kim

mommy007, Thanks for posting that. When my 14 yr. old got a mild case of suspected poison ivy, I almost had a fit, when the Dr. wanted to give him a steroid "burst." This was on his face, and was not causing his eyes to swell shut or anything. The only reason I took him in, was because I didn't know what it was. I thought giving him a steroid, was totally unnecessary. We never did fill the prescription. I think the article Chemar posted regarding PITANDS mentions improvement confirmed with steroid use? His minimal tics, at this point, do seem more illness related, than a connection to things like diet, although, hard to say what part that plays in Alison's full bucket analogy. Anyway, I thought the information you shared was interesting. Kim

Faith, I want to say, right off here, I am not trying to make any case for or against the use of Actos for your son. This is what I suspect, and realize, I have ZERO medical background, I just read a lot . After you read this, I will perfectly understand, if you want to add me to your "ignore poster list." but let's try it anyway! I wonder if any Pandas Moms or anyone else can comment on whether they think this study is specifically looking at a PANDAS subset? The sentence about common infections, are they talking specifically Strep? http://www.ncbi.nlm.nih.gov/entrez/query.f...p;dopt=Abstract Increased serum levels of interleukin-12 and tumor necrosis factor-alpha in Tourette's syndrome.Leckman JF, Katsovich L, Kawikova I, Lin H, Zhang H, Kronig H, Morshed S, Parveen S, Grantz H, Lombroso PJ, King RA. Child Study Center, Yale University School of Medicine, New Haven, CT 06520-7900, USA. james.leckman@yale.edu Now this part gets confusing in my mind. It looks to me, like Acto's is suspected to be helpful where autoimmune disease or inflammation (how closely are autoimmune and inflammation related?) are thought to be a problem. The cellular and humoral immune system, and the possibility of an overactive TH2 response (humoral..known to cause inflammation ie allergies, asthma etc.)may be something your Dr. is looking at. I'm sure, he has a lot of test results, and he may be basing the use of Actos on some marker, that indicates inflammation? Maybe he was hoping that the supplement plan that he has your son on, would straighten things out. Now he may be looking at trying to control symptoms, by reducing suspected inflammation? That is the question, I would ask him. There are many natural substances that can do that too. Here is a published study on the use of Actos, by your Dr. B. Small study, looks pretty PANDAs specific to me? http://www.pubmedcentral.nih.gov/articlere...tid=1781426#B42 Effect of pioglitazone treatment on behavioral symptoms in autistic children..Boris Since your son tested positive to the MTHFR mutation, I'm sure that is playing into what he feels may be helpful also. The bottom line is, do you trust this Dr? These decisions, are so hard. We are not scientists, and these things are so complex. If I haven't confused you enough already, read this. Maybe you can comment, on what you see in your son, if anything, that relates to any of this. This is probaably not a great source of info, but it is quite simply written. Pathogen defense mechanisms. When an immature immune cell is exposed to a virus, cancer, yeast, or intracellular bacteria (for example mycoplasma or chlamydia pneumonia), a Th1 response should be initiated. Viruses, especially herpes viruses such as EBV, CMV or HHV6, make proteins that mimic a particular cytokine. By this means the virus deceives the immune system into thinking that the threat is not coming from a virus. The immune system counters with too little of a Th1 response, the virus remains concealed and the infection becomes active or chronic. It is now thought that many, if not most, pathogens have this defensive ability. Immune system imbalance. In the above example, the virus has increased its chances of survival by diverting an immune system which is out of balance. It would have been able to respond more accurately if it were healthier. Immune system health is influenced by how we eat and think, our exposure to chemicals and our genetic heritage. There are many natural agents available to help restore balance in an underactive Th1 arm. These include: Omega-3 fatty acids, monounsaturated fats found in olive and hazelnut oils, vitamin A cod liver oil, l-Glutamine, Silica, digestive enzymes, friendly intestinal flora or soil based organisms (SBOs), ginseng (Red Korean or concentrated Siberian Ginseng extract), chlorella (spirulina and some other sea vegetables may have similar benefits), thyroid hormones, garlic (raw or aged extract), l-Glutathione (or products that raise levels), DHEA or AED (androstendiol), UV-A light, vitamin E, transfer factor (antigen specific) - protein immunomodulators extracted from colostrum, colostrum, low dose naltrexone, IP6, lentinian and certain other mushrooms, Thymus extracts, licorice root, dong quai, beta 1,3-glucan, noni, neem, gingko biloba, exercise, water (to aid detoxification), a positive attitude and prayer, the ability to forgive and be compassionate, and having long-term goals. Factors that induce Th2 cytokines and suppress cell-mediated immunity. Processed, heated vegetable oils high in trans-fatty acids and linoleic acid (safflower, soy, canola, corn and sunflower), glucose (white sugar), asbestos, lead, mercury and other heavy metals, pesticides, air and water pollutants, progesterone, prednisone, morphine, tobacco, cortisol (in high doses), HIV, candida albicans, HCV, E coli and many other pathogens, continuous stress, thalidomide, UV-B light, pregnancy, melatonin (conflicting research suggests that high levels induce Th2 cytokines while very small amounts induce Th1 cytokines), alcohol (animals studies show that ethanol definitely suppresses Th1 cytokines and induces Th2; beer was not tested and there are some indications it may help), streptococcus thermophilis (sometimes found in yoghurt), candidiasis, circulating immune complexes (CICs - caused by a combination of leaky gut syndrome and poor digestion of proteins due to a lack or HCl and digestive enzymes), sedentary lifestyle, negative attitudes, low body temperature, acid saliva pH, chronic insomnia, inability to dream, weight lifting, and steroids (for muscle gain). I just want to stress, that I don't understand all of this, by a long shot. I'm only trying to give you some info. to look at, that may give you some idea's on questions for your Dr.

