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Everything posted by Priscilla

  1. Funny I just got a notification from this response. I have not been on this forum in a very long time. I am so happy to report that I have a very healthy happy 16-year-old daughter who is no resemblance to the child that was in such turmoil. I will however say it has contributed to the person she is kind, compassionate and confident. I just went for an IEP meeting today which we did not even try Start one until eighth grade where things got worse before they got better but I have to say once over the hump of entering puberty things really started to balance out. She has not used one accommodation from her bare bones IEP she has good grades healthy social relationships and almost no residual OCD. I hope this gives hope to the parents that are going through this. My main advice and one of the hardest lessons I learned and she actually helped me see it was not turning her into something that needed to be fixed with all the desperation of trying to find her help she did feel like that for a time. Funny once I excepted exactly how she was whether it was going to last forever or not is when she started to get better. Sending love and good vibes to all of you and hope for a better day.
  2. So true.. well we've struggled through all of this yet my daughter is a much better person than I was at her age and we share a very special bond Sisterhood having struggled through this together and for sure having other moms the speak to that I understand has been a godsend
  3. Hello, its been a long time since I've been here..but just happened upon a quote I keep on my fridge.. Something I came across several years ago in my dark days and it really resonated with me, I've kept it... And this moment I just had, made me feel I need to share a message of hope for u. I get frustrated when desperately searching forums for anything, and u never see the outcome.. So I feel it is my duty to give u some hope. I was a regular here several years ago, my daughter was slipping from me, an 8 year old that seemed to be losing her mind, posesed even..we desperately tried everything... Pandas, Lyme, tourettes...years of antibiotics, 7 supplements a day, diet that was gluten, dairy, wheat, and sugar free (what the did I feed her?) Multiple ivig treatments, counseling...all of which this strong willed child protested..it was . Hair pulling, couldn't say certain words, no door ways , nothing passing her side, couldn't touch her, jumping spitting, grunting, violent outbursts, and all kinds of other rules her mind made that I could never even know.. So here we are..14 and a half years now.. I would love to say it miraculously got easier...but it hasn't ..as a matter of fact..this strong willed teen got worse, Bigger, stronger, and raging hormones with no period at 14 years old.. By last Jan we did what I have avoided since 7 years old..she was hospitalized for 5 days..it was necessary.. Violent and physical altercations ( with her now bigger than me!) And put on partial outpatient program for 3 weeks Instead of school.. I was fortunate to have a wonderful program available for this.. And am not recommending hospitalization because as a nurse with some mental health experience ..it often does more harm then good...u need to find your path... I'm not sure what she learned from it..as she is..as always very resistant to discussing these issues..but she did get a bit better.. And opened up a little.. And I learned how damaging my good intentions to constantly seek help for her have been...she has always seen me as trying to "fix" her..a brief conversation about this.. And me telling her I know she can't help it..and doesn't want it..but letting it go has been huge... Is it easy? Absolutely not, are there still issues? Yup..but by June if this year..period came..I we afraid..will it get better or worse? I have to say..better..things seemed to be balancing.. School was horrible last year..(8th grade) the worst yet...but we just started high school ..she loves it..grades ate great..and Ocd and tics definitely milder..but still there...is it me backing off? Puberty finally giving relief? I don't know.. But I am confident she WILL be OKAY.. Different..but ok..I just wanted to give those of you who are where we were just a few years ago hope😀😀
  4. Hi, been a while... I am back puberty is tough... looking for any teen support groups for tourettes near Orange County, Ca... any ideas??
