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Everything posted by GL_Lmom

  1. From what I have read, the minerals in the water are a source of nutrition. I think the reverse osmosis filter removes all those mentioned, but not chlorine. Some of the minerals are absorbed through skin during showers as well, buy I haven't discovered any adverse effects from this, although the water treatment system salesman had quite a list. These were mostly skin issues such as dryness or rashes, none of which we have experienced. I'm not sure what the reverse osmosis system removed that is a trigger for my boys, but it was a noticeable difference - positive when we installed the system, and very negative very soon after it broke down.
  2. Thank-you. It was you who many years ago educated me on the necessity of reverse osmosis filters. the one that we had was extremely beneficial to my boys. I hadn't found any information on hard water and its effect on Tourette's, hopefully because there is nothing to learn. The whole house unit would remove magnesium and calcium as well as the chlorine. In addition to charcoal for removing the chlorine, the tank contains negatively charged resin beads which bind with the calcium and magnesium ions. The salesman mentioned that salt is added periodically, and I assumed he meant table salt. I do want the chorine gone, but was concerned about losing the magnesium and calcium. thanks again. You and this site are a wonderful resource for so many who are struggling. Have a great evening.
  3. Hi all, It's been a while since I've posted, but I had a question for the experts here! Two out of three of my sons have TS. I have tried every diet, natural remedy, and prescription for the oldest whose symptoms have always been more severe in addition to his being more sensitive about his ts. The youngest is more accepting of his condition and deals with it ok without needing to do more than watch his diet, take vitamins and avoid triggers. The only thing that ever significantly helped them both was the reverse osmosis filter we had for our drinking water and ice. A while back these started to disfunction and we had to go back to our regular tap water. Their tics went through the roof! We are finally able to afford a new filtration system, and had the salesman out for an estimate. He was pushing a whole house filtration-water softener instead of the reverse osmosis. Regardless, I am going to go with the reverse osmosis filter because I know how beneficial it is. My question for y'all is whether I should get both. The salesman's spiel was very convincing. The whole house filter softens the water and removes the clorine. This reduces calcium (chalk) build up on the skin and in the pores as well as purifying the water absorbed by the skin during showers. Any ideas as to the benefits of this in regard to the TS?
  4. This certainly is good news for the future of ts treatment! A question for any one with a theory: If autistic children who are successfully treated may hit a "busstop" with a diagnosis of ts, then what about a very young child who starts showing ts symptoms? Does anyone know if this could proceed to austism, if ignored? My posts here are usually in regard to my 9 year old, but his 3 year old brother occasionally blinks and hums. I really don't want to do anything at this point other than avoid metals, if I can and monitor diet and screen time. Any thoughts?
  5. Hi Kim Thanks for the heads up, but my son was not taking clonidine. Also, the meds were fairly new and low dose (tenex and topamax). Tenex is similar to clonidine, so I will research a bit more, just in case. I am a bit nervous about making this decision, but also optimistic. It has now been 4 days and all his issues are much better. It has actually been the only time in the past 2.5 weeks that he didn't have a headache and nausea. I feel terrible about putting him through this. He has been getting more and more resistant to taking his supplements and meds. I kept insisting, thinking that his objections were to having to swallow so many (and large) capsules. In hindsight, I should have listened between the lines. I did try to ask specific questions, but he was also non responsive to questions. That has improved as well. Good luck with your own son's elimination of clonidine. What supplements have you found helpful. (Sorry if it's posted somewhere already. My brain is overloaded right now!) Thanks again for the caring suggestion.
  6. Claire That is a good point. I was concerned about completely stopping the meds without permission from the doctor, but the change is so enormous that I decided that I'd watch for problems myself before calling. Our neurologist doesn't support our alternative efforts. He shows a bit of impatience when we show resistance to medication. I know he'd tell me to keep my son on the meds. Also, it is very hard to get a timely appt. with him. He has been working us in weekly for the last couple of weeks. I'm not ready to jeopardize that yet, just in case. Yes the meds are for tics-and depression.