Faith, I found the statement about bacteria increasing the breakdown of tryptophan confusing too. I can see where it applies to PANDAS without a problem, but this does seem to raise more questions than it answers, in regards to TS. If Dr. Comings found high kynurenine levels in patients with TS (would like to find that, and see how many people were studied) then it seems to me, that this would apply regardless. I guess the question is, are the kynurenine levels elevated in TS for a different reason or not (presence of bacteria)? I think the thing that is really important here, is to closely observe the effects any particular supplement is having, and realize that the doses may have a lot of variables from individual to individual. The state of the body at the time the supplement is started can be important too, (condition of the gut) seems to me. Kim I"ll get back to you about the enzymes (yes we use them) and the 5HTP, when I have a little more time.

This might be helpful http://special-needs.adoptionblogs.com/web...-boosting-actos I have read of Actos use on the autism sites. If you goggle actos+inflammation or actos+myelin, you can get more info.

removed double post

Faith and All/PANDAS Mom's too, I have repeatedly found much of Dr. Amy Yasko's research/approach to treatment of neuro. conditions, to make so much sense. I am also fascinated and hopeful, that the genetic testing that some are finding beneficial will provide help for TS/PANDA/PITANDS families too. Faith, this might pertain to your son, and give PANDAS Mom's some info. too First, this is an excerpt from another article that Chemar posted, not long ago. http://au.geocities.com/jones_kacm/chem.htm Now these are a few excerpts from a post by Dr. Amy; http://www.autismanswer.com/forum/viewtopic.php?t=2938 and and I want to add, that my boys had a very hyper reaction to vit. B. I gave my youngest son, straight vit B as a very first supplement (along with 2 others). His facial tics, did decrease, but he was hyper to the point, that he was even laughing about it. My oldest son's heart beat, got rapid, when we got up to about 12 of Bonnie's vitamins. He could not tolerate any more than about 12. Maybe they would tolerate more now, not sure, as we haven't tried. Anyway, there is some really good info. on this group, and things that you might find useful Faith, since your Dr. is into the genetic testing, and probably uses therapies along the same line as Dr. Yasko. It's probably impossible for any ONE Dr. to know, or take into consideration all of the complexities of these treatments. I think it's great that you're learning all you can, to help provide him with the best information on things you are observing with your son. This kynurenine/kynurenic acid, may be useful for all of us to keep in mind, and watch for the effects of, since it seems to be, somewhat TS specific. One of our Posters (Dominique/Dee), recently took her son to a Dr. that follows the Yasko protocols for PANDAS. I got a really wonderful voice mail from her, last night, with an update. It sounds like her son is doing wonderful, following his tonsil removal. Much of the information that Dee shared with me (use of probiotics, herbs, minerals etc.) can be found on the autism autisminfo. forum. Part of Yasko's strep protocol has to do with removing aluminum from the body, which she feels makes strep matters worse. If anyone decides to join, I hope you bring things that you find interesting or helpful back here. There is a lot of PANDAS info. as well as idea's on gut healing. Hope this can help someone else, find a puzzel piece! Kim

