Caryn

Hello Julia, Just a thought-- Pfeiffer Center is coming out with a study (I think this month) that connects high levels of copper in the body to severe PMS symptoms, postpartum depression, and menopausal depression. I went to an educational seminar a few weeks back for my ds's tics and mood swings, obsessions, etc... It was very interesting and they discussed a lot of issues on subject. I don't know much more, but will be going there again in a week. http://www.alternativementalhealth.com/articles/walshFL.htm this web site may offer more info on that and more. Pfeiffer Center's actual site is: http://www.hriptc.org/ This may not help you at all, but who knows? Caryn

Hi Marianne Hi and welcome! You mentioned something about your son ticking more when you give him the Centrum. . Hydrolyzed protein is a raw ingredient added to the Vitamin E that is found in some Centrum products. The hydrolyzed protein is derived from corn. In our case, we were giving my son CoreOmega fish oil pudding packs and it wasn't until recently that I realized they were made with corn starch. We later found out that my son is very intolerant to corn. (It is a very strong tick trigger for him and even the most delicate amount will cause him to shrug his shoulders or shake his head back and forth.) If you can get a good food intolerance test that may help you decide what his triggers are. If not, keep a log of what you feed him and then maybe you can piece together what his triggers are over time. According to Sheila Roger's book the four main tic triggers are: milk, wheat, eggs, and corn. Our ds is intolerant to wheat, eggs, and corn. I'm not sure how prevalent corn is in food products down under, but here in middle America it is in everything! Caryn P.S. for what it is worth, Centrum is a multi that is made from synthetic ingredients and we were advised not to use a vitamin made from synthetics or fillers. We are currently using Bontech, made in the USA.

Can anyone tell me when they first began this counting/alphabetizing habit? I have a 4 yr. old with tics who is already reading, spelling words like orange, and counting to 1000. He likes to count how many letters are in words, loves to to rhymes and play games like: which word has three letters, car or daddy? Thanks!

found this on the web while looking for GF flour recipes: It is at: http://www.fastq.com/%7Ejbpratt/recipes/al...dallergies.html Corn/Processed Corn In June 2004, I discovered I'm allergic to processed corn (ascorbic acid & citric acid-those derived from corn, dextrose, corn starch, corn syrup, xanthan gum. etc.) I can eat plain corn. It is very hard to find corn-free products since it is not considered an allergens in the U.S. It is most food, juices, and beverages. I buy separate canned fruits that has only sugar or natural juices in them or make my own cooked fruits. (I have Oral Allergy Syndrome, I have to have cooked fruits.) I have to skip the canned sweet potatoes. I still haven't tried marshmallows since I discovered my corn allergy but I will probably react to them. You also have to make sure to get corn-free baking powder or use substitutes. Corn Reactions When I ate creamed corn on June 10, 2004, my breathing was a little heavier & whistling through nostril; I have felt weird and a little woosy. The next day, I had two tostadas. I was breathing deeper, then deep breathing, and then weird feeling. Late August 2004: I tried the rice bars again made by Natures Path. I reacted to it a second time (slight wheezing and slightly difficult to breath but not too bad). No more processed corn for me. I can't eat any type of processed corn chip, blue corn chip, tostada shells, taco shells, Quick Grits by Quaker or anything that has sulfur in it. I NOW (as of January 2007) can EAT corn chips. One of these days I will try the other foods I reacted to. I read at: Corn Refiners Association - Process Overview that wet milled processed corn is soaked in sulfur. I know I'm allergic to sulfur. In early 2005, a nutritionist, from Kroger said that corn has sulfur in it. She said that as corn is processed, the sulfur content comes out more. So, one may think s/he is allergic to corn but it is really certain corns s/he can not eat. (At least this goes for the respiratory symptoms. I don't know about the skin issues.)

