# Coping with school and pain



## PattiD

My 14 year old DD, has had a terrible couple of weeks where she has been in constant pain. The pain gets worse after she eats, so it is a challenge to find food she will try and she is losing weight. Our Pediatric GI person has now diagnosed her with IBS, in addition to the celiac and EE. She had a colonscopy and blood tests, in August, after 3 months of gluten-free, that showed the celiac disease was under control. She has definitively said that it could not be eos that is causing the problem, therefore it must be IBS. She told usthat it is not a "serious" disease since it doesn't cause long term damage. She reinforced the regular schedule - eating, sleeping, exercise and school. My husband and I are having a hard time coping with this. He is worried that she is becoming her pain. I worry about that too, but I'm more concerned about the pain that she is experiencing. He thinks that we should force her to go to school because otherwise we are "reinforcing her". I keep asking, what we are reinforcing? I agree that we need to get her to stay on as regular of a schedule as possible, but I can't agree to make her stay in school, if she is in pain.She is using breathing exercises, relaxation, has started walking with me and is trying to keep eating at regular times. She went last week for several hours on Thursday, but ended up laying down in the office then coming home. Friday she made it all day. We have talked about trying to get her to school, for at least a couple of hours every day, but it is so incredibly heart wrenching for me to have to push her all of the time. Of course, I'm the one staying home with her so it is up to me to get her to go to school, eat, exercise.How do you handle this? We are trying a variety of fiber, probiotics, and peppermint to help lessen the pain. We will be seeing Dr. Noel, in the Milwaukee Eosinophilic clinic, at the end of November. In the meantime, she ate and showered but is still feeling awful so I'm not sure if she will make it to school.


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## sazzy

It's always like that on first diagnosis. When I started I felt I couldn't go to school and i'd cry about it and make life hard. All anyone has to do is learn to cope. When you're first diagnosed you do go through the 'feel sorry for yourself stage' , but feeling sorry for yourself doesn't help. It's a big push to start with but it does get easier, you learn to cope. And as a parent you do need to be tough, talk to the school about her condition so if she has an attack she can talk to some one. I've tried to be happy that I don't have something worse. Ibs isn't life threatening and only takes over our lives as much as we let it. I constantly force myself to forget IBS and I've learnt to cope, I'm still aware with it but now I've put a no nonsense attitude on myself I've improve because I don't revolve my life around IBS. Everyone has to learn to cope with IBS, and every one has different things that upset them. Your daughter has to learn to cope with it, she can take it slowly but sitting at home feeling sorry for herself won't help her progress. The tougher you and she is, the easier it gets.


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## trying2bgood

Patti,What you describe is almost exactly what I go through at my house every morning with my 16-y-o. Getting to school for even 1/2 day is a triumph but we only manage about 1 or 1 1/2 days a week with going in late and/or getting sent home. Pain lasts for hours and I am helpless to find anything to bring relief. Our gastro group has referred us to pain management group, but can't see for one more month at the earliest. Until then, day after day it is more of the same. Just hoping for a break or a few hours of feeling good. But eventually you have to eat, knowing that it will likely recur. Sounds like you are doing everything right and trying many things to make it work. sorry I don't have any specific advice to offer. Just support from another mom who is going through it. ....and I believe the pain is very real, even though after so much time teachers and others who do not witness it may not be 100 percent sympathetic that it is real.