Faith, Until this is accepted and acknowledged by the people with the money, it's very hard to identify the subsets of damaged kids, and the treatment protocols that are going to be tailored to their specific needs. That's why you have people within the DAN COMM. working so hard on the different puzzel pieces, and families mortgaging their homes, and becoming so involved in the research themselves. The majority of the tests and treatments, have no coverage by insurance. I don't believe the study Carolyn is referring to is here, but this will give you a good overview. A big part of the problem with advancement in this area, is answered in the very last paragraph of the first link. http://whale.to/v/haley.pdf http://whale.to/v/haley_q.html

Michele, Honestly, the thing that may be the most helpful to you (besides finding the right Dr. to guide you)is to read, read, read, on this forum. I know that your time is probably really limited right now, but it's so hard to convey the vast experience here. A couple of things that we attribute to yeast overgrowth around here are.... sugar/carb cravings, possibly the inability to absorb/produce/convert nutrients from foods, itchy ears. With my youngest son, behavioral changes. He gets a very white tongue at times too. Some parents report, spacey and uncontrollable giggling with yeast or a type of bacterial overgrowth. Here is one link for a yeast thread on this forum. There are many more. You can use the seach feature at the bottom left of the first page to look for specific threads on any topic. It's really helpful! http://www.latitudes.org/forums/index.php?...c=1472&st=0 Here's one of many articles, if you google yeast. If you want to get more specific on symptoms and possible cause of problems in this area, try Yeast+Autism. http://www.majidali.com/yeast.htm Two other things that may be helpful are Sheila Roger's book; http://www.latitudes.org/book.html and finding a Dr. that will be willing to help get started with testing prior to your DAN appt. Here is a link provided at the top of this forum, for finding medical help. http://www.latitudes.org/forums/index.php?showtopic=565 Most of us, have found very little support from Reg. Physicians. Until a treatment plan is studied and accepted, it's very hard for them to endorse or offer guidance with it. Also, one of our Pediatricians told me, that he just really had no knowledge of vitamins and minerals or many of the things that I was talking about, in relationship to tic syndromes. If your son has had any type of blood work, or will have any time in the near future, I would definitely ask to have his zinc level included in that. If they can do copper too, all the better. Many have found the zinc/copper balance to be out of whack and it can be very important. I did get my regular Ped to do zinc level and IgG food testing but the food testing was like pulling teeth. No one knew that the test was even available through Quest labs. I was able to get my insurance to cover it too (Health Plus), but like I said, it was an ordeal. It only covered 20 foods but it did give me enough evidence to know that there was a problem with food sensitivities. Any thing that you are able to have your Reg Dr. test for, be sure not to have Tourette Syndrome or anything related to it, in the billing code or insurance will not cover it. It has to be coded for something like gastric upset, allergies etc. That is probably enough for you to try to absorb right now. I wanted to remind you to try to relax, and take things slowly. You have such a head start on many parents, who don't have any idea that there is so much they may be able to do,to help improve their childrens health, until they are much older. There are many here who will try to help you through this. Kim

