optimistic3

Hello Everyone, I came across products and am asking if anyone has used them or knows of them, and results.. Our Brief History: 8 year old with sudden onset of tics (vocal & motor) about 1.5 years ago. Tics have waxed & waned-simmered down somewhat and we have learned: Definite food sensitivities (so we modified diet--No Dairy, Gluten) Step & Pandas-- Strep may have started it all, and tic increase with strep. Other than difficulties with bowels, there are no other issues such as OCD, ADD etc.. There are allergies and we have cleaned house from temperpedic mattresses (no dust mites) to air filters etc.. Supplements--fish oil, probiotic, multi and upping the B vitamins lately. I believe it's a combination of everything that has helped. We have medical professionals in our family and have researched across the board. Son always tested negative by bloods and even the comprehensive stool lab was negative. We saw also alternative practitioners. Currently: a DAN doctor suggested a specific acupuncturist, who we saw in New York City. We were advised son has a liver issue. They called it too much "win" or "wind" in body, this is Eastern Diagnosis. He also has a "geographic" tongue, as do I. This is significant to Eastern practitioners. Herbs were given for liver support. Now at first we were skeptic of the herbs and held off. But now we came across more info on the liver and it's function inculding with detoxing. By way of researching we spoke with person who recommended "Liver Life" by BioRay company. The person I spoke with was one of the most informative and knowledgable person on tics and also autism I have ever spoken with. The issue of the body's PH level was of great importance to her. She has seen first hand the positve results of monitoring the PH levels and using the Liver Life product. Once the liver is functioning properly the body will not only detox it will also absorb nutrients better. The site is: www.bioray2000.com This product is also sold through "Ours Kids" website. Another DAN MD we saw using their vitamins and supplements. I contacted Our Kids and their rep said Liver Life is a popular product buit he also recommended "Kensho" for tics. See: http://www.ourkidsasd.com/products/2911 So my questions are: 1. Has anyone used this Liver Life product? Results? 2. Does anyone monitor the PH levels by use of urine strips? The site we were told to buy them is "PH-Ion.com" 3. Use of Kensho product for tics? 4. Lastly, we never did a "challenge test" with DMSA (a chelator). We have never used a chelator because bloods were tested to be normal. The two DAN Md's did not think we needed to do chelation, but now we are rethinking the process. The other highly recommended product was NDF Plus also by Bioray. It is a more natural chelator. Any input would be greatly appreciated. Thank you.

Hello all. I want to give an update and also post some new info. Figured I would put it in this forum first instead of a posting a new topic. First, a side issue: Aside from the earlier post which focused on the tonsil issue, my son has had a "rocking" feeling when laying down especially at bedtime. This started first about two months ago. First periodically, then consistently. Checked out fine at MD's, but in August he had the neck pain and a few days later tested positive for strep. Put on antibiotics, tics lessoned eventually but rocking feeling remained. Saw the ENT specialist, see my prior post and the "tonsil" issue arose. ENT put him on meclizine (like dramamine a motion sickness med), half pill at night. This worked perfectly, but rocking comes back if he does not take pill. Pediatrician wants MRI of head-ears canal with contrast. ENT advises against it. We figured the rocking could be a tic, but it is a unique one that has stayed consistently. Any thoughts? __________________ NEW INFO: I received a few direct posts & did some research. there is a forum at Yahoo that discusses PANDAS etc: http://health.groups.yahoo.com/group/PANDAS_Support/ I looked and found this post: Re: New treatments from the NIH for Pandas "Interesting to see that NIH is now studying riluzole, a glutamate modulating agent--notonly for PANDAS/OCD but also for autism. I have posted prevously that namenda---also a glutamate antagonist---has worked wellfor my son---both for his severe OCD (likely PANDAS induced) as well as underlyingaspergers/autistic elements (improved socialization). No negative side effects withNamenda---; a study is coming out soon where they used it on 150 autistic kids withvery positive results. N-Acetyl-cysteine is also a supplement that apparently can be beneficial---byincreasingexpression of glutamate transport proteins in the brain----that helps decrease extracellular glutamate---which is toxic. Common lactam antibiotics also promote theexpression of these transport proteins--and are likely beneficial. The bottom line--it is looking more and more like excess glutamate is the problem thatcan cause OCD as well as autistic spectrum disorders." ________________________________________ Llactam antiobiotics (which is a broad range of meds-penicillins, cephalosporins etc..) work well with PANDAS along with Riluzole, and these meds also affect glutamate levels with beneficial results, has anyone more info on this & glutamate issues? THANK YOU.