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## PattiD

I'm not sure it is a case of just accepting it. She was a trooper through the allergic reactions and Eosinophilic Esophagitis (EE) that caused her throat to become inflamed and swollen, hives, diarrhea and vomitting. She has now worked through that Eosinophilic Esophagitis diagnosis and the fact that she can not even enter the barn or be by the horses because she has a reaction. She was a trooper when her knees ached so much she could barely walk. She has worked through the celiac diagnosis, along with the gluten free life style. Her food choices are limited, due to this. In addition, fruit and some veggies cause her stomach pain.She was a trooper through her unending period, which thankfully is now under control on a birth control pill. But after all that, she is left with unrelenting stomach pain. She has constipation controlled by glycolax (miralax) and occasional laxatives. It's worse whenever she eats. It does not get better when she has a bowel movement, which are no longer dry or hard. It keeps her from sleeping at night. They have done many tests on her so the doctor's answer is IBS. I guess it is me that is not ready to give up and call it IBS. For a 14 year old to be in constant pain, with little to no relief, is not acceptable. I am actively teaching her coping techniques to help deal with the pain. I believe that we don't know what it is but I 'm not ready to quite trying to figure it out. I am getting her to exercise, eat as regularly as possible, etc. Anything else to try?


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## Lee

Has she been tested for fructose and lactose malabsorption. If you have this it causes a lot of pain?


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## PattiD

Who would do the testing for lactose and glucose malabsorption? Can a pediatrician order it? I think our peds GI has given up on other causes of the pain, other than IBS.


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## KRIS R

MY 10 YEAR OLD SON WAS DIAGNOSED WITH IBS LAST FRI AFTER A WEEK STAY IN THE HOSPITAL. HE HAS BEEN IN SUCH TERRIBLE PAIN FOR WEEKS NOW. I AGREE WITH YOU 100% THAT YOUR CHILD BEING IN PAIN ALL THE TIME IS NOT EXCEPTABLE. MY SON WAS MOANING DOUBLED OVER IN PAIN IN THE HOSPITAL WITH A TUBE IN HIS NOSE TO HIS STOMACH BECAUSE I WAS TOLD HE WAS BACKED UP 8 FT WITH STOOL. THE DOCTOR WOULDN'T ORDER ANY NARCOTIC PAIN RELIEVER BECAUSE IT WOULD STOP HIS MOTILITY TO GO TO THE BATHROOM. THIS WAS SO HORRIBLE. I TOLD THE DOCTOR IF THIS WAS THE PRESIDENTS CHILD THE DOCTORS WOULD DO EVERY TEST TO MANKIND, HOWEVER, THE DOCTOR WOULD NOT DO ANY MORE TEST BECAUSE THE BLOOD TEST WERE ALL FINE AND THE GI SPECIALIST SAID HE HAD IBS AND IT WOULDN'T BE GOOD FOR MY CHILD TO DO MORE TESTS. IT IS SOOOO CRAZY. THEY DIAGNOSE YOU WITH IBS AND SEND YOU OUT THE DOOR. MY SON WAS GIVEN MEDS AND I HAVE BEEN TRYING TO BUILD HIS STRENGTH BACK UP AND TRYING TO FEED HIM RIGHT. THIS HAS BEEN HELL. HAVING YOUR CHILD IN CONSTANT PAIN WITH NO WAY TO HELP THEM IS THE PAINFUL THING A MOTHER CAN EXPERIENCE. I AM SO SORRY YOUR CHILD IS IN PAIN ALSO. YOU AND YOUR DAUGHTER WILL BE IN MY PRAYERS AND THOUGHTS FOR HEELING.


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## Mom

Hi,Can't believe what I am seeing. I'm in the same boat witha twelve year old. we are all in our own personal hell not to mention the kids. Schools are not compassionate or helpful with this. Sazzy you are right, kids do need to learn to cope but tht is not all there is to it. Too many people suffer and suffer varying degrees of this. Those who worry about school--check with your school to see if you have a home bound program. A teacher will come to the house a few times a week to help keep your child up. Work with your child. Keep accurrate records so the school can never challenge you for truancy etc. Don't let your child just stay home---work with them on academics while they are home. Mine is home a lot or goes in late--we do not have a compassionate school nurse as she told us to take him to a inhouse pyschiatric place--needless to say NONE of my children go to the school nurse. They call me and I MAKE THE DECISION. Stand tough for your child!!! If they can't make it to school so be it! You must be encouraging, keep them active so this doesn't turn into depression, but be realistic! Think about it can you think of any other time in your life where you don't have the control to take care of yourself besides grade school, middle school or high school? Ifyou work---noone will say sit down if you leave a meeting? I am tired and angry now---schools need to be educated--my God 40-70 million people suffer this--how many are children? are that many people stressed out to the point of screwing up their bowels? more likely it is something else. fight for your child with school--explain to them if they can muddle through it helps you fight for them.If they do manipulate you, they are hurting themselves as you won't be able to fight for them. Talk with your child ask for their help> I totally accept my child when he says I don't feel well--we go hour by hour. he was home all day Thursday (we worked on school work when we could or he laid withthe heating pad and read his book) He had a bad "episode" Thursday night. Friday morning still felt bad, but went VOLUNTARLY for a math test Friday afternoon. Math is one of his worst subjects. I work with my child, I believe my child, I don't enable my child but I believe him!!!!! Don't letthe school pull the "school avoidance" thing. Your child has a recognized medical problem!


