My daughter
#93704 - 07/27/04 09:01 PM
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daisy2
Reged: 07/19/04
Posts: 45
Loc: Washington
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Well.. we saw the gastro doc. today and she was diagnosted with IBS. However, I'm a little disappointed about what the doctor said and is doing about it. He first listen to her talk about all her symptoms while I remained quiet. He explained the brain gut thing to her and then said that there are really four major things that play an important role with IBS. 1) stress, 2) genetics, 3) viruses, and 4) diet. He said that she should take a pepcid at night before she goes to bed and that was it. No tests. No fiber supplements. Which I asked him all about. He doesn't want to see her again. I asked about her gaining more weight and he said she looks fine to me. At that point, I said do you see a lot of children her age with IBS? He said about 4 or 5 a week. I said do they ever get better? He said some do and some don't. Anyways, he was so vague that I let feeling frustrated. I actually had Heather's book with me " The First Years" and showed it to him. He didn't really say too much. My daughter said, Yah, she's always on this website now and I drink peppermint tea all the time too. He just stared at us. I left feeling like he didn't tell me anything I didn't already know. Is this common with doctors? Did I not ask the right questions? Any thoughts would help right now. Thanks.
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Ummmm this doctor sounds like a fool too me, and sounds like you had an experience a lot of people have had on here all too often.
This really bugs me because you can't "officially" be diagnosed with IBS without ruling out other things.
I don't think you did anything wrong on your part and I hope your daughter is truly grateful to have such a caring mom like you! You sound like a wonderful mom 
I just wish that this silly doctor would have been just a LITTLE more interested and helpful. I REALLY think it would be wise to try another doc. You and your daughter both need someone who really cares and can offer you some sound advice.
-Caryn
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I agree with Ibsgrl, you didn't do anything wrong, it just sounds like another idiot GI who's not taking things seriously. I think you've mentioned this before, but how old is your daughter? I would try and get a referral to another GI, because like Ibsgrl said, you just can't be diagnosed with IBS without ruling out other things. I was told I had IBS when I was really young (about 11 I believe) and now I'm really sick and have been having a lot of problems, and I'm just now getting some doctors to take me seriously...you really have to fight to get the care you deserve.
Your daughter is lucky to have such a great mom!
Kelly
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Ok, not a doctor, but this is based on my experience of being little with IBS and GERD and what my doctors did...
Well, it sounds like typical gastro stuff to awhile... and then it sounds bad. When I first got sick my pediatrician did EXACTLY what that gastro did, which is fine for a pediatrician. When the pepcid (which was prescription only at the time) didn't help, she referred me to a pediatric gastroenterologist. Who ran a bunch of tests on me and then told me that she could run a bunch more tests on me or control the symptoms of my probable GERD (which is what pepcid is for, not IBS). I didn't want any more tests so I got medicine. The tests are hard to do on children, because their digestive system hasn't finished growning and is quite small, but you can do them. (You might have to do them again as an adult). At the very least they should have done an ultrasound and checked for organ damage (if I'm remembering correctly) and a blood test or two. I didn't get diagnosed with IBS too until a few years later down the line after I'd switched medicines quite a bit and some of my symptoms were fixed and some just wouldn't go away.
I would suggest taking her to a new gastro who will do some tests on her. I always suggest women doctors. I know it's sexist, but they have just repeatedly worked out well for me (my pediatric gastro and my current gastro are both women, the 2 men I tried going to inbetween sucked).
Arrgh, hang in there. I hope your daughter appreciates all the love and support you are giving her though. Sometimes I think getting those things so early is a blessing. People around here find it hard to adjust their diet and way of living when they get it as grown-ups, but I have always eaten for my GERD and IBS and I'm a healthier happier person for doing so.
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Doctors, Doctors, Doctors (Shaking head) I am not surprised to read that this was your experience. When I went to my doctor he diagnosed me with IBS, sent me home with some pills and never said anything about the diet change or anything. When I discovered Heather I promised myself to try her diet for one month and see how I feel. It worked!!!
So I changed doctors (mine was just a prescription slinger dorkus) and I told my new doctor about what I was doing to combat my IBS she kinda looked at me with relief. Like I didn't need any help. She said "Whatever is working for you..keep it up!"
