Chemar

hi Owen'sMom and welcome to Latitudes I will try to answer your questions and hope others will also give their input firstly, working with a doctor who doesnt know anything about tics/tourettes will be a very frustrating experience! It may be wise to start a search for a different doc and yes, undiagnosed/treated strep most certainly can point to PANDAS. Only blood tests showing strep antibodies can indicate whether this is the case although we dont deal with food allergies with my son, yet I know a little bit and one can have food allergy without necessarily having GI/rash issues, although GI issues are common when allergic to a food re Bonnie's supplements: some people do wonderfully on them and others not so if after 3 months you are not seeing and improvement then either they are not the right blend for your son's needs OR some underlying issues are preventing them from working properly (eg Candida infection, heavy metal toxicity, PANDAS, pyroluria etc etc also a word on fish oil: it is by far the best source of Omega3 fatty acids which are proven to be essential not only for general health but specifically for neurological conditions however some people with TS do not tolerate fishoil well (even tho they can eat fish without problems) if sensitivity to fishoil is noticed, then flaxseed oil is the next best choice Lastly, if your son's tic is not bothering him, the least attention to it is best! That doesnt mean it isnt a good idea to optimize his diet and health...rather just to do it in ways that dont cause him even more stress than the tic does! I hope that has helped some do keep asking any questions you have and we will try to help as possible

i think it is also important to distinguish stimming from OCD induced tics and tic induced OCD

bumping up for Nancy

i think Ronna used Keflex for a while for her son, but since switching to prophylactic zithromax, she has seen an enormous improvement I also believe Alison has found the azithromycin/zithromax best so far for her child I really do think tho that dosing should be done under physician supervision and carefully, as with antibiotics one shouldnt try to guess doseage

Pam do you have a Tourette Syndrome diagnosis for your son? If so, I would urge you to go for an IEP or 504plan which legally binds the school to classify your child "Other Health Impaired" in terms of accomodations needed, and thereby does not allow wiggle room for teachers like the pre-K one. They HAVE to make the general accomodations that you as his parents, as well as his healthcare providers recommend, along with any educational accommodations needed as determined by an education psychologist (private or within the school system). My son got his IEP in private school K5 and continued with it till he went to public school in 7th grade, at which time we switched to a 504 plan as it better suited his needs then and thru now in high school It is never to early to advocate for your child at school! here is a link to the TSA announcement regarding the legislation to protect kids with TS in the school system http://www.tsa-usa.org/news/TOURETTEOHI0806.htm

absolutely agreed! thanks for posting to remind all to add their voice Carolyn...sometimes it is that one extra name that tips the balance!

itsme the best way to restore gut flora is with kefir and natural yoghurt (like Stoneyfield farms) or with probiotic supplements antioxidant rich food and supplements are excellent for the immune system and extract of Uno de Gato (a herbal product aka cats claw) is receiving much attention for its superior immuno boosting function

...........and the bees' immune system is likely being compromised by all the pesticides and chemical fertilizers! Poor bees!! Kim, I agree, that second part is puzzling and even more reason to avoid genetically engineered crops huh

welcome Caryn yes, Kim truly is amazing at the information she finds, isnt she My son reacts very dramatically with tartrazine/yellow5 and also with red40.....his tics escalate and his OCD rises too

Hi Deanna NEEM is frequently recommended as a repellent and taking vitamin B1 is supposed to make one's blood distasteful to mosquitoes I make up a spray by using water and a number of pure essential oils. It seems to keep the mosquitoes from biting us and sure smells good too

The hardest but most important lesson I learned in our TS journey was that my focus on and obsession with my son's tics was very detrimental to him I too am a "fix it" personality..........but I had to train myself to work on ways to improve things for my son very much in a "behind the scenes" way I have shared before that my focus on a tic that I found very scary actually IMO caused it to escalate so that my son was hospitalized. That was in the beginning when he had just started the meds and I do know now that a lot of what happened then was medication induced psychosis. However, my role in trying to find ways to stop that particular tic and its escalation was a very dramatic wake up call to me on what my son had been telling me from the start.....that his tics bothered me more than they did him and that my attention to them made it worse for him. That was back in early 2000, and I truly do thank God for enabling me to yield my son fully to His care after that. It was a rollercoaster for a while, but as I practiced the self discipline needed to accept that my son had Tourette Syndrome and that he could not control his motor or vocal tics, nor his OCD...so I took the first step in making things better for both of us. So, when I harp on trying to urge parents here to adopt a more accepting attitude toward their children's tics, it isnt because I dont understand where you are at. I understand painfully well! But I understand even more what it is like for the child who has the tics and who has to additionally carry the burden that their tics are causing their parent so much worry and yes, sometimes even irritation As parents we HAVE to learn to do all we can to improve the quality of life for our kids who tic, BUT we have to do it in such a way that doesnt cause the child even more stress. Easy? NO WAY! but with God's help, we are able to do it

Interesting discussion although I have no experiential or expert opinion on soy and TS/tics, I would urge again to consider the unique biochemistry & metabolism of the INDIVIDUAL and also that there are VERY differing opinions by highly regarded medical professionals when it comes to soy. (eg Dr Weil=pro-soy and Dr Mercola=anti-soy) The only soy product I use at home is Tamari sauce, but my son's absolute most favorite food is Japanese and when we do go out to eat we tend to choose one of our favorite and trusted(for good ingredients) Japanese restaurants...both hibachi and traditional. My son LOVES miso soup and usually has at least two bowls of it when we eat there, and I have never once noticed an increase in tics from it....if anything, the opposite. He has always said (and I agree for myself) that miso soup gives him a feeling of goodness and health, and it is pure soy with a bit of kelp and scallion added anyway..........that is in no way comparable to the crux of this discussion, which is primarily related to infant soy formula. There I can see why an attitude of caution is needed (but then I have that feeling re all infant formulae)!

