kim

New flu shot adjuvant coming soon? bolding mine http://www.newswithviews.com/Tenpenny/sherri6.htm and

This neurologist has a daughter with TS. The first part was kind of uninteresting. Diagnostic criteria, etc. What was interesting, was the genetic identification, that he has worked on. That info is right near the end. I wish the chart was more clear. If anyone listerns/watches, can you figure out, what the headings say at the top of the chart? It's blury, and I can't read it. He identifies genes that are responsible for cells involved in infection. http://www.ucdmc.ucdavis.edu/mindinstitute...vents.html#2005 What’s New in Tourette’s Presenter: Frank Sharp, M.D. Affiliation: UC Davis M.I.N.D. Institute Date: August 5, 2005

Juls, I think the muscle tone issue you are describing is referred to as hypotonia. Very common discussion on autism forums, and yes I have heard of parents discussing supplements that are particularly helpful for the condition. The sensory issues, like the need for deep pressure, I think is quite common too. My oldest son has the pressure seeking need, that you are talking about. It's only an issue, when he has a tic flare though. Here's one article that talks about it. http://www.nlm.nih.gov/medlineplus/ency/article/003298.htm kim

I think this would be a good thread for the proposed "stickies" This is another one with good info on anti biotic use for PANDAS symptoms http://www.latitudes.org/forums/index.php?...c=2458&st=0