John, I wanted to add, that our experience has also been that some explaination to other kids is best. In the age group that your son is dealing with, the allergy explaination, worked very well for my son also. The key, is really how your son is able to express a level of comfort with it. If the other kids sense that they can "bug" him, I think they tend to be relentless. I think it's the same with any type of "difference," at that age. For instance, if a child wears glasses, and being called 4 eyes, really gets a reaction out of the child, that's great fun for some kids. I see that happen everyday. It happens to overweight children all of the time. If your son appears relaxed and gives a simple explanation, with a tone of confidence, I bet he will have very little trouble. I think your instinct about some explanation, was right on. I also wanted to share, that your son might very well not have the level of tics at school, that he does at home. I was stunned, when I finally started talking to teachers about my sons tics (I wanted to know, if it was affecting anything as far as school work, attention, if they were being picked on etc.) and I got very puzzeled looks, more than once. The teacher was totally unaware that there was a tic syndrome. With what I was seeing at home, that was incredible to me. I'm so glad to hear of your son's improvement too. Keep reading and learning thou! I always found I could focus much better, when I wasn't upset, about a tic that was causing a lot of emotion! Kim

Irena, I am so happy that Daniel's thread, brought you back with an update! I really hope getting the amino acids on track will help all you have done, fall into place. It's so good to hear from you. I hope you have a wonderful weekend. Prayers and Hugs Kim

Bumping for Michele

Michele, I was reading back through your posts, and realised that you're pregnant. Congratulations on your pending arrival! I bumped a thread that Claire has kept current, for newcomers, that lists various tests, and how you can obtain them. Many do not require a Dr.s signature. I'm not sure if there is a viral panel on the Direct Lab site or not. I have read on other forums, where parents have ordered (or their Dr. ordered) this type of test for things like herpes viruses, Epstein Barr, measles, etc. I have read of parents using things like grape seed extract, monolaurin, olive leaf extract, etc. to clear viruses and some forms of bacteria. One thing I have read several times, is yeast may increase when these things die off. Does your son exhibit any symptoms of a yeast problem? When using monolaurin, you may want to watch out for that. I have never used it with my boys, so I'm only repeating other posters remarks, here. Could I ask, when your son got the flu shot? Did you notice any correlation with symptom increase? Kim

colleenrn, Hi Colleen. I only had a minute to read through the article you posted, but I would really like your opinion on something. This comes from a Mom, who has two sons with a tic syndrome. They both have a heavy history of strep, and repeated amox. use, and other antibiotics. My oldest son also had a staph infection, which cleared and then reoccured, about 1 year ago, after a minor surgery (mole removal). Keflex was prescribed, after doxycycaline (sp?). My youngests son, had two bouts of pneumonia, a couple of years ago. Again, he had been on many antibiotics. I have learned a bit about commensal bacteria, and the voids that are created, when bacteria, that in many instances, live in harmony in/on our bodies, until something interfers. Some of this, came from studying vaccinations. Anyway, what I'm really wondering, is WHEN is the medical community, going to at least recognise the importance of probiotics in relationship to the antibiotics? I used to feel, that it was safe to take my sons around infants, elderly (we had great grandparents in their 90's) etc. because they had been on lots of antibiotics. Now, I realize that you can harbor some pretty nasty bacteria, when you have been on antibiotics, which my not make the carrier ill, but can be transmitted. I'm wondering if you have any thoughts on this, and if you use probiotics with your daughter? When you have a minute, I would really like your opinion on this; http://jac.oxfordjournals.org/cgi/content/full/48/4/463

