Chemar

Hi why was he diagnosed PANDAS? did he have strep history, titers etc to validate that? or was it rather a PITANDs type dx because of the onset after the flu? was he given the steroid burst to try to diagnose the PANDAS or after the dx? as you may know, this is something I have great concern about as some doctors seem to be using steroids as a diagnostic and they can make tics far worse in someone who may have TS!! Do you have any family history of tics, TS and/or OCD and yes, rapid onset can occur in TS . It is likely triggered by something (internal or external) that likely switches on the gene(s) that set the whole thing in motion. Not only infection causes rapid onset IMHO

Naturopath's do not always have a conventional medical degree as well as their specialization in natural medicine....Integrative doctors do

Hi tics can sometimes put the skeleton out of alignment and that can cause neck pain and even headaches we have always had a NUCCA trained chiropractor as part of my son's health maintenance for this reason. NUCCA chiros have special expertise with the neck (cervical) area http://www.nucca.org

no refrigeration needed. the raw organic honey has definite advantage over the more "mass produced" brands. It is straw colored and coagulated at room temp ie not runny honey. local honey is also supposed to be more helpful for allergies excellent natural antimicrobial

I have posted a lot about my son eating daily raw organic honey for his overall health no increase in tics from it, in fact only benefits noted in the few years that he has been taking it

Hi Lollymom and welcome in case you hadn't seen, this thread you replied to is from 2006 and yes, even then we were discussing PANDAS here, long before other forums were. So much so that we went on to open our own PANDAS forum http://www.latitudes.org/forums/index.php?showforum=17

seems the negative effects of HFCS have begun to be noticed! and so yup Big Corn wants to change the name ..... http://www.huffingtonpost.com/2010/09/14/corn-sugar-high-fructose-corn-syrup_n_716007.html

Hi CP, no, I was referring to the dl-phenylalanine that is in the empower plus. that was what my son was on short term Andrea, as your child had not been on a multi-nutrient before I do think you are seeing the benefit from actually giving all the essential needed nutrients. The formulation of the Empower Plus does look very pure so glad it is working well!

Hi Kelly my son's tics were so bad that they were causing him injury with hospitalization we tried meds for almost a year with disastrous results (side effects far worse than the tics & OCD) the change in his condition as soon as we started him on magnesium was in itself miraculous, but then as we added the other supps and cleaned his diet etc it was crystal clear we were seeing a direct benefit. when he skipped supps or cheated on the food by eating artificial garbage, the tics spiked dramatically. we have been on the natural protocol for long enough now to know it works, and yes, the fact that he is now a young adult and out of those primary tic teen years onviously has contributed to the overall improvement, still we have been doing the supps, diet, acupuncture, epsom baths etc since Nov 2001 now so feel confident in saying it has helped enormously I have a link in my signature on what helped him and updated it recently

Hi and welcome glad the Bontech have helped to reduce the tics. my son has been on assorted supplements and clean diet for 10 years now and although we have changed and tweaked things over that time, we have not seen a "tolerance" develop as much as him getting better enough to be able to reduce many of the supps and aim more to get what he needs from his food, teas etc we always found waxing and waning to be more related to a specific tic than tics per se. As one would wane another would wax and yes, where we have certainly identified triggers that contribute to waxing, and so avoid them, sometimes with Tourette Syndrome, tics "mysteriously" wax and wane without clear trigger, so maybe some internal mechanism

there are quite a lot of posts accumulated here over the years where people have found especially eye tics resolve with allergen removal, whether food or environmental so it may be worth going dairy free again to check what happens. Have you checked for soy allergy or sensitivity. My son used to be ok with soy, but realized that altho he doesnt have allergy, he seems to do better digestively off it. Same with gluten and dairy for him.

so it is basically just a multi with some extra ingredients? Andrea, was your child on a multi before? if so, what do you feel makes this one different? just an FYI for anyone reading....I see this also has dl-phenylalanine, which can increase tics for anyone with TS because phenylalanine is dopaminergic. (it is one of the amino acids NOT recommended for people with TS for that reason) However, there are also tremendous benefits from it re calming depression, self injury etc. My son took it (phenylalanine) for a short period for tourettic OCD some years back, and it was helpful, but we were advised only to use it short term

