Chemar

bumping this up related to recent Crohn's thread here

I havent read everything so forgive me if I have misundersood the first post, but my son has Crohn's, and altho yes, candida can cause flares, it is NOT IMHO the only microbe associated with Crohn's recent reading I have done seems to indicate there may even be a viral component. I have seen both rotovirus and epstein barr mentioned, as well as mycoplasma and others. So I think it is likely more complex than just a candida effect. also, Crohn's flares have not always cause a rise in OCD behavior for my son, nor a rise in tics, so we do not see a clear correlation there, which is not to say that Crohn's flares dont trigger tics and OCD, just that it doe not always follow my son controls his Crohn's primarily thru diet and supplements and is on no medications for it he has a Tourette/OCD dx with the Crohn's, but not a PANDAS one ps I just bumped up a research post I made http://www.latitudes.org/forums/index.php?showtopic=8779

Hi I would strongly suggest you also post this on our PANDAS forum http://www.latitudes.org/forums/index.php?showforum=17 it sounds to me like the ER doctor at least knew about PANDAS but that the neurologist you saw was pretty clueless!! (no surprise there...very few of them seem to know much about it!) just because your child had tics before does NOT mean he does not have PANDAS, *especially* as you have had recent positive strep kids can have TS and develop PANDAS after strep infection, just as autistic kids can sometimes also have a PANDAS dx as can kids who have transient tic disorders, or allergic tics etc etc etc....they are not mutually exclusive I really think you would benefit from the input of the PANDAS forum parents

Hi Deby we first did the home spit test for candida (found in the helpful threads post at the top of this forum) and then confirmed by the other testing as mentioned in my first post of this thread, we worked with an Integrative physician (conventional MD who has specialized in alternative medicine) and her team, who included an acupuncture therapist, nutritionist, radiogenics therapist etc) I found the info on the supps via Bonnie Grimaldi's research and other info on the web, and then took it all to out physician who, with her team, analyzed my son's test results and evaluations and helped me fine tune it all to best suit his unique needs

thanks Fixit. we have always been very diligent about probiotics and also do regular Candida "maintenance" now since the mid 90s when I first read The Yeast Syndrome so no, I dont think it is candida stuff dh likely reacted to the steroids so badly because he has Tourette Syndrome and steroids are dopaminergic, which is a tic trigger in TS I think in son's case, the fact that he reacts negatively to all meds, including all abx, is likely due to his multiple chemical sensitivity coupled with whatever unique biochemistry comes with his combined disorders. also, the important thing related to this discussion is that neither of them are dx PANDAS so lperhaps react differently too to things that may be beneficial to a PANDAS patient I only mentioned my son's tic spike after flagyl (and past reference to dh on steroid burst) as I always think it relevant to add the perspective of a TS patient in case it can be helpful to to others here who may also have that dx along with PANDAS

my son was put on flagyl for Crohn's in 2006 and had a pretty ick reaction as his tics skyrocketed, and his digestion got mega messed up. It could have been a die off reaction but it was so intense that he refused to ever take it again he has always seemed hypersensitive to most chemicals, including meds, so that may have played a part as well

hi Patty salt water as a rinse, and baking soda (bicarb) sprinkled on the toothpaste are excellent IMO also keeping the brush clean in hydrogen peroxide dilute tea tree oil is also a very good oral antiseptic, as is myrrh

many amino acids are not recommended for people with TS, and I have heard others with non specific tics not liking them either, with exception of the methionine, as well as taurine and carnitine which seem to be helpful to many, but of course individuals differ quercetin seems to be very popular as a help with lowering histamine so you may want to consider that I know many parents here also use benedryl in the evenings when their kids have need of lowered histamine we found omega3 plus ginkgo biloba very good for the ADD I guess you could try the meds suggested and see if improvement, but do be on the watch for bad side effects as we (and many others) found those more debilitating than the symptoms the drugs were prescribed for.

it has been truly amazing to see what a dedicated group of parents can do!!