Faith, I just wanted to tell you, that I think Carolyn has been giving you some excellent advise and information, too. A while back, there were quite a few parents discussing pink urine in regards to the MB12 shots (on an autism forum). I'm really hoping that once you get that B12, where it needs to go, that you will start seeing some improvements, whether it's in the form of the shots, or if you decide to switch to a sublingual form. I hope you keep us updated about the debate btwn the online chemist, and your DAN. In regards to Dr. Walsh, I know that much of his info. is based on some huge studies/data base. I don't know how current those articles are, and I know there has been new testing/treatments/theories, that have come to the fore recently, so, I guess, I can't answer that question. I think it is always good, to get info. from several sources. PARENTS and personal accounts like Carolyn's, included. I think part of your frustration, has been in regards to how this treatment relates to improving your sons tics. I tried to find things that were simply written, to help show you why this may be so important. http://www.emedicine.com/neuro/topic439.htm Vitamin B-12 role in the peripheral and central nervous systems The neurologic manifestation of cobalamin deficiency is less well understood. CNS demyelination may play a role, but how cobalamin deficiency leads to demyelination remains unclear. Reduced SAM or elevated methylmalonic acid (MMA) may be involved. SAM is required as the methyl donor in polyamine synthesis and transmethylation reactions. Methylation reactions are needed for myelin maintenance and synthesis. SAM deficiency results in abnormal methylated phospholipids such as phosphatidylcholine, and it is linked to central myelin defects and abnormal neuronal conduction, which may account for the encephalopathy and myelopathy. In addition, SAM influences serotonin, norepinephrine, and dopamine synthesis. This suggests that, in addition to structural consequences of vitamin B-12 deficiency, functional effects on neurotransmitter synthesis that may be relevant to mental status changes may occur. Parenthetically, SAM is being studied as a potential antidepressant. Now read this page. It may not be the best source of information, but I had not really looked at the neurotransmitters much. This page gave me some ahh haaa's. One thing that occured to me, was why meds that are used to "treat" ADHD may make tics worse (or bring them out), and why some meds used for tic's might make symptoms of ADHD worse. We don't use meds, and neither of my boys have ADHD, but it is really interesting to realize why things happen, which you have read or heard about. Anyway, if you get a little familiar with some of the neurotransmitters, maybe this whole thing will start to make a little more sense to you. Be sure to click on some of the links there, especially, epinephrine (adrenaline) and norepinephrine (noradrenaline) http://en.wikipedia.org/wiki/Dopamine

Faith, That is a major coincidence isn't it. I just used google and typed in MTHFR+neurological conditions. I recognised Jill James name on the author list, and figured this might be one of the better ones. It is pretty technical, and believe me, if someone would have given me that info, a while back, I would have been using the smiley too. Still feel like that, trying to read a lot of this stuff. I just absorb better, when I'm conversing with someone, so thank you! These are a couple of articles, that Claire had shared, when I was pretty new here. They really helped me get acquainted, with some of the issues discussed here. Maybe they would help you? http://www.alternativementalhealth.com/articles/walshMP.htm http://www.alternativementalhealth.com/art.../walshMP.htm#Py These articles contain much of the same info, but they are a bit different. If you click on the PAGE A-E PAGE F-L PAGE M-P at the bottom of the page, you can go right to the topics that you want to explore, i.e. just click on the M-P page and it will take you right to methylation. My vote is yes, on metals. The overlapping spectrum disorders, are pretty hard to ignore, but there may be substantial differences too. That second part, is probably what keeps me up till dawn, many nights I wonder if families with a history, have noticed an increase in severity, or if the tics an co morbid conditions, in this generation, are comparable to the last? I hope if any one has comments on that, that they will add. Yep, that was probably me. I got that book from the library, and at the time MTHFR would not have meant anything to me. I'm barely acquainted with it now!

