Chemar

Hi Dee you may want to ask this on the PANDAS board as well as the parents there are likely tohave more answers for you

again my question would be were these classified with "Tourette" possibly misdx when in fact they have PANDAS related tics rather than actual TS? as far as we know my son has never ever had strep.

this is the source http://www.raysahelian.com/ he has a lot of info that is very interesting IMO and the TS page itself had some info, some links and some patient anecdotal reports. perhaps not a scientific paper, but interesting nonetheless and much on there is sure not "hokey" IMHO after the recent scandal related to the phoney pharma/research stuff and Dr Scott Reuben, who now admits it was false results that he made up in research for Pfizer etc, along with other publishing fraud allegations........well........I dont always believe everything I read in published medical reports ...sometimes IMO there is often more of a clue to in many anecdotal reports that show a clear trend on something than a "peer reviewed published paper" I used to work in medical research....I saw how some people got their results! ok off my soap box

I sure agree that the eradication of candida and other stuff that messes with the system plus adopting correct diet is worth it Caryn I assumed Guy was referring to the nystatin as "cure" for TS as "hokey" rather than that physician and much of what is documented there. I have absolute belief that getting to the root problems that trigger tics, which so often is infection/toxin, immune or allergen related, is most definitely worth the hard work! My son would agree with yours. He has the gene for TS and so who knows, he may have tics for the rest of his life, but that is ok with us and him, as they are no longer the tics that overshadowed all else in his life. an eye blink or a shoulder shrug or even an "UH!" etc are not things we even notice anymore after having lived through some of the scariest and disabling (socially and physically!) tics even on meds, in fact at worst on meds...... And we have a careful diet and correct supplementation to thank for the good place he has been in for years now...... (plus sooo much answered prayer and support )

I posted this on the ADHD forum too but as I know many kids here also have comorbid ADD/ADHD I thought it may be of interest here too to read more please go to http://www.chron.com/disp/story.mpl/nation/6345245.html

to read more please go to http://www.chron.com/disp/story.mpl/nation/6345245.html

sounds like a child who had candida infection induced tics. we have had members here whose kids stopped ticcing after they did candida elimination but those kids did not have TS. Remember sometimes kids who are ticcing for other reasons are misdiagnosed with TS sorry but Nystatin is not a "cure" for TS. if it was a "cure" we would have many "cured" TSers already as it has been widely used by many nystatin is an antifungal drug and not a natural treatment btw

I dont have research links, but will try to get them from mrsD or ask her to post about the research...but apparently there is some suggestion from recent studies that antibiotics *MAY* have negative effects on cell mitochondria. I have emphasized the *may* as I dont want to ignite panic. These are early studies I believe. I will try to get the info asap yes, samE is adenosyl methionine... my son has used it as well as regular methionine for OCD/mood. he actually prefers the regular methionine and as it is so very much lower priced, we stick with that and yes, samE is supposed to be good for liver as well http://healthlibrary.epnet.com/GetContent....;chunkiid=21460 another excellent supp for liver is Milk Thistle aka silymarin http://healthlibrary.epnet.com/GetContent....;chunkiid=21817

thanks Guy, I had a feeling it was considered atypical I have to say zyprexa was the worst of the worst in what it did to my son...just 2 doses and we had him in hospital it was so bad. the only good thing was that it was "the final straw" after that awful year on meds and was what brought about the decision to get him off the drugs totally I know there are class action lawsuits related to zyprexa problems and I believe there are also now FDA warnings on it

Hi Kim I am not seeing grapefruit seed extract in candida clear ingredient list (I know that grapefruit is contraindicated with many meds tho) Candida Clear has caprylic acid (magnesium caprylate), Pau D'Arco, BlackWalnut, oregano oil as main ingredients and others are cellulose, rice flour, gum arabic, garlic, olive leaf, cats claw root, wormwood, mag stearate Melanie, as with all supplements...if taking any medications one should always check with the prescribing doctor as to whether it is safe to take them together

hi Melanie you can treat "yeast" candida without meds there are good supplements that help along with a careful diet good book is "the Yeast syndrome" by Walker & Trowbridge we like Candida Clear supplement by NOW

Hi Jodi he felt the improvement so quickly from the supps that he would just get 'em down the shake he is now on is a powder multivitamin/multimineral by Jarrow and he mixes it with his milk and fruit to make a smoothie. He was using a soy protein shake before by Genisoy, but we dont want him getting maltodextrin and that has it in. The Jarrow Multi-food seems pure and works well he still takes the other essential supps (eg magnesium, some of the Bs, flaxseed oil separate) but finds the multi shake a great way to start the day and get the basic things in...he mixes some of his other supps in with the shake and adds his taurine to his natural calm in the evenings. rest of the supps he just swallows

Hi Guy I am not sure if zyprexa is classified as new or old but it was when my son was given it that the TD became very evident... after the Haldol was showing signs of TD. It was almost like the zyprexa switched it "on" full force...tongue lolling and other scary stuff.

welcome Jodi and our other newcomers Jodi, as others have mentioned, I wouldnt hold out too much hope on a neuro that thinks outside of the texbook (tics=TS=drugs) Hopefully you will find one that is different, but the overall experience here is not too positive most of us have found that seeing doctors who have educated themselves in medicine that doesnt just rely on drugs to suppress symptoms is better. They try to find the causes and work on bringing about overall wellness these include Integrative, DAN, environmental, naturopathic etc physicians if you havent seen improvements with those things you have tried, you may want to consider whether your child has PANDAS induced tics/OCD caused by strep. Also parents here who saw the tics start after vaccines. I see you have checked into food allergens, but what of environmental? we have had reports of kids affected by everything from dustmite to mold. hope the appt with the neuro goes ok and that they may be one of the rare gems who will help you find real solutions -------------------------- CZL just an FYI that haldol CAUSES the movement disorders, especially Tardive Dyskinesia. I am thankful that altho my son was showing symptoms of it, yet after being off the drugs for some time we did see it improve and so even that "irreversible" got better ---------------------------- hi natanddan1 I posted a response on your intro thread below

