Children with ibS
#264084 - 05/18/06 07:19 AM
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mykidhasibs
Reged: 09/20/05
Posts: 22
Loc: Virginia Beach Virginia
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Hello. I come and go to the message board depending on how my daughter is doing with her ibs. I was wondering if it has ever been considered or would be considered to make a message board for parents of ibs kids.
We watch our kids suffer in terrible pain, worry about them, try to get them in balance, and try to understand a disorder that disrupts their life with pain.
When I first came here searching for the word "child with ibs" or even "child or children" I did not find much in advice. I have found a few other websites that have some webpages with advice on dealing with kids with ibs, but a forum of support for our situation would probably be helpful to parents who need information and support.
Another suggestion would be having a subject area devoted strictly to "children with ibs" with a icon to click on that goes right to pages of information like from Heather's book, and updates from the newsletter just about children etc.
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I would think that dietary suggestions would be the same whether a child or adult. Red meat, fried foods and the like aren't good for any of us so perhaps this is why we don't have a "child only" board?
There are several parents with kids who cruise the boards, ask questions and the like...I would bet that if you posted any questions or concerns on the EFI board parents would respond. Many parents post with a subject line of "11 year old" or "10 year old" which is why you don't find anything specific to "children".
The only thing that as a parent I would worry about is calcium...you may need to find creative ways to get calcium in your little ones body.
Am I correct in assuming that your daughter has gone through all of the recommended tests to get an accurate diagnosis?
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Have a blessed day! Rachel
Formerly poochibelly...
I have IBS but it doesn't have me!
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Hi and thanks for posting!
I lived with IBS with D since I was six. I remember all of the pain and the misinformation I was given by well-meaning adults. There are many of us oon the site who suffered as children, and now have kids with IBS themselves (there's a strong genetic connection).
I'd be glad to offer info on how I coped, and I don't envy your position of watching your child in pain. There's a real sense of hopelessness and isolation when our bodies take ofer our routines and shake our confidence, but it's equally hard to see the hopelessness in our parents and love ones' eyes when they try so hard to help/sympathize.
Stay strong and ask questions. There's real help on these boards if you ask questions. The people here have first hand knowledge and are very caring and empathetic. All the best,
~nelly~ 
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This site is for everyone, regardless of age. I've had IBS since I was 11 or 12 and diet has always effected me the same. You could try posting for other parents and see if they want to start something via e-mail with you. There are a lot of parents that come here for advise and I think it's wonderful. I didn't have anyone to help me with IBS so I went a decade before I was even diagnosed.
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If you're not dead, you've still got time.
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Nelly,
Since you have lived it, I would like your insight. Right now we cannot get my kid pain free. The GI doc has her on prilose twice a day and bentyl 3x a day. For 3 months the bentyl was a miracle drug. Now she has pain anytime she eats, therefore, at school and at breakfast she does not eat. She eats when she gets home but has lots of pain. I hold her, we do relaxation, heat packs etc. I cannot get her to consume enough calories and so at age 8 she is 43 lbs. She just had an endoscopy, to rule out celiac, ulcers, hpylori etc. she had some inflammation in the esophogus, but all other biopsies were normall.
I just bought heathers peppermint capsules, and she has had one, but she had problems swallowing it, and it really made her stink! I guess the fennel and ginger do something to her. I am not sure if it helped or not.
Any advice what not to do or what to do thru the eyes of a child? I am as supportive as I can, believe her cause I know she has real pain, comfort her all I can, but I got to tell you it sucks thelife out of me.
Thanks
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I don't envy your position.
OK, morning attacks. For breakfast growing up I had to hide the fact I wasn't eating in the morning, because it hurt so much when I did but my parents always forced me to. I had to get up early, grab a bowl and dirty it up. I put it in the kitchen sink to make them think I'd eaten. 
Truth is, it's always killed my day when I eat in the morning. For me to have a stable morning, I stay in bed at least 40 minutes lying down while I wait for my stomach to stop churning. Then I get up slooowly, and never eat anything before about 11. By then my stomach is calm and I can put something safe in it.
Overeating is a problem for me because I feel hungry when my stomach is safe. It's like it hurts all the time, and then I just go straight from that to insatiable hunger. I'm not in pain, just hungry. I have to really monitor my portions, because if I overeat I'll have a pain attack.
My food attacks start 1/2 an hour after I start eating. Typically, I'll have eaten something unsafe (IF or dairy) or overheated while I was eating or had pressure on my stomach from jeans or a seatbelt (seatbelts are the worst!). I can set my clocks by those. Half an hour after I've started eating, if I don't have an attack, I'll know I'm ok. 
My nighttime attacks start after I'm startled awake by a loud noise, or if I overheat. Heat's a major trigger. That and pressure on the stomach. I have to sleep with no elastic or drawstring whatsoever on my tummy. This means long nightshirts only. Sounds stupid, but it really works. It's an easy thing to correct too.
Don't pressure the child to eat if they're not hungry. The body needs some time to recover after an attack, and it's not uncommon to wait 3 meals before trying to have some food again.
Mealtimes go right out the window. I feel that if I wasn't forced to eat at regular intervals and completely ignore my body, I would have stabilized a lot sooner.  Now I eat when it's appropriate for me. I do it on the sly so people won't Make a Big Deal Out of It.  I learned this around age 10 or 11 and after getting over the fact that I wouldn't be over to my best friend's house for barbeque any time soon, I was more the better for it. 
I was a skinny kid too (and tall, ugh!), but some kids are. Don't compare anything to what "normal" kids do or are. It's a special situation having IBS. We have to go with Whatever Works.
If you haven't tried these meds already, give them a go: Donatal for stomach spasms, Simethicone to control trapped gas (and therefore that ripping gut pain that comes from gas), and a low dose tricyclic antidepressant at bedtime like nortryptaline (6 mg) or amatriptyline (6mg) [more can be taken for the anti-depressant effects, but the low dose will help rewire the brain-gut reaction and cut down on the frequency, duration and severity of attacks].
Good luck. Sorry for the long post-- I hope you can find some of the information useful.
~nelly~
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My kid is you exactly. I have never forced her to eat after realizing her disorder was real and that it causes pain, but there comes a point where i know she is burning ketones and muscle and I have to insist on some intake! She looks like a little skeleton with dark circles under her eyes! Right now there is no safe food for her. Anything she takes causes severe pain. I have another call into her GI MD and am hoping that they give us something else like what you have mentioned. When her pain is gone, she is a different child. When she knows the food will cause pain, she is clingy, scared and anxious. She also has had moments of starvation where she is so hungry she does not know what to do but then when she eats she is sorry she ate because of the pain.
For 3 months the bentyl worked, and now I do not understand what has changed to cause it to not work. I guess I am learning this is a life long disorder and what worked today wont necessarily work tomorrow.
Thanks for the advice.
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{{{BIG HUGS}}}}} to you!! Never give up!!! I know this is not easy to deal with. I too tried meds which would work for a while, then stop. Now, I take codiene before I eat (tylenol #3) and that really helps, because I can eat without pain and the medicine constipates me just a little, which makes it easier for me to go to the bathroom. A little slower, too (I'm a D).
You have all my empathy and support. Just pay close attention to whatever works for your darling daughter, and I hope you have more good days in the future. Best~-
~nelly~
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