  7. Thank you Jeff and Claire, Claire, I've added glutathione and selenium to my ever increasing list of questions for Pfeiffer. I plan to call them today. Just a curiosity. My son absolutely refused to take his suppliments (and the loathed prescriptions) Sunday night and Monday morning. By Monday afternoon he was much like his old self. His tics while still pretty bad were nowhere nearly as continuous as he had been experiencing for the last 2 weeks. He laughed and smiled and hugged so much that I almost cried. He was responsive to everyone around him. I hadn't realized how long (months) it had been since I had seen him show happiness. He was even able to do some homework. His tics had been so bad that he couldn't hold a pencil for almost 2 weeks. I hope I don't set him back by allowing a break in supplements, but I see this as a way to start over slowly and with no meds. I'd like to experiment with diet and screen limitation again as well. My 3 year old is starting to show symptoms so this may help him, too. It's curious to me that the little brother starts showing symptoms at the same time Luke's skyrocketed. I just have to be missing something that triggered it. Has anyone here had experience with a severe worsening of symptoms five months into starting a new supplement program? I don't think it could be a detox issue because we aren't really addressing the yeast or metals yet. It could have been the meds but the timing of his worsening tics didn't correspond to starting the medicine.
  8. Claire You said that your son resists the glutathione lotion. Is this just because of the time it takes to apply? He didn't have any discomfort from it? How much do you have to use at a time. How is it applied? I think I need to ask Pfeiffer about this for my son. If it just needs to be massaged into a small area, a back rub may work. He has grown very resistant to all of our efforts. Thanks.
  9. Jeff, I forgot to mention it, but I did cut out the artificial colors and flavors when we tried the GF/CF diet. I didn't cut out the preservatives however. It didn't even occur to me at the time, which was careless because I react to MSG almost immediately after eating something with it. I definitely will give the Feingold site another look. Do they give you a specific diet plan if you join, or are you just told to avoid certain things? I would like to try it on the whole family. My 3 year old just started having tics in the last two months. Claire, I am going to call Pfeiffer Monday and ask about the glutathione cream. I may ask if they'll erder the yeast test, or just let me try some nystatin. I've read that it is extremely safe. Did Pfeiffer test you for a glutathione deficiency or was it prescribed because of the metal issue? They didn't seem concerned about my son's metal levels because they were borderline, as were all the crucial tests. They rated him as Cu/Zn imbalanced and borderline pyroluric even though his values were in the normal range - as you noticed. That is why your yeast idea has such merit to me. It makes sense and explains what the tests don't. I'm still wondering about environmental allergies as well because when I review his history, there is always something there. His symptoms first got out of hand 5 yrs. ago when he started kindergarten. We had just moved into a new house with new carpets, paint, etc. as well. In September, our city was devastated by hurricane Ivan. There is so much mold and debris now that even normally healthy people are having severe problems. He's been getting worse all year. Our home was ok, but many places were flooded including his school, the grocery stores etc. Our yard was flooded with salt water, downed trees and debris from neighbors, but we had it cleared after about two months. It makes me wonder. Why is he getting worse right now - what else has changed? My comment on his poor eye contact as a baby was just a way of saying that I recognized a difference early on even before the tics, add and ocd started. Thank-you for the information on adrenal stress and exhaustion. This is something I haven't researched yet. I admire you, Chemar and the others so much for how much knowledge you gain through sheer determination!! You and everyone else on this forum are in my prayers that you continue to do so well. Your kids are very lucky. Chemar, Thanks for the Dr. Weil website suggestion. From reading it, I know I need to inquire about an omega 3 - fatty acid replacement for the fish oil which my son cannot tolerate. I wish I had your (and many others on this forum's) confidence. I just am to afraid to try anything without someone with more knowledge telling me it's ok.
