Chemar

ERP is a recommended therapy for OCD and altho it works for some, I have heard from some people who have tried it that their kids were not happy and were very agitated by it...same with CBT. some people really do NOT cope well with having to focus on their OCD so yes where ERP works well for many people, it isnt necessarily the answer for everyone what Pat seems to be referring to is more trying to discover and treat the root cause of the OCD issues rather than just looking for a therapy to help deal with the symptoms

Hi Pat we had conventional allergy testing via skin pricks and also radiogenics and then did elimination diets to rule out any specific sensitivities I dont know about stool tests for allergies apart from the chemicals and dustmite (and penicillin) my son doesnt appear to have food allergies, tho he has personally found that any form of corn is not good for him re supplements, you could see what they suggest and then post here for input on them re effect on tics

Mar, there is no reason why you should not see both the neuro and the naturopath the neuro can hopefully provide a more definitive diagnosis, but usually the only treatments they offer is medications the naturopath can hopefully help you with the more intricate aspects of healing rather than just masking symptoms with a prescription med

Hi Mar yes, it is far better to not push talking about it all unless the child initiates it with Tourette Syndrome, focusing on the tics actually seems to trigger more it is real hard as a parent to pretend you dont notice...especially when it is a very alarming or loud tic.....but often that is what one has to do in order to make it easier for the child same with the OCD.....my son made me promise years ago not to ask about it unless he invites it when my son was much younger, I got some of the excellent booklets designed for kids from the Tourette Syndrome association and just left them out so that he could read if he chose to as Faith has mentioned, that special one on one time is often a great way to communicate...and it is enough just to let your child know that he can always talk to you about anything whenever he feels he needs to.

Hi mar yes I agree with Faith on having your son outside at first (maybe a friend or family member can accompany you?) and then when ready the doc can bring him in for evaluation personally I think that Neuro's are not much help...they are ok if you need a definitive diagnosis or if you want to get medications but only rarely do they have any knowledge about the other things that can trigger tics not on the ways to also treat via natural/alternative ways hopefully this naturopath will be up to date on testing and treatments for tics

abbe apart from the food stuff (halloween candy, HFC in soda and possible msg) the lazers/flashing etc from the rides could have contributed to the eye tic. flashing lights definitely are a trigger for my son also at Disney, there may have been exposure to pesticides (their gardens and interiors are highly treated!), other guests wearing perfumes, plus the general excitement...all which can be tic triggers do keep up with the B6 and zinc re the pyroluria. I recall some with pyroluria also benefit from manganese

hi Jens phenylalanine stimulates dopamine which in turn can increase tics

Bonnie bedwetting can have many causes, so it isnt necessarily related to strep at all! but frequent and sudden onset bedwetting has been documented as one of the many sx of PANDAS

hi Lele bed wetting can be a sign of PANDAS what strep tests did they do that came back negative?

Hi carolyn yes, DW is very accommodating to guests with special needs in all ways, including diet, but you do need to notify them ahead of time also, just an FYI, if I read your post correctly you are planning to be there over the Christmas vacation? Do be aware that this is the very busiest season at Disney and so the crowds and the lines are the longest with often an hour or more in line for the more popular rides then That can be very exhausting for an adult, never mind a tiny one! Honest, my suggestion would be to wait until Aiden is a little older to fully appreciate it, but that is just my opinion. When we relocated to the Orlando area, my youngest was just 2yo and he found it very overwhelming being at Disney (he is my son with TS)..however, the following year, he began to fully appreciate it as he was a little older. we used to do the annual passes when the kids were young and had wonderful times there

Hi Rocco where I absolutely agree it is essential for you to look into the possibility of PANDAS, we do also have a representation of parents whose children do not fit the criteria for PANDAS, but have seen these symptoms come on after vaccination, as well as others for whom illness other than strep has been a trigger. (eg Lyme disease, Epstein Barr/mononucleosis, etc.) along with other triggers as well Has your son ever had strep infection? Is there any family history of tics or OCD? Did the tics and OCD start before the illness/vaccines or just get worse after them? I do hope you manage to find answers so as to get the most effective treatment

San there is probably a lot more up to date info that others can also give you on this but here is a good thread Claire did that may help you get started http://www.latitudes.org/forums/index.php?showtopic=755 and here is more info from our useful threads sticky in case you can use anything there http://www.latitudes.org/forums/index.php?showtopic=2459 not sure if any of those mention candida testing as that is important. usually a stool test for GIT infection. I know Claire mentioned the pyroluria testing ...that is important too IMHO and often doesnt get enough attention as far as the PANDAS testing, the parents on our PANDAS forum have most up to date info on that. It seems the CAM-kinase testing being done my Dr Cunningham is generating a buzz hope that helps a bit