  5. My dd seemed what could be textbook PANDAS at first, elevated strep antibodies, and fit the diagnostic critieria to a "T" but I hadn't known of any strep infection since she had strep throat as an infant. We did abx and IVIG with improvement, but not enough. Saw parents getting lyme diagnosis and recalled a bite around 3yrs old and went for testing. We had pos lyme bands an mycoplasma. This was after 4 ivig though, so I have always wondered. Regardless, treating for lyme and Pandas was basically the same. Lyme doc added zith, and was very good about listening, monitoring labs... I do credit him with our greatest success. She continued to improve under his care, and he was on the same page when we started to wean. I still have trouble understanding all the puzzle pieces though. She was bit at 3, but showed the seatbelt and other hypersensitivity prior to that bite. hmmmmmm. Then, like I said, the research on vax made the most sense. I still have many "ah ha" moments as I read more. Asthma that started as soon as I stopped nursing her???? The timing is key after the MMR too. I also had a MMR vax in hosp after giving birth, then nursed (always wonder if that has some contribution to the problem too) I read about the maternal child TH1/TH2 immunity and it made sense to me. Then, I just go back to the basics of my motherly instincts.... I did not like the way she was being vaccinated, so much so, that I left her first ped, went to Dr Jim Sears b/c he does a monthly talk to actually help parents make an INFORMED decision about vaccines (rarity at a peds office!) no bullying, or rejecting patients for not vaccinating! So, I (regretably) went forward with vaccinating the full series.. but on an alternative schedule for a while. Then I had to move to a ped closer to me, and they went back on their schedule. I do feel the time we spaced them out, may have saved her from a worse fate (like the poor children suffering from full blown autism) My child is not unlike them in that many of her early behaviours were on that spectrum. Vaccine injury also makes sense to me why children can actually "recover" fully! from autism!!!! You don't "recover" from a genetic problem. So, looking back on it from the other side (Thank GOD!) I feel there is alot of confusion and misdirection in the research. That is just my opinion, but I have to say I am so glad we are where we are, and I feel God led us here, by stripping away the layers, not getting too caught up in the details. Looking at the bigger, simpler picture about what was going on. I hope our path can help at least one of you. Don't ever hesitate to contact me.
  6. she is 10, and does't seem to be near puberty (think she will be a late bloomer:)) Hard to say exactly which vaccine, but in retrospect, the very first signs of something wrong came right after her 15 month MMR. She became extremely hypersensitive to her seatbelt. It was new, and it was so severe I knew something wasn't right, but she was so normal otherwise I really just hoped it was a phase. She also had asthma, (which makes sense that it could have also been caused by vax) so of course Dr encouraged the flu shot. After the first one, she became extremely ill within 48 hrs (high fever, sore throat...) I took her back, rapid influenza test positive! of course it was brushed off as coincidence, but I know better. She was in no way ill, or exposed to anyone ill before getting the vax. I have become consumed with educating myself about the vax and everything makes perfect sense on why we ended up with our "PANDAS/Lyme" diagnosis, which neither of those diagnosis made as much sense to me as the possibility of vaccine injury. When I changed my focus to helping her recover from injury, we were able to get well. How I got here: first- education, like I said about the effects of vax and the additives, not just mercury, but aluminum and other adjuvants affecting neuro, gut, skin....... second- prepare myself mentally... we want to heal, and balance her immune system, not continously fight off microbes that are a natural part of our environment. If her immune system can be balanced and work properly again, these microbes/viruses will not be a problem, her body will handle them like children have for thousands of years (sans the assault of microbes, virus, heavy metals and exposure to multiple disease at once that is given to our children nowadays via vaccine). I really focused on getting her off the abx because while I always hated her being on them, I felt they were absolutely necessary, and at at time she was in such severe psychosis, they probably were. At this point though, I felt they were just adding to the toxic load in her body, and I really wanted to simplify what her body had to process. I had to mentally prepare for what would happen when we decreased because she always slipped when we tried. third- diet. "let food by thy medicine" I had gone back and forth on this, but the more I realized how her gut was probably affected by the vaccine, therefor contributing to neuro/BBB issues I knew there was a connection. Many parents of autistic children can attest to this (I truly believe add, adhd, PANDAS/PANS, aspergers, autism are all then