  10. Hi all Thanks, Claire, for the great suggestions. I'll try to answer all your questions. Yes, I meant to say copper/zinc imbalance rather than Mg/Zn. My son's serum Cu level (Labcorp) was 65, Zn 92 while the hair analysis of the same metals were 46Cu and 150 Zn. The lead didn't show up in the blood while the hair analysis value for lead was only 1.1 this time ( 8 months previously it was 3.1) I can't believe that yeast didn't even occur to me this time! I had consulted with a DAN environmental doctor about 1.5 years ago and he told me that it didn't sound as if my son had a yeast problem. So when I asked at Pfeiffer and they said the same, I quit worrying about this one. They did say they'd order the test if and when I ever wanted to. I will ask for one in the near future. My son's supplements don't contain any Manganese. While he was taking the Primer, our Pfeiffer practitioner warned us that it could cause a problem, but it seemed ok. The following were recommended: Vit. C - 500 mg Pyridoxine (vit B6) -200 mg Pyridoxal-5-phosphate - 50mg TMG - 175 mg Biotin - 400 mcg methyl B12 - 4000 mcg Calcium carbonate - 500 mg Mg. oxide - 250 mg. vit D -200 IU fish oil - we had to stop this one - obvious ocd increase vit c - another 500 mg Zn picolinate - 50 mg vit E - 300 IU TMG - another 175 mg biotin - another 400 mcg taurine - 325 mg AFP peptizyde - 1 cap 3X/day with meals acidophilus in addition, they just suggested no-fenol and inositol. We're waiting to receive them by mail. I probably could have purchased them in town, but I've had trouble finding supplements with no coloring. Unless I'm overlooking it, Pfeiffer didn't address the glutathione issue. That showed up in a test I had previously requested (begged and tolerated being patronized for!) As for eye contact, he has no problem with people he's comfortable with, but he doesn't look his teachers or strangers in the eye. I think this is a self esteem issue rather than ts I have not heard of the adrenal stress test or adrenal exhaustion. Which specific amino acids does the Great Plains test measure? Our spectracell test last year, tested for a few -all which were ok. Again, thanks for all the suggestions and even more for the understanding. We'll definitely request the tests you suggested. Those who post here are such an inspiration.
  11. oops, I made a mistake with this post and can't delete it completely
  12. Hi again, Chemar, Thanks for the quick (and comforting reply). Did you do anything to reduce exposure to dust mites. I think I remember reading some of your suggestions before, but can't remember details. At the time I didn't think it applied to us because my son has never shown allergic tendencies. My husband sneezes 6 months every year!! Yes, because this all happened in the spring is one reason I became curious about environmental allergies. I really wonder if he's allergic to the air in his school also! Can any illness cause such a severe increase in tics that continue for weeks after becoming well? It could very well be that Pfeiffer's supplements were helping more than I knew and the interruption caused the relapse. I wanted to state for everyone that we really like Pfeiffer. They have been hands on and very available when I've had to call with questions or requests. And they don't think I'm weird for persuing this avenue of treatment.
  13. Hello again everyone I haven't posted here in months, but I regularly check the site when I can. Can anyone remember the thread discussing environmental safeguards for our kids. It discussed things such as which kinds of pots to use in the kitchen, air purifiers, floors and furnishings. While my son is still on meds, I've been searching for alternatives for years. Please don't tell me the problems or dangers with the meds, as I already know. My son was/is severly depressed as a result of his TS and possibly is genetically inclined. Even as an infant, when most babies stare at faces, he seemed uncomfortable or overstimulated with eye contact - who knows. He is the most loving, empathetic person I have ever met. He can't even squash a mosquito! Anyway about the meds, I really believe they have saved his life so far, but I also know that somewhere there is a healthier alternative. What we have done so far: Installed reverse osmosis water filter stopped using aluminum pans stopped using perfumes, both bodily and laundry tried several supplements all to no avail tested for strep twice - 1st was negative, 2nd positive antibiotics for 6 weeks had the Metametrix delayed food allergy test (+casein, gluten, eggs) went on the casein, gluten and egg free diet for 3 weeks - no change at all Had the Doctor's Data hair analysis +lead, aluminum, arsenic Had the SpectrCell nutritional analysis (deficient in ALA, glutathione,B2 and selenium) No screens for several weeks 4years ago- it helped for 10 days then tics returned No screens for a week recently - no help, and depression increased Traveled from Florida to Chicago's Pfeiffer Center - tested borderline on metals, Mg/Zn balance, pyroluric, elevated histamine; yeast not suspected Began their suppliment suggestions Continued for three months with no change Then my son got ill from a virus as did my husband and another son. With all three they were sick off and on for three weeks. Luke missed vitamins and meds because of vomiting for approximately two weeks as tics were progressively increasing the entire time. At this time the pediatrician did a throat culture which was negative for strep. Currently the neurologist ordered the blood test for strep. We're waiting for results. Sorry so long - almost finished! My son hasn't been to school in 10 days. He is constantly ticcing with eyes, neck, arms and legs simultaneously, especially when trying to do his homework which is piling up. His behavior has always been exceptional and up until now, he has been a straight a student with a few b+'s - with a LOT of parental participation in keeping focused on homework - this to the point of having no life. Are there any suggestions? Lastly I'm curious about something. The two books that have halped me the most are "Children with Starving Brains" by J. McCandless and "Is This Your Child's World" by Doris Rapp. But these two books don't have any overlap. I had loosely followed the McCandless book in my son's treatment, but Doris Rapp's book has a whole different approach. My question - has anyone gone the environmental allergy testing route with a physician experienced with AS kids and seen some relief. Her description of allergic tension fatigue syndrome sound exactly like my son. The muscle weakness and fatigue not usually associated with pyroluria etc. can be explained with this. Again, I'm sorry about the length of this post, but our entire family is at the end of our rope. Thanks in advance.