Faith, I'm so sorry that you are feeling so overwhelmed right now. I'm totally incapable of answering your questions, but I did do a little reading on MTHFR. I pulled just one paragraph out of an article, because it mentioned methionine, in relation to a defect in this gene. Then I copied the second excerpt, to try to help you understand, how this defect might be involved in your son's symptoms? This is such a small part of the big picture, but may be a starting point, for you. http://64.233.167.104/search?q=cache:k3cWD...=clnk&cd=10 Methyltetrahydrofolate is essential inone-carbon-donor metabolism for the remethylation of homocysteine to methionine and the generation of metabolically active tetrahydrofolate in the methionine synthase reaction. Common polymorphisms in the MTHFR gene have been associated with reduced enzyme activity. A detailed review of folate metabolism and MTHFR is available from Schiveretal. MTHFR is located on chromosome 1 at 1p36.3. Common single nucleotide polymorphisms of the 677C T and the 1298AC alleles in the MTHFR gene decrease the activity of the enzyme. The 677C T allele has been associated with neural tube defects, cerebrovascular and cardiovascular disease, inflammatory bowel disease, colorectal cancer, and psychiatric disorders. http://www.answers.com/topic/methionine Methionine Description Methionine (C5H11NO2S) is an essential, sulfur-containing amino acid. It is the source of sulfur for numerous compounds in the body, including the amino acids cysteine and taurine. The body uses sulfur to influence hair follicles and promote healthy hair, skin, and nail growth. Sulfur also increases the liver's production of lecithin (which reduces cholesterol), reduces liver fat, protects the kidneys, helps the body to excrete heavy metals, and reduces bladder irritation by regulating the formation of ammonia in the urine. Methionine is a lipotropic—a nutrient that helps prevent fat accumulation in the liver, and usually helps detoxify metabolic wastes and toxins. S-adenosyl-L-methionine (SAM, or SAMe) is an active compound made from methionine and adenosine triphosphate (ATP), an enzyme found in muscle tissue. SAMe is manufactured within the body and is found in almost every tissue, but it can also be made synthetically. It acts as a methyl donor in a variety of biochemical pathways. Methylation reactions are essential for the detoxification of harmful products of metabolism, and the synthesis of numerous physiological agents including neurotransmitters, cartilage, and glutathione. (Glutathione is a chemical that plays an important role in biological oxidation-reduction processes, and as a coenzyme. It can combine with toxic substances to form water soluble compounds that can be excreted through the kidneys.) This just touches on methionine. There are many other substances, that are mentioned in these articles, that you will probably want to become familiar with. It's not a matter of treating the mutation, it's what clues identifying the mutation provides, in treating things that may be contributing to your son's symptoms, that's important, I believe. This is such a complex subject, and the Dr.s that are brave enough to stray off the beaten path, appear to be overwhelmed in some cases too. I think parent involvement and observation, in most cases is quite helpful. Just take your time, and keep asking questions. It sounds like you have some good Dr.s guiding you with this whole thing. kim

Hi Faith, I was reading your post on another thread, and got to the part about the MTHFR mutation. I was kind of shocked to see that remark and really intrigued. Has your DAN ever mentioned Dr. Amy Yasko? She does a line of genetic testing and the MTHFR is one of them. You might want to visit this site, and the parent group, to learn all you can about this mutation. http://www.autismanswer.com/ I hope you will keep us posted on what you are able to come up with. I believe, Yasko's protocol is a complicated beast, but I do feel she has some of the answers, for some children, who have not responded well to the standard DAN methods. The genetic testing seems key in this, from what I've read. These articles have so much useful information. I get something new out of them, each time I read them. Whether your interested in PANDAS, diet, glutamate, sulfur, sugar dysregulation (biggy for us) digestion, vaccines, etc, she touches on all of them. Reversing the process. http://www.autismanswer.com/articles/yasko..._reversing.html The Role of Excitotoxins in Autistic Type Behavior http://www.autismanswer.com/articles/yasko...citotoxins.html Autism: A Twisted Tale of Virus and Thimerosal http://www.autismanswer.com/articles/yasko...thimerosal.html

Ahhh Programmer I had your original question confused. I found this in regards to Zofran http://www.emedicine.com/neuro/topic664.htm Serotonin function has also been assessed in TS, and patients have lower plasma tryptophan levels than normal (Comings, 1990). Preliminary postmortem studies also show reduced brain tryptophan concentrations. Unconfirmed results suggest a possible genetic link between TS and a serotonin metabolic enzyme (Comings, 1996). A [123I]b-CIT SPECT study suggests lower serotonin transporter binding in patients with TS, with binding correlating inversely with severity (Muller-Vahl, 2005). However, the relevance of all these findings to pathophysiology awaits further study. Serotonin-3 receptor genes showed no clear abnormalities in TS (Niesler, 2005). Most treatments that modify serotonin function (eg, fluoxetine therapy, tryptophan depletion therapy) have not produced consistent responses (Black, in press). However, a double-blind RCT of the serotonin-3 receptor antagonist drug ondansetron did suggest efficacy (Toren, 2005). So your Dr. was prescribing this expensive med, for a reason. I'm wondering if blocking the serotonin receptor, leaves more available serotonin like the SSRI's? The only medication we have had any experience with for tics, has been clonidine. I have just started looking at some of the drugs used to treat TS (only recently, even learned how the SSRI's are supposed to work). My boys have tics only, and fairly mild, but I know so many people that have lives that are touched by ADHD, anxiety, depression, etc. My interest has expanded I guess to answer your original question, meds that I have personally have read a few negatives on, and would be cautious in the use, with my son's are Phenergan, long term use of Prevacid and Zantac.