same spectrum, just a different degree/mechanism of injury, then add that to all of the other autoimmune dz our children are suffering from: diabetes, asthma, arthritis.....I feel it is all linked to the vaccine assualt). I limited gluten and sugar, and went for organic everything! We also gave carlson fish oil daily fourth-start the wean and hold on!!! we went down first on the zith b/c I felt she was less dependant on this one. I made small decreases and waited several weeks between adjustments. Lots of water, epsom salts baths almost daily (necessary!and I read it is acutally a mild chelation). I really want to stress this for you other parents thinking of weaning, THERE WAS SLIPPING!!!! each time I made a decrease SHE DID SLIP! but I refused to go back, and she knew I had that confidence with my new focus. I prayed and felt in my core that we were going down the right road. I put my faith in GOD, I knew a long time ago not to put it in science or doctors (no offense to the wonderful docs trying to help, but they ARE human, and unfortunately, almost entirely educated by pharmacuetical companies that make billions from vaccines and patient dependant on their drugs). I saw some old behaviors come back, and some new ones start, but I held fast, made her soak everyday in epsoms, and stayed calm. I told her it was normal she would feel this and it would pass within a few days. AND IT DID!!!!!! Then I would wait until she balanced a little, and make another decrease. I think I started weaning in Dec of last year, we were completely off by May. fifth- I prayed and prayed, and gave thanks for every little thing. I truly believed she would be ok,( and believe me, I didn't always project this) but I felt it was important for her to know I felt this. Somethimes I had to summon strength and try to make myself believe it, but I feel my strength definitely gave her strength. Now- She is doing amazing! I sometimes forget how bad she was, but I do remind myself so I can be thankful. I would say she still has some anxiety at times... but she knows she can conquer... if you read my old posts, you will know we were pretty dark at one point. I see her wit, and I know she thinks better. Grades are up, she can definitely process math better (scored on the line of advanced on her start testing!) NO MORE VACCINES for us. I will use our medical exemption, but if I am bullied, I WILL resort to homeschool... whatever it takes, I will not let her be injured again. I have educated her to not let the school vaccinate her too! Sorry so long, but I feel it important to share. I pray for strength and healing for all of you! Please know you can heal, we are proof!!!!
  7. Haven't checked in a while. DD is off all meds and doing great! Just wanted to share this article, found it interesting. I feel vaccines were the cause of our whole problem. http://vactruth.com/2012/09/14/eczema-as-a-biomarker/?utm_source=The+Vaccine+Truth+Newsletter&utm_campaign=a974f5dbea-09_14_2012_eczema&utm_medium=email
  8. I know many of you are in a whirlwind taking care of your sick child(ren) but someone just recommended this book to me, sounds interesting. I haven't ordered it yet, but thought I would share. Polymicrobial Diseases by Kim A. Brogden, Janet M. Guthmiller Publisher: ASM Press 2002 ISBN/ASIN: 1555812449 ISBN-13: 9781555812447 Number of pages: 450 Description: Polymicrobial diseases are those involving more than one etiologic agent. This book provides an overview of the current knowledge of these mixed infections in both animals and humans and explores the contribution to disease made by interacting and mutually reinforcing pathogens, which may involve bacteria, viruses, or parasites interacting with each other or bacteria interacting with fungi and viruses.
  9. I too can look at my dd records and notice resp illness or ear infections after every vaccine. Her first behaviors started shortly after the 15 month MMR but asthma started AS SOON AS I STOPPED nursing her. I always found that odd. She never had asthma before that, I do believe my nursing her was somewhat helping her severely taxed immune system. The good news is there can be a degree of healing, and foresight to not let any more damage be done. I just pray so hard parents will educate themselves and take a stand so these children are spared this suffering. It TRULY makes the most sense to me as to what happened to my daughter. I TRULY feel PANDAS/PANS is just on the spectrum of vaccine injury... somewhere between ADD and Autism. The behaviors fall right in line. Add in asthma, diabetes, arthritis, and allergies...... and nearly EVERY child is affected by autoimmune illness. The only autistic children found in the Amish community (which doesn' vaccinate) were the few that were vaccinated!!! That is huge! There needs to be more studies!!!! bottom line!
  10. Just watched the movie "The Greater Good" I think it is highly informative about the circle of vaccines and politics. Also the dangers of the adjuvants. It offers a balanced view, although in my opinion the scale is not balanced for the clear fact that the safety hasn't been studied and our children are the test subjects....obviously suffering the consequences.