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## KRIS R

HI PATTI D,LAST YEAR MY SON HAD A TEACHER COME OUT FOR 4 MONTHS TO THE HOUSE ONE HOUR A DAY. MY SON WAS ON TOP OF EVERY THING IN HIS CLASS AND SINCE IT WAS ONE ON ONE HE WAS EVEN AHEAD. I DID HAVE A BATTLE WITH ONE OF THE SCHOOL WELFARE TRUANT PEOPLE HOWEVER AT FIRST. MY SON WAS SO ILL AND THEY WERE TESTING FOR EVERYTHING MY PEDIATRIACIAN EVEN MENTION CANCER. I WAS SO FREAKED OUT. THE RUDE SCHOOL DISTRICT LADY WAS SO RUDE TO ME. SHE TREATED ME AND MY SON LIKE WERE WERE NUTS, IT WAS JUST A STOMACH ACHE AND HE NEEDED TO GET OVER IT. SHE CALLED ME ON ONE REAL BAD DAY MY SON WAS HAVING AND I JUST TOLD HER OFF. THEN I WROTE A FORMAL COMPLAINT AND MET WITH THE SCHOOL DISTRICT SUPER W/ MY HUSBAND. SHE MADE ME FEEL LIKE I WAS MAKING IT UP OR SOMETHING. I WAS QUICK TO REMIND HER AND THE SUPER THAT JUST THE YEAR BEFORE MY SON GOT AN EAGLE AWARD FOR NOT MISSING 1 DAY THE ENTIRE SCHOOL YEAR. THEY SHUT UP FAST. OUR KIDS WANT TO GO TO SCHOOL! THEY WANT NOT TO FEEL PAIN OR BE SICK! PEOPLE JUST DON'T UNDERSTAND HOW HARD IT IS. THEY DID AN ENDOSCOPY AND FOUND OUT HE HAD MILD GASTRITIS. NOW THIS YEAR THEY ARE SAYING HE HAS IBS. I THINK HE HAS BOTH. WHEN I GAVE HIM SOME PEPPERMINT HE FELT WORSE, AND I READ W/ GASTRITIS IT CAN TRIGGER IT. GASTRITIS IS VERY PAINFUL. I DON'T KNOW WHAT TO BELIEVE. I AM TRYING TO GET A SECOND OPION FROM THE CHILDRENS HOSPITAL IN OAKLAND, KAISER IS JUST NOT HELPING AT ALL. THEY SEEM NOT TO CARE. I BELIEVE MY SON FEELS LIKE ####, I AM TRYING TO WALK HIM EVERY DAY TOO. SOME DAYS I FEEL HE IS GETTING BETTER THAN BAM! IT GETS SO DEPRESSING. I JUST WANT HIM TO WAKE UP NOT MOANING OR FEELING HORRIBLE. HE USED TO BE SO ACTIVE NON STOP. I HOPE YOU WRITE BACK AND TELL ME HOW IT'S GOING. I PRAY OUR CHILDREN GET WELL EVERY DAY. GOD BLESS YOU AND YOUR CHILD OUR IN MY PRAYERS. OH, I FORGOT WE ARE HAVING ANOTHER TEACHER COME OUT TO GET MY SON CAUGHT UP AGAIN AND NO ONE HAS HARASSED US AT ALL (THE SCHOOL HAS TO PROVIDE IT ALL YOU NEED IS A DR. NOTE THAT YOUR CHILD NEEDS SOME HOME CARE YOU PICK UP THE FORMS AT THE SCHOOL DISTRICT)KRISKRIS