I personally think maybe some doctors really have no clue as to what to do about IBS. If Heather's diet is working for your daughter I would stick with it. Don't stress that a doctor didn't agree....what ever works!! As my doctor said LOL
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Lana_Marie
Proud Mommy to Bentley Taylor
Born May 12, 2004 9lbs, 3oz
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I remembered your telling me you visited Mass. it's a shame you're not still here. My doctor is wonderful. Head of the department at Brigham and Women's in Boston. And I was so sick this week (they think I have a parasite this time) that he told me to see my PCP and that he'd squeeze me in next week between patients.
The "good" IBS doctors understand at very least about soluble fiber and possibly muscle relaxants so that you don't feel "flare ups" with as much force.
I agree with everyone else who tells you that you should definitely find a new doctor. It took me several tries to find the one I have, but I wouldn't trade him and his knowledge of this disease for the world.
Karen =)
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Goodmorning.
Thanks for your response. I'm curious what is GERD? Also, when were you diagnosed with IBS? It's funny you mention a women gastro because I told my husband last night, the next doc I try with her is going to be a women. I know that there is little tests to do on her as a 9 year old and she has already had the blood work done by her ped. doc. Everything checked out fine. We asked the doc yesterday about hypoglycemic because she just feels terrible if she goes more than 2 hours between meals/snacks. He said he doubts it. Really made her feel like it was all in her head. I'm calling his nurse back this morning to ask some more questions. I really don't think she has acid reflex so what would the pepcid do for her? Although, she does have a tightness in her throat that she decribed.
I let her have some ice cream after no dairy for a week last night and she said she was fine. Probably shouldn't have. I have her on vanilla silk for everything else.
I feel a real connection with you. Thanks for all your help. Carolyn
P.S. I need to get a picture of us up so you can see the faces behind this email. How do you do it?
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My daughter's ped. doc when we first saw her about this 5 months ago thought she had a parasite too. Giardia was what she thought she had since we travel quite a bit but turned out negative. Hope you feel better soon.
How do I go about finding a good ped. gastro for her?? This one came highly recommended from her ped. doc? Should I do a post on this site and see what happens?
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GERD is gastroesphegeal Reflux Disease. Or, acid reflux constantly. So I agree with you that if she doesn't have that, the Pepcid isn't going to do anything.
I would ask your pediatrician for a recommendation to a good pediatric gastro doctor. That's where I found my first from.
I was diagnosed with my GERD when I was 12, and my IBS when I was 14. I'd always had problems with food and umm... digesting food though. My whole life that I can remember. I had serious problems with constipation when I was very small and they fed me a lot of mineral oil (yuck). Coincidentally I also became a vegetarian when I was 12 or so, which helped my IBS a lot because I wasn't eating red meat or a lot of dairy which is a no-no for people with IBS.
A lot of IBS-ers (me included) can't take having an empty stomach and need to eat every couple of hours or so. So that could be a sign of IBS.
You could buy her some soy ice cream... then she could eat a little bit whenever and not feel deprived!
As for the picture, you need somewhere to host it (a lot of people use photobucket.com), they'll give you instructions on how to upload it and then you put the URL in your homepage profile (on this site) and there you will be! Or you could email a photo to Heather and she'll put it up when she gets the chance. We're always happy to see the faces of people we talk to around here.
I'm glad to be able to help... I do understand what it feels like to be young, and my parents really had no idea (though lots of good intentions) on what to do.
Jenny
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Her ped. doc actually recommended her to the ped. gastro we saw yesterday. That is why I'm not sure now where to turn.
As for her constipation problems, what are you taking for it and is it helping. What should I get her on? Her ped. doc recommended Mirralax but I would like to get her on a supplement.
The soy ice cream is a great idea. We have Trader Joes here which I love for stuff like that.
Carolyn
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You might ask the doctor for another referral. Or call the hospital you went to and ask if there's someone else in the department.
As for a supplement, I would go with Citrucel Caps. I've been on them for 2+ years and they've had me in good shape, with the exception of the last week. They are soluble fiber and they don't give me nearly as much gas as Metamucil.
I find also if I start my day with a small bowl of oatmeal (1/4 c oats + 1/4 c water) with nothing on it, I feel much better. It can get monotonous, but it always smoothes out my system better than anything else.
