Anyone got experience of a child with IBS? My son has been having bowel issues for 2 years. Very long story but essentially started with chronic/watery diarrhoea 5 times plus a day, debilitating stomach cramps and nausea. Had blood test/stool samples for coeliac/IBD etc. All negative. Diagnosed with IBS and wheat allergy (had a high RAST result for wheat so we have cut out wheat) The paediatric consultant reviews him every 3/4 months ‘to keep an eye on him’ Its like they can’t find anything wrong with him, so he left to put up with the symptoms.His symptoms seem to come in waves. 5/6 months bad, couple of months reprieve and then back again.This last eight weeks have been awful. He’s getting terrible pains day and night (always behind his belly button), nausea, sickness, urgency to have a bowel movement (sometimes diarrhoea, sometimes not) He’s missed a couple of days school since September and his teacher has even phoned me to say something isn’t right. He’s only 5 stone. I got a call to pick him up this morning. He’s been sick and doubled over in pain lying on the teacher’s office floor. Had two bowel movements at home and pains eased a bit but not gone.
We have a telephone appointment with paediatric doctor at the hospital in two weeks. I’ve phoned the GP twice in the last couple of weeks, but they just say “watch his weight and wait for the consultant appointment”
I need to know what questions I should be asking? Are there other test I should be demanding? Feel like I’m letting him down and it’s ruining his life. I think he’s actually started to get depressed with it. I’m sick with worry.
Written by
Eevee19
To view profiles and participate in discussions please or .
Thanks - no we can’t pin point anything that may have set it off. Tried keeping a food diary, but nothing seems to correlate with worsening symptoms.
He’s been prescribed colofac and omeprezole but they don’t ease any of the symptoms.
His appetite is very small and I think he’s started to develop a bad relationship with food. He’s frightened of eating because it makes him sick.
No one has mentioned colonoscopy, but that’s what I was wondering about next. Should I be demanding one?I have no experience of IBS so don’t know if this is just what its like and he has to try and live with it, or if there is something else going on? Tbh it’s starting to scare me.
I would suggest you ask the consultant if a colonoscopy could be preformed as that is the ultimate test to actually see if anything is going on in his tum. I am sure the consultant will be aware of the dangers of your son's relationship with food. BTW I know what it's like to have a prob with food. When I was younger than your son I had a sickness bug, from that day onwards I was careful of what I ate and used to ask my mum after every meal, "Will what I ate make me sick". Her reassurance eased my fears. Mum told me this went on for many months and she was getting worried for my mental health, when I suddenly snapped out of it, this was in the 1960s. There was not the help then that you can get now.
Look at the Great Ormond Street hospital site re child Colonoscopies or call the IBS helpline.
Thanks Linley, I’m going to ask. I hope they do something for him. We can’t carry on like we are. Hes got football tomorrow, but can’t look forward to it because he panicking about feel ill and needing the toilet. Lots of pitches don’t have toilet facilities.
I can identify with this so much. My 12 year old son took ill suddenly with extreme stomach pain around this time last year. To cut a long story, short, they suspect inflammed lymph nodes (which kids get at times) in his belly triggered IBS C. Stomach pain was so bad every day that on a good day he made it a couple of hours before he needed to come home from school. Do ask for a colonoscopy as that sets everyone’s minds to rest that there is nothing that is being missed. At their age they get it under a general so not as bad as getting one as an adult (I have IBS too so have had one). After trying loads of medication and anything we thought might help like Peppermint, reflexology ( you get the hint, we tried everything) and being hospitalised two times for the constipation we put him on a Fodmap diet (as strict as a 12 year old could deal with) but didn’t see any great improvement. As this was at the five months stage we were distraught. Doctor then prescribed amythripline (haven’t spelt that right) which is a low dose antidepressant but don’t let that put you off as it’s used to treat this type of thing and at this dose not for depression or anything. We were nervous about it for that reason but had no need to be. Anyway, that was the turning point. After about two months on the medication and still on the restricted diet we saw great improvements. Pain greatly reduced, some food reintroduced but definitely wheat intolerant and still a few mystery foods that trigger him but He is getting on with life and copes really well with a few bad days here and there. So my message here is it will get better. It may not be the same thing as us that works because everyone is different but something will make it better. When the bowel gets itself irritated it does seem to take time to settle. Wishing you well with everything.
Thanks so much for the replies.....we haven’t had a lactose test or tried the Fodmap diet. These are all things I have read about, so I’ll ask at our appointment. I’m willing to try just about anything, at this point. Half an hour on the toilet this morning and sick under a tree at football. I could cry for him.
ZaraAnn, thank you for your post. I’m so glad to hear your Son is feeling a bit better. We are the same with missing school. The teachers have been very good. The year head allows him to go to her office every morning, so that he can lie down on a chair and give his stomach a chance to settle. Most days he makes it to class (via the loo), but we have had a few days where he’s had to come home. I hadn’t heard about antidepressants as a treatment for IBS so that definitely something I will be asking about.
Feel terrible for leaving him this long without pushing for more. I’ll report back when we have spoken to the consultant. Unfortunately we only have a telephone appointment due to Covid. I wish were we going In person so they could see him.
I was like that. I found I had a leaky gut. My bowel Movements are better since taking a good probiotic. I take fivelac. Always follow the instructions.
So we’ve seen the consultant in person and don’t really feel any further forward.
DS has lost 1kg since he was last weighed at hospital in November 2019 and is now underweight. Another blood test has been done and we will have to wait for results. This will be the third lot he’s had done in the last 18 months and nothing has ever shown up.
Been advised to start Bio-Kult in the meantime.
Has anyone lost weight or had a child that hasn’t gained weight with IBS?
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Recommend IBS treatment clinic for 14 year old?
Chronic rectal bleeding
Had symptoms for years.
Colarectal appointment !
POST INFECTIOUS IBS going on a year...