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## Mom

Hi PattiD-kris is right. We just went to the gastro guy yesterday and got a Dr.'s note for 4 weeks of homebound. That means a teacher from the county comes out 8 hours a week to help keep him up. It is a lot but since he is going to try some new meds and a new therapy I think it will help. The schools can be sooo stressful. They all think it is just a stomache and the kids are avoiding school. see what you school district offers and ask your doc to write the script.


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## PattiD

It is bitter sweet to know that we are not the only ones going through this tough times. Becca's pain seems to have gotten worse, rather than better. She is cooperating, in general, with doing more activities, but it seems like the day after, she feels much worse. She went to school on Monday for a couple of hours, but called after an hour asking to come home. My husband convinced her to stick it out for the last hour. Yesterday, she felt that it was more an allergic reaction with itchy rash plus stomach pain and couldn't make it to school, at all. They were doing the state wide mandated testing, so now she will need to find time to make it up.I dropped her off at 9:30 this morning, with plans to pick her up at noon. It was good timing, we were able to walk around so she could turn in homework and I could talk to the teachers. I explained that she wasn't feeling better, but she was learning how to cope so she would be coming to school for a couple of hours, when she is able. They were all very cooperative and willing to work with her. Her math teacher gave her his home phone number, in case she needs help learning the material. Yeah! She just called to ask me to bring some food for her. She has a book club meeting, at lunch time, so she wants to stay until 12:45! I keep reminding myself (and hubby) too, baby steps. So much depends on how well they are coping, on that particular day. When the pain gets worse, it's hard to keep coping and deal with school, teenage issues, homework, etc.I feel your pain about lack of compassion and concern from doctors. My husband is a pediatrician, so he knows and picks all of her doctors. Her pediatrician and GI doc have both said that there is no need to see her because there isn't anything else to do for her. What kind of a doctor just gives up? If nothing else, talk to her and find out what she thinks is wrong. Maybe refer her to a psychiatrist, if necessary. Maybe a nutritionist could help with diet ideas, if it is due to IBS. I can't imagine telling someone not to come in! I think all of the doctors are frustrated that nothing has worked to help with her stomach pain. Guess what, I am frustrated too but I don't ignore it or give up. We have an appointment, in the end of November, for a second opinion, on the eosinophilic esophagitis and treatment plan. I am cautiously optimistic that we may find an alternative treatment that will help with her stomach pain, as well. As I keep telling Becca, the silver lining in all of this, is the wonderful relationship that I have developed with her. She is my hero! She is a strong, loving girl who has learned alot about herself and others, through these challenges. I expect that she may be some sort of therapist when she grows up. She is very empathetic and is emotionally very mature for her age. She is seeing a wonderful therapist, who is helping her to cope with the anxiety of having chronic illness. I am thankful that we found someone that she can relate to and feels comfortable sharing things with her. Her appointment last Friday was cancelled because the therapist was sick. Becca is looking forward to her appointment tomorrow. I guess that makes it worth missing a half day of work to be able to get her there.Happy Halloween! Becca invited a friend over to watch movies with her. Her 8 year old brother will be out trick or treating tonight. Not sure if it will be me or Dad that stays home tonight. I enjoy the trick or treating but wouldn't mind a night at home either.