I also suggest eating small meals throughout the day when possible (snacks like Arrowroot crackers, Saltines etc, little apple sauce cups (unsweetened).) I thought I was hypoglycemic too. I'm not. But I thought I was and the little snacks have helped.
My doc also suggests that when you're sick and don't feel like eating to drink Ensure or one of those supplement shakes so you still get your calories.
For nausea... either ginger tea, or flat gingerale works every time for me. I'll let you know how things turn out. Keep me posted too.
Karen =)
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Doesn't Ensure have dairy in it?
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Thanks Karen, I really appreciate all your help. 
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My Mom suggested Ensure also and I thought it had diary in it. We are concerned about my daughter's weight loss. What's your thought on seeing a nutritionist to help me help her before she gets too thin. This IBS diet is sooo low in fat. She had D today and it doesn't surprise me because I let her have some ice cream which can be sooo rich. Also, what do you do for drinks? Just water and tea gets so old so fast.
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Food
#94104 - 07/29/04 01:11 AM
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daliatree
Reged: 07/10/04
Posts: 1176
Loc: Manhattan, New York
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Hey there
First I wanted to say that you are such a good Mummy. Its such a difficult, vague illness to deal with in children and you are so focused on your daughter.
About the food....if you want to fatten her up: if she can tolerate sugar (I can't really) then that is the way to go with keeping her weight up, as opposed to fatty foods which kill the gut. All the cakes in Heathers books as so phenomenal.I can't eat them but my husband devours them!!! Have you tried giving her soy ice cream? The products today get better and better. Same goes for soy yogurt drinks (a new drink for her). You can get soy cheese to put on home made pizzas. Grill potato wedges which are so yummy brushed with a tiny bit of oil. Just make sure as much as possible that she is taking in lots of carbs and she will be fine.
I know its not easy not to panic. I'm 25 and everytime my mother sees me lose a few pounds because of an attack she gets frantic. Its a mothers place. You are both currently going through the 'finding out how to manage this phase'....it takes trial, error, pain and a degree of weightloss. I have no doubt that with a mother like you she is going to be so fine.
Once she is stable you can start to experiment with fruit juices re: having more exciting drinks. Heathers book also has amazing beverages to try out. Again, a lot of them are reliant on sugar, but most people with ibs can tolerate it so don't worry too much about the fact that I can't!
Good luck!!!
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Feel the fear and do it anyway!
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That is my real name too. My family calls me Carolyn, but everyone else calls me Cara.
I never meet people named Carolyn!
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~Cara~
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First of all, I'm sorry to hear about your daughter's experience at the gastro. Unfortunately, that's all too common.
Following up daliatree's wonderful post, I just wanted to leave you the link to the Recipe Section overview. If you scroll down the page a little, you'll find links to all the different recipe sections here on the site - a sampling from Heather's cookbook and cooking show, the newsletter archive, the message board, and the message board index. Read through the recipes together, and I'm betting you'll find some treats that she's sure to want to try - and they're all safe! Personally, I recommend the Peppermint Fudge Cake and the Chocolate Applesauce Bread... so good!
Also, as far as drinks go, the only fruit juice that's IBS-safe is pure cranberry. Personally, just about every other juice (grape and apple, especially!) gives me D, so you might want to go carefully with juices. I know this is something that's not exactly recommended, but if she's feeling brave, have her try some Kool-Aid (I buy the packets and make it with less sugar) and Gatorade. Even when I was having a lot of D, I could drink Gatorade without problems... I still wouldn't recommend making it *all* she drinks, but a little is a nice break from water and tea, if she can tolerate it.
For drinking, I find rice milk (I buy vanilla Rice Dream) to be a lot tastier than soy milk, but that's just me. I also prefer Rice Dream "ice cream" to soy ice cream... just a couple suggestions, if she tries soy and decides she doesn't like it.
Oooh, one more thing... if she likes iced tea, try brewed iced redbush (rooibus) tea. It's still technically an herbal, but it tastes a little more "tea-like" than, say, peppermint, fennel, or chamomile.
I know you're concerned about her weight loss - I'm 29, and my mother STILL worries because I've lost weight - but she will stabilize and her weight will too. Hang in there, both of you!
