Chemar

yikes!!!! and I thought our costs were expensive back when we were having all my son's testing done what on earth are parents doing who are uninsured or underinsured and lacking financial resources to help their kids I know we would have sold our house and everything we own to help our son back when he was in crisis! but it really troubles me how many kids are not able to get help (whether for PANDAS or any illness) because of these high costs. all the more need IMHO for real and meaningful healthcare reform that especially takes care of kids! anyway dont want to go off at a tangent but I am truly shocked by that cost!

thanks for that clarification LLM as an aside, it is a long time since we were at the developmental pediatrician and neuropsychs, but do they cost more than $400 nowadays? My understanding is that is the cost of the CamKinase test.

thanks for that clarification as well SF Mom which will hopefully also reassure those who are confused on this

thanks for reassuring parents on that side of it ajcire. that has always been my understanding, that it is still research but showing encouraging results and providing an additional piece of valuable information in the overall case history of the patient

I am hearing from some parents who are very alarmed by this, as they say they were urged by some members here on the forum that they should have the Cunningham/CamKinase testing done as it was the only "reliable" indicator of PANDAS. As it is a costly test, they are now very concerned that they have both wasted their money as well as not received reliable test results Could we get some clarification from both sides of this issue please? as understandably some people are now confused

i dont know why it works...havent ever checked into that. it was recommended by our physician

Hi Kevin we used the l-carnitine initially for about a month my son had been dealing with a loud shrieking tic, and it took it away pretty quickly he has never since had that kind of intense vocal tic (thankfully!) he used it a few more times that year when other vocals became a bother to him. Then, as his vocals were so mild and not affecting him in public much, he stopped using it for a couple of years in 2006 he developed a loud UH around the time of stress from his then undiagnosed Crohn;s he tried l-carnitine again and did not like the reaction of edgy/spacy mood reaction it gave him that time and so he has never used it again

honestly done know the effect of fumarate (fumaric acid) this is the l-carnitine we used http://www.iherb.com/Now-Foods-L-Carnitine...psules/300?at=0

ok so I am understanding then that the NAET takes away a specific tic each time he is treated, but it doesnt stop another tic from returning if something triggers it, yes? just making sure I understand properly sounds similar to what my son experiences after a visit to our acupuncture therapist who also does the reflexology and biofeedback. When my son's condition was still very severe and just after we had withdrawn the meds and started the alternative treatments, my son was having radiogenics which I think works on a similar principle to NAET. the radiogenics practitioner would then send a detailed report to the acupuncture therapist, who would then do very specific biofeedback, reflexology and acupuncture, and my son would have resultant waning of tics, OCD etc following it never "cured" him or totally removed all his tics, but was amazing at targeting specific tics or OCD issues

Caryn, thank you so much for posting that! I think I will add that Pasteur quote to my signature as I agree with Beachamp wholeheartedly. I know for a fact that my son's careful diet and supplements, coupled with the alternative therapies like acupuncture, biofeedback etc have worked together to make his overall system less susceptible to infections and his immune system is good, despite the autoimmune status of Crohn's He seldom gets even colds etc and if he didnt have the mild TS stuff plus the Crohn's dx, one would describe him as in excellent health!

waxing and waning refers to the coming and going of tics, including the frequency and intensity fo example, someone may have eye blinking occurring continuously throughout the day for a number of days and then it will taper off to less blinks each day or totally go away, but a new tic will arise (wax) in its place usually people who have TS have many and varied tics, both motor and vocal, that wax and wane. They rarely have a totally tic free day a very comprehensive site to read up on TS is http:www.tourettesyndrome.net

Hi Patty are you saying that NAET has totally eliminated *all* your son's tics? including the ones that resulted after the retainer? Or is it more that it helps with a specific tic at the time it manifests, but that other tics still come?

mars, you will notice that we talk a lot here about "triggers" for tics, and food sensitivity is one of them whether that the person has genes predisposed to TS, or something else that results in tics or mood/behavior changes after offending triggers, the removal of the trigger usually results in either an improvement or a remission of the symptoms. With true TS, tics still come and go (waxing and waning) whether there are obvious triggers or not. But removing known triggers seems to reduce the intensity and frequency of the waxing we have learned over the years to just recognize the triggers and avoid them as much as possible. everytime my son has been lax, it really hasnt been worth the resultant waxing here is an article on the main Latitudes website that was related to an informal survey done here some years back, to discover some common tic triggers. the survey results are at the bottom of the article http://www.latitudes.org/articles/finding_triggers.htm

oh yes,absolutely! TS tics can be triggered by a variety of things, including foods! my son has TS and artificial food additives are a big tic trigger for him

