games etc, but he did consent to always keeping the daylight lamp on to prevent the flashing/darkened room effect, and we use only the LCD screens. Thankfully tho he did become the monitor of all unhealthy food and refused to consume it even at a younger age. anyways, I do hope perhaps your hubby will read the book and so at least you will not feel so alone in your attempts to improve things. Did you read the "It's OK to Tic" post? http://www.latitudes.org/forums/index.php?showtopic=1182 doesnt mean we stop trying to make things better, but hopefully just helps us get things in perspective all the best and hopes for 2010 to bring relief from the stress and anxiety, and for your son's tics to wane much!

Hi and welcome, with the behaviors/illness you describe for the 10yo coupled with his strep history I would say it is good that you have posted this to the PANDAS forum as well. The parents there can give you info on how to consult with PANDAS physicians by email/phone who will be able to then consult with your own doctors to educate them on what PANDAS is and why your child does seem to possibly fall into this category. He may well have TS as well, but that doesnt rule out a dual diagnosis of PANDAS too

Happy New Year to you too Faith, and to everyone else who has made this board such a wealth of information along with so much caring support for one another.

I dont think that is it's action Janna but honestly dont know for sure. I do know it increases serotonin and that is likely why it helps OCD I am not trying to compare NAC and samE...only mentioned that samE is currently my son's personal preference for his OCD and that Carolyn on the TS forum has experience with NAC use

Hi Mar my son had stool and blood tests for candida dx there is also a "spit" test that may give a clue as to whether GIT yeast overgrowth is a problem. it isnt a definitive test, but if it shows the tendrils, worth checking further IMO http://www.adhdrelief.com/CandidaTest.html we found the diet recommended by Walker/Trowbridge in the book The Yeast Syndrome to be easiest. they give great recipes too the most effective supplement we used was Candida Clear by NOW

((((Faith))))) I dont think the post is suggesting that we just sit back and not do anything, especially when the child is being negatively impacted by the tics It is more written from the perspective of people who have a clear TS diagnosis where, nomatter how one can do stuff to try to help, whether meds or natural treatments, inevitably there will still be tics. that is why I stressed it was written specifically for those dealing with Tourette Syndrome. as you know, when my son was newly diagnosed and things were really bad, we did try meds, and sadly things got worse, not better. The combination of his supps, diet, acupuncture and removing triggers has worked wonders in bringing him from severe to mild TS/OCD. However, one of the biggest hurdles for ME to overcome was acceptance that people with TS tic. Once I reached that point, it made life a LOT easier on him especially, and on me. that really is what the post is about...realizing that we should do all we can to make things as "better" as possible....but with TS, we simply have to accept that there will be tics, and not let our obsession with trying to "fix" them cloud our vision of who our children are.

evemac, remember it is the warm teabag resting on the chafed area that is best rather than just applying tea you can keep the warm tea at hand to redip the bag when it cools off

Chemar My sons tics have gotten better but it seems his OCD kicks in and it comes and goes with severity. Some of the major ones that I think is OCD is for example when we are driving he keeps asking when will we get there and then he will say how many minutes are left every couple of minutes. It seems like it kicked in over the holidays. He gets very excited when he sees his cousins. I think this kicks it in for him. When your son had OCD did he seem more irritable and did he get anger easily during those times.. My son is also very detailed when he explains things (is this OCD). I have read your posts about cognitive behavioral therapy for the OCD. At what age did your son go? Did it help him. Once again I feel my son (7) would think I am crazy if I had him talk to someone about this. He would say nothing is wrong. Any info on common OCD/tic and insight on the therapy would be very helpful. Also is there a supplement that could help that you would recommend. Mar Hi Mar yes, OCD waxing seems to bring irritibility etc for my son too He was 11 when he started CBT you may want to try Inositol and see if it helps your son It is a B vitamin known to help OCD and has the lowest potential for side effects. Best to start at the lowest dose (500mg/day) and go up if needed. Omega 3 is also recommended tho some people tic more with fishoil version. we use flaxseed oil when my son's OCD was very severe years ago. we also used 5HTP but it is very strong and IMHO your little one may be too young for it. Perhaps the pure tryptophan could help? but again I am not sure if too young for that. there are posts here by others who have used it successfully. it provides a very rapid increase in serotonin, which is usually deficient in OCD patients my son currently takes a combination of Inositol (1 gm/daily) and samE (200-400 mg/daily) and finds this combo has really worked for his OCD but remember he is 20yo so a big age difference!

Hi Adam I dont think anyone is "experimenting with large quantities of supplements" here for seasonal allergies those of us who have had success with a supplement program are using it for the Tourette Syndrome spectrum of disorders, where seasonal allergies may or may not also be one of many triggers for tics most treatments come with a measure of trial and error, whether conventional medications or alternative treatments. what works for some people doesnt always work for others. I have personally heard good reports from those who have used the NAET treatment for allergies. Some people have also reported good results from the allergy products at nativeremedies.com Others have used OTC products like benedryl and seem satisfied Again, it is trial and error and dependent on individual reaction an environmental physician is the best route to go IMHO as once you know what the allergies are, you can best enter a treatment protocol for them