Hi everyone! I found an old bread machine collecting dust in our basement. Would love to use it to make GF bread, as we are wheat and corn free at the moment and bought bread is about $6 a loaf. Anyone have good recipes or bread making tips? My machine is an Oster Thanks. Caryn

Everyone, I've read some comments about malodextrin and the like in another topic. I personally have had a bad allergy toward MSG for years. Thought you might like to read a little of what I found in my research on the net: http://www.truthinlabeling.org/hiddensources.html IF YOU ARE CONCERNED ABOUT THE TOXIC EFFECTS OF MSG, YOU SHOULD KNOW THAT: --the new CHICKENPOX VACCINE CONTAINS MSG; --SESAME STREET Pasta Shapes With Mini Meatballs in Tomato Sauce FALSELY ADVERTISES "NO MSG" ON LABELS; --Restaurants are being supplied with SOUP LABELED "NO MSG ADDED" WITH MSG IN IT; and --Gerber "Graduates" use MSG IN BABY FOOD. HIDDEN SOURCES OF MSG June 1, 1995 Food label descriptors that contain enough MSG to serve as common MSG-reaction triggers These ALWAYS contain MSG: Glutamate Textured protein Monosodium glutamate Hydrolyzed protein Monopotassium glutamate (any protein that is hydrolyzed) Glutamic acid Yeast extract Calcium caseinate Yeast food Sodium caseinate Autolyzed yeast Gelatin Yeast nutrient These very OFTEN contain MSG: Malt extract Flavors(s) & Flavoring(s) Malt flavoring Natural flavor(s) & flavoring(s) Barley malt Natural pork flavoring Bouillon Natural beef flavoring Stock Natural chicken flavoring Broth Seasonings (the word "seasonings") Carrageenan Soy sauce Maltodextrin Soy sauce extract Whey protein Soy protein Whey protein isolate Soy protein isolate Whey protein concentrate Soy protein concentrate Pectin anything Protein fortified anything Enzyme modified These can be used to CREATE MSG: Protease enzymes Protease Fungal protease Enzymes Hidden MSG is not limited to use in food. MSG sensitive people have reported reactions to soaps, shampoos, hair conditioners, and cosmetics that contain hidden MSG. The most obvious common hiding places are in ingredients called "hydrolyzed protein" and "amino acids." Drinks, candy, and chewing gum are also potential sources of hidden MSG. Also, aspartic acid, found in aspartame (NutraSweet) ordinarily causes MSG type reactions in MSG sensitive people. Aspartame is found in some medications. Check with your pharmacist. Binders and fillers for medications, nutrients, and supplements, both prescription and non-prescription, including enteral feeding materials and some fluids administered intravenously in hospitals, may contain MSG. Reactions to MSG are dose related, i.e., some people react to even very small amounts of MSG while others usually only react to relatively more. MSG-induced reactions may occur immediately after contact or after as much as 48 hours. There are additional ingredients that appear to cause MSG reactions in ACUTELY sensitive people. A list is available for those interested. Truth in Labeling Campaign (TLC) PO Box 2532 Darien, IL 60561 --Caryn

Mike, In the very beginning we tried doing just a magnesium supplement, but for us that wasn't enough. I think it is also important to include vitamin B6. Here is a web site I found on the subject. http://www.bio.net/bionet/mm/neur-sci/1996...ary/022416.html It is fairly dated, but I know that the b vitamins are very good for neurological health (and a whole lot of other stuff.) We use Bontech ourselves, and the doses for magnesium are 75% of DV in 300 mg. The B6 dose is 50mg, and 2,500% of DV. Hope this helps.

Faith, My son got Varicella and Comvax in October. (Comvax is Hib and Hep B together). First, son had behavioral issues at school, then in late December initial onset of tics. They got severe in January and February, and didn't wane until three weeks after initial dietary changes and one week after Bontech vitamin regiment began. He has only been completely tick free for two weeks since then. (He is ticking currently, but very mild (I think due to a dietary slip up on my part). Caryn

