Help me diagnose my child.

[pupcakes]

Ok, so I know you're not all doctors, but I'm feeling pretty desperate for DD (11) who has basically been poorly for the last 18 months.

PLEASE HELP.

Symptoms: constipation, feeling pressure to go but nothing comes out, sometimes diarrhoea, nausea, stomach cramps, 'urgency'/no warning to poo, 3 minor poo accidents when the urgency has come out of nowhere, feels sick "in her throat", worse at bedtime and first thing in the morning.

Journey so far - we have been seeing a private gastroenterologist for past 5 months who made us do the low fodmap diet- we stuck to it 1000% and it made literally no difference. She had a 'shape test'/xray which showed that all the markers were still in her upper bowel where there was a clear backlog, so we did 7 days of movicol impaction regime and she did feel better for 2 weeks after. She's done it again over this past week after having an unexplained new pain in lower stomach last week, GP said could be constipation and advised us to do it. Blood tests and stool samples were fine.

Gastroenterologist (who is very nice, but very expensive) just wants to write it off as IBS, but I'm not convinced at all. He did say omeprazole might help with the throat-sickness, but then said he doesn't want to prescribe it to such a young girl Our GP has suggested Movicol daily, two sachets, but the gastroenterologist said it's not needed. I have arranged an appointment with a new one for a second opinion in a few weeks.

She has got progressively worse and worse and is in tears all the time about how unwell she feels. Her school attendance is 60%, she HATES missing school as she loves her new secondary and is so unhappy. They're giving me grief too despite medical evidence from the doc, they won't provide work for her to do so she's really fallen behind and it's impacting her confidence a lot (we've got her a tutor who is lovely but it's not having much impact).

Any suggestions?

Anything at all. I never google things generally as I know you just read the worst case scenarios but I just need help now. We all feel quite desperate, our whole life is centred around her belly at the moment. It feels like our happy little girl is fading away.

Thank you

Well, we've had some things happen over past few years which could suggest anxiety such as starting secondary, but she's not an overly anxious person and I really don't feel that's what it is. She has really been so upset at missing school and is desperate to go back. She has been off for almost 3 weeks- her longest and biggest ever bout of this (not sure what else to call it- flare up?) and it came out of nowhere, nothing remotely stressful happening. She's been so upset about it.

@wearyanddreary we were told a 6-12 month wait here! Hence went private!

@Quitelikeit

Stool withholding.

Don’t even tell her she is getting her movicol. Give the sachet or two each day. Mix it with diluting juice.

Give smoothies, houmus and fresh orange.

There’s a book you can buy for children that talks about pooping.

Don’t make a big deal out of it.

Oh, while I appreciate your kindness at taking the time to offer your help, this post made me really snort with laughter, providing some well timed light relief!! Thank you!

DD is nearly 12, and so smart. I'm guessing you missed her age? She's definitely not withholding, she spends so much time sat on the toilet we have to force her to come off it, she wants the movicol as she knows it helps, she doesn't need a book!

@pupcakes sorry, that wait time is awful, it seems we were very lucky with our quick wait.

Sounds like my dd. She has coeliacs and constipation because of it. Movicol and strict diet helps. I would get another coeliacs test.

@pupcakes

Well, we've had some things happen over past few years which could suggest anxiety such as starting secondary, but she's not an overly anxious person and I really don't feel that's what it is. She has really been so upset at missing school and is desperate to go back. She has been off for almost 3 weeks- her longest and biggest ever bout of this (not sure what else to call it- flare up?) and it came out of nowhere, nothing remotely stressful happening. She's been so upset about it.

@wearyanddreary we were told a 6-12 month wait here! Hence went private!

I hope you find out what it is, and soon. It may well be physiological, but it's also worth bearing in mind that we tend somatise anxiety (ie express it bodily) as a way of not experiencing it mentally or emotionally. I was similar. I was also a psychotherapist and saw this regularly.

Just one of many factors to take into account.

I would, alongside the medical, talk to a naturopath about it as well to get a holistic view on her health. I have used fruit or veg or juice regimes for improving health under their guidance and learnt a lot about guts for myself but I don't feel I can give advice.

Other than, we always use a poo stool as that's supposed to help generally. If you need a laugh then search "squatty potty commercial". Any stool/step high enough will do.

On the coeliac front, two family members have had blood test results say they aren’t coeliac but felt infinitely better after cutting it out for a few months. They don’t touch it now and live a happier life!

Interesting, following because we are struggling with this too although we are going the anxiety route. DS1 is 13 and has always had some issues with poo which I put down to potty training which was a bit disastrous then diet, which has always been poor. Doctor is dismissive of physical cause which is why we are on the mental health route. He does not appear anxious at all except for this one issue (he panics if he thinks he won't have access to a toilet and has also missed school because he felt unable to move from the toilet). For him it is especially linked to things like needing to be somewhere at a specific time and also being trapped (eg on a bus) without access to toilets. But if I look back he was quite an anxious toddler with separation anxiety, being reserved in new situations, taking a long time to learn skills that needed a degree of risk (walking, swimming, riding a bike).