Warning...rambling, disjointed post with repeat info (but I am trying to make a point here)!!!! I'm going to hit send, anyway, before I chicken out http://users.rcn.com/jkimball.ma.ultranet/.../Apoptosis.html Cells of the immune system The formation of the proper connections (synapses) between neurons in the brain requires that surplus cells be eliminated by apoptosis and As cell-mediated immune responses wane, the effector cells must be removed to prevent them from attacking body constituents. CTLs induce apoptosis in each other and even in themselves. Defects in the apoptotic machinery is associated with autoimmune diseases such as lupus erythematosus and rheumatoid arthritis. Michele, For the last 17+years, my profession has been sales. I don't sell anything related to the medical field either. Zip, zero, none, as far as medical experience. It's really important to me, that others realize this. I have made many inaccurate statements on this forum. One that comes to mind, is, I said something like "I'm sure my youngest son had elevated titers for a long time." I said that, because he was said to be a strep "carrier," many times. I now realize, like many harmful bacteria, they can live quite harmlessly among other naturally occuring bacteria within our nasal passage, gut, where ever, and not be invasive. He would not have necessarily shown any antibody formation due to a "carrier" status. Remember, when I talked about new strains s pnemoniae, colonizing, when the old ones were eradicated by Prevnar? This does not mean that the carrier, would necessarily become ill, but it can be passed to others and become invasive in that person. This is known as a "community aquired infection." You have people coloninized with a bacteria that has not previously been around much. When it hits the wrong person, they get sick. So, when you hear of people with meningitis, it's important that they identify what bacteria caused it. There may be several people that had been exposed to that person, that don't become ill, but they DO harbor the same bacteria. What determines who becomes ill, is their state of health. nutrition, lack of sleep, stress, many many things. Now,lets say that you have been on many anti biotics. A lot of the good bacteria in your body, may have been wiped out, leaving empty space, where other harmful bacteria can settle in. This is why the pro biotics are so important. You want to get the levels of "good" bacteria back up, and avoid those empty spaces, and leave less room for harmful bacteria to invade. There is another problem with all of this. If a pathogen, that hasn't been around much, starts popping up, we don't have as fast of an immune response. Infection fighting cells have memory. Once they have "seen" a particular invader before, they mount an attack more quickly. So, if you have a new invasive bug going around, you may seen people become more ill, than a widely cirulating antigen. When you run into a carrier of a bacteria/virus, and pick it up, you may have a response where your immune system produces antibodies without you ever knowing it happend. You don't become ill, but you got a "boost" none the less. That is one of the reasons why the chicken pox vax stinks, in my opinion. We count on that "boost" by running into the antigen in the community. When you get that boost, it keeps the infection from becomming active again. In older people, it usually reemerges as shingles. This probably has not become a huge problem yet, because the first vax given to the kids, did not work as effectively as they had figured. If the 2nd one does, now we will no longer receive our boost, and will probably see more cases of shingles emerge possibly in younger people. Did you guys know, there is now a shingles vax? It's just a potent varicella (chickenpox) vax. It may be highly recommended for adults in the future. Now, is a case of shingles in an older person more problematic, that the vast majority of chicken pox cases in young children. My bet it, yes. So, what choice will we have? Now this part is just me thinking out loud.... This whole thing, does get back around to strep. You know how it has been reported that kids develope symptoms with exposure only. The same concept applies. I guess the body is forming an antibody response, without the proof of invasive disease. Maybe. Dr. Yasko thinks that strep actually is being "masked" from the anti biotics, due to it taking aluminum into the cell with it, and it sort of hides. There is talk of biofilm, right now. This is where a protective coating is formed around a bacteria. Now, my question is, why do the symptoms stay masked with anti biotic use only, and why is one more effective than another, The info on zith. makes sense to me, but because of the inflammatory control. If a neutrophil (an infection fighting white blood cell that eats the invader) hangs around too long(this dysregulated function can be caused by the bacteria that required it's presence in the first place, or something else ), it can cause excessive inflammation. Maybe zith is causing this neutrophil to commit suicide (apoptosis) and it keeps the damage, from the inflammation, from being a problem. So, they recommend a full dose of azith, to try to eradicate the majority of the bacteria that is causing the neutrophils to be called to the site, then a low dose, to keep it in check? But, it doesn't appear to me, that the main problem is solved. It hasn't really eradicated the strep (if the symptoms return as soon as the zith is stopped), Now, let's say that zith. works for a while and then stops. Why would that happen? Has it happened to anyone here? One child, I don't know if it was Andrew or Airbucket's son, showed inflammation around the basil ganglia on a MRI, right? If it was Andrew, I know he hasn't had it, if it was Airbuckets son, I would like to know if he has been prescribed zith? I would think in that situation, zithromax would be clearly indicated as something to try. Even if it only deals with the inflammation, and I would think a Dr. would be very intereted to see if these improvements happen, and what happens when stopped. I couldn't find any studies on the theory regarding zith, in conjuntion with strep A. But then I realized, it probably has not been done, as the theory of PANDAS, itself, has not even been widely accepted. Alison, you were right. This effect of zith is mainly being looked at right now, in regards to respiratory illness. They are trying to see if it may reduces inflammation in disease like asthma, CF, and others. If this is proven to be a problem in relationship to strep, what has changed? The strep, or the children. Is the blood brain barrier compromised? Due to what? Are the neutophils functioning abnormally, why? More questions from this study. http://news.ufl.edu/2007/02/06/strep-tic/ and If I'm reading this right, out of 693 children, 180 (26%) displayed abnormal symptoms, with 2 or more strep infections. 118 (17%) displayed abnormal symptoms with none, or 1. This is a total of 298 children, out of 693 exhibiting something, that they found unusual. That seems like a pretty high number to me. I think all they were really looking for was to see if there was an increase, which they felt there was, and correlated with a previous study that Dr. Nell was involved in. I'm sure the vast majority of these symptoms resolved or were just not significant, as far as life altering. But I have to wonder why it's happening at all. Off, in another direction.....we have gotten back to talking about PANDAS as not being part of the TS spectrum. Ronna has posted articles, talking about them NOT being separate syndromes. So, is PANDAS just an additional problem, where all kids with tics/ts, don't have the antibody/brain response, but had the condition, which sets up tics and comorbid conditions anyway, or a whole different subset? What can be theorized, if they are NOT separte syndromes? I guess this is quite enough for now. I wanted to include this abstract Problems with carriage and anti biotic use ....had full study but lost when old computer crashed. I believe the Dr,s especially ID docs are reluctant to prescribe based on this. But they have no problem with vaxing for s. pneumonia? Why don't the same concepts apply? Do they have that much faith, that we can continue to vaccinate away harmful microbes? Has it not been proven, that some of the emerging strains, after vax, are harder to treat? http://www.pidj.com/pt/re/pidj/abstract.00...#33;8091!-1 A snip from the biofilm article Dr Usman spoke of recently, and posted here The other theoretical issue is that the > > biofilm may be holding on to toxic metals such as aluminum and lead.

