6 year old - long running tummy pain and school distress

[Corilee2806]

I’ve already posted elsewhere about my younger child who’s awaiting an ASD assessment, but now things are escalating with my 6 yr old DD too, and I could use some shared wisdom from parents who’ve been through similar.

She is bright, kind, and academically flying — but over the past year, she’s developed regular tummy aches that are now constant. We’ve been back and forth to the GP since Reception, and last week it got even worse and she was diagnosed with a UTI and constipation. She’s on Movicol and has just finished antibiotics, but the pain is still there.

She’s visibly distressed, crying at drop off and resisting going in most days, rocking at night, crawling on the floor, saying things like “my tummy will never feel better.” We went to A&E last night but no tests were done and we’re back to square one.

I’ve started wondering if this is anxiety or even early emotionally-based school avoidance (EBSA). She’s also highly sensitive, reacts very strongly to noise, smells, and social tension, avoids children’s films and flushing toilets, and has real trouble sitting still. Some signs of possible neurodivergence are creeping in now that we didn’t see before.

The school are ok, but not exactly on the front foot. We have a paediatric referral pending but no date.

Has anyone been through this? Could it still be something medical? Or does this sound like a neurodivergent child in distress? How did you get support for school anxiety that doesn’t look like outright refusal (yet)?

Feeling broken and desperate to help her, but I don’t know where to turn next.

I will add dairy to the list of things to consider. At this point I think it’s more likely to be anxiety as it seems strongly linked to time of day and school (although it does happen out of school too) and most severely at bedtimes. She first started complaining of tummy aches in reception, she’s in year 1 now and it’s got progressively worse this year. Have been in several times to see teacher to discuss some behavioural issues and strategies to help her get into the classroom.

these replies have been so helpful - thanks everyone.

Look into eosinophilic gastritis.

I hope you get answers OP, all the best to your daughter

Thanks all. Ongoing pain, last night we had to go back to urgent care. Still signs of a UTI but the doctor said attention seeking and to try ‘ignoring her when she acts like she’s in pain for a few days’ I despair.

My son was the same, he was off-rolled from his school and hasn’t had a pain since. He’s pda and now we are forced home ed. He’s thriving so much I’m feeling less ‘forced’ and more like this is the best (only?) choice given the negative effects on SEN children and lack of actual education elsewhere.

I don’t know where to go for help. It’s clearly anxiety and getting worse at bedtime. Even though it’s half term the tummy aches are still there - she doesn’t seem too bad in the day although is increasingly displaying signs of shutdown, saying she’s cold, not wanting to move and being very quiet. But she’s starting to say scary things like she doesn’t want to be alive anymore and her tummy aches will never get better and it’s all her fault because of her worries. I’m heartbroken

I would cut out all dairy and soya for a few weeks. Don't tell her if you can avoid it. See if it helps. I think you need to assume it's physical before anxiety and excluding dairy and soya is pretty easy to do without too much stress. If you need help for meal ideas then ask here.

Probiotics might help get kids sachets or powder
Get a book like what to do when you worry too much
amzn.eu/d/iwgT4um

If the tummy aches are still there when she is not going to school I would seriously consider an intolerance.

dairy tolerance wears off through your life - only a few babies are lactose intolerant but many adults are and nearly all elderly people have lost it.

there’s a lot of other intolerances as well and a nasty tummy bug can often wipe out a lot of the good bacteria in your gut that do a lot of the processing.

i developed temporary soy and oat intolerance after antibiotics for a chest infection.

anxiety is probably an issue - but don’t rule out physical causes yet.

in particular if she’s been regularly eating dairy/tomatoes/soy whatever it is then it can take weeks for the gut to settle down and heal.

have a look at the most common allergens and see if you can try and cut some of them out.

Oh OP I really feel for you. In all honesty it sounds like she is a ND little girl. My two are. My 6 year old has stomach pains frequently at bedtime - it is school anxiety. School is so hard for her. She’s a different child out of school.

There is no quick / easy fix short of removing her from school. But I would say positive steps to take would be:

• read up on asd / adhd in girls (also if your son is having meltdowns he may be ND)
• work with her to identify what is stressing her out eg go through the timetable and get her to point out things that are difficult eg noise of lunch hall, spelling tests etc
• talk to school and hopefully they will help relieve areas of stress

My life with my own 6 year old and school is an ongoing nightmare because her school is utterly shit. But I hope you have better luck.

play therapy also a good idea and I’m sure you already are but just show her lots of love and talk about worries and how you manage your worries

She has a highly restrictive diet so doing this is really tough but prepared to give it a go - we’ve already been doing dairy but soya will be more challenging. I’ll try anything at this point. The food issues do also point towards ND with sensory challenges - this is her biggest one but there are others too.