Hypermobility could fit too although nothing serious enough to be diagnosed, but it runs in the family.

And he asks a million questions for any situation, which is I think another way that the anxiety shows up even though it isn't otherwise obvious.

@WannabeGilmoreGirl

I would've said coeliac too. It can take between 3 and 6 months to get gluten out of the system. Have the doctors done a coeliac blood test?

Actually it can take 5 years.

Movicol is a first step when child suffers from constipation. Starts from 2 sachets a day up to quite a few if faecal impaction happens.Please check the package for the correct dosage as 2 a day might not be enough.

What is she eating and drinking?Could you please make a food and poo diary? There might be some pattern emerging that you’re not aware of like some food intolerance.

I’d also think about consulting dietician but please make a diary first with ALL foods and drinks consumed and poo frequency/consistency.

Does she show any signs of hypermobility? EDS can be linked with poor gut motility.

I believe small bowel Crohn's doesn't always show on blood tests.
My 11 year old has it.

I know you’ve said she’s lactose intolerant but have you gone completely dairy free for at least 6 weeks?
DS has a CMP intolerance that causes constipation. He also took laxative similar to movicol for around 12 months just to keep everything moving

What does she actually eat? What's her daily diet?

I would be getting her referred to your local children’s hospital specialist then phoning the secretary weekly to get an appointment....this worked in our family....had an appointment within 2 months.....they work as part of an MDT ....far better than a lone private specialist

When you say you've tried gluten does that mean you've tried total exclusion from the diet for 6-8 weeks? Because I'm coeliac but it doesnt show up on a blood test w me.

If you have tried that and it wasnt I'd say chronic constipation.

My son and I are both diagnosed coeliac with negative antibody tests, we had genetic tests and endoscopy with biopsies taken.

He also has PoTs which can affect the stomach and my other daughter has a diagnosed connective tissue disorder like Elhers Danlos, this can also cause constipation and tummy pains.

I got diagnosed when he started to have problems, they took it a lot more seriously when I had a diagnosis. Is there anyone in the family with coeliac or autoimmune conditions?

I really really sympathise it's so tough when our kids are poorly and we can't work out what's wrong with them.

If you were local to me (Nottingham) I would recommend an excellent NHS paediatric gastroenterologist and also a private general paediatric consultant if you think it might be something else. I hope you get the answers you need soon

Thanks everyone. Yes @MissSmiley it's the absolute worst feeling, knowing she feels so rotten and not being able to help.

No sign of hyper mobility. Yes we fully cut out dairy when on low fodmap diet for 8 weeks. Could potentially be gluten? We did gluten free too on low fodmap though.

We've kept a poo diary for months now and no obvious triggers at all but we still keep it! All we seem to talk about is poo!

She has a good diet I think and has a chubby belly so not underweight. We eat a lot of Persian/Middle Eastern meals. Have to force in fruit but she eats a lot of veg and has a glass of fruit juice and a smoothie every day.

Hi I really feel for you daughter my own daughter had some of these symptoms like her we got referred to specialist she teted fo h.pylori in her stool was positive I know you said they checked your childs but mine child had to get it checked twice first they didn't find anything as stool was 48 hours old when tested but a note was put on iy to check again and it was positive for h.pylori infection. They but her two different antibiotics and proton pump inhibitor tablets in case of an ulcer that would help heal it she is much better now, she went through an awful time for two years I kept going back with her, the doctor weren't sure what it was she had a uti at one stage so she was treated for that but symptoms kept coming back she had nausea, pain above her belly button after eating but sometimes as just there, she was constipated struggled to go toilet also and very tired, I'm just glad they figured it out even though it took ages! it was actually after a blood test they found raised amylase thought it might be her pancreas so referred her to the hospital to get checked . Anyway it might be worth asking them to check for that if they haven't already, I hope you get an answer its an awful thing to see your child so sick

Thank you @laurac28, I will ask for another stool sample when we see the new Dr on April 1st, it can't hurt. Glad your daughter found a cause and a resolution.

No problem just thought it was worth mentioning I hope you get an an answer soon

Have you posted about your daughter before, relatively recently? If not then someone else has a child with similar difficulties so hopefully they may be able to share their experience and what has and hasn't been tried 🤞

@Nelliephant1

Have you posted about your daughter before, relatively recently? If not then someone else has a child with similar difficulties so hopefully they may be able to share their experience and what has and hasn't been tried 🤞

@Nelliephant1 No, I haven't, this is my first time- do you know the name of the other thread at all? Thanks

Hopeful bump for any other opinions please!