Hi and welcome yes, we have a lot of info here related to food intolerance and tics usually, if the tics totally go away when you eliminate the food, it isnt likely to be TS, but more that the food reactivity is producing the symptoms that mimic TS we have some helpful threads compiled here and amongst them you will also find info re food elimiation http://www.latitudes.org/forums/index.php?showtopic=2459 most conventional doctors sadly dont recognize that some foods can trigger neurological symptoms in susceptible individuals, so dont be surprised if they give you the "quack stuff" reaction

I honestly dont know if the AB interferes with the testing may be something to ask on Lymenet as they really know their Lyme stuff there

fixit if you have removed ticks from your son and he may ever have been bitten by them then it is really a good idea to have Lyme testing done we have a family at our church who have all been thru incredible health woes over the years, especially the daughter, who was dx with epilepsy and a whole host of other stuff turns out they all have Lyme Disease likely dating from when they lived in the northeast http://www.lymenet.org/ is one of the best websites covering all things related to Lyme Disease and there is also some helpful info archived at NeuroTalk http://neurotalk.psychcentral.com/forum91.html

got it! and replied lol re the cats...I have 4 of the darlin's and they loooove to walk on the keyboard too

yes, crohn's is autoimmune, and there are some physicians who believe it might be linked to mycoplasma, altho many other theories abound too I am curious re the treatment suggested to you...if not something you want to post about my PM box is open my son keeps his under control with careful diet and specific anti-inflammatory, antimicrobial and GIT healing supplements as well as trying to keep stress as low as possible. he takes no meds for it (or for his TS/OCD etc) we have actually discovered that stress and exhaustion are the #1 triggers for crohn's flares in him

sadly no, it seems not many conventional docs accept that candida overgrowth of the GIT can cause significant health probs, and many also do not tell patients to also take probiotics 2-3 hrs after antibiotics to restore the "good" GIT flora that the antibiotics tend to wipe out I learned about probiotics as a little girl, from my grandma, altho she didnt call them that lol. i am in my 50s. she used to make homemade kefir and yoghurt and insist that we had it twice daily "for the good of your stomach". i didnt mind as i loved it those are still the two probiotics that our family uses, altho interestingly my son has found kefir too strong for his crohn's condition, so he sticks to Stoneyfield farms plain organic yoghurt.

we have had some anecdotal reports on the TS/tics forum of kids who were exhibiting tics and other neuro issues, who were found to have candida albicans overgrowth Someone also linked this report http://www.nutritioninstitute.com/Tourettes_Syndrome.html and I know there are a number of other interesting articles, just havent had time to go back and find them I know we saw significant improvement in my son's tics and general mood after we had done "yeast busting" diet and supps. it did not result in remission of his symptoms, like some have reported, but it was a noticeable improvement, especially in his moods I am not sure how much of a role candida may or may not play in the manifestation of PANDAS symptoms, but it does appear from the anecdotal reports that it can act as a neurological irritant in some people

yes, IF these are TS related tics then Epsom Salts baths should help 2 cups epsom salts in a tub of warmest water before bed. soak for 20 minutes. do not rinse off

SF mom you are again making assumptions without knowing the facts behind my comments this isnt the first time you have been very aggressive in your response to me but it just isnt the way we do things here, so I will not let this important thread be derailed further again, my purpose in posting to the thread was to caution anyone being advised to "try" a steroid burst that they should be very careful in case their child has TS as steroids may cause waxing of Tourette tics

excuse me but I did not name any doctors so it is a bit presumptious for you to try to assume which doctors I am talking about. There are not only your doctors trying to diagnose or treat PANDAS please do note that some parents do also contact me about their experiences so I am not just saying this to be contrary. Again a bit presumptious to declare my info "wrong" when you have no idea where it is coming from it is risky to give steroids to someone who may have TS. And I have read messages here that it may be happening. no need to take it personally. it is surely important to alert people of the potential problems.

I do stand by my comment that it alarms me to read of the steroid burst being given to someone as a diagnostic method to determine if PANDAS, when they may in fact have eg TS or Lyme Disease . I understand the need to treat PANDAS aggressively in many cases, but at the same time one has to consider the fact that giving a steroid burst to someone with TS could have long term detrimental effects. That is the point I am making...not that the steroid burst isnt a valuable treatment for PANDAS....just that it is IMHO risky to use as a diagnostic tool without first checking the patient history very carefully just in case.