Michele, I thought you were talking about your 9 month old, which the info I posted would be more relevant to. I guess I would ask Dr D. if the incidence of disease in your area is viral or bacterial, and if he is aware of which serotype. If he doesn't know, I would call the health dept. and question them. If there is a high incidence of a type, included in the vaccine that is being recommended for your son, then I would take that into consideration, along with the vax ingredients and your sons state of health, overall. The family history of autoimmune disease and the questions regarding vax, make me wonder too! BTW...this may not be a totally accurate statement. It depends on the period of time that you're looking at, and which study you read. That's why I always say, don't take anyone's word for it. Look up as much info. yourself, as you can I wanted to include this "flu" article too for emma, not sure how much different it is from the last one? www.bmj.com/cgi/content/full/333/7574/912

emma, read this. It may help give you some prespective on the #'s you will see reported. There is so much involved in the marketing of these things, it's hard to separate the true benefit, from the hype. http://www.healthychild.com/flu-vaccine-studies.htm www.bmj.com/cgi/content/full/333/7574/912 edit to include article from post below

Michele, I am only assuming that this is the same mechanism that is thought to be beneficial in relationship to PANDAS. You honestly have to read these studies, very carefully and seach the terms that you don't understand. It may take you 3 or 4 attempts. Apoptosis, preprogrammed cell death (I think the article states that) . That doesn't sound like a good thing, at a glance, but it is a process, when working properly, is a neccesary function of some cells. If I were you, I would take the article to the Dr, point out that you are aware of the issues of resistance, but ask if Andrew's health, may warrant the benefit. The article that I posted, I believe was showing that this process was not found to be beneficial when zithro was combined with stain/strains (?) of infectious pneumonia in this study, so I guess, I would go to Pub Med or Google and see if I could find any studies, relating specifically to StrepA. Ihave had so little time to spend on this, but here is another page of articles. Don't know if there is anything helpful here or not. edit Shoot...can't find it, willpost asap

Michele, I found a couple of threads for you to read, that might be helpful. Again, I like studies and links within these threads, a lot better than personal opinions or experiences. What you need to remember when reading, is that there is not a meningitis vaccine per say. There are vaccines developed to reduce the incidence of meningitis caused by a certain strains of bacteria. These two threads deal mainly with HIB and Prevnar, which are designed to reduce the incidence of Haemophilus influenzae type b (Hib) and S. pneumoniae. Apparently, Menactra, which has only been recommended for older children, is about to be added for, I believe 2 year olds. We are in a very difficult situation. If we suspect viruses, bacterial infections, metals, etc. can have a negative impact on our childrens health, most likely caused by a genetic predispostition, then we have to try to figure out, the best course of action, with each individual child. The only way I know of, to make this decision, is by knowing something about the disease, what effect the vaccine has had, how likely my child is to contract it, and what treatments are avialable, if they do. From what I gather, as the incidence of Hib decreased, the incidence of invasive disease caused by strains of S. pneumoniae, increased. While meningitis caused by Hib decreased, the overall incidence did not. Hence, the addition of Prevnar. Now, we seem to be seeing an increase in staph (and other strains not included in the current vax), due to lessened strains of s pneumoniae included in Prevnar. I feel that once you start the process, you feel further pressured to continue, as vaccinating for one, increases the risk of another. What ever you decide to do, at least you will know, that you informed yourself. There are no guarantees, no matter what you decide, Michele. All I know, is that I'm angry at myself, for not having any idea, what I was vaccinating my sons for, and why. If I had tried my level best, regardless of the outcome, I would feel better about all of this. Before I start repeating myself (again!) I'll just give you the links Hope this is helpful in making your decision. http://www.mothering.com/discussions/showthread.php?t=503552 http://www.mothering.com/discussions/showthread.php?t=232521

It is very very very hard to get a medical exemption. For anyone with tests, which show a dysfuntion of the immune system, hold on tight to your documentation. CHOP proposals......... http://www.icpa4kids.org/wellness/0038.html (1) requiring vaccination of all nurses and other health care workers as a condition of employment; (2) passing laws to facilitate prosecution of parents of unvaccinated children for economic damages when vaccinated children contract vaccine preventable diseases; (3) routine posting and publishing of lists of unvaccinated individuals in public places in communities; and (4) prosecuting parents who homeschool their children for child neglect if they do not vaccinate them.