Hi and welcome most of us here have pretty much "given up" on conventional doctors and chosen to pursue alternative health plans, many with great success I did tho just want to mention that if your son has Tourette Syndrome, then expecting him to be able to "control" the tics is unrealistic. The more that people with TS try to suppress their tics, the more they need to tic. It is like shaking a soda with the top still on...when you eventually open it....whooooosh!! I would suggest you spend some time reading here as there are many other causes of tics apart from Tourettes. Often conventional docs are not clued up on all this. Most of us see physicians who are, or who at least check into what we bring them and help us implement these strategies if you take a look at the link in my signature here you will see the treatments that helped my son go from severe and disabling TS to now having very mild tics I knowour other members will also respond with the things they have learned to help their kids all the best

sounds like you are doing so many good things for him Melanie I hope the DAN doctor will be able to help more and bring relief

my goodness what an insensitive doctor ((((((((((((((Melanie)))))))))))))))) if your child has tourette syndrome then yes, there is no current "cure"...... but so many kids, including my son, do show marked improvement with a variety of treatments, and many people do find that as they grow out of the teen years, their tics get so much less or even seem to stop. honestly my son's tics and OCD/mood issues were at their very worst when he was on the meds we did not see the full benefits of supplementing and dietary changes until the drugs were out of his system if he already has a good DAN doctor I am puzzled why you are still going to the other one? does your child have a clear TS diagnosis? has he been checked for PANDAS, food allergies etc? forgive me if you have already posted these things as I sometimes struggle to remember each member's history here. there is a level of "acceptance" that needs to come with a TS diagnosis, in that yes, it is possible that tics will not ever totally go away. But that is not the same as accepting a SEVERE diagnosis....my son is living proof that things can get much much better. when he was 10-11 yo his TS/OCD ruled his life and really did "disable" him....withing a few months of starting the natural treatments after weaning him off the meds he showed such a major improvement that many people were astounded at how much better he was and now, tho he still tics, yet some people meeting him for the first time dont even know he has a tic disorder. the neurologist proclaimed all kinds of doom and gloom when I informed him that another doc was helping us wean my son off the meds..............sure proved him wrong I really hope you will maybe explore the options with the DAN doc more do be encouraged Melanie:) there is always hope

Hi Deanna so sorry all this is happening I really recommend you look at Bonnie's site to get an idea of the dose recommendations there....it's nigh impossible for any of us to be sure of correct doses as people get these in from various sources and have unique biochemistry/metabolism. we were told to take around 400mg TOTAL supplemental magnesium but that may vary with individuals. also because your child is also on clonidine that brings in other variables. My son takes his multi shake mix ( Jarrow Multi Food Powder) in the mornings and has natural calm at night and uses frequent epsom salts (warm soaked cloth, or cream, or foot bath or full soak) when he feels a waxing mode do be careful with amino acids while on meds too. Bonnie has some info on her site about which aminos to avoid I am hearing more and more that taking magnesium at the same time as calcium is possibly not a good idea and Kim posted something recently too that the times for the two supps should be separated. I do hope things stabilize soon.

Deanna some kids are also allergic to soy it could be the addition of the soy you mentioned above

I believe it is suggested 500mg per day Dee but best check with a doctor or refer to Bonnie Grimaldi's site to see what she recommends at http://www.bonniegr.com (look under products where you will find her mag taurate)

not sure yet if I will be able to go my husband is not well and I am alone running our small business so may not be able to take the time off I would sure love to be there tho

Hi Dee altho, as samsmom points out, some may not react well to it, yet many do benefit from it I think overall the majority of anecdotal reports I have seen is it is beneficial for people with TS and Bonnie Grimaldi also sells magnesium taurate as part of her BonTech supps for TS range http://www.bonniegr.com my son has done well on taurine

Hi Carolyn the TSA would be best to give advice on this as you need to choose with great care to be sure you get the full coverage. phone number is on the website http://www.tsa-usa.org hope you and the little one are doing great

Deanna as far as I know it is advised to do the blood titres AS WELL AS a throat culture(not just the rapid throat swab test) the PANDAS parents know more on this tho

absolutely yes! so many conventional doctors dismiss PANDAS & PITANDS as "not enough evidence etc" when honestly, it is all around them!! Kids with these neuro issues increasing in alarming numbers and many related to microbes, not just the strep in PANDAS. I am alarmed at how much untreated Lyme Disease is being misdx so often too it seems they said the same re the vaccine-autism connection and now look at the court cases being won by parents ! but yes, checking whether PANDAS is a good step if child meets the criteria not sure if you have been to our PANDAS forum but there is a lot of good info there, as well as in the search archives on this forum too. The PANDAS forum was split off recently as more and more parents found us who were desperately looking for answers other than the one that doctor gave you Deanna how I wish they would truly educate themselves and think outside of their outdated textbooks Most of all listen to the info their patients bring them and at least investigate!! ok off my soapbox. lol I get very irked by doctors dismissing things they know little about. here is the link to the PANDAS forum http://www.latitudes.org/forums/index.php?showforum=17