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  1. thanks for sharing your experience with tic tamer. i am glad it is at least taking the edge off of your own anxiety about the trip. i don't know if you have ever taken rescue remedy by bach...it has helped me to be more relaxed when travelling and didn't have any side effects. also, my son's tics are exacerbated by strep, likely pandas, but they get worse whenever he is sick, even if it isn't strep...any kind of virus or bug increases his tics. have a great trip!!! julie quote name='myrose' date='Jul 28 2009, 08:00 PM' post='35449'] Yes I did order and finally receive it. I tried it once with my daughter (supposed to have done it 3 times a day) but didn't want to do it again until I checked to see if it would interact with her topamax. I then tried it again just one time and again 0 results and being that I used it Sunday night to help her I am now wondering if it was one of the ingredients in it that started this new and strange vocal. Wish I could say for sure but I am thinking you are aware of the whole puzzle to this thing. I will say that I always try everything before giving to my daughter so of course I tried it. I have been planning a trip since last week and the plane leaves tomorrow. I do not do well as far as planes and the thought of the whole thing has had me paniced and full of anxiety over the past few days and especially so today. So I will say that its helped me in calming my system down and actually being able to swallow food. I am too scared to give it to my daughter again so I too am waiting reports from other Moms in regards to their reuslts of this. Sorry I did not have more or better news to share..... Please also let me know if you try and your results as well. For now I am just going to use it until after I get back safely. Wish it were stronger in my case!
  2. hi. in may, some of us were talking about tic tamer by native remedies...has anyone used it since then? i recently received it in the mail and wanted to check around before giving it to my son. thanks! julie
  3. hi. it was me, julie, who mentioned the spray down. our doctor recommended 1/4 cup salt to water in a large spray bottle. we leave it on after each swim and then take a bath after camp. julie quote name='swim' date='Jul 4 2009, 02:00 AM' post='34650'] Hi Chemar, You mentioned spraying with epsom after swimming. Any idea what the water/salt ratio is when mixing up the solution to spray? Do you know if they rinse off right away or leave the solution on for some time? Thanks to everyone for their comments on this. With no guide book for PANDAS, it helps to hear other people have noticed the same things so I don't feel so crazy!
  4. thanks. there is an old post from the tourettes forum about this from october 22, 2007 - a doctor usman writes about it under kim's post (sorry - not sure how to better describe where it is to you). there are different approaches and they include the antibiotics and antifungals but also involve other supplements. in summary, as our doctor described, it includes 4 steps. she stressed the timing as being very important: 1) detachment of biofilm with things like enzymes, apple cider vinegar, etc. on an empty stomach 2)microbrial killing with antifungals and antibiotics no sooner than 15 minutes later 3)clean up with fiber, charcoal, brown algae a few hours later 4)rebuild and nourish with probiotics, prebiotics, high orac ...expect die off about 21 days in... would love your thoughts on this. also, why did you switch to nystatin from diflucan? have you seen any changes in your daughter since you have taken your approach? how much azithromycin does she take prophylactically? thanks! julie I don't know what you mean by protocol. (I mean, I know what a protocol is, just didn't know there was one for eradicating strep biofilms) There was not a test to check for biofilms, but I theorized, due to my daughter's chronic strep that biofilm was a strong possibility. We used (and still are using) azithromycin for a prophyllactic Abx, because it has been shown to have the ability to penetrate the biofilm (studies done mostly in cystic fibrosis) to get at the microbes inside. I know that bacteria can cooperate with fungi and yeast in biofilms, besides Abx causing yeast infections, so we used antifungals(first diflucan and later switched to Nystatin which she is still on). This was just doing what made sense to her doc and I, not anybody's "protocol."
  5. peglem, have you used a protocol to clear out the biofilm? the doctor's thinking is that we need to break down the filmy "bad" biofilm that prevents him from absorbing nutrients and detoxing germs, yeast, etc. I find it difficulto to make sense of it all! I am new to all of this. What is biofilm? Here's wikipedia's article: http://en.wikipedia.org/wiki/Biofilm Thanks! All of you are such amazing advocates for your children! I am learning so much! thanks!
  6. my son's doctor has recommended that we start to address breaking down his biofilm and i was wondering if anyone has used a biofilm protocol, and if so, how did it work? thanks! julie
  7. sorry if this is a duplicate - i tried to post before but don't think it worked! my son's doctor recommended spraying him immediately after swimming with an epsom/water combination. i plan on sending him to camp with it and the counselors will spray him down after each swim... julie
  8. hi. has anyone found that tic tamer works?? julie
  9. hi - my son's doctor also recommended spraying him down after he swims at camp with a mixture of epsom salt and water. i sent a spray bottle and the counselor will spray him all over right when he gets out. he's six and will likely have fun spraying himself! it will be interesting to see if this mitigates the effect of the chlorine. julie
  10. hi. i haven't been on for a while, but yes, my son's tics have increased significantly over the last few weeks! this has been a pattern for the last few years and was also wondering if it could be allergy related. he does not have any typical allergy symptoms, though. julie[ quote name=myrose' date='May 31 2009, 12:03 PM' post='33588] I have read over and over through a MILLION of old posts and it seems to me that people report mostly an increase in tics during the April, May and June time (it seems these months were mentioned most) I would guess this to be allergy induced tics. I question this because coming off from Topamax now and having the tics come back really bad could give me a good place to start in finding her true triggers (if any) (aside from MSG anyhow) Also thinking back to last year and going over some notes I had taken....it was Mothers Day weekend when it got SO BAD we resorted to Topamax. The only thing we never did was the allergy testing. This could be a good place for us to start?? The docs ordered x-rays for her constant nasal congestion during these months.....but nothing was swollen and it was left at that. (aside from script for Nasonex) we stopped using that though..... What do you all think? Are these 3 months (or somewhere inbetween them) the worst for tics when it comes to your children? Lastly, what is the best way to go about the allergy testing?