I wasn't going to post this yet, but reading Emma's remark on the other thread, I thought I would anyway. There is a lot here, including the question of whether grapeseed extract would even be bad in a PANDAS situation. This is important for people who are thinking of, or using Bontech vits. I just started looking at this last night, but it looks like the mechanism by which azith modulates, is totally different. There still is the issue of high IL12, but I really am SO unqualified to make any determinations. These are simply things for discussion, and questions only a Dr. who understands all of this, can really advise on. http://jac.oxfordjournals.org/cgi/content/full/46/1/19 Emma, I can't get the full article...but thought of you regarding this one. Interestingly, there was on that talked about strep induced arthritis too. http://www.ncbi.nlm.nih.gov/sites/entrez?D...Pubmed_RVDocSum

Michele, The coke u 10, is Coenzyme Q10 (CoQ 10). Just google it, and you can see what it is used for. Many feel that this is a really good supp. Probably something many of us could benefit from. It is not cheap, though. Do you have any idea, what your Dr. is basing the chelation recommendation on? Did he mention any test that indicated a heavy metal problem? Was aluminum mentioned in relationship to strep, or EDTA (sometimes used to chelate aluminum)? Does he feel, mercury/immuniztions were part of the problem? I read the link that you provided for your Dr. Since he speaks at conferences, I felt like you are lucky to have found such an involved DAN. It worries me, that there are some, that just have a minimal understanding of all of these issues, and still "treat" kids. So many people are working on this puzzle, but there are many many unknowns at this point. I think the phrase "first, do no harm," still applies, and if you are not comfortable with something, don't do it, until you are! I would print an article, that spells out some of the concerns or side effects of Actos, and point blank, ask him, how long he has been using it, in children, and what makes him comfortable with it. How many children has he seen, with PANDAS type symtoms, remit, with the use of Actos. Just suggestions. Hey, I have been doing some reading on Azith. I think I have a little idea on it's modulating effects. BUT, as usual, I can't leave it at that, I have to dig into stuff, that I don't have a prayer of understanding, so I will post it on a seperate thread, as soon as I'm sure that I can confuse everyone else too! Deep breaths., and one step at a time Michele. Way to go, with trying to find the best help available for your son and helping all of us in the process, with your posts.

Since Cheri mentioned this supplement along with the grapeseed extract, it caught my eye this morning. http://www.nutraingredients-usa.com/news/n...ence-pycnogenol

fiore, What great info/advise. Thank you so much for reporting your sons progress. Can you tell us what tests the DAN did, and where they were ordered from? That's always helpful. Kim

Alison, I lost your question on the other thread, but I think you asked if my boys had an increase in tics with Bonnies vit. Neither did, but my oldest son said his heart was pounding when we got up to around 15? I guess it could have been a sensitivity to an ingredient, or I have kind of suspected, not utilizing the vit B. I started my youngest son on an individual vit B. His facial tics did decrease, but he felt hyper, again maybe a problem with B instead of P5P, yet decrease in tics, so I jjust don't know Neither of the boys use full dose. Oldest settled around 10-12 (and he's a big boy, now almost 6'1 and about 170 lbs!) and youngest is taking around 8. I would like to see him take more, but I also give him extra biotin, fish oil, enzymes, magnesium, etc. There are only so many, I can get into him in one day, especially since he never really has a full stomach, due to the "grazing," he does, and his limited diet. About the azith and mag, I learned that lesson the hard way. My son probably would not have gotten that first staph infection if the dermatologist would have checked (I brought all of my sons vits with me) to see that cal and mag will diminish the effects of doxycycline. I know they can interact with orap/pimozide, certain blood pressure medications and azith. I'm sure there are others. These are not always easy to find. Sometimes, you have to check several sites. Most articles say to take at least 3 hours apart, if I remember right. I'm a little concerned about the use of the Bontech vits for your son now, in light of the grape seed extract. I see they have 70 mgs/per 10 vits. When I checked the supplements on a few sites, it appeared they were 100 mgs, so the bontech vits are probably a high enough amt. that you will want to consider if this could be harmful to your son. Emma1, kicked up a good point there.