  11. I has just read something about this a few weeks ago. I am sure there is much more info out there but here is something I quickly came across http://www.who.int/vaccine_safety/topics/influenza/pandemic/h1n1_safety_assessing/narcolepsy_statement/en/
  12. Well I think the first thing that helped my daughter was a shift in my thinking. As I looked more into the vax issue and things really started making sense, I realized I didn't want to kill an infection (Lyme) or supress her immune system (PANDAS). I realized I wanted her to heal from an injury so that became the focus. I went back to the strict diet, not completely restrictive but just tried to cut out sugar and gluten as much as possible. Our naturopath also gave us some whole food supplements. Once I had this revelation, I REALLY wanted to get her off the abx. I hated having her on them anyway, but I felt they were going to do more harm then good if we didn' get off soon. She was on zith and augmentin. Trust me I was terrified to wean because she always showed behaviours coming off. I mentally prepared myself and buckled my seatbelt ready to deal with what might come. I also decided to go very slow. So supporting her body with good nutrition, whole food supp, and carlson fish oil caps, and daily George's aloe shots (for the gut) we started weaning in Dec. I noticed behaviours within the first 2 wks. I got nervous but my lyme doc said try epsom baths. THEY REALLY HELPED! when given daily. Her vocal tic that starts when weaning went away within a week. This gave me more momentum because I saw it pass without resuming abx. I would wait 3-4 wks before making another decrease, always giving her time to adjust, and get past whatever behaviour started. I would also stock up on the epsom salts before any decrease in med I have read that epsom salt is a mild chelating agent which also made sense. All the while, her losing the teeth with mercury was also a big help, 2 of them fell out in 1 week! It was shortly after that (about a month or 2)I was able to get her completely off. I think I could have weaned her earlier, it is strange and I can't really figure out why she would exacerbate with changes, but I do think she was more dependent on the augmentin which I believe has some immumosuppressive properties. So main focus now is to let her immune system balance... I believe her asthma was the first sign of all of this. And last but certainly not least, I have to give a shout out to my main man THE GOOD LORD ALMIGHTY. I feel prayer and faith guided our journey...In a sort of sick way, we are now ok with our journey, it has led us to a good place. My daughter is AMAZING!! She is strong and her fight has given her confidence and a deep compassion for others that are struggling. I pray you ALL get here soon!!! sorry sooooo long
  13. I just ordered the movie "The Greater Good". I hear it has a pretty balanced view, may be a good one to recommend to the teacher. I will let you all know after I see it.
  14. I agree, I get sad and angry....but I also agree, no looking back, but forward. I'm glad I'm moving forward with the information I have. My daughter is completely off of abx and doing GREAT. I finally feel we are on the other side. That is the good news though.... there can be a degree of healing, and for us it has been to a level that no one could ever tell what we went through. Unfortunately for others though, that level may never come because of the degree injury. That saddens me. Looking forward for the many that will face what we went through and moreso, The sickest part is it can be avoided. I also fear for many families that get their child functional again, then have a ped recommend vaccination and they follow that advice and start the downward spiral all over again. I felt it in my gut from the first visits where they were jamming her with so many vaccines all at once. I knew it wasn't right. I suspect many other moms feel that too. We have been through a textbook PANDAS diagnosis, Lyme and Mycoplasma and for some reason each of those had a piece of the puzzle missing. The more I read about vaccine injury, the more "ah ha" moments I have and it just totally makes sense that is what happened to us. I don't blame only vaccines though, I truly feel a significant amount of amalgam fillings in her mouth tipped her over the edge. Curious all those teeth have fallen out now that she is better I think this is such a sensitive subject but awareness is CRUCIAL!! to save as many children as possible. Please share the video as you can. I found it quite powerful. Thanks
  15. I wanted to share this, just wish the last couple slided were slower to sink in more. By the way, we are doing great! Off of all meds
  16. My son had a reaction after the flu mist. It was 2 days after. Had no idea about PANDAS at the time. He had a second dose a month later. That is when the symptoms became worse. I woke up one night and realized I bet it was the flu mist which exacerbated the symptoms. As I was researching sudden onsets of OCD and tic I came across PANDAS. I found a doctor who diagnosed my son without any previous strep infections or any infections at all. He had not been to a doctor in over a year prior to vaccine. However, he did have a high cam k. I followed through with the vaccine compensation program and his case was assigned to a judge a week ago. Hoping for the best. It has been a rough few years. So sad because I thought I was doing what was best for my son. What we think happened was my son had an autoimmune reaction to the live virus. The same way strep mistakenly attacks the basal ganglia, this live virus attacked my sons. Very scary. I remember reading that the flu vaccines are some of the highest containing mercury. I need to look back but there was some interesting articles about how mercury affects neurotransmitters and other chemicals in the brain causing inflammation and I bet there is a connection with elevated cam kinase. Just needs to be researched more. It also explains the breech in blood brain barrier which was never explained from what I could find in PANDAS/PITAND/PANS literature. We have a PANDAS and LYme diagnosis with a positive mycoplasma! With all that, I can't fully understand how it could be any of them. The more I read about vaccines and there adjuvants the more I know it is the culprit (along with environmental, amalgam caps, and food combined)My dd is healing very well and will never get another vax. I am a RN and me, nor about 40% of healthcare workers will get vaccinated. Too much propaganda and profit motive and our children are suffering. Good for you, I hope you get somewhere in court. I have found alot of good info on vactruth.org and vaxtruth.org. The first one has alot of science bases articles that support the cause. It really disgusts me. Now they are going into schools and giving vax without parental consent!!! That is ludicrous to me..... they don't know a childs whole health history!! nor does the child! I have had to educate my 10 yo dd not to EVER let them vax her. I had a bad feeling about the vax since she was an infant. Go with your mommy instinct, its got us where we are today. There is hope for healing, my dd should be completely off abx within the next month and is better than ever.