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## 15093

I know what these teens are feeling! I'm 14 and I know how awful it is when you first dicover you have IBS, I have always been prone to tummy aches etc. and there are tablets and other things you can do to avoid these pains after eating.A few years ago, when I found out I had IBS, the doctor told me to cut out any acidic things in my diet and white bread ( I can't remember the reason for white bread). So I ate brown bread, stopped drinking juice and everything was fine. The doctor also gave me some peppermint oil capsules ( colpermin) which really helped.Soon after I could stop taking the peppermint oil and could stick to my new diet.But a few months ago, I started drinking orange juice and eating a bt of what I'm not ment to. This came with terrible results; the pains returned, but worse than before. So I went back to the doctor and he told me I was one of the unfortunate people who could feel the bowel movements. Me and my mum decided it was linked with IBS, which it is really!The doctor gave me some peppermint oil again but this time it took longer to kick in. My Dad and my Aunt both have IBS and my Grandma has Colitis, so it kinda runs in the family, which is quite lucky, because they can reommend what to do and stuff. Anyway, these pains were still there a bit, very uncomfortable, so luckily, my aunt gave me so IBS tablets, which are unsubscribed ( and so are the peppermint oils) and they have helped me alot!So now thankfully, I am back on track.By the way, I associate IBS with worrying cause I worry alot, so if ever you or your teen, have a nice bath and relax your muscles that always helps me!


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## gbourgeois

Dear Patti and others,My 13-year old daughter will see a gastroenterologist (not sure if that's the right spelling!!) on Nov. 19. Much reading and people's personal stories make me fairly certain that she has IBS. She has been struggling with her stomach for many years. When her schooling started to be affected, we met with her homeclass teacher and with the Vice-Principal. They then passed on the info to her other teachers. We were very fortunate because they will grade her according to what she does when she is at school, and will not be penalized for assignments handed in late or tests missed. They also gave her a copy of the school manuals, which she can work from home and e-mail questions to her teachers. We were lucky they were so understanding!But what has made a world of difference in her over the last month has been the change in her diet. Although she is not lactose intolerant, switching her to lactose-free or 1% milk has made a huge difference. So has also cut out red meats. She still resents eating only fish, poultry and seafood (misses her steak and speghattie with hamburg & tomatoe sauce), but remembers why it's important when she cheats a bit and ends up with severe cramps and/or diarhea the following morning. These diets changes are apparently also successful for those with constipation tendencies as well.I urge all of you to purchase (or borrow from the library, if they have it) the book that has given her a new lease on life. It's called "Eating for IBS", by Heather Van Vorous. Check out her website, too!! ../books/efi/books_efi_home.asp I want to get her other book, too.Let's keep reading, learning and sharing. Together we can cope better! Kind regards, Ginette


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## KRIS R

EATING FOR IBS IS A GOOD BOOK!!! I'LL TRY THE 1% MILK TO0. THANK FOR SHARING. I HOPE YOUR DAUGHTER IS DOING BETTER TODAY.


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## lauralove

i am 13 and i go through the same thing. Try buscopan because it takes away the pain and helps with the loo situation if you know what i mean. its really good and it works really fast.


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## gbourgeois

Thanks, Laura. Does your doctor need to prescribe buscopan or is it something you can get off the shelf?I guess I spoke too quickly about my daughter getting better. She is has been feeling nauseous and vomited a few times over the past two days. Is this part of IBS too? She doesn't seem to have a fever, so I don't think she has gastro... As a parent, is it almost as tough on me as it is on her because I feel so helpless, sometimes!


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## 15093

gbourgeois,I don't know whether vomitting is part of IBS but sometimes nausea is, look it up on the internet to make sure. Hope she feels better soon! I know how hard it is to be a parent, when your childs got IBS, my mum use to stress all the time, taking my back and forth to the doctors! If you need any dietry ideas or anything I've got a topic about it in IBS Abdominal pain, mines called help for everyone! Hope it helps!