Thanks Kim. You are a mountain of knowledge, and I really do appreciate your help. I have a lot to sort out, as I have three boys to put in school within the next 5 years. I know all about the Hep B vax. It is required in the State of Illinois for preschool enrollment, as is varicella. I'm a former teacher, and I know I had to have Hep B to teach. I was under the assumption that once I had begun vaccinating that I could not come back and refuse a vaccine based on personal belief. In Illinois it is all or nothing. But I read many posts on the wonderful site you included and see that many parents just give certain vaxs and claim complete religious exemptions with the school. Something to think about. It astounds me that the peds get perks and punishments based on the amount of vaxs they administer. It certainly explains why I get so much presser from my ped every time we go, although he did tell me that most mothers are now delaying infant vaxs (my 10 mo. old only has had two.) What bothers me is that most peds only offer the bundle vaxs, so you always get a combo shot and if there is a reaction you have no idea from what. I did read a parent post a while back, I think in Sheila's book, where a child tested high in aluminum, rather than mercury, as was suspected. Maybe I should look for a good doc to do testing on my son to see if he has high metals. I just it would be the first step. I also read that Dr. Swedo patented a blood test that would show if a child has the genetic predisposition for TS. Something for me to consider with my other two children. Has anyone done either of these? Caryn

Thanks, Kim. I have a lot to think about. I never did give my son the flu vaccine, and I thought he only received vaccines without themerisol, but now I'm not so sure. I even had him on a delayed vaccine schedule as I have always had concerns. I want to to what is right for my children, and right now I'm looking at my other two kids and thinking, is it necessary? Could they possibly have a bad reaction too? After what we have gone through these last six months and what I have learned so far, I'm not sure I can bring myself to continue vaccinating my kids. I just don't understand how my son could have developed T.S. symptoms any other way. I think I'm going to go back and look at all his vaccinations and try to correlate it to any subsequent illnesses that he might have developed shortly afterwards.

I agree with Daniel. And, anyways, if there is one thing I have learned from this forum is that the cure is different for each child, and that goes for diet too!

I need a medicine that would be free of wheat, corn, and coloring, if possible. I read that antihistamines are bad. Is there something herbal that is good?

Faith, Namaste has a tasty pancake mix that is both corn and wheat free. It does call for eggs, but I make it without, as Ian is also sensitive to egg yolks. (I use a substitute.) I bought featherweight baking powder at Whole foods-- (no corn starch in it) I also found breakfast sausages at whole foods yesterday that don't have wheat or corn fillers/sweeteners. Sausages by Amy. They are pork free if that is a problem (made from chicken.) Made with turbinado sugar (from cane sugar). Can your son eat dairy or eggs? I'm sorry, I forgot. I did get buckwheat cereal the other day and the kids loved the taste. (soft like pastina, tastes more like farina.) It is much better with milk. You could use rice milk or almond milk (vanilla flavored) if you are staying away from dairy. Don't make it with water. My two year old said it was yucky. I do add a bit of maple syrup to get it to go down easily. (I think buckwheat unflavored tastes better than oatmeal, but your tastebuds still hanker for a bit of flavor, you know? I can't remember if you are using Bontech or not, but I have even emptied the capsules into my son's cereal and he ate them right up. Let me know what you serve at lunch or on the go. I need some cool ideas for travel snacks and stuff I can bring to the relatives and friends houses. Caryn P.S. Tried Aramanth o's -- totally gross (did not get a sugared or flavored variety). Also tried Quinoa flakes (my son complained that there were little strings in it. He obediently choked down half the bowl and then I never attempted to serve it again.)

Me again... I have found a forum that completely dissected the Dr. in Jan. of 06. Very informative forum and I think this doc and his ideas on IVIG for Pandas, Pitands can be scrapped! http://p069.ezboard.com/Miroslav-Kovacevic...opicID=33.topic