  14. I found a pancake recipe in Tracking Down Hidden Food Allergy by William Crook. 1/2 cup rice flour 3/4 cup oats (whole grain or quick cooking) 1 Tbsp. Cellu baking powder 1/4 tsp. baking soda 2 T. honey 2 Tbsp. safflower or soy oil 1/2 tsp. salt 3 Tbsp. apricot puree (to replace egg) 1/2 cup Soyquik Place 3/4 cup oats in blender container; cover and blend until the oats are like a fine meal, then add formula, oil, honey and apricot puree. Beat mixture until smooth. Drop by tablespoons on lightly greased griddle set at med low to low heat. Let pancakes cook until fairly well set, then tu4rn carefully. Serve with honey or maple syrup. This is how it is printed in the book. My guess is that the other dry ingredients are added to the oats. Soyquik must be what he is calling formula. Hope it's tasty!
  15. I remembered one more question. Is goat's milk an acceptable substitute if one has casein allergies or only if the allergy is cow's milk?? Thanks.
  16. Hello all What great ideas! I can't wait to try the rice crispy treats. Found the choc chip cookie recipe but it has hard to find ingredients and eggs. Here's the site just in case anyone wants it, but Robin's suggestion of using a baking mix from the Gluten Free Pantry sound easier. http://whatscookingamerica.net/Cookie/Choc...pGlutenFree.htm Ronna - thanks for the suggestion about Asian cookbooks. I hadn't thought of that, but you're so right. Can't wait to start experimenting! efgh - I haven't tried to limit salicylates but I'm still very new to this. Luke just started his diet this week. His allergy test didn't show a problem with any fruits except pears (very mild). Has your son had problems with these? Once again, I have some questions for anyone who knows the answers. My list of foods that may contain casein is as follows: au gratin foods, baked goods, butter candies, cheese, chocolate, chowders, cream/creamed foods, custards, doughnuts, eggs, gravies, hot chocolate, ice cream, margarine, mashed potatoes, muffins, non-dairy coffee creamer, pancakes, pies, pudding, salad dressing, sherbet, souffle, soups and whey If Luke's allergic reaction to casein is severe, how come he doesn't show allergy to milk, malt, chocolate? Can he have a little chocolate, for example? Claire - are you going wheat free or gluten free? I just found out gluten free includes many other grains as well. If your son is ok with soy, we've been making fried chicken wings with soy flour. They're great and Adkins friendly! Everyone - Are you trying to have the whole family follow the diet or just the affected children? What are you doing for Easter? Two of our favorite family customs were making jello eggs - every color, and making deviled eggs with all the dyed Easter eggs. Poor Luke makes them better than anyone and he won't be able to have it this year. I'm sure we'll find a fun substitute. Good luck and blessings to all of you.
