Chemar

PowPow, one just has to be careful though, as giving steroids to a person with TS can actually have a detrimental effect on the tics...causing a major waxing. I know of someone with TS who had steroid burst for a back injury in their 50s and tics that had been pretty much dormant since they were a teenager came back and have not subsided! So where steroids can help a PANS patient tremendously, there should always be caution and careful consideration if there is a chance of TS.

If his throat is red, it may really be a good idea to have a strep swab plus a culture done? Many kids have their tics and other symptoms ramp up when ill, though we have had some unusual anecdotal reports here of some kids whose tics actually reduce, especially when running fevers! For PANS kids, illness can really ramp up their symptoms!! There are assorted theories on why tics may increase with illness...most of them suggesting some immune system trigger. Hope your son gets over the illness quickly. Personally, I think kids should stay home from school when ill...not just to help them recover better but also not to spread those germies around to the other kids (and the teachers)

Hi we found l-carnitine helpful with vocals. Our physician suggested 500mg a day and not longer than 3 months on. Some members here have reported that vocals decreased when they removed dairy products from the diet

Welcome to the forum PGell I do have to say that from my experience (and that of some others who have posted here) sometimes a neurologist (pediatric or otherwise) can be anything but helpful....in our case, the ped neuro insisted on medications that caused my son serious harm! We found an Integrative physician far more beneficial. (MD or DO) I also diagree that TS "usually reqires Rx meds" as for many people, my son included, the types of meds (and we tried a number of them over a 1 year period) produce side effects that are often more troublesome than the TS...and in the case of some, can produce med induced psychosis, tardive dyskinesia and a host of other severe side effects. After we went through 6 months of gradual and excruciating withdrawal of the meds for my son (under careful doctor supervision) he finally turned a corner when we began the natural treatments that I have documented in my signature link. So where Rx meds and pediatric neuros may help some, they can harm others! Each person is different and so what we promote here is to fully investigate all possibilities and follow the treatment path that works best for each child. There is no one "magic bullet" for TS. Also, many kids are misdiagnosed as having TS when in fact their tics are caused by other factors, including PANS/PANDAS, allergies, toxins etc etc.....and sadly most pediatric (and other) neuros are still very far behind the curve of knowledge on these well documented cases. You really do not seem to have all the up to date facts on PANDAS either.....perhaps looking at our PANDAS forum may give you a different perspective. Also remember, PANDAS and TS are not mutually exclusive. My son's father (now in his mid 60s) also has TS, and it goes back a long way in his family. OCD has some roots in my family. My son is now in his mid 20s and did not begin to show improvement until we took him OFF the conventional treatments and started the alternative/natural ones. That was 12 years ago and he remains unmedicated and most people now do not even know he has TS. So as far as the treatments for TS. our personal experience is the exact opposite of yours, but I do agree that what works for some may not work for others and leave it at that. Wishing you and your family continued wellness and thanks for sharing your experience.

Sorry I know nothing about those.

Dr Tanya Murphy in Florida was one of the original PANDAS physicians. She is at the University of South Florida in Tampa area last I heard. I have not had contact with her for over 10 yrs so not sure what her treatment protocol is now. She used to be pediatric psychiatry & neurology, specializing in PANDAS

Hi Dedee I just want to mention that many people with TS do in fact have co-morbid conditions like OCD, generalized anxiety, ADD, ADHD etc etc so just because there are other conditions associated with the tics most certainly does not "likely rule out TS". I agree, as I posted above, that investigating possible PANS is always a wise move, but we do need to be careful not to confuse people who may well be dealing with TS.

Hi is this for oral intake or transdermal? Many of us use epsom salts (magnesium sulphate) as a transdermal remedy via baths or lotions, as magnesium appears (from research studies) to be deficient in many people with TS, plus magnesium is a relaxant, and the sulphur aids in detox.

http://www.fda.gov/Safety/MedWatch/SafetyInformation/SafetyAlertsforHumanMedicalProducts/ucm362800.htm http://www.nbcnews.com/health/fda-warns-steroids-vitamin-b-supplement-6C10765769

If someone has a dairy sensitivity then that can also cause inflammatory issues which would be a general trigger. Remember that just because someone has PANS (or TS or whatever other condition) does not mean that one should not also check for food and environmental allergies/sensitivities etc....these things are not mutually exclusive. But especially in such a young child, making sure you are investigating every avenue is so worthwhile as the longer these issues are left untreated, the worse they can become, and often the more drastic the treatment needed. Whereas catching things early on can often mean you can treat more "naturally" and effectively.