Hi Leigh as I explained in my PM, my son used serotonin boosting supplements like 5HTP, Inositol, methionine as well as having Cognitive Behavioral therapy we also doscovered that for him, as for many others, artificial food additives are major triggers for OCD, especially food coloring, sweeteners like Nutrasweet(aspartame) and Splenda(sucralose) and also MSG(monosodium glutamate) and high fructose corn syrup He did try medication for a year (Luvox) but it actually made things worse, not better

welcome to Latitudes, Teresa Your son may well have allergies in addition to TS tics. many of our members can attest that the two can frequently go together and that an allergic cough or sniffle can become a tic. Especially if your son has this flare up of tics in the spring, that is another indication that allergies well may be a tic trigger for him too also, if you have been carrying strep throat, your son may also have strep, albeit not manifesting as a sore throat. I would highly recommend that you start reading up here on PANDAS, which is an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. Kids who have tics related to PANDAS frequently show no sign of strep infection, yet when blood tests are done for strep antibodies, they are sky high I am glad you have ordered Sheila's book, tho puzzled as to why you would be skeptical, especially if you have been reading here. Beginning natural treatments almost 7 years ago was life changing for my son, and I volunteer my time here freely to help others BECAUSE of the fact that the natural treatments WORKED! (we had tried medications for a year with disastrous results)

Hi Leigh I dont have OCD but my son does The Cognitive Behavioral Therapy done by a trained and qualified psychologist was by far the most helpful to him, but he also needed to take the supplements that helped to increase his serotonin levels, and be careful not to have artificial foods in his diet

Hi Leigh sure sounds like OCD I sent you a PM reply

Hi Kim I used no soy during pregnancy, and also no formula of any kind after I have noticed the deep divide about soy, with some healthcare professionals (eg Dr Weil) recommending it and others (eg Dr Mercola) strongly suggesting to avoid it

I know we often discuss the detrimental effect of mercury on health here, and so I thought you may be interested in this discussion taking place at NeuroTalk on the subject http://neurotalk.psychcentral.com/showthread.php?t=17498

welcome Mountaineer1966 and thanks so much for sharing your experience. I hope you will post more. I know all too well what Haldol did to my son in just one year so I can only imagine what 15 years of it were like for you so glad you began a natural approach and have reaped the positive benefits!

hi Mike those with experience will be able to answer you re antibiotic doseage but I can tell you that YES it makes a big difference as to what timing you allow between anti and probiotics the antibiotics kill ALL microbes, good and bad and so they deplete the healthy helpful microbes that normally live in the GIT (hence the overgrowth of the fungal Candida(yeast) with prolonged use of antibitotics if you give the probiotic too close to the antibiotic, the anti simply destroys the pro there needs to be at least three hours after antibiotic before you give the probiotic

if you test too soon after the zithromax, you may get a false negative Ronna & Alison are best to answer this yes, it is quite alarming how few doctors know of or understand about PANDAS

"brightness" has nothing to do with needing an IEP or plan 504 my son is a straight A student on the high honor role and with multiple extra curricular achievements including debate team most people with Tourette Syndrome have extraordinarily high IQ and abilities After personal experience in both private and public schools where, nomatter how helpful and kind they are, there are occasions when you bump up against either a teacher, or some other situation where having legislation backing you up in the form of an IEP or a 504 plan is essential to obtain what is needed to accomodate your child. This extends all the way thru SAT tests in highschool where a child with tics could get thrown out of the room for making noises when having vocal tics for example, unless they had the backup of one of those An IEP is an Individualised Education Plan and pertains mainly to academics whereas the 504 plan caters more to things like accomodations needed for special circumstances, which includes tics. here is the link to the article about the legislation enforcing "Other Health Impaired" status on the Tourette Syndrome Association webpage http://www.tsa-usa.org/news/TOURETTEOHI0806.htm

welcome to Latitudes/ACN, JMT we have a pinned thread above with advice on finding medical help http://www.latitudes.org/forums/index.php?showtopic=565 Environmental docs are used by some, while most use Integrative Docs and many use DAN docs. Homeopaths, naturopaths and DO docs are also often helpful, depending on the route of treatment you want to follow

just to add that if the child doesnt qualify for an IEP for any reason (which should NOT be the case.....) or if the parent or child would prefer, then a 504 PLAN is very very helpful and carries the same binding legislation as an IEP !

Hi I dont know which of the alternative systems are best........but have heard about bromination?? which I think is what hot-tubs use?? Dr Mercola is usually spot on with things and so it is worth investigating his recommendations my son has such a severe tic response to chlorine (also gives him allergic hives!) that he hasnt been in chlorinated water for many years now we also use shower/faucet filters for this, and drink only water without chlorine, and I use no bleach products in the home