  17. Hi Claire, Thanks for the diet ideas. We'll definitely try to find rice crackers and the Luna bars. Lunch making has been a challenge for us, too. Luke had a severe allergy reaction to casein, so we can't have any dairy products including butter, margarine and cream cheese. I found soy butter which he said was pretty good. It smelled just like the real thing. I found some recipes on the following website, but I must admit they sound awful! It can give ideas for what types of ingredients are ok for substituting into our regular recipes. Don't know about milks yet. Soy got a two thumbs down by Luke. This afternoon he tried putting orange juice on his organic cereal! YUK but he loved it. http://www.billytommey.co.uk/articleswinte...recipes.htm#top
  18. Hi all, Claire, Congratulations on having a plan! Your son's situation seems to be very promising. I have a few questions for you. Has he shown signs of a yeast problem other than the allergies and metal buildup? Are you giving melatonin instead of glutathione or along with it? We just had the phone consultation with our DAN doctor and were given an almost identical plan as you described. We were also told that the metals (lead, arsenic and aluminum, in our case) are not off the charts and were not that alarming. He didn't want to chelate as the antioxidants should help clear them out. We were told to suppliment with vitamins C and E, as well as selenium, and two other suppliments he suggested that I don't have yet. I know they contain glutathione, zinc, ALA and some B vitamins. I'll be more specific when I receive them in the mail. I asked about the ALA and was told that because the metal levels aren't extremely high, it is ok. He didn't address the yeast issue because Luke has never shown any signs of a problem here, but I wonder if maybe he's just asymptomatic since he has all the other problems. He (the Dr.) also didn't talk about the fatty acids other than to ask about the fish oil. I am planning to switch from fish oil to the blend Chemar uses to see if it works better. My son seems more anxious and emotional on the fish oil. We've started it and stopped it twice in the past trying to figure out what he is reacting to. Like you, our major obstacle is the diet. Luke cannot have wheat, casein, eggs or peanuts. Even though he didn't show up as having a milk allergy, the casein takes all dairy off our list. I found some great natural cashew butter at the health food store along with some bread made with millet flour. All three of my boys devoured it. It's very expensive, but hopefully will be worth it in the long run. If you find any good books on a gluten free/casein free diet, (or websites that you can order the foods) please let me know. Our town is not the most forward thinking community. We are very limited with only one very small health food store. The regular grocers don't carry any of the soy products or others that we need. I found a good chocolate chip cookie recipe online. Will print it here when I find wherever I put it! Good luck with your treatment. And thanks for sharing it with us.
  19. tater, Did your tics start after your move to the new house? Are they worse when you've been inside? I know many are affected by the smells put off by new paint and carpet, etc. Good luck.
  20. Chemar, While detoxing, did you have kidney and liver function tests run to make sure there was not an overtaxing of these organs? If so, how often? Also, do caprylic acid or chlorella pass through the blood brain barrier? I thought I read somewhere that only ALA does this to remove the binded metals from the brain? I was concerned when one of our lab tests recommended supplimenting with ALA because by book by Dr. McCandless states that ALA should only be given after another chelating agent has mopped up most of the peripheral nervous system binded metals. Otherwise, these could be binded to the ALA and move into the brain rather than out. At least this is how I understood it. Any thoughts on this?
  21. Hi efgh, Our doctor ordered the blood test for delayed food allergies. I think it's IgG but better double check with someone who's been at this longer than me. The test from Metametrix in Georgia was back in about less than two weeks (maybe sooner because I wasn't called right away). As for the rest of your questions, I'll be eagerly awaiting the answers as well! Good luck to you and your son.
  22. Hi all, Thanks for all the replies. This website is my lifeline right now! Chemar, Thanks for the suppliment advice and well wishes. Is there a website that offers high quality, pure vitamins all from the same place? Heather, I, too, would like to reach the point where only a multivitamin is needed. While the suppliments seem better than meds, I'm still nervous about giving him so many capsules to swallow every day. I used to hesitate before even giving tylenol for a headache. Jennifer, Thanks for the link to the MT protein article. It makes so much sense in explaining why our kids might be having these problems. I am definitely going to ask the doctor about this as Luke was deficient in exactly the nutrients listed in this feature - glutathione and selenium. It talks of therapy to turn the MT protein genes back on instead of the DMSA and ALA chelation. I wonder if one could still chelate, then try MT therapy? Also, It's interesting about your school. Luke's tics showed up right after starting kindergarten in a small Christian school (and moving into a new house). After half a year, I pulled him out and homeschooled for the rest of K, 1st and 2nd. The tics were milder at home (I thought less stress). This year, he returned for 3rd and guess what. The complex tics returned. He is still at the school and his complex tics have waned but he still has many simple ones as well as almost constant bodily tensing and unclenching. This may be a tic, but it seems different to me. I'm a bit afraid of the principal, but I guess I'll have to ask about the pipes, paint, etc. Claire, I, too, have noticed the similarites in our sons' issues. Since tv, video games, etc. are triggers for them, have you observed any problems with wireless phones or computers? I haven't but always worry that I'm missing something. efgh, Our doctor situation is a nightmare! Our only doctor who is knowledgable on this type of treatment is many hundreds of miles away. I have another phone consultation with him on Monday. I'll let you know about his treatment suggestions. Our pediatrician admirably admits he doesn't have enough knowledge to treat ts, so he doesn't try. The psychiatrist is a huge believer in medicine as the answer to all our problems. He gets defiant at the mention of vitamins. The pediatric neurologist is so booked up, it takes months to get in, even for what I consider urgent problems. The doc who ordered the tests is now open minded, but he's a family practitioner without training in this spectrum. He is just helping us out by ording the tests I request and communicating with the ped neurologist and other doctors. He is still a bit skeptical and keeps me very cautious. anyone, Is there a way to test carpets, outdoor playsets, etc. for toxins? Or do we have to get rid of them just in case? How long do these items give off the poisons? The playset is 10 years old. We moved it from the previous house with great difficulty. The carpet is almost 4 years old now. (Wish I knew then what I know now.) Sorry for such a lenghty post. Thanks again for all the great advice and concern. Hugs to all of you.