  17. my dd is doing very well but in retrospect I think vaccines along with possible other mercury exposure had almost everything to do with her illness. I have been quite obsessed with researching it lately and it really makes sense to me, more than any of our other diagnosis (pandas, lyme AND mycoplasma) I have read about mercury causing permeability of the Blood brain barrier which makes sense to me why we have to call it PANS or PITAND because anything that crosses the blood brain barrier (which the function is to keep most antigens out!) can cause inflammation. Even the supposed mercury free vaccines still have some along with other toxic adjuvants. I too had gut instincts as a mom taking my baby in for vaccines, something just didn't sit right with me... I felt so uninformed about what was being given to her. I did start to space them out more, but in retrospect, I would have dug deeper and not let myself be manipulated into giving all of them. Good news is, she is healing from whatever the cause. I have my girl back. Its been a long road but she is an amazing young girl and I thank GOD everyday. My heart breaks for what you are going through with your baby. I would like to suggest that you follow your gut instincts as best you can. We are on the other side of this, and while there are some things I wish I would have known before, I feel mommy instincts got me this far! My dd was so bad at one point they wanted to admit her to a psych facility! You wouldn't even know its the same girl
  18. Crap!!! We eat very healthy, but BBQ sauce is one of my son's favorites. I have been buying from Trader Joe's lately -- hoping that one is better. I know, you really have to look at EVERYTHING! Took me forever to find a bread without it! I used to think diet didn't matter so much because we ate healthy, but I have really had to get a lil crazy with the diet since we were coming off abx I wanted to really balance her gut (she's been on abx for 2 yrs!) I think it is really helping, we are almost completely off and she is doing so good. I still let her be a kid but I prepare all of her meals and try to use the best ingredients.. sure she eats out and stuff but she is definitely healing. The mercury thing really makes sense because it is multifactorial: vaccines, environment, food.... and the way it effects the nervous system makes too much sense to me.
  19. another interesting tidbit: High Fructose Corn Syrup High fructose corn syrup (HFCS) is a common additive used to enhance the shelf life of foods. Numerous processed foods such as jelly, bread, barbecue sauce and flavored milk are made with HFCS. A January 2009 article in "Environmental Health" investigated whether mercury ended up in the final product, as the manufacturing process of HFCS includes mercury cell chlor-alkali products. Varying levels of mercury were detected in nine of 20 samples of HFCS. The accumulative effect of mercury ingestion due to the large amounts of products with HFCS that Americans consume is a major health concern. Read more: http://www.livestrong.com/article/318127-list-of-foods-that-are-high-in-mercury/#ixzz1tw2LnbWY
  20. So I truly feel vaccines are a major factor in what happened to my dd (now healing VERY well). My dd also had some extensive dental work with 2-3 silver caps placed prior to her downward spiral. She also had asthma which calcium and magnesium deficiency has been found with (and which mercury toxicity interferes with....) I have also noticed that epsom baths have been a GOD SEND in her recovery and coming off of abx, which are also considered a mild chelating agent. She also responds well to augmentin, in which the sulfa component may help with mercury detox..... so I got to wondering why we saw SOME progress (but not enough) after ivig. Then I saw this article quickly on pub med http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1535374/ .Just wondering if anyone else has any similarities (eg. vax, amalgam fillings, asthma.....) Just seems like so many of her symptoms can be explained. I had asked my ped to test for metals at the start but he only tested lead. It is rampant in environment, was present in her vax, and she is healing now as her molars containing the silver caps are falling out!!!! just curious.