Programmer, I would like to take your post as an opportunity to say welcome to you, and all of the recent new posters. I wanted to repond to your question, not because I'm any kind of authority, but because I have been looking at these types of medications recently. A friend of mine was prescribed Phenergan (which has also been prescribed for my son's for respiratory virus/infections) and it appeared it was causing him some problems, especially in combination with other drugs that he is taking for TS. I have no idea, how familiar you are with the neurotransmitters that are involved or suspected to be involved in movement disorders and co morbid conditions, so forgive me, if this is not the type of info. that you're looking for. Here are a few things you might want to take a closer look at, in regards to ZOFRAN Antagonist: In biochemistry, an antagonist acts against and blocks an action. An antagonist is the opposite of an agonist which stimulates an action. Antagonists and agonists are key players in pharmacology and in the chemistry of the human body. http://www.rxlist.com/cgi/generic/ondansetron_cp.htm CLINICAL PHARMACOLOGY Pharmacodynamics: Ondansetron is a selective 5-HT3 receptor antagonist. While ondansetron's mechanism of action has not been fully characterized, it is not a dopamine-receptor antagonist. Serotonin receptors of the 5-HT3 type are present both peripherally on vagal nerve terminals and centrally in the chemoreceptor trigger zone of the area postrema. It is not certain whether ondansetron's antiemetic action in chemotherapy-induced nausea and vomiting is mediated centrally, peripherally, or in both sites. http://pharmacy.oregonstate.edu/drug_polic...ryptamine3.html II. Pharmacology The 5-HT3 receptor antagonists are selective serotonin inhibitors, competitively inhibit the binding of serotonin to 5-HT3 receptors. Their antiemetic effects are postulated to stem from blockade of 5-HT3 receptors located on the nerve terminals of the vagus in the periphery and centrally in the chemoreceptor trigger zone of the area postrema. These drugs have little or no affinity for other serotonin receptors; for alpha or beta-adrenergic; for dopaminergic; or for histamine receptors.(1-3) This medication is also used prescribed for nausea sometimes http://en.wikipedia.org/wiki/Promethazine brand names Phenergan®, Promethegan®, Romergan

Herman, Here are the links to a couple of articles, that I found, while looking for the same statistics. http://www.ninds.nih.gov/disorders/tourett...il_tourette.htm *The early symptoms of TS are almost always noticed first in childhood, with the average onset between the ages of 7 and 10 years. TS occurs in people from all ethnic groups; males are affected about three to four times more often than females. It is estimated that 200,000 Americans have the most severe form of TS, and as many as one in 100 exhibit milder and less complex symptoms such as chronic motor or vocal tics or transient tics of childhood. *Epidemiology and clinical science. Careful epidemiological studies now estimate the prevalence of TS to be substantially higher than previously thought with a wider range of clinical severity. Furthermore, clinical studies are providing new findings regarding TS and co-existing conditions. These include subtyping studies of TS and OCD, an examination of the link between ADHD and learning problems in children with TS, a new appreciation of sensory tics, and the role of co-existing disorders in rage attacks. One of the most important and controversial areas of TS science involves the relationship between TS and autoimmune brain injury associated with group A beta-hemolytic streptococcal infections or other infectious processes. There are a number of epidemiological and clinical investigations currently underway in this intriguing area. All NINDS-prepared information is in the public domain and may be freely copied. Credit to the NINDS or the NIH is appreciated. Last updated April 07, 2006 ********************************************************************8 http://www.brookespublishing.com/email/arc...01/may01DD2.htm May 2001 Genetics The National Institutes of Health officially estimate that 100,000 Americans have full-blown TS. Some genetic studies suggest that the figure may be as high as one in two hundred if those with chronic multiple tics and/or transient childhood tics are included in the count. ************************************************************** http://en.wikipedia.org/wiki/Tourette_syndrome Tourette's syndrome has historically been described as a rare disorder, with about 5 to 10 people in 10,000 having TS.[10] However, multiple studies published since 2000 demonstrate that the prevalence is much higher than previously thought, and that Tourette's syndrome can no longer be considered rare. Contemporary prevalence estimates range from 1 to 3 per 1,000[28] to 10 per 1,000.[29] A large, community-based study suggested that over 19% of school-age children have tics, with almost 4% of children in regular education fulfilling the diagnostic criteria for Tourette's Syndrome. The children with tic disorders in that study were usually undiagnosed.[30] As many as 1 in 100 people may experience some form of tic disorder, which includes transient tics, chronic tics, or Tourette's Syndrome. *********************************************************** http://www.education.ucsb.edu/jimerson/tour.html http://www.medscape.com/viewarticle/431108_print