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I agree with pretty much everything Dalia said below regarding food. I think a nutritionist could be a good idea if you can find one who knows about IBS. As far as drinks go... what about iced fruit tea? Some people are sensitive to cold drinks, but raspberry tea is pretty yummy cold. Or I have some Westsoy Soy Shake. It comes in chocolate and vanilla and is really thick and creamy and yummy. It could also be the basis for fruit smoothies. And finally, what about cold chai? Chai is delicious too.
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Nope, Ensure doesn't have dairy in it. Checked with both the PCP and the GI doc this week because I've been so sick and barely able to eat much of anything...
If she can tolerate different flavors of herbal tea (they have a great blueberry one out from celestial seasonings-- also raspberry is good, too), that's usually how I keep myself from getting bored.
I don't know if this is a general no-no or not... but I also drink Gatorade at half-strength these days because I haven't been eating much to keep my electrolytes up. (Doc's order.) I drink it at half-strength because it has a lot of sugar in it.
If you need more help, let me know.
K =)
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Ensure isn't dairy, per se, but it does contain "calcium caseinate". I'm not 100% sure about this particular ingredient, but generally speaking, casein is a dairy derivative, and some people with IBS can tolerate it just fine, while others find ANY dairy derivatives to be triggers.
Not saying that she shouldn't use them, but like anything else, it might be better to buy a couple cans and try a little at a time before investing in a case deal at Costco. Heh.
As a side note, I'm having the same problem with eating and am thinking about trying the Ensure too... how do they taste? Any flavors better than others?
Glad to see someone else can handle Gatorade... now I don't feel so bad for recommending it! 
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Hi Carolyn,
I'm a Carolyn Marie. What is your middle name?? When ever I go back east everyone calls me Caroline. 
Have a great day 
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Thanks Karen.
I will get her some Ensure today and see how she does. I also called her peditrician back today and we are getting referred to a ped. gastro at Oregon Health Sciences which is excellent out her and a female doc too. The only thing is she can't get in for about a month which sucks.
Hope you are feeling better. Take care of yourself.
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How many Citrucel caps do you take per day?
I have been on Citrucel for about 4 months now and am taking 4 caps per day.
They do not regulate me as much as I hoped, perhaps it is time to move on to 6 or 8 caps per day. The directions say I can take up to 12 caplets per day, and my doc is letting me make the decisions on intake amount.
Personally, I don't think I am taking enough Citrucel to help with a BM. Since you have been on them for 2+ years, I just wondered how many do you take per day?
Thanks!
Lene 
--------------------
God never promised life would be easy, but he did promise to provide a way out!
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My name is Carolyn Sue. Sue is my mom's name.
Every time someone is writing my name they write 'Caroline'. It drives me nuts! I don't like when people call me that either!
Now that everyone calls me Cara, and I write it a lot, I get called 'Car-a' instead of 'Care-a'.... maybe I should just stick with Sue. Haha.
Nice to meet you!
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~Cara~
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it's got dairy proteins in it, and some varieties are also very high in fat. I would not drink these - do a board search for smoothies instead, or check health food stores for Amazake rice shakes. Just as many calories, but a heckuva lot better for her and not IBS triggers.
- H
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Heather is the Administrator of the IBS Message Boards. She is the author of Eating for IBS and The First Year: IBS, and the CEO of Heather's Tummy Care. Join her IBS Newsletter. Meet Heather on Facebook!
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Hi,
I know Ensure contains a dairy derivative.
I was nervous about it too. But I had a very serious flare up 2 years ago that put me in the hospital and they still had me drinking Ensure to know I was getting my nutrients after I went home.
I have been unable to find the rice shakes Heather refers to in my area. So I don't know what's in those.
I am severely lactose intolerant and Ensure doesn't bother me.
(In fact, I'm trying to get a sample for the doc to see if I have a parasite, and normally if it were to bother me I'd get terrible "D" and I've had no luck in 3 days.)
Let me know if that's what you decide to do how it works. I am glad you have found another GI doc. Let me know if you try the Citrucel Caps how they work for her. It may take a week or two to get things worked out.
I'm not feeling great, but if I can help someone else out meantime, that will make me feel better.