  21. My dd is now 10 and doing GREAT!! completely off of zith, and down to only 500mg augmentin/day which we will be working on nixing very soon. Its been a long road....but I still like to research to try to figure out what actually went wrong. I feel very strongly that vaccines were a MAJOR contributor. I found this article very interesting and comprehensive so I just want to share. http://gordonresearch.com/articles_autism/multiple_causes_of_autism_spectrum_disorders.pdf
  22. I am the website administrator for VaxTruth.org and I always check the links to our website to track them. No one used the information that you posted earlier, the information the author used is as she asserted, a contact from a parent through our contact info on our website or personally through facebook. I only noticed your post because of the high link rate from the page and decided to check out the source. I noticed your concerns and echoed them to the author. I am writing to inform you of a retraction that was made on this subject, you can find the link from the author here. At VaxTruth we welcome questions and we are on a crusade for truth, if we are wrong, we correct it. We apologize for writing misinformation, thank you for reading our article and for your feedback, it indirectly alerted us to a misinterpretation of the facts that we are obliged to repair. We appreciate your support and or criticism of any articles or facts we publish. The author has a child with PANDAS, just the same as many of you do. She is also on a quest to find the answers. Her hypothesis is a very good and thorough one. We all want answers for our children and for the students in Leroy. I know we may not agree of every aspect of the disease or it's cause, but we are fighting for answers together regardless of the avenue. If you ever find something on our site you believe to be a factually inaccuracy, please contact us through our site and let your concerns be known. Thank You! Spencer Pond Vaxtruth.org Thank you Spencer
  23. ok Kim, sorry, just caught it..... all children under 24 mos... I need to slowwwwwww down:)
  24. Kim, This is specifically what I was replying to: Pneumococcal conjugate vaccine is recommended for all children less than 24 months old and for children between 24 and 59 months old who are at high risk of disease. Persons who are 2 years and older and at high risk for disease (e.g., sickle cell disease, HIV infection, or other conditions that weaken the immune system) should also receive PPSV23. (sorry, not so good at the highlighting on this forum :/) I read this to say the PCV should be given to children under 2 at high risk, if they are older than 2 (and also at high risk), then they should receive the PPSV23. You are correct, it can be very confusing and I have much respect for the time you have obviously put into it. I agree with DCMOM in that I do not have the time, nor energy to have researched it that much, so I really appreciate your info. I have just started to gather more info on the possible vaccine link. My gut has visited it several times though.... the more I read, the more I go hmmmmmmmm. Bigger picture view for me: I would like to see how "all" childhood autoimmune illnesses can be linked. ASD, PANDAS, ADD, diabetes, some cancers, asthma, allergies, arthritis.... If we lump them all together, see how incidences have increased and say "what is the common factor???" It would really force us to look into what we are doing to the immune system. I want to have a balanced view, and as someone said it would be great if 2 sides of the debate could come to the table and work towards answers. But I think that is where alot of the outrage comes from on the anti- vaccine side... they want to meet and research and assure safety for our children, but the side that has the money and the DUTY to do the research and see if there is a link, is too quick to discount any effects the manipulation of the childs immune system could be causing. Alot of those who do not vaccinate, or have chosen to stop vaccinating are not doing so because they think "all" vaccines are bad, or because they are buying into some conspiracy theory.... it is because there has been parent after parent that has claimed injury or Autism after vaccine and not enough is being done to absolutely rule that out. All scientific experiments are based on a "hypothesis". I believe the amount of autoimmune issues plaguing our children along with amount of vaccinating we do and testimony from countless parents are more than enough to warrant a prolonged and critically in depth study. After what we have been through, if there is even a remote chance that a vaccine caused this, I am not going to allow that to be an option for my child now. Just as many become hypersensitive to letting their child be exposed to strep. You can only try to "play" God and modify nature for so long before it comes around to bite you in the ######. Condescending, or tearing apart others point of view, really does nothing to support all of us going through this. The information posted by some has been very helpful. Thank you for that.
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