I moved it here for you and left the link on the PANDAS forum for others to follow if they need it

my son takes some supplements successfully for OCD/anxiety, but am not sure how these may or may not interact with your PANDAS treatments he has found samE very helpful, along with a little Inositol I am not sure if one can take samE along with NAC my son also finds it essential to have daily methylB12, P-5-P(B6) and D3 he notices an immediate up in his symptoms if he skips those drinking lemon balm tea and smelling jasmine oil have been recent additions that he finds truly remarkable!

yes, we were told by our physician that long term use *at high dose* can cause an upswing in anxiety. My son had noticed this when he was taking it in high dose. apparently on should not use the high dose (10+ GRAMS daily) for more than 6 weeks at a time when in crisis with OCD taking inositol at lower dose (recommended is 500 mg to 1 gm a day) seems to be fine it also seems important to be taking some form of B6 as well with inositol

trichotillomania (hair pulling) can also occur in people who do not have PANDAS, and eyelid pulling is not necessarily the same thing ameecram, did this start after you re-introduced the dairy have you tried having him totally away from screens for a few days and does that stop it? not sure if you have researched Claire's old posts on photosensitive tics but there is a lot of info there that she researched on the subject of screens (especially ones that are not LCD) being a major tic trigger for some people

glad to hear you have found something that is helping so well, Andrea could you let us know what the ingredients are?

I just want to also remind anyone who is reading here primarily re tics and TS and who may be confused by the talk of antibiotics....the members discussing the abx are parents of kids who also have a PANDAS (or suspected) diagnosis. as a rule, antibiotics are not used for tics and Tourette Syndrome unless there is also an infection to treat, in the case of PANDAS, strep

Hi she may have become obsessive about what she is eating, or her weight/appearance, and so have developed an ED is she consulting with her doctor about this? I hope so! OCD is hard enough to deal with, but EDs can be very dangerous and this is something she may need professional help with. The doctor would likely refer her to a psychologist experienced in treating both disorders

Honestly, I think you should be very very careful about making an assumption like that where it is of course very possible that someone may be misdiagnosed with BiPolar when they in fact may have PANDAS, to say there is a "link between bipolar and PANDAS" is honestly just not accurate! and we do need to be careful about making such extrapolations here.

keeptrying when did she have the steroid burst? before or after the increase in tics last May? I assume the steroid burst was to help with the PANDAS symptoms or was it one of those "trial" bursts that concern me so?ie were the steroids given to try to dx the PANDAS?

Hi are you having any treatment for the OCD? especially something like Cognitive behavioral Therapy that can teach you coping skills I guess the best job is with an employer who is understanding. it is hard as I know those are few and far between, but perhaps if you get a letter from your doctor it may help? you may be able to get information and help from the OCD foundation? here are some good links http://www.latitudes.org/forums/index.php?showtopic=1963

Hi and welcome i need to get back to work but wanted to suggest our pinned threads for some help re testing http://www.latitudes.org/forums/index.php?showtopic=2459 there is also a pinned thread re finding medical help...not sure if it has anything in your area. also try just googling your area and environmental doctor and see what comes up. ask questions before setting appointments re whether they have experience with the things you are wanting checked out all the best

I always hesitate to respond on such a question because of the horrid experiences my son had with *all* of the meds he tried. So I realize full well I am biased I realize he may be an extreme case, but all I would suggest is great caution, remembering this is a developing brain and body and that some of the meds can have very long lasting side effects and are also horrid to wean off from my son was just 10 when he started exhibiting very severe tics, along with OCD. But looking back, none of his symptoms were a fraction of what the meds put him through. I agree with CP that meds have their place and I know for some people they are literal and figurative life savers. so all I urge is just be very cautious as what you may get on a med could be a lot worse than what you are experiencing without it! Bitter experience talking

Hi Royal Jelly can't really be used *as* a general multi but rather to supplement a diet rich in most of the essential vitamins and minerals etc. It is very rich in nutrients so it does give a lot of the good stuff. It has a very good level of the B's, and so we find it is a good substitute for the multi-B Complex (which my son does not tolerate at all) but my son finds he still needs his B6(as P-5P) and methylB12, and the little bit of Inositol that he also takes separately the fruit reaction could be Candida (check the useful threads pinned thread for an easy at home test) but may also be salicylate sensitivity. has your naturopath sugested trying L-carnitine for the vocal tic? It can help some people with Tourette vocals, but it is one of those trial and error amino acids so do talk to your doc before trying it.