Oh Mar I am so pleased to hear that! I know how it used to help my son too so am thankful to hear it soothed your little guy my son still likes to drink chamomile tea as well...sometimes plain and sometimes with a little honey. It has a tremendously calming effect I use it as a skin lotion and when we have made tea I dab the tea bags under my eyes, around face, neck etc blessings and hope you have a peaceful weekend and that this tic passes soon

mar, a teaspoon in a footbath is not really enough...it would require about 1/2 cup (my son uses 1 cup) per footbath and 2 cups in a tub my son often uses the footbath while watching TV. we have one of those Homedic ones from Target that also have the vibrate function, which he finds real soothing once your son realizes how the epsom salts calms tics and promotes good sleep, he will likely even start asking for it!

Hi Mar this is a fairly common tic best you can do is to keep the lip soothed. aquaphor is good. we used to use a chamomile teabag that had been wet in lukewarm water. very soothing is he taking epsom salts baths to help relax tics?

my son cannot take amino acid combos....could be there are aminos in that triggering tics? Bonnie Grimaldi once had an excellent review of the aminos to avoid on another forum, but that database was lost years ago when the site crashed, and that post along with it. I do remember that tyrosine was a big no no, and I think maybe arginine was too but to be honest I just dont remember we just avoided amio acid combos and only gave the ones my son was ok with (eg taurine, methionine) do remember too that it seems some people get increased tics from taurine

Hi Michael Tourettic OCD is the form of OCD that occurs co-morbid in Tourette Syndrome so no, I dont believe one can have tourettic OCD without having TS another subtype of OCD? possibly yes! the emotional and sensory sensitivity are also frequently co-morbid with TS, altho the primary characteristic of TS is motor and vocal tics that characteristically wax and wane. many people with TS only have tics, no other comorbid disorders. Some people may possibly carry the TS gene but not manifest the tics, ie only exhibit the OCD etc. something else to consider, *if* you do respond well to antibiotics yet have no evidence of strep antibodies then it may be that a different microbe may be triggering your symptoms. I know of people who have been misdx with TS when they in fact had lyme disease. Some people have reported their tics/OCD etc totally subsided after treatment for candida, epstein barr, herpes etc etc....so it isnt just strep bacteria that can cause tics or even OCD/emotional volatility.....other microbes can as well. I dont know if the term is still being used, but in kids who did not manifest strep profiles, this used to be called PITANDS

phew glad you can start to focus on your son now Bonnie yes, I do think sometimes the supps that help with one thing can cause a see saw effect on the other so when/if you do reintroduce the supps, be sure to only add one just as an example, where probiotics are so very good for one, yet since my son developed crohn's he doesnt dare take them as they seem to negatively affect his GIT now. same with grapeseed extract etc that always really helped his tics. cant take them anymore cuz they boost immune system which is not ok for hhis Crohn's what supps were you giving?

thanks CP so good to hear another confirmation that for most this gets better as they leave those hormonal years behind

do you have a link to support that information? if so it would be contrary to all other info I have found suggesting steroids are dopaminergic (certainly the anabolic steroids are documented as such) and would also not explain why tics appear to be spiking in some with TS when given steroids you may find reading that discussion I linked interesting I do not even vaguely claim to understand the biochemistry involved...and am only speaking from the experience we had with my husband, as well as the info I have been hearing from some parents whose kids show increased tics after steroid burst anyway I am not here to enter a debate about it...I just felt it important to post our personal experience and everyone can decide for themselves what they wish to do based on the information they have available.

Lele the Tourette Syndrome association has excellent booklets and videos to help explain TS to kids http://www.tsa-usa.org you can also phone them to get advice here is also a good website for you to learn more http://www.tourettesyndrome.net

I think it may be related to the dopaminergic response to steroids people with TS have a hyper-reaction to dopamine, resulting in tics. there was once an excellent article on the chemistry of TS that explained it, but I see it is no longer there as Geocities has been taken down here is the archived link of the discussion we had on the TS forum about it http://www.latitudes.org/forums/lofiversio....php?t1673.html

Mar also try googling "Environmental" doctors in your area they are frequently integrative and very clued up re allergies/sensitivities

I have personally heard from parents who are very worried by what has resulted after the steroid burst recommended by the doctor after a phone consult.

he has multiple and pretty serious health problems Faith, but the cognitive issues I am referring to did not start until the steroid burst and have not rectified, over a year later, just as the tics have not subsided since, nomatter what he has tried to calm them. My husband has always been very sharp minded. He said he felt the prednisone "fuzzed" his brain. It was a very clearcut transistion as to pre and post prednisone, and although as I say he has other serious health issues, the adverse effects that he suffered from the steroid burst were clearly evident and able to be differentiated from his other ailments