Many on the PANS forum use natural abx like Olive Leaf Extract, Coconut Oil and/or a supplement made from its lauric acid = Monolaurin, oregano oil and others. Remember that PANS symptoms are caused by inflammatory responses in the brain to the infectious agent (it is more complicated than that but that is an essential issue to treat) and so the treatments focus on eliminating the infection as well as reducing the inflammation. In many cases there is also an auto-immune component that needs to be addressed. Some use IVIG or PEX as treatment and steroids are also used....but if there is any possibility of TS, one needs to try to avoid steroids as they are contra-indicated in TS. That is why it is really best to have PANS/PANDAS evaluation done by a physician who is experienced with it, as many conventional doctors are way behind the curve of knowledge there. The Cunningham test is one of the most accurate ways to initially detect a possible PANS case. I am not saying your child has PANS, but it is really always worth at least checking imho

Hi I moved your thread direct to the PANDAS forum, as more members who can answer are here than on the New Member Forum.

I am confused...I thought in this thread you mentioned that things were much improved while you were away for 2 weeks in New York? perhaps I misread it? http://www.latitudes.org/forums/index.php?showtopic=20940&hl= Also re not being sick...you mentioned above A virus can trigger symptoms in a PANS patient as far as I know... It is my understanding that anything that impacts the immune system can cause the symptoms (eg the tics) to ramp up if the condition is PANS.... Before just doing more random bloodwork, do look into that Cunningham test info I linked for you earlier. Really pleased that you are seeing improvements though with the dairy elimination and hoping that this may well be a key to understanding why he has the tics, and that the dietary modifications will bring lasting relief.

Hi T.Anna that is such a gracious response from you....thank you. I am personally appalled that health care workers would ridicule a child under any circumstances. And as someone who had to help a child work through some very severe OCD times, despite the positive impact of CBT, I deeply sympathize with anyone who knows just how debilitating it can be, and how often one needs to pick the battles wisely...with socks ranking really low on that battle list imho. Kudos to you again for taking the high road here. And on that positive note, I am thinking perhaps we should just close your thread as you have indicated you have made your last comment here. Feel free to message me if you would like it re-opened.

Of all the food sensitivities that seem to be listed on this forum as tic triggers, dairy and gluten rank at the top (along with artificial additives............)

Hi it really is impossible to say for sure, but remember there are more potentially more causes for tics that just TS or transient tic disorders. If you read the helpful threads pinned to the top of our TS/tics board, you will find a lot of info http://www.latitudes.org/forums/index.php?showtopic=2459 It is also always a wise move to make sure that the tics are not the result of strep or some other infection, as many times this can be the case, and a lot of physicians are still ignorant about this connection. We have a PANS/PANDAS forum here as well that has info about that We do have other members here from Australia so hopefully they will be able to give you input as well.

Please look into the Cunningham test for PANDAS. There is info about it on the PANS forum http://www.latitudes.org/forums/index.php?showtopic=3928&p=159832 I am thankful the tics seem to be stabilizing

When my son was first diagnosed, I was a basket case! Don't forget, my son's tics were so severe that he injured himself from them frequently, requiring hospitalization for the injuries. But a good friend gave me some tough love and helped me realize that as stressful and upsetting as our situation was....still...my son was not terminally ill and we would get though it....and we did! hard as it was during the worst years. I also paid close attention to the wise warnings by those who knew better than I that the WORST trigger for tics is stress, and that it is horrible for a kid already confused by the tics to realize they were causing such upset for their parent. It can psychologically damage a child for life. Lack of patience and becoming easily stressed were high on my "fault" list...but my child's wellbeing was of foremost concern to me and so I learned painful lessons in how to cope. Easy? no.......but worth it? most definitely!! So please don't think I don't sympathize with you.....I do! But at the same time I would be doing both you and your child a disservice if I did not mention potential dangers when noting them! And yes, I agree it is ridiculous that kids (and adults!!) are prescribed harmful medications when there are natural alternatives. I hope the doctor is able to help...and again, at the risk of sounding like a nag....I do hope you have thoroughly investigated any possibility of PANS