thanks emma, I totally agree, a reg staph infection, is not that big of a deal. My son did respond to the anti biotic for the 3rd infection quite well MRSA or not. Obviously, I don't even know if the 2nd one, by his mouth was staph for sure. It could have just as easily been strep, and an antibiotic was not even required. Staph has not been something that paniced me, and I know it can resolve on it's own. My biggest fear with this whole thing, is the rate at which the MRSA strains appear to be colonizing and for the children who recently died, invasive. As strains of s pneumoniae are being eradicated, and replaced by non vaccine strains and staph. The replacement with the MRSA type, in this study makes me sick. There are many many published studies, showing staph increase, along with replacement serotypes since the introduction of Prevnar. What will happen when the 13 strain vax (as opposed to 7 now) is widely used. They know what's happening here, and personally, I think it's criminal I bet the labs are smokin, seeing who can come up with the staph vax'es the quickest. This has truly become a self perpetuating business. Results. A total of 230 charts were available for review. The mean age of the patients was 4.0 ± 3.6 years. Of the pleural fluid cultures performed, 32% (69 of 219) were positive. An additional 27 patients had a cause identified by blood culture. The first penicillin-nonsusceptible Streptococcus pneumoniae was identified in 1995, and the first methicillin-resistant Staphylococcus aureus was identified in 1998. After the universal use of the pneumococcal conjugate vaccine, 3 major changes have occurred (1999–2000 vs 2001–2002): 1) the number of patients admitted with empyema (per 10 000 admissions) has decreased from 23 to 12.6; 2) the prevalence of S pneumoniae has decreased from 66% (29 of 44) to 27% (4 of 15); and 3) S aureus has become the most common pathogen isolated (18% vs 60%), with 78% of those being methicillin resistant. Here's another.....how many difficult ear infections in kids, and antibiotics, are being used to deal with this? And the majority of parents will have no clue http://cat.inist.fr/?aModele=afficheN&cpsidt=15841788 Quote: A trial with a 7-valent pneumococcal-conjugate vaccine in children with recurrent acute otitis media showed a shift In pneumococcal colonisation towards non-vaccine serotypes and an Increase In Staphylococcus aureus-related acute otitis media after vaccination. We investigated prevalence and determinants of nasopharyngeal carriage of Streptococcus pneumonlae and S aureus in 3198 healthy children aged 1-19 years. Nasopharyngeal carriage of S pneumonlae was detected In 598 (19%) children, and was affected by age (peak Incidence at 3 years) and day-care attendance (odds ratio [OR] 2.14, 95% Cl 1.44-3.18). S aureus carriage was affected by age (peak incidence at 10 years) and male sex (OR 1.46, 1.25-1.70). Serotyping showed 42% vaccine type pneumococci. We noted a negative correlation for co-colonisation of S aureus and vaccine-type pneumococci (OR 0.68, 0.48-0.94), but not for S aureus and non-vaccine serotypes. These findings suggest a natural competition between colonisation with vaccine-type pneumococci and S aureus, which might explain the Increase in S aureus-related otitis media after vaccination.