  11. thanks so much buster. do you know of any less invasive alternatives to IVIG that might interfere with this antibody? what about IgG orally? my son is currently taking immunotix by xymogen and considering IgG... thanks. julie quote name='Buster' date='Feb 5 2009, 10:59 PM' post='30006'] Hi Julie, I'm not sure there is a great answer to your question. The current research indicates that the ASO and AntiDNAse B antibodies are not the problem. A rising titer in either of them indicates a prior strep infection, but a falling titer or stable titer does not seem to mean a lot (even if elevated). In most people, propholatic antibiotics do keep titers low by reducing the spread of any bacteria that invades to the blood stream -- however, if the person is really "allergic" to an exotoxin of strep, there can still be very high/elevated responses since propholatic antibiotics reduce the spread but not the existance of strep. The best research I've found thus far indicates that the likely culprit in PANDAS is a very different monoclonal antibody that targets GlcNAc (a carbohydrate) (see research by Kirvan and Cunningham). For reasons not understood, this antibody crosses the blood brain barrier and causes inflamation and/or interferes with dopamin reception in the basal ganglia (at least that's the theory). The thought is that IVIG interferes with the creation of this antibody or the new IgG identifies it as autoimmune and suppresses the antibody. Unfortunately, there doesn't seem to be any way to test for this antibody so the objective of prophylactic antibiotics is to try to minimize re-infection even if recolonization occurs. Colonization means that the bacteria is growing on the skin or throat. Infection means that the bacteria has invaded the blood stream. Regards, Buster
  12. the DAN doctor is guiding us regarding all supplements and medications as well as recommending testing (e.g., urine, stool). she is my go to person for the moment and i like her because she walks on both sides of the street - traditional and alternative, integrative. it is expensive. my son is 5 1/2 and first started with tics 2 years ago in the context of strep. he also had sensory and social pragmatic issues -- through supplementation and dietary changes and likely maturation, his sensory and pragmatic challenges are much improved. i think that his custom amino acid blend has been very important in the social arena. after having a very quiet year, he started to suck his shirt constantly last spring but that was it. over christmas he started to tic and manifest ocd symptoms -- probably in the context of strep but hard to always tell because he often does not have typical strep symptoms. we are just now beginning to start more aggressive antibiotic treatment and propylactic use due to his ocd repetitions. so, it is hard to tell what works and if it is really helping...i kind of think that since we have been healing his gut and body for a while now, we have been emptying his bucket, if you will, so that his manifestation of pandas symptoms is less severe than it might otherwise be...honestly, i don't know and i watch and worry about him reving up at any time. as a behavioral psychologist, and not to sound obnoxious, i trained at one of the best schools in the country and a few of the best hospitals and treatment centers in new york city, i am weary of the majority of psychologist and psychiatrist's acceptance and real knowedge and understanding of pandas. that is not to say that you can't luck out and find a gem, or someone who specializes in pandas, but even my colleagues, and myself before my son's issues, are incredibly uninformed. i guess as a mom and a psychologist i would turn over every stone before trying the antipsychotics and stimulants. the side effects can be very scarey and harmful and i would first want to make sure i research and attempt to understand as much as i can about other options before going down that route. does that help at all? i know it helps me to have this forum and to know that i am not alone (because that is often how it feels!). julie
  13. hi everyone. what would you recommend for clearing the strep antibodies? does prophylactic antibiotics help prevent strep but also continue to help clear already elevated levels of antibodies from a recent episode of strep? thanks! julie
  14. hi. it is GREAT that you have been so careful to notice the changes and to link them to strep. many parents wouldn't have been able to do that. my recommendation is an integrative, biomedical pediatrician. often times they are DAN trained (defeat autism now). my son does not have autism and isn't on the spectrum, but his biomedical doctor has a tremendous amount of experience with pandas and healing the gut, etc. you might have some luck if you find a local DAN practioner. being a clinical psychologist myself, i would not recommend that route for pandas but seeing a cognitive behavioral psychologist (a clinical psychologist with speciality in cbt) could help you to manage your and her reactions. personally, i would first try to get on the right track medically. hope this helps!
  15. this is a very interesting article and a good name for me to have as we live outside new york city. thank you! julie I have not heard of anyone using this drug. Here's a link http://en.wikipedia.org/wiki/Vancomycin . Wikipedia says it is a "last resort" drug and can only be given IV, not absorbed if given orally.
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