K =)
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Hi Lene,
I take 4 per day (2 in the a.m. and 2 in the p.m.) and I'm OK. I am also very small. My doc said that ideally I should take 3 doses per day unless I found that 2 was enough.
I think if you find you need to take more, go ahead and take ONE extra CAPLET at a time until you find a level that works. When I was adjusting from 2 caps upward I always moved up by one cap at a time for about a week.
I hope that helps.
Karen =)
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Your hunch is right - you're not taking enough to help with a BM. 4 Citrucel capsules, if they're the same capsules I used to take, is only 2g of fiber a day - a long long way from the 12-15g a day Heather's guidelines recommend. (Not everyone needs to take that much, incidentally - I think a lot of people around here stabilize around 9-10g/day. But still... 4 capsules probably isn't enough to do anything.)
I'll let Karen tell ya how much she's taking, though. I'm not taking Citrucel anymore, so I don't have any real input on how much it takes to be effective.
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Nice to meet you too, Care-a.
I love your quote. It gives me goose bumps everytime I read it.
Have a great day. 
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Thanks, Heather. I bought some today and she drank half of one and said she didn't feel good so guess I will be drinking the rest of them.
I will make another trip to the store today to get what you suggested.
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Aw
#94320 - 07/29/04 04:50 PM
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kemulvey
Reged: 07/05/04
Posts: 98
Loc: Mass.
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Aw,
I'm sorry to hear she wasn't feeling well.  I've never had a problem with them and I'm sensitive to everything. I guess everyone's different.
Let me know how the fiber works out.
Glad she found a new doctor.
K =)
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Hi Karen,
I just wrote you a novel but then pushed a bottom and erased everything. I can't believe I just did that. I was saying I can't believe you were hospitalized for IBS. I had no idea it could get that serious. Although the thought did cross my mind last night because I'm worried about her getting to thin and all this low fat food, how in world is she going to gain any weight when she is eating no calories all the time. I'm going to do a search after this for some recipes and then go to the store and get some stuff to fix for the weekend. That will make me feel better.
I'm going to try and get her into her new doc. before a month. She needs to be seen right away and I'm going to call her ped. doc and have her weighted and looked at. At this last gastro (idoit) doc we went to yesterday she had stayed the same weight (67lbs.) but she has grown 1-1/2 inches in three months. Her clothes are so loose on her that I can't believe she is the same weight. Anyways, hope you get to feeling better. I'm going to try and get a picture to Heather this next week so you can see what we look like. It's always nice to see a face behind the emails.
Thanks again for all you wisdom and take care of yourself.
Carolyn
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Re: Food
#94368 - 07/29/04 07:55 PM
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daisy2
Reged: 07/19/04
Posts: 45
Loc: Washington
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Thanks for all your helpful information.
I am going to get Heather's food book so I can make some of the yummy recipes I have been looking at. I had her try some of the soy yogurt today and she took one bite and said "yuck". I tried two different brands - Silk and Whole Soy & Co. She is just getting use to the Silk Vanilla for her cereals in the morning. She will also eat the Cuties from Trader Joes. They are like vanilla ice cream sandwiches (diary free) and are so yummy. I have been trying to help eat some of the foods along with her so she doesn't feel so left out. It was really hard last week as she was at camp and I was a helper and she couldn't eat anything the other kids were eating for snacks. At one point, she got mad at me and wouldn't speak to me but she has gotten better now because she wants to feel better and is really trying to help herself in everyway she can. It's hard because she wants to be like her friends and I understand that. Anyways, I'm rambling.
Thanks again for listening.
Carolyn
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Hi Carolyn,
I know what that's like. (Darn Computers-- I worked in IT for 3 years) I'm starting to feel a little better...
If you want to zap me an email sometime feel free. If you go to my profile there's a website listed and you can send comments through the form and I can send email back.
I also can host a picture if you need me to do that. Just zap me an email through the form and I'll tell you what to do from there.
All Best,
Karen =)
Edited by kemulvey (07/29/04 08:02 PM)
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Okay, is it just me or what.... I just sent you an email on your Contact page and it wouldn't go through darn... it took me awhile to write this too. Oh well, maybe you should email me first at my address. I will leave it for you.
Glad you are feeling a little better.
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