Patty, I know exactly what Ronna means about tics being "catchy." We have a boy who is blinky, and a nose scruncher in our neighborhood, and another little boy with some ADHD type symptoms. When my youngest son was head shaking, the two of them started doing it too. All three of them would be bike riding, and all 3 were head shaking. I thought, it was just kids copying kids, but I have to wonder, if at least one, didn't have a propensity toward it, and it was brought out from seeing my son do it. My oldest son, told me that one child did it all the time, even when my younger son, was no where around. They have since moved, so I don't know if it passed or not. I also know that you don't think that this is a copy cat behavior with your daughter, so all we can do is hope, as in Ronnas younger child's case, that it just doesn't escalate, if it was a tic. I know the despair of watching, and in our case accepting, that my youngest child, was going to be affected too. One thing, that I can share from our experience, is the course of this thing, with the two boys has been radically different. To this point, my youngest son (10), has not really been bothered by the minimal tics. He was probably around 4, when I could see some eye movements. I think he was 7 when he had his one and only head shaking flair. He has had a mild shoulder shrug, a teeth clicking tic, that he only did at home when relaxing, and some mild eye movements. The eye movements, I still see, when we don't use enzymes. I would like to think, that some of the supplements, enzymes, probiotics, etc. have helped to keep things in check. I do know, that he is not sick as often, his extreme paleness and dark circles are so much better, and his stamina is much improved. He is an extremley limited eater, so I'm positive he has gotten a lot of benefit from the supplements. Thoughts are with you. Kim

CP, I wish I knew how to post one of Chemar's marching bands, to help celebrate with you! Kim

Michele, There was a Mom here, that posts under the name Dominique. Her name is Dee. She has a son with PANDA's also. I am going to give you some threads with posts by her and others, so you can become fimiliar with her son's story. I know she had talked with someone at Shands Clinic. I am assuming that she chose the Dr. that she did, because they were closer. These were the Dr.s that someone from another forum, had shared (I just transfered info), as having experience with PANDAS and Dr. Yaskow's program. Dee flew her son to see one of these Docs and loved them. Dr. Rachel West is in California Nancy Mullen in California Michael Payne Virginia This post in particular, with the info. from Amy Yaskow's site, is the one that Dee chose to pursue. http://www.latitudes.org/forums/index.php?...amp;#entry13350 Here is the whole list of threads: http://www.latitudes.org/forums/index.php?...amp;#entry13236 http://www.latitudes.org/forums/index.php?...amp;#entry13245 http://www.latitudes.org/forums/index.php?...amp;#entry13245 http://www.latitudes.org/forums/index.php?...amp;#entry13350 http://www.latitudes.org/forums/index.php?...amp;#entry13351 http://www.latitudes.org/forums/index.php?...amp;#entry13357 http://www.latitudes.org/forums/index.php?...amp;#entry13387 I hope you can find something here that helps.

Ortho, I think this will get you to the enzyme group that was being discussed. http://health.groups.yahoo.com/group/EnzymesandAutism/

Tess'mom, I'm really hoping you continue to post also Every single voice, is so valuable here. I certainly can relate to the energy stores at times, but ,when ever a cold front moves through, and the global warming subsides , we will all look forward to hearing from you! kim