Cara you recently posted that your child was doing well and then you tried a vitamin E cream and the tics came back again so it really seems to me that perhaps there was a trigger there. I agree you do need to try to find relief, but honestly, going to a state that has legal MM and giving it to a 5 year old without knowing if that could trigger serious consequences is imho not a very wise thing to do!!!! Never mind the legal implications. You could have your son removed from your custody!! It is one thing to do this under legal doctor supervision, but please think of the serious consequences otherwise! Perhaps discuss the marinol with your doctor first as there have been other reports here on its benefits. I realize you get upset when your son is ticcing ....but you have also reported a number of times of great improvement, most recently when you were on vacation .....so please don't let a waxing (maybe triggered by that vit E cream) cause you to do something you may greatly regret. I still don't know if you have investigated any possible infection connection to your son's tics? but if you have not, you really should try to see a PANS literate doctor and check!

Hi the fact that your youngest had strep/scarlet fever is a concern I would suggest you address with a PANDAS/PANS literate doctor... Our PANS forum has a lot of info on testing etc and the Cunningham test is now available in many states. Other than some infection connection, or a genetic manifestation of TS, there is also the possibility that something in your home is a tic trigger. We have had parents here whose kids had tics due to hidden mold in the home, or arsenic exuding from woodwork, formaldehyde from carpeting, lead in the old paint etc etc. Be sure to go through the "Helpful Threads" pinned to the top of this TS/tics board, as well as the one on the PANS forum

The Tourette Syndrome Association (tsa-usa.org) has research showing it's effectiveness in reducing tics. However it remains illegal in many states, and I am not sure of the rules on prescribing it for minors even in those states where it is legal, so you do need to be very careful. There are also numerous research studies that indicate that in susceptible individuals (ie not in everyone!) it can lead to schizophrenic conditions and psychosis...so notwithstanding the health benefits that have been documented, this is something that should be discussed with a reputable physician, especially regarding a young child!

No...glutathione has nothing to do with ALA (alpha liopoic acid) and many seem to have used glutathione here successfully I have no personal experience with it. I mentioned the ALA as I am shocked to see how many people talk of using it to remove mercury and assume they were not givgen the warnings our Integrative doc gave us about it! Chlorella comes as a supplement and available at most health stores. If you use it, start at a very low dose as it can cause a bit of nausea initially. Can't hurt to ask your doctor about it first though!

Hi I am a bit pushed for time right now, but do a search on heavy metal toxicity here and you will find a lot of info on how it can be a major cause of tics and other neuro problems. My son was high mercury, (believed leeched from my then many existent mercury fillings while pregnant) and we both used chlorella chelation. Be wary of ALA (alpha lipoic acid) as although it is an excellent mercury binder, it crosses the BBB and so can actually carry bound mercury into the brain! We were told it should only be used once the initial levels were mopped up in other ways. Not sure what your doctor's "usual treatment" for heavy metals is that is unavailable?? There are likely many new treatments available now. We also had acupunture and biofeedback treatment to assist in the detox process along with excellent holistic remedies called AntiTox (I forget the manufacturer now...this was almost 14 years ago!)

I have to post a very urgent caution here!! Dempstaa, IF you do in fact have Tourette Syndrome then do NOT have a "steroid burst"!! It can stimulate dopamine which in people with TS is a major tic trigger, and sometimes the results can be very long lasting with tics remaining highly elevated! I know that people who have PANDAS can benefit from steroids but there are a number of posts on our PANS/LYME forum warning that not all infections benefit from it, and in some cases it can also be detrimental. So please be very careful in just following what some may recommend when you are still in this stage of uncertainty as to what may be the root cause of your tics. I realize the advice is well intended but people who do not know about TS should be careful in making such broad statements that can actually be detrimental to someone who has Tourette Syndrome! I absolutely agree that finding a doctor who is willing to investigate fully and *then* recommend appropriate treatment is the best and also that neuroleptics are often not worth it as they have awful side effects. CBT however is a highly respected form of therapy that some are using for tics, though it is more often used for OCD etc

I have always heard 10 years for tetanus? Can you call your doctor's office and see what they suggest? My son had to have one when he entered middle school and as much as I am concerned about vaccines, it did not seem to have any negative impact on his tics.