  23. I have another question. According to our Children with Starving Brains book, I know we need to make sure Luke's gut is healthy and his food allergies are under control. If, then, we treat him for the heavy metals and get them out of his body, will they just build up again. I'm assuming he is more susceptible for heavy metal absorption than a non-ts child. I cannot fathom where the lead came from because I've always known about the dangers of lead. What if I don't determine the source to remove it? The arsenic probably came from treated lumber on the deck of our previous house and their climbing set. The aluminum from our water that is flouridated with aluminum flouride. We filter it now but I bet that doesn't catch the aluminum. Should our whole family be tested? My kids are 13, 8 and 2. The 8 year old is the one with ts. It was more that one question wasn't it? Thanks!
  24. Hi everyone, We finally got our test results back and thought someone here might be interested. Hair analysis very high in lead, arsenic and aluminum also high in sodium, potassium and rubidium IGg delayed food allergy test casein, egg white and yolk, rye and wheat - severe peanut, pear and barley - mild or moderate Nutritional panel deficient in vitamin B2 (riboflavin), selenium, glutathione and alpha lipoic acid I also suspect mercury although he tested as low on the hair analysis. There was an article in our local newspaper last week describing just how badly the fish around here are contaminated. I grew up and still live on the body of water that connects to the river where the power plant dumps mercury. The water has always tested clean by the EPA, but even those fish not usually associated with mercury stores are testing high. Luke and I both have amalgram fillings. He had the vaccinations as a baby. I had a rhogan (sp?) shot during my pregnancy. I just have to wonder. The doctor who I asked to order the tests for me made it clear that he didn't approve. He and his nurses repeatedly told me they've never used these kind of tests. He was extremely patronizing to me. Well, when the hair analysis results came back, he called me, told me the results and admitted that he was amazed and had never heard about this connection between ts and metal poisoning. He said his skepticism is gone and we're definitely on the right track! Thanks all for your posts. I don't input much yet (still learning) but print many of these threads.
  25. Chemar, Thanks for the warm and knowledgable reply. Now I remember reading about OT. It's interesting about how brushing helps. Sometimes Luke can calm down during bad ticcing times when I just lightly brush his arms and back with my fingernails - haven't noticed whether it helps the ocd as well. Claire I'll be sure to watch for compulsiveness when tv is reintroduced. It's actually the video games that I suspect. It's immediate and obvious when he starts playing them. Also some of the Japanese cartoons like Pokemon are triggers as well. He still had computer class at school twice a week but they are mainly working on word processing. At home sometimes the tv would be on with a Wiggles video or something for his little brother. Neither of these seemed to affect him at all. I think it's the rapid blinking that sets him off. Ronna When Luke first started showing symptoms, I researched PANDAS and Syndenham's Chorea. I commend you for all you've been through. What a long process. I'm glad your son is doing so well. Before you did the food elimination diet, were there obvious signs that something he was eating was a trigger? Did you have delayed allergy sensitivity tests first to see what the likely culprits were? I'm not confident I would recognize the trigger as I've never noticed any kind of food reaction. Good luck and blessings to all.
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