yes, you will only have a record of sent PMs if you check the box to keep a copy prior to sending each member has a total allotment of 50 PMs(sent and received) so it is a good idea to download messages you want to keep and clear your box often

good to hear things are going better Mar

what natural treatments have you used Lisa? I am admittedly biased against many of these psychiatric drugs because of the truly horrible side effects that the ones we tried caused for my son (and also for my husband)

I have not heard anyone finding success with Tic Tamer altho some of the other Native Remedies have had positive reports (eg allergy ones etc) Bach's is a calming remedy and so is helpful when anxiety etc is high. One does need to be cautious if there are plant allergies, as it is made from flowers. We always keep some in the home but be careful not to over use it as then tolerance can develop and it loses effectiveness

one of our members, Caryn, has a great website with lots of GF recipes and food tips http://healthy-family.org/

the part that really caught my attention, if I am understanding it correctly, is that they felt the virus responded to the wide spectrum of antibiotics because of the all the gut bacteria also being killed off? Makes me wonder if that is why my son seems to react negatively re his Crohn's when using probiotics ie adding bacteria, albeit "good" ones? also wonder if maybe the virus "feeds" off the other microbes? so when they are gone......??? also of interest was the "toxic trigger".... anyways, we will see where this research leads, but as Crohn's is autoimmune, inflammatory and likely microbe induced....I felt this study may also be of interest to PANDAS/PITAND patients

http://www.the-scientist.com/blog/display/.../#ixzz0ro14K3Au very interesting! and

Hi try not to worry as often childhood tics resolve on their own here are some helpful threads, including ones for tests http://www.latitudes.org/forums/index.php?showtopic=2459 and here are the helpful threads on our PANDAS forum too http://www.latitudes.org/forums/index.php?showtopic=3928

That is why I have kept asking if you know if your child has a history of strep! we have a forum here for PANDAS, a condition where tics (and other neuropsychiatric symptoms) are caused by strep here are some helpful threads there for you to read more http://www.latitudes.org/forums/index.php?showtopic=3928

I am voting daily, and have a thread on NeuroTalk to encourage votes as well

yes, head shaking is a commonly recognized tic and one that many kids seem to manifest when they first start tics. I know it is disturbing to see him tic, but try as much as you are able to "ignore" and not let him know you are watching or upset by the tic...the more you focus on a tic, the more the child tries to control it, and then gets stressed when they cannot, thus increasing the tic more again. I am still wondering if your child has a history of any strep? (streptococcus infection...most often, but not always, manifesting in sore throat/fever)

there may therefore be a genetic link, ie some genetic makeup that makes him more susceptible to the things that trigger tics that rash may be a big clue. both allergies as well as infections can cause a breakout so it is worth investigating that further any history of strep infections?

Hi and welcome I know how hard it is to see something go wrong with your child! Do try to remember tho that there may well be a clear answer to what is causing this and hopefully eefective treatment to stop it a couple of questions is there a family history of tics that you are aware of? has your son had any recent vaccinations prior to this tic starting? strep or other infections? any longterm antibiotic use? checked for possible candida overgrowth? any known food or environmental allergies? have you done any recent painting, carpeting or woodwork in your home? Any known mold? New car? In the meantime, until you see the specialist and get more answers, you could try giving Epsom Salts baths (2 cups epsom salts(magnesium sulfate..available at Target, supermarkets, walmart etc) in a tub of warmest water before bed, soak 20 min) as well as a magnesium supplement like Natural Calm/Natural Vitality and see if that helps at all. Many people with tics seem to benefit from those until you are sure what is causing this, it is hard to make any other suggestions on treatments dont worry please! as that is not going to make anything better and will just add extra stress for all of you, and stress is the #1 trigger for tics! Most kids who get tics in childhood have "transient" tics that resolve on their own

so glad to hear of the improvement

Hi Hope chelation usually refers to using one substance to bind another, and is most commonly used in naturopathy to bind and eliminate heavy metals from the body we used chelation for mercury and it helped my son. he did not have any IV chelation, only chelating supplements you may find a lot more info on some of the autism sites