okay, hello again! Sorry to be such a nuisance on the topic... I think I may have answered my own question.... I found this info at: http://www.webpediatrics.com/pandas.html PANDAS diagnostic criteria (1) Current or past presence of symptoms (DSM IV) of Obsessive Compulsive Disorder, Tic Disorder (including Tourette's), Autism or Autistic Spectrum Disorder, and Anorexia Nervosa*. (2) Symptom onset between 18 months of age and puberty. (3) Episodic course of symptom severity characterized by the abrupt onset of symptoms and/or frequent, dramatic symptom exacerbation. (4) Symptom exacerbation associated with beta-haemolytic streptococcal infection. (5) Presence of abnormal Neuropsychiatric examination, including motor hyperactivity, adventitious movements, tics, etc. (6) Measurable clinical improvement following "Steroid Burst". DISQUALIFYING FACTORS (absolute): Presence of symptoms before 1 year of age. DISQUALIFYING FACTORS (relative): Confirmed Dg. of Autism and/or Autistic Spectrum Disorder in sibling(s). (*) Male patients with Anorexia Nervosa should be of a particular interest. PITAND diagnostic criteria (1) At some time in his or her life, the patient must have met diagnostic criteria (DSM IV) for one of the following neuropsychiatric disorders: Obsessive Compulsive Disorder, Tic Disorder (including Tourette's), Autism, (or Autistic Spectrum Disorder). (2) Pediatric onset: symptoms of the disorder first become evident between 18 months of age and the beginning of puberty. (3) The onset of clinically significant symptoms must be sudden (with or without a sub clinical prodrome), and/or there must be a pattern of sudden, recurrent, clinically significant symptom exacerbation and remissions ("wax and waning pattern"). Onset of a specific episode typically can be assigned to a particular day or week, at which time symptoms seem to "explode" in severity, and they are frequently associated with an infectious episode. (4) There must be evidence of an antecedent or concomitant infection. Such evidence might include a positive throat culture, positive streptococcal serologic findings (e.g. anti-streptolysin O or anti-streptococcal DNAse , or a history of illness (e.g. pharyngitis, sinusitis, infection with Epstein-Barr virus, influenza, ?recurrent otitis media), and possibly recent exposure to childhood vaccination. (5) Presence of auto antibodies (anticardiolipin, antineuronal, antibody/antigen complexes, etc.) (6) During the exacerbation, the majority of patients will have an abnormal neuropsychiatric examination, frequently with hyperactivity and adventitious movements ("choreiform" movements). (7) Measurable clinical improvement following "Steroid Burst". Modified "Allen criteria" (from Albert J. Allen Group A Streptococcal Infections and Childhood Neuropsychiatric Disorders CNS Drugs Oct. 1997 8(4) 267-275 The most exciting prospect of PANDAS and PITAND theory is the simple fact that a biological agent(s) (in this case, infective microorganism) has been identified as a single cause of a mental illness. PANDAS and (possibly) PITAND do indeed represent a disease(s) that satisfies the McGovern and Troisi criteria (please refer to Autism page). Various descriptive terms so much abused in current scientific terminology of mental illnesses, like "chemical imbalance", "abnormal brain chemistry", etc. that have absolutely no scientific meaning or diagnostic nor therapeutic value, might finally be relegated to history. It is likely that following a century of unsuccessful search for the disease of the mind, the body will be where the answers will be found. Once the cause of an illness (in this case mental illness) has been identified search for an adequate treatment is the next logical step. In PANDAS and PITAND syndromes an adequate treatment already exists and has been proven successful. Use of antibiotics for GABHS infection (i.e. Penicillin) does not only "control" the symptoms, but it cures the patient. Once however, damage to the nervous system has been demonstrated (both in PANDAS and PITAND) further treatments modalities might be necessary, and these are readily available as well (corticosteroids, Intravenous immunoglobulin, anti-inflammatory compounds other than steroids, etc.). It is also extremely important to mention that the resulting damage to the nervous system symptomatic of PANDAS and PITAND syndromes can be reversed in its early stages (please refer to our Bibliography page), and a complete cure should be expected. It is likely that with the passage of time and an increased acceptance of Allen's and Swedo's theories, a definite cause for a number of mental illnesses overwhelming the modern society will be defined and complete cures achieved. So, this must mean that parents with children that test negative for Pandas should pursue the possibility that the symptoms may be the result of PITAND? and further press their physician to run additional testing???? What do you all think? Caryn PS. the site also claims that Intravenous Immunoglobulin can "cure" TS symptoms in Pandas and Pitand. Any thoughts? The practice appears to be local to us.... Hinsdale, IL. I may call for further information.