FAITH, Thank you for writing. Here it is: Otherwise normal healthy 8 year old boy. Occasional strep, nothing above average until, starting in Dec 05 he had three bouts of strep. By Feb 06 he had three rounds of antibiotics. No tics until end of August 06. Sudden onset, both oral and motor. The week prior he did have shoulder-neck pain. We have learned that the shoulder-neck pain is usually a pre-symptom for a strep infection for him. Tested negative for strep at that time by rapid test and culture, but when blood work done at our request, weeks later the DNase showed his titers I believe were 600. Not extremely high, but high enough. then did antibiotics started. Our own research found out about PANDAS etc.. It seems he responded better to ceflixin as opposed to augmentin. Two differing families of antibiotics. Since then there has been waxing and waning of his tics. At the onset they were constant and involved all extremities. then they lessoned after about a month. We have learned that any artificial food coloring, high fructose syrup and certain chemical food additives increase in tics. Since my wife has allergies, our home was already very clean, but we went further. He has an IQ Air filter and we removed the small throw rug. Only carpet we have is in the basement which is never used. Also everyone got Tempurpedic beds because dust mites can not live in them. He gets, and we all do now, fish oil, we use Carlson Brand and probiotics. Installed chlorine shower filters. Also eliminated flouride toothpaste. In summer we limited any swimming pool (chlorine issues). He also has difficulty with dairy products. If he has any, then his belly will reflux. So we avoid these as well. He does take the lactaid enzyme if he has dairy and it does help him. We alos buy lactaid milk and ice cream. He has never been OCD, ADD, AHDD, that we know of. Physicians have advised there is nothing to do but ride it out. He is extremely bright boy and is sensitive emotionally. Other possible factors--he did have the MMR vaccine years back as did his sibling. We have not done chelation therapy. All his bloods, including testing for metals, etc were fine. There were many blood tests run. Nothing pertinent was found other than the DNase positive. We do not know of tic/tourette/autism issues on my or my wife's side of family. Years back I lost a parent to cancer. From that experience I learned a great deal on nutrition. Out of all the areas I studied, one diet: "Macrobiotic" was very interesting. I went to a weekend conference in 1990 and learned a great deal. What I thought was going to be weekend with health professionals and athletic individuals, ended up being a weekend with about two hundred terminally ill persons who most believed they were alive due to this diet. the famous Dr. Spock who wrote the bestselling Baby book was there because he was ill and believed in this diet. He also advised to be careful of the dairy intake, especially non organic. Point being, we also try to eat as healthy as we can. In macrobiotics you get to lactobillis and "good" bacteria that our antibiotic medications wipe out. You also get a dailiy dose of iodine and minerals from the seaweeds. We do not follow a macrobiotic diet, but we do give probiotics and we try to have certain foods with the trace minerals. We drink filtered water. We use enviromentally friendly cleaners, soap, shampoo etc. We have also thought of outside enviromental triggers. We have taken a few trips to different geographic areas in hopes there may be a change. Nothing noticeable occurred. Throughout this all, we have kept things as normal as possible. Most of the time it was either my wife or I who saw consulted directly with physicians. We were very selective and researched before we brought our son in for any examination. He is other wise a healthy happy boy who likes sports and having fun. We speak openly with him and he feels very loved by us all. We have not given supplements like magnesium or zinc. We have just tried our best to eat healthy as possible. To date we do not feel we have found any one decisive factor in helping our child. We always thought if we could eliminate strep issues, then at least his symptoms would hopefuly be minimal, or maybe dissapate. So this tonsil-adenoid issue is a new item for us to think about. I am trying to reach out to as many persons as possible to see maybe there is a pattern or other info in this area? Thanks for reading.

81 Lumberjack, Apology for not directly answering your question. I believe the answer is yes, the removal of tonsils will lower the titers eventually, provided there are less bouts of strep infection. That is the rational of long term antibiotic therapy, which we are not in favor of. But we know and have met many persons and MD's who advise of long term and a few cases of permanent treatment with antibiotics, and the results have been very positive. Theory being if no infection, then the body will not over stimulate-produce the antibodies, the titers will not rise. Hopefully you get more replies/posts.

TONSILS & TICS We have been researching since the onset of tics in our son for over a year. I too have spoken with Swedo and it appears there has been no study or survey on the removal of tonsils and/or adnoids correlating to a reduction of tics. BUT, just last week we were at an ENT specialist for the first time because our child has been getting a rocking feeling when he lays down. This is a new symptom and we are unsure whether it is related to the tics/strep/PANDA issues. Our ENT specialist, saw the facial tics immediately and we got into a discussion. He said he had a child of same age group (8-10) who had recurrent boughts with strep. The child also had tics including facial tics. Due to the strep and not due to the tics, he advised for removal of tonsils/adnoids. After surgery, the tics completely dissapated and NEVER returned. He did not know of the PANDAS study until we spoke of it. He did say that removal will most certainly reduce cases of strep but the child can still get strep, however it will be less often than it currently is. He also said the tonsils are the number ONE place for the strep bacteria to linger in and he believes that the antibiotics have difficulty penetrating inside and clearing the tonsils. We researched this- it is true. No one has ever mentioned having the tonsils removed before. Our ENT MD is getting permission for us to speak to the parents of his former patient and hopefully we can get a case history and see if there are similiarities with our child. We did find another case, a parent whose child had severe tics and then tonsils were removed about two years after onset. That child in now in his teens and tic free. We have a friend in Europe who child is autistic. The mother is a strep carrier, but had her tonsils taken out years ago. She was on antibiotics during the pregnancy. She too is now looking into the tonsil-strep connection. We are still researching and have not decided whether our child needs the surgery. The Md's are split on this issue. The difficulty here is that our child doesn't present the usual strep symptoms i.e. a sore throat. He gets a stiff neck and aching then several days later he will test positive for strep. We truly believe there is a pattern with strep and tics. Also most parents we have spoken to, we have gone to the Tourette Association meetings, and the majority of all see the increase in tics with strep. This is my first post and we have remained quiet because we have not found solid information to post. In our family we have persons in medical and pharmacological field. We have done a tremendous amount of research over this past year. We have seen top-many MDs and alternative practitioners in NYC and surrounding areas. For the first time, the tonsil issue may be something for us all. Neither my wife or I have had them removed. MDs are mixed on how many bouts of strep are required to consider the surgery. I think many children fall into a quandry here because the titers may remain elevated and the strep may still be present inside the tonsils only to repeatedly resurface. I PLEASE invite anyone to post their info and whether they or their child had tonsils removed and any correlation with tic reduction, etc. Thank you.