Very interesting reading regarding strep and gut bugs. Could negative swabs be explained by this, with ongoing elevations in titers? I am writing this to clarify information that is circulating regarding the biofilm theory that I presented to the Defeat Autism Now Think Tank last week. True Health Medical Center: "Potential Implication of Biofilm Formation in Patients with ASD", Presented to the Defeat Autism Now Think Tank, Oct. 11, 2007 I presented a theory about the implications of biofilm production by resistant strains of bacteria/fungus in our ASD patients who have persistent dysbiosis. The literature search that I conducted with the help of Teresa Conrick, MS and Sonja Hintz, RN was quite convincing. The abnormal production of biofilm by resistant strains of microorganisms may be a possible etiology of why many of our patients who do not have positive stool cultures for yeast or pathogenic bacteria do well when placed on antifungals and antibiotics, yet relapse when they stop. The biofilm produced by these resistant organisms can only be seen by electron microscopy and makes it difficult to culture these bugs. This theory might also explain subtypes of our ASD subpopulation who have abnormal behaviors, such as head banging or agitation, that seem to be gut pain related, yet again have negative studies. The third subset that this seems relevant for is the group of children that have recurrent strep infections, OCD, perseverative, or repetitive behaviors who get worse in the spring and fall, yet may not test positive for strep. Why do so many of our ASD kids have persistent dysbiosis? This is my theory. We all know that the quality of our air, water and food is not ideal and contains numerous toxins and pollutants. Our children have a genetic susceptibility in their ability to handle this toxic burden. Research shows us that resistant organisms tend to grow in toxic, hostile environments, and after numerous rounds of antibiotics. They maintain their viability by producing a polysaccharide matrix that protects them from the hostile environment in which they are trying to survive. This extracellular matrix is called biofilm. Our normal flora also produce a natural biofilm, but resistant organisms produce their own biofilm which then takes over, preventing the normal flora from flourishing. Experiments done in vitro show that this polysaccharide matrix is negatively charged, and that it is held together by positively charged ions such as Ca, Mg, and Fe. Iron seems to play a big role in how these bacteria evade the immune system. Further work on VRSA/MRSA and pseudomonas biofilms in vitro indicate that this biofilm may be penetrated by using a combination of EDTA and an antibiotic; the studies used Vancomycin for Staph and Gentamicin for Pseudomonas. The protocol that my staff and I developed was presented in its infancy at the October 2007 Think Tank. The Defeat Autism Now Think Tank is usually a forum where ideas are presented for discussion and further research. This protocol was not discussed in great detail (15 minutes was allotted for this discussion), and it was not meant for wide distribution at this time. However, Dr. Bradstreet presented it in his talk on New Advancements and clinicians and patients from all over the world are now asking for our protocol. However, let me start with a few caveats. First of all, this is brand new. We have used this approach on about 60 patients. The first two were Teresa's and Sonja's children - one with ASD/self injurious behavior and one with colitis, no ASD. Both initial patients are doing well. However, this treatment has to be individualized for each patient's unique constitution and ability to handle both die-off and detox type reactions. From our other patients we are seeing a variety of responses from decreased hyperactivity and stimming, to increased agitation, to no response. Of course we may have a few bumps along our journey to recovery. The big bumps with this approach are related to awakening the immune system to these organisms which it has not been recognizing. The body finally sees the bacteria or the candida that has been there creating other types of havoc all along. Acutely, patients may experience vomiting, diarrhea, high temps. Rashes may appear, especially if the die off is sudden. The other theoretical issue is that the biofilm may be holding on to toxic metals such as aluminum and lead. As this toxic biofilm degrades heavy metals may be released into the gastrointestinal tract for excretion. Our protocol was developed to address this possibility. I urge all of you to have patience and wait for us to gather more data on this approach so that you are presented with the safest, most effective protocol. Remember, your doctor should implement this approach gradually with the unique needs of your child in mind. Because of the possibility for negative side effects, and the need to closely monitor the patients, and the possible use of pharmaceuticals, this treatment plan should be implemented only with the help of your physician. True Health Gut Biofilm Protocol™ Step One: Lysis and Detachment of the Polysaccharide Matrix (empty stomach, 30-60 min prior to Step 2) -Use of specific enzymes. (these are being refined and developed, as the enzymes we have available at this moment are not ideal) -Use of a chelator that can grab hold of minerals in the Matrix. (if not implemented appropriately this may cause mineral depletion in the body - do not attempt chelation without proper medical supervision) Step Two: Target the Microbe - Consider using antibiotics, herbals, or homeopathics. (our office has had extensive experience with all three modalities, and have found that the choice "depends upon the kid". We are also researching a fourth modality that looks quite promising for eradicating these pesty organisms. Step Three: Clean Up (This is the most crucial of all the steps. DO NOT SKIP!!! Give 1-2 hrs after Step 2 if possible or at night) -Here we use anything that can bind up the matrix (mucus), by products of die off, and potential metals in the gut. Products include activated charcoal, alginate, clays, algaes, zeolites,.... we like pectin the best. Sometimes we use all of the above. Other important factors -Probiotics, of course. -Anti-inflammatory agents such as EFA's, antioxidants, curcumin... -Natural fermented foods such as kefir, kombucha... -Healthful, non toxic foods (hormone- free, antibiotic-free, organic) This is a short-term treatment plan, we are using it for about 2-3 months. This protocol is still being developed and is not fully defined. We have only been using this for about 6 months in a specific subgroup of our patients. Remember, our ultimate goal is to restore the normal flora and the normal biofilm. This takes time and the process is slow. It took years for some our patients to reach this point, it may take time to reverse. With hope for a better future for our kids and grandkids, Dr. Anju Usman Medical Director True Health Medical Center 603 E. Diehl Rd. Suite 135 Naperville, Illinois ™True Health Medical Center, June 2007 “…the autoimmune process can be arrested if the interplay between genes and environmental triggers is prevented by re-establishing intestinal barrier function…” Mechanisms of Disease: the role of intestinal barrier function in the pathogenesis of gastrointestinal autoimmune disease. (Fasano, 2005)