hi everyone, I'm still searching, and came across this: <<behavior and movement disorders >> "A controlled study of serum anti-locus ceruleus antibodies in REM sleep behavior disorder" (Sleep, vol. 20, no. 5, May 1997, pp. 349-51): "The newly identified association of human nonnarcoleptic rapid eye movement (REM) sleep behavior disorder (RBD) with human leukocyte antigen (HLA) DQwl class II genes raises the possibility that RBD may arise from autoimmune mechanisms." [The following reports are not vaccine-specific; rather they serve to underline one of the possible conditions resulting from altered permeability of, or damage to the intestine, as occurs in association with measles and other viruses. Note: strep-type bacteria are among those which can translocate from the gut; these have been implicated in cases of Obsessive-Compulsive Disorder and Tourette Syndrome.] "Bacterial translocation from the gastrointestinal tract" (Trends in Microbiology, vol. 3, no. 4, April 1995, pp. 149-54): Viable indigenous bacteria from the gastrointestinal tract can migrate to other sites within the body, such as the mesenteric-lymph-node complex, liver, spleen, and bloodstream. Three mechanisms support bacterial translocation: intestinal bacterial overgrowth, deficiencies in host immune defenses and increased permeability or damage to the intestinal mucosal barrier. "Case study: a new infection-triggered, autoimmune subtype of pediatric OCD and Tourette's syndrome" (Journal of the American Academy of Child and Adolescent Psychiatry, vol. 34, no. 3, March 1995, pp. 307-11): the authors hypothesize that infections with group A beta-hemolytic streptococci, among other bacterial agents, may trigger autoimmune responses that cause or exacerbate some cases of childhood-onset obsessive-compulsive disorder (OCD) or tic disorders including Tourette's Syndrome. In this study, four boys aged 10 to 14 years presented with OCD or Tourette's Syndrome in the moderate to very severe range. Two had evidence of recent group A beta-hemolytic streptococci infections, and the others had histories of recent viral illnesses. "Speculations on antineuronal antibody-mediated neuropsychiatric disorders of childhood" (Pediatrics, vol. 93, no. 2, February 1994, pp. 323-6): "Several converging lines of evidence suggest that some behavioral and neurological abnormalities of childhood may be mediated through antineuronal antibodies. These antineuronal antibodies appear to arise in response to group A [beta]-hemolytic streptococcal (GABHS) infections and to cross-react with cells within the central nervous system (CNS). Based on clinical observations of children with Sydenham's chorea, Tourette's syndrome (TS), and/or obsessive-compulsive disorder (OCD), we hypothesize that neuroimmunological dysfunction secondary to antineuronal antibodies may result in behavioral disturbances, such as anxiety, emotional lability, obsessive compulsive symptoms, hyperactivity, and sleep disturbances, and neurological abnormalities, such as motor and phonic tics, ballismus, chorea, and choreiform movements." "Antineuronal antibodies: tics and obsessive-compulsive symptoms" (Journal of Developmental and Behavioral Pediatrics, vol. 15, no. 6, December 1994, pp. 421-5): 19 or 38 cases from an ongoing study of childhood neurodevelopmental disordershad existing or previously docuemnted OCS [OCD] and attention-deficit hyperactivity disorder (ADHD), with or without concomitant tics. 19 controls had ADHD, but no tics or OCS. Evidence was found of basal ganglia involvement in OCS, and a generalized central nervous system response [to infection] was suggested. "Bipolar disorders, dystonia, and compulsion after dysfunction of the cerebellum, dentatorubrothalamic tract, and substantia nigra" (Biological Psychiatry, vol. 40, no. 8, October 1996, pp. 726-30): the mechanism of the legions was not abstracted in this report; however, after focal cerebellar circuit lesions, these disorders presented in three of fifteen subjects. "Antineuronal antibodies in movement disorders" (Pediatrics, vol. 92, no. 1, July 1993, pp. 39-43): 24 children with recent-onset movement disorders (Tourette Syndrome, motor and/or vocal tics, chorea, and choreiform movements) as well as ADHD, behavior disorders, or learning disabilities were studied. The authors concluded that their data strongly suggests an association between antecedent group A beta-streptococcal infection and serum antineuronal antibodies, which may, in turn, be linked to childhood movement disorders. "Antibodies to human caudate nucleus neurons in Huntington's chorea" (Journal of Clinical Investigation, vol. 59, no. 5, May 1977, pp. 922-32): IgG antibodies against nervous system components were detected in patients afflicted with Huntington's and Parkinson's Diseases, as well as in asymptomatic spouses of patients. "These data may support an environmental or infectious factor somehow involved in the ultimate expression of HD." [This report is not vaccine-specific, but underlines a radical shift in thinking about cerebral palsy and a variety of other neurological impairments--i.e., to an infectious etiology.] "Infections may underlie cerebral palsy" (Science News, vol. 154, no. 16, October 17, 1998, p. 244; available at http://www.sciencenews.org/sn_arc98/10_17_98/fob1.htm): "Most doctors have believed that cerebral palsy--a form of brain damage that impairs movements--results from a difficult birth… While asphyxia may indeed be a cause of cerbral palsy, a new study provides evidence that the brain damage might often arise from some other…assault on an unborn child. Molecular clues now lead to inflammatory infection as a possible culprit, says Karein B. Nelson, a pediatric neurologist at the National Institute of Neurological Disorders and Stroke in Bethesday, MD." A study was performed by Nelson and colleagues which compared blood from normal and CP infants: the team found that all the stricken children harbored greater concentrations of substances indicating immune activation. In some of the children, indications of autoimmunity were seen as well. (Study citation: "Neonatal cytokines and coagulation factors in children with cerebral palsy," Annals of Neurology, vol. 44, October 1998, p. 665.) "Increased prevalence of antibrain antibodies in the sera from schizophrenic patients" (Schizophrenia Research, vol. 14, no. 1, December 1994, pp. 15-22); "Antibodies to brain tissue in sera of schizophrenic patients-preliminary findings" (European Archives of Psychiatry and Clinical Neuroscience, vol. 242, no. 5, 1993, pp. 314-7): Antibrain antibodies have been found in the sera of schizophrenic patients, but not in normal controls. These seem to be directed against brain centers affected in schizophrenia. The rest of the article is at: http://www.whale.to/vaccines/damaged.html So I am wondering, since my son's CBC showed he was fighting off an infection, is it possible that even though he tested negative for Pandas that he could have developed the TS as an immune response to his October vaccines? I know that there is scientific proof connecting MMR to Autism, but I have yet to find anything definitive connecting TS to immunization. It seems like such a long shot.