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## Volleyball Girl

Dear mom(gbourgeois),I know how hard it can be having a child with IBS (although I dont have any myself), but I want you to know that you dont need to be stressed for that because I know you already have enough problems to deal with. P.S. If any one has any ideas to help cope with my moms stress, please let me know.Volleyball Girl


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## Stasy

I have an almost 14-year old with IBS-C. We have opted for a super high fiber diet. Here are the details:1. Absolutely NO MILK - lactaid is the only milk she gets2. High fiber oatmeal for breakfast - 2 packs gives 20 grams of fiber3. High fiber protein bars for snack - usually 9 grams per barLight meals. She seems to be eating more per meal than she has in the past, but if the meal has dairy, she is limited to a salad sized plate and follows the meal with a fiber rich yogurt.I am also planning a visit to a specialist (in May) and will post the results as well.Best of luck,Stasy


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## gbourgeois

Hi Stasy,I didn't think anyone still looked at this forum... it has been so long. I'm happy to report that my daughter, who turned 16 last week, is finally managing. Last year, it's amazing that she passed her 9th grade, as she only attended about 40 days of school throughout the entire year and self-taught herself through exams.We have been through hell and back, and I am ever so grateful that I did not know what laid ahead when I first posted a few years ago. It's no fun to get to know ambulance drivers and all hospital staff on a first name basis. :-(There were a few primary reasons for her gradual return to real life:1. a wonderful accupuncturist2. a caring anesthesiologist, who removed the dozen or so meds my daughter was (overdosing) on and replaced this garbage with: gabapentin (which goes to work on the tip of the spinal cord and affect pain neurotransmitters), amytriptalin (to relax the muscles), minovral (to regulate her menstrual cycle) and Tramacet (only on the really bad days, and a downgrade from the morphine and percocet she was once on...).3. a cool massage therapist who knew about medical messages4. an outstanding and ultra-cool male psychologist who helped her through this mess and keeps her stresses in check5. stool softneners when she is constipated and ultra-strength liquid pepto-bismol if she has diarhea6. tweaked diet -- but we are still learning in this dept!7. last but not least, the support of her school and teachers -- not all were equally giving, but most were essential to her success. Only now is she able to start to get back into sports (in moderation) and host sleepovers, which is so nice!!I like the high fiber diet you are trying for your child. Over the years I have found too few resources on IBS, and lots of conflicting info amongst the ones we did find, so we have had to wing it to find what really works for us.Thanks again for posting. Hope everyone is doing better out there!Cheers,Ginette


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## Stasy

Thank you so much for replying. I knew that it would be a long shot, but just had to take the chance.I am sorry that your child has to take so much medication. I am thankful that right now, my daughter does not....but God only knows what's coming with IBS-C.We just re-started a food diary so that we can take it to the specialist in May. Hopefully something will jump off the pages at me as well and I can see if there is something else that I am missing.


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## Ginge...:)

Hi stassy, I am a 17 who was going through the exact same thing lat year. The first few months after i was diagnosed was awful, if my mum forced me into college i just felt angry at her for it, and always left for college in a temper. Since she has become more relaxed about my attendence, i have felt more encouraged to go. Perhaps talking to someone in her school and making them aware of her problem could help. I know it helped me, my mam talked about my problem with my tutor, not going into details but just saying i suffer from symptoms of IBS which make attending difficult at times. since then, college life is a lot easier. I think its REALLy hard trying to adapt to having IBS and making it part of your lifestlye, once she has a balance and can manage it, things will get easier. I still have good days and bad days, but my mam being understanding about the bad days makes things a lot easier. Sometimes i will just go in for a half day, but if things get too difficult then i will come home. Obviously it is easier for me to come home on a half day since college is morer relaxed than school about attendence, perhaps speaking to her school would help One medication that i have found helpful with the cramps brought on by IBS is mebeverine, i used to take it 3 times a day but now just take a tablet every morning. It is brilliant and i don't suffer from painful cramps anymore. However, it it is IBS C that she suffers from, this tablet may not work, have you tried pro-biotic yoghurts or things such as actimel? i am starting to eat a pro-biotic yoghurt every morning which is supposed to help with digestion Best of luck, i hope things get easier for you


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