Cheri and Emma 1, Hope you guys are reading. Cheri, you had mentioned once before, that you hoped that none of the supplements that you had used, prior to your son's crohn's dx, had contributed to his condition. That remark, sort of lingered. My youngest son's gut issues, makes me leary of future problems with diabetes and IB or crohns. As you said, the incidence is on the rise, along with other autoimmune issues. After reading all of this, I feel pretty good about the fact that a supp like grapeseed would not "cause" an autoimmune condition. It looks to me, like a pathogen (like strep bacteria) would cause the elevations of INFy. Since it looks like grapeseed extract increases INFy, I can understand why it wouldn't be wise to use it, in an autoimmune situation where it's already high, but feel pretty confident, that it wouldn't "cause" the condition. It looks like the modulation effects (grapeseed ext) would be btwn IL 10 and IL 12 and the TH1 and TH2 immune response . The info, that I read on crohn's was confusing though. Several studies looked like crohns is provoked by an overactive TH1 (cellular) response and IL 12 was high, along with an over expression of interferon gamma (IFN-γ).These same two markers are high in PANDAS. But, in a few, I wasn't really sure? Maybe some were older studies? Probably not anything new to you, Cheri, but I thought this may help others understand "modulation," and a better understanding of why grapeseed extract may not be wise. It really helped me. I remember Dr. Walsh (Pfieffer) making a statement about most psyc meds being powerful antioxidants. This article mentions SSRIs suppressing INFy...wonder if that's part of the reason why improvements are seen initially. http://www.primarypsychiatry.com/aspx/arti...x?articleid=561 This one mentions the IL12 in strep http://www.jleukbio.org/cgi/content/full/80/1/1#B171 the TS and PANDAS info is about 2/3 of the way down the page grapeseed articles http://www.pubmedcentral.nih.gov/articlere...gi?artid=119947 and http://www.nutraingredients.com/news/ng.as...din-skin-cancer Source: 233rd national meeting of the American Chemical Society March 25 2007, Abstract: AGFD 011 "Dietary grape seed proanthocyanidins inhibit photocarcinogenesis through prevention of UV-induced suppression of immune responses via induction of interleukin-12 in mice" http://cvi.asm.org/cgi/content/full/9/2/470 i would love to know what mechanism azith is supposed to modulate? Does anyone have any references for that?

http://sciam.com/article.cfm?alias=depress...;modsrc=reuters

brink, Many kids who are intolerant to milk, also have soy sensitivities. I am not a fan of processed soy anyway. Could I ask how much the rash seemed to correlate with the deterioration in behavior/increase in tics?

michele, I had read that before, but only the abstract. I tried reading, but it kicked up so many thought and questions. I will get back to it, as soon as I can. . You have that right, but I am getting better at reading the Dr. that I'm in front of, and knowing better, how to get what I want. There is a fair bit of psychology invoved. That approach doesn't work too well, the "higher" up you go, as in a neuro, isn't as likly to be swayed as a DO,lol Then if I can sway their opinion, I have to wonder how good they really are!

Alison, I'm so glad you got some reassurance and a Neuro who is informed about PANDAS, what luck there! You have posted about using Bonnie's vit recently. I just wanted to remind you, since they contain calcium and magnesium, be sure not to give them at the same time as azith. I hope you will let us know what you see, after your son is on them for a while. They have been very helpful here.