Sky, Welcome! This is a great forum and there are loads of people here that are very helpful. I wish I could help you, but I'm actually posting because I am kind of in the same boat. My son is 4 and I gave him the chickenpox vaccine last October (along with Comvax) and he began exhibiting behavioral changes within a month and started ticking in late December. I was told by a naturopath that he had a delayed reaction to the vaccine and that I should never vaccinate him again. Just thought I would share this. I'm not sure if it is true or not, or if a vaccine titer would still show that up in May? Does anyone know if there is a proven connection between the onset of tics and vaccine injections? I have been Googling this all night. I can't find any answers. Is TS on the rise? Could cases of it be caused by vaccines too? I had my son tested for Pandas and the titers came back normal. I thought TS was hereditary too, and there is no one in my family or my husband's that has had any kind of tic disorder at all. My biggest question is, do I stop vaccinating? What have you all done (with older kids who have TS?) Will vaccines always exasperate symptoms? How do you get your kids in school without vaccinating? Also, I have two more little ones at home. Do I refuse to have them vaccinated anymore, too? How many of you have discovered tics in more than one child? Caryn

C.P. I found this website. It is very interesting... talks about corn and pollen. What do you think? http://www.eklhad.net/foods/foods3.html Caryn P.S. there is an obscure forward button at bottom of first article for viewing of the second (which talks more about the pollen issue).