I will get into the GP again tomorrow but not hopeful at this point.

And - can anyone tell me the main symptoms of dairy or soya intolerance? She has very little of either in her diet.

The most common symptoms of food intolerance s are bowel disruption.

so this could be - diarrhoea or constipation or switching between the two. Also cramps of the bowel which are quite painful.

https://www.nhs.uk/conditions/food-intolerance/

We’re at the end of two weeks of cutting out dairy and soya and no change. As she only has about 15 safe foods and no real signs of food intolerance I think we can pretty safely rule that out.

I could feel her ribs last night and have done some checks and realises she’s only gained around a kg in a year and possibly lost weight recently. She’s 16.5kg at age 6.5. I think we are almost moving into ARFID territory. I had a call from the paediatrician late last night to say they can’t bring her appointment forward as urgent so she’s being seen in a month but I’m so worried. Pretty sure it’s all school and anxiety based and related to neurodivergence. realise there’s no quick fix but just so desperate to help her.

If you are signed off work, are you able to keep her home with you for a few weeks to see if that settles her down. It would be a big clue to ruling in or out anxiety as a cause. Maybe tell her that the two of you are going to do school at home and ask school to send home some resources / homework packets.

Have been keeping her home when things have been particularly bad and I’m glad I’m taking some time off work at the moment so I can try and properly tune into what’s going on. Got into tricky territory with school and attendance so had to get her back although I’m not sure it’s helping her. Glad it’s summer soon as think that will make a difference

I had really bad anxiety few years ago, it came in some different physical forms but one of them was major tummy pains, I didn't know it at the time but after lots of testing for IBS and everything else, it was put down to anxiety, which made sense because eventually it did go, but moved onto another symptom. Id definitely think anxiety for your daughter based on the rest of your post. Is it constant or does it flare up at certain times? If so might be worth making a diary if you haven't already. Bless her, it was super painful for me I remember having to stay off work for a while because of it x

Pretty constant, but it mainly flares up in the evening and at bedtime. Otherwise at key transition points in the day especially at school. So more tied to this than anything she’s eaten or a physical thing. She’s also very hard on herself and speaks really negatively about herself. I hope you’re ok now x

My daughter has Crohn's, have they done tests for IBD? Does she have any diarrhea or anything? DD also restricted her food more and more pre-diagnosis. She had no appetite and by the time if diagnosis was more or less eating wotsits, chicken nuggets and mashed potato with gravy. Now she's on treatment (and older) she is a great cook who loves spicy food. She was subconsciously restricting down to very bland foods to try to control the pain.

Clues- tired, lost her sparkle. Fast heart rate. "Ran hot" - her temp was usually around 37 which I thought was just her until after she was treated and now it's 36 like everyone else. Diarrhea a lot, but she didn't tell me. She used to have to go to the toilet in the middle of meals or straight after. Cried at night a lot, in our case it was leg pain. Doctor told me this is common in IBD.

She does sound ND but most "tummy aches" for anxiety are not so severe that a child ends up in A and E twice, and you'd expect some respite over half term.

Can you ask if they have ruled out inflammatory bowel disease? They can do a test on poo called fecal calprotectin which is usually very informative.

Hello, can I suggest you start treating this as autism related? Are the school already doing anything reduce her anxiety levels? I would suggest:
visual tinetable at the start of each day, going over any changes/unusual activities
soft landing going into school - can she start in breakfast club or “helping” a TA so she doesnt have to go straight into class?
Sitting out of things she finds particularly stressful

They shouldnt just pressurise you to send her to school when she is clearly in pain and distressed. They need to make school more manageable

Yes we are working on the assumption she is autistic now. Hoping to get an assessment booked in soon - going to try the private route. We’ve been on the pathway with her younger brother for some time and this has crept up quite suddenly - classic female presentation, didn’t see the signs. Working with the school which has taken a while and had to escalate to the head to get them to listen, a pastoral support plan is being put in place but it’s not enough, too slow at the moment. Trying to work with the school but it’s not easy.

agree the tummy aches did seem too extreme to be explained by anxiety alone but maybe it is. Yes, we did the fecal calprotectin test but think it was clear but good suggestion, will double check. The extreme presentation (I know now it could have been shut down or burnout related) is worrying me as is the weight loss. Just worried.