Michele, When my son got the first infection, it was right near the place where he had the stitches from having the mole removed. He popped it. I wouldn't have even realized what it was, except I have a young friend on another small group. He has repeated problems with staph infections (his mom also has chrons). I was very calm (freaked out inside) told my son to get in the shower, and took him to the Dr the next day. Funny thing, the site where he popped this thing, looked almost perfect by the next day. It was just a flat red spot, like 95% healed. I think the only thing we used prior to appt. was peroxide. The Dr. cultured this "healed," spot anyway. It came back from lab with the recommendation to treat with Cipro. This is why I don't think that the explaination of the infection going back into the body and not being able to be cultured, makes sense as far as your husband goes. Was he sent home with an antibiotic? What I'm most worried about, is if this bacteria just hangs out in the system and resurfaces, when you get run down. Again, since I have made the decision to not get the boys the 2nd dose of chicken pox vax, if they do get it, staph can be a problem with chicken pox. Now it seems we have these virulent stains floating around, and it worries me. Since the culture reco. was for cipro, which is a pretty heavy duty antibiotic, I'm thinking he had a hospital acquired stain, which would probably be one of the tougher ones (yet it healed quickly, and I didn't give him the cipro, we used bactrum). We have an appt, on Monday with a nurse practioner. Couldn't see the Dr. for 2 weeks (I wanted to talk to him about the porphyrin test) but we need a referral renewal for the chiropractor. I'm going to find out what strain it was, from previous culture, then see what I can find out about it. Since the next two infections, looked so much different, were they even the same strain? They were not cultured, so I can't compare. During my "fit" about the pneumoniae vax causing an increase in staph, and 68% of them (in the one study being MRSA stains, no less) my husband was telling me that a lady he works with, had to leave work to go with her daughter and grandaughter to the hospital. This little girl had a bad staph infection on her arm. I guess 6 kids in her day care, had some form of it. I just told the boys, that I'm going to buy them each a small first aid kit to keep in their gym lockers. I told them, if they so much as have a scratch, I want it covered, until is at least scabs over. We used borage oil and zinc (cream) when my son got the spot by his mouth. I'm thinking I will have them use that for anything superficial. I had left the pediatrician, after being told "not to waste their time," with talk of chiropractors and vitamins for treating tics. One Ped was sweet (in hind site) he even ordered a couple of tests for me. Funny, when I mentioned a lot of what I had learned came from Autism reseach, he looked horrified, then sent the lesser of the two (in the warmth dept) in to deal with me. So I tried a female family practioner who was pregnant. She prescribed the "steroid burst" for this stuff on sons face, even thought I told her it was NOT poison ivy. Pharmacist/friend agreed it was staph. About azithromycin, I requested it, recently when my youngest son got strep. He was doing some eye rolls, and I didn't want to go through the amoxy first, then something else if it didn't clear. I worry about his gut, more than anything. The strep cleared up without any real problems. As long as there is no clear cut symptoms of PANDAS, I think I will stick with amox. in the future for strep. If there were evidence of PANDAS, I would want zithromax!

Any of the nurses on our site, please feel free to jump in and add or correct any info that you think Michele (or myself) need to know! Michele I think your friend was acting a little uninformed and childish. I have to believe that your husband was given an anti biotic post op, if for nothing more than prevention of infection. I am a little confused, why the first cyst, wasn't cultured though, unless they knew they were going to be treating him anyway, and didn't bother to culture. Would that make sense (Deedee?) If they told you, the second one was fine, I really don't think they were lying. You may have pointed out to your friend, since she (probably) spends a lot of time in environments where staph is more prevelent due to her profession, that it was just as well that you vacated her home, as she may have just as likely infected you I wanted to mention that noone else in our family caught this infection either. We were careful to keep the area's covered and I was careful with washing towels, clothes, bedding etc. and keeping my younger son off my sons bed for a while, as he would leave the sores uncovered at night They were mostly on the area above his wrist and he had one on his stomach (that I knew nothing about, cause he didn't tell me!) until it was healed. All 3 infections presented differently. One looked like a rash near his mouth, the one after surgery looked just like a big old pimple and the 3rd you know about. Ick. The third was really scary though. If this staph is killing more people now, than HIV infections, were we not better off dealing with the s pneumoniae? If they come up with a vax for the anti biotice resistant strains of staph, what will step in to that void? Can we really vaccinate disease away, or are we better off looking for ways to keep our bodies and immune systems stronger? Less pesticides in baby foods, cleaner air and water, better nutrition, education on these subjects? You don't necessarily need to use the most heavy duty things you can find for this either. Hot soapy water should do it. I have gotten rid of all antibacterial products around here. I do believe they are contributing to stronger/resistant bacteria. I do and did use bleach on sheets, just cause I do anyway. I think it's really time we get back to common sense in this country. It makes me furious to see kids are dying, and this resistant strain is not only found in hospitals as was more common, but more in the community now too. I have heard nothing of hyper vaccination(my phrase) playing a part in this. Don't expect to either, and it makes me angry. They are running this all over Fox and our local news too. Their best advice is frequent hand washing. How do you tell your preschooler not to put the playdough anywhere near her face? What about benches in locker rooms, excercise equip, matts, etc. The schools that take notice and bother to wash down, will probably use strong disinfectants. Don't know it thats wise at all. The surviving microbes, may just be tougher and meaner!

trubiano, You just hold on tight to good thoughts. Since your son is only 6, we have to believe that they will have more of the pieces to this puzzle before he hits the teen years. Many behaviors come and go, even with kids who aren't dealing with these conditions. Don't dwell on what very well, may never come to pass. I'm glad you thought to sign on for support! Everyone who reads this, is right there (in spirit) with you, I'm sure. Kim