Yes, I have a son intolerant to corn, and I want to this as well. I also want to know if anyone has experimented with eating only plain old-fashioned corn on the cob? Does it have the same reaction as processed corn products? I read somewhere that the processed products contain sulfites and my son is supposed to be so intolerant of sulfites that I am supposed to completely eliminate them. So, I was wondering if after six months of avoidance if I could just reintroduce corn on the cob? (We are from Illinois, and corn is very popular at the end of summer.) My son just loves the stuff. Any thoughts? Does anyone know any more on the subject? Caryn B.T.W. when we took all corn products out of his diet he stopped wetting the bed! It has been three full weeks now! This happen to anyone else?

C.P. Could you elaborate on this? "The only thing that I can add is my son's Dr. said it seemed to her (from his lab work) his body was fighting off some kind of virus or something. I guess it could be from the shots he had in 2005." My son also had the titer test for strep antibodies and I was told they came back normal. I don't know how to read the report and I never asked the doctor what his number was exactly, but I think it was 100 (I have it right in front of me). My mom works as a med. recs. tech and when I got the report back on the CBC I showed her and she said that everything looked good, but something in the blood test showed he was fighting off some kind of infection. (Which the doc. never meantioned to me). He had gotten a Comvax shot and also Varicella in October for preschool. Symptoms of TS began just after Christmas, but if I really think about it, he was sniffing a lot during the holidays and didn't appear to have congestion or a runny nose. My pediatrician really didn't guide us well at all throughout this, only to send us to his recommended ped. neur. He had never even heard of Pandas. My son does not have all his vaccines yet. I have been postponing MMR. The naturopath said I shouldn't vaccinate him anymore. What do you think?

Lisa, We did not visit an allergist. I contacted all the allergists in our group (BCBS) and none of them worked with TS symptoms. We have to be frugal with our choices as we pay for our own insurance and the coverage isn't all that great. I read this and other forums and asked a lot of questions. I got in contact with another mother who told me about the Alcat and how successful it was for her. Armed with this info I went to a naturopath to see if she would assist us in having our son tested for sensitivities. The appointment proved a disaster when we discovered she had never worked with any patients who suffered from TS! (Contrary to what we were told over the phone). She wanted to put him on a blood-type diet and do a liver cleanse. We opted not to do the cleanse right away, as we were leaving for a vacation and it would probably make him feel not so great. We started the diet but saw no improvement over our initial efforts. Frustrated, I just called Alcat directly and they helped me out. They called my pediatrician to write a prescription, but he refused. Then they called my chiro and he said no problem. With a prescrip the insurance covered part of the cost. You can order the test yourself without a prescrip. The test is very pricey. We had the results back in 10 days. When we got them back we learned that five of the foods on his "highly beneficial list" for his bloodtype diet were actually reactive. We eliminated them and his ticks waned. My concern right now is how do I get him back on a more normal diet without setting off the ticks again. This elimination period is supposed to last three months for mildly reactive foods and six months for highly reactive foods. Now I'm in limbo, trying to figure out what to do next. From what I am learning it sounds like I need to do some sort of treatment to heal my son's immune system and supplements to keep him functioning so that the tics don't reappear in another six months time. Read a lot of Claire's posts. I have found them very informative. I am desperately trying to find doctors that we can work with long-term. Let me know if you find one that is really good. I did look up the Pfieffer Treatment Center that Claire mentioned in one of her posts. It is in Wheaton. They do free seminars on Weds nights and I have made reservations for a talk and have mentioned we want to learn about TS. We are going on the 16th. The center has not had a lot of success treating TS compared to other diseases, however, they have a lot of insight on the different causes and treatment options. Caryn p.s. we are using Bontech vitamins. They worked great to reduce tics in the beginning. We have greatly reduced dosage since the tics waned. They have improved our son's overall mood in addition to tics. He is much calmer with vits.

Lisa, I also have a 4 year old with onset of tics last January, and we live in the Chicago area too. So much in common! I really can't comment too much on the Pandas, but there are so many others out there that can. We did a titer test on our son after he complained of a sore throat and the test came back normal. Then I got strep throat two weeks later. It is always in the back of my mind, but I don't know that much about Pandas. Right now my son is doing great (five months after onset.) We took the Alcat test for allergies and began a strict elimination diet that really seems to be working. Who is your doctor? Mine hadn't ever even heard of Pandas. Caryn

We did the Alcat, and when we couldn't find a doctor who did it we just called the company directly. I talked to Melissa and she helped me out quite a bit. She got in touch with my Pediatrician and Chiropractor and discussed the test with them. My pediatrician still refused to sign a prescription, but my Chiro said "no problem!" With the prescription we were able to get the insurance to cover the test. I am thrilled with the results, as my son is currently not ticking at all after doing a complete elimination diet based on his test results (I'm not sure this is typical, so please don't think the same is for everyone.) My son did not test positive for environmental allergies (except toulene), only food. If you haven't seen it yet, check my post "Is anyone doing a rotation diet?" as I talk in more detail about the Alcat and the results we got. You can google their company. Their phone# is 954-426-2304. Results take about 10 days after blood is drawn. It is a four page result and a 30 or so page guide goes with it. Good luck in what you decide. Caryn

We eliminated all the things that were on Ian's orange list (Alcat results) and saw a great reduction in ticks. He always had a problem with teeth grinding and at times he would do it all day long. I don't know if you would call that a vocal or not. He also sniffed. Some people have classified that as a vocal. Ian also repeated words or asked us to repeat them over and over. I'm not sure this was a tic, after all he is only four years old. The word repetitions were always within the context of what we were talking about. He does have a very obsessive personality and is very driven, but again, I think that is more Ian than it is OCD. (We have never seen a compulsion, and we don't feel Ian's obsessions get in the way of a healthy childhood, for instance, right now he wants to learn to read, so now he is very focused on words, how they sound, how they are spelled.) He brings it into the context of daily life, asking about signs he sees while in the car, labels on food, etc... It wasn't until we eliminated completely what was on the red list that we saw the tics disappear. I have not tested whether or not they would reappear with an accidental reintroduction of red list food, but based on what I read from Claire's string I would BET they would immediately reappear. From what I understand, Alcat's orange list needs a three-month withdrawal and red list needs six months. Because Corn and Wheat are on the red list and not permanent "eliminate" list (as was yellow dye #5 and sodium sulfite) I am assuming they can be reintroduced after six months on a once every four days routine. Because Ian is completely tic free right now and because this organic restricted diet is so pricey, we are going to hold off on any additional doc visits and just see how this goes. I did read that NAET is a good way to rid the body of allergies without restrictions and eliminations, but you need something like 15-20 visits -- sounds like 1500-2000 dollars right there in doc visits. (We pay for our own insurance, and have limited coverage, so we have to be frugal). My dad also said he has a friend that got rid of a ton of allergies by seeing an acupuncturist. (The theory is that these people are highly allergic because of an underactive liver and the acupuncture stimulates the liver's enzymes and corrects the allergy problem). Don't know anything more about it, and would love to hear from someone who does. I am very interested in trying this in six months time if there is a problem still with wheat and corn. I would love to see Ian have a more "normal" life with food as he gets older. Conversely, he was very jaundiced at birth. I wonder if this is true for other kids with TS? I'll tell you one thing, I have learned how to keep from wasting food here the old-fashioned way. I think the best way to do this is get organized and put your family on a regular menu. They will know what's for dinner based on the day of the week, and we rarely have leftovers anymore. It is not easy, but I just explained to Ian that these foods stop him from ticking, and God bless the child, he understood me and has not given me a hard time about it. Faith, Did you say your son is allergic to corn too? Ian was a chronic bed wetter, and miraculously stopped wetting the bed when we completely eliminated wheat and corn.

In my research on corn allergy, I stumbled on this article about Genetically Modified Food Crops potentially killing the bee population. GM foods have been produced in US since 1996, and are now at record levels (mainly corn and soy). Bees are not the only one's dying off. I read an article that butterflies are too. They are now producing corn products with a "natural" pesticide in the DNA of the corn! http://www.sfgate.com/cgi-bin/article.cgi?...HOG5FOH9VQ1.DTL Here is a factsheet about GM foods: http://pewagbiotech.org/resources/factshee...3?FactsheetID=2