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

Your symptoms suggest anxiety could be relevant but your journey doesn't - not helpful at all, sorry

You say you did low fodmap but did you go fully gluten free? No gluten no oats, even gluten free ones?

The range of symptoms you describe were all ones DD DS and myself had. We’re one of the families that get missed on a standard coeliac screen as we are immune deficient so don’t show on standard screening

Also what gut reboot have you done? Often elimination isn’t enough and you need to do a reboot with high quality pre and probiotics

I would try cutting out wheat. You could also try using Einkorn wholemeal flour as it is not been hybridized and is easier to digest than modern wheat. I make my own pasta, crackers and oatcakes with it.

If she is coeliac then Einkorn isn't suitable.

Why did the gastroenterologist say no to the daily movicol?
My understanding is that if someone has a tendency to constipation it's important to help the faeces to stay soft to almost retrain the gut to go normally.
When ever I have heard about children with constipation it takes a while to get back into a normal pattern.
Obviously alongside daily Movicol you could look at coeliac etc.

I don't know why he said no, that's part of the reason we're off to get a second opinion.

Yes we've tried no gluten but to no avail.

She's not a particularly anxious child and enjoys school etc.

How much exercise does she get? What is she eating - veg?

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?

I always suffer with constipation and it makes me feel dreadful. I have vegetables for lunch and then evening meal is protein and veg and psyllium husks to keep things soft and moving.

Obviously there could be something else up with your DD but mine is linked to hormones and for some reason My bowels just don't function as they should.

My daughter was very similar and she's dairy intolerant. Has she been tested for intolerances?

I'd go with the GP and give the movicol..perhaps one sachet rather than two as that will keep things moving (My DS2 has been on it since he was two and we found we could drop to one sachet unless he gets backed up)
Other than coeliac, she should also be checked for Crohns and Ulcerative colitis. My ds2 was fobbed off for a LONG time.. he had urgency (and accidents) then sometimes constipation, sometimes blood (doc said 'piles..eat more fibre.. which made it 100x worse)
In the end I kept a bowel diary for 2 weeks, went back and saw a locum, who ordered a colonoscopy .. whereupon he was diagnosed with Ulcerative Colitis the same day, on meds by the next and his life has been much better since! He still needs to take regular movicol as he can risk obstruction.

Has she has an endoscopy? It sounds like a physical obstruction needs to be ruled out first?

I was about to ask the same. Has she has colonoscopy/endoscopy. They should be ruling EVERYTHING out before even suggesting IBS let alone putting a child on a strict elimination diet (which can have negative health impacts if done for too long). It's a diagnosis of exclusion but so many doctors seem to jump to IBS first!

They can biopsy her bowel while they are there.

I would Google tbh. Put together a list of all possible causes you can find. Check her medical records so far and see what has been tested for so far (and check they've done all the tests they should to before ruling something out - eg coeliac can be missed in a blood test but should be picked up in a biopsy).

Then insist on testing for anything missed. I would do this in writing.

Also if you are not happy with the gastro find another one. I think I'm on my 5th endocrinologist (this one is great!). The other ones weren't helping me so I moved on. Doctors all have differing opinions and perspectives so find someone else if this one has run out of steam/isn't providing answers.

Constipation wise - I had IBS C most of my my adult life (I did cure mine with low FODMAP) and have never found movicol that effective. It just gave me loads of wind and still left me constipated. I found either 1tbsp of linseeds (drink plenty of water!) or vitamin c tablets (1000mg) much more effective. Something to try maybe if you can't access the movicol.

Hope you find the answers you need quickly 🤞

What about chronic intestinal pseudo-obstruction? www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/chronic-intestinal-pseudo-obstruction-children/

Thank you everyone. Had a telephone appointment with her GP who said to do the 2 movicols a day, so we are.

We're seeing her gastroenterologist once more next week, but I've booked a second opinion consultation with another on 1st April. I'm going to go armed with the facts and a timeline and ask what he thinks and what he suggests.

They did a celiac blood test and it was normal. She is lactose intolerant. Dr said no need for colonoscopy etc because her blood test and stool samples were completely normal.

Random thought. Is she particularly bendy? Sometimes hypermobility brings gut issues. Read through some info. Stretchy guts don't push shit through well. Sometimes it causes things to move rather quickly.

Urgency with bladder is common. As is acid reflux.

Was the coeliac blood test done after a good 6 weeks of having gluten every day?

@BlackeyedSusan

Random thought. Is she particularly bendy? Sometimes hypermobility brings gut issues. Read through some info. Stretchy guts don't push shit through well. Sometimes it causes things to move rather quickly.

Urgency with bladder is common. As is acid reflux.

Was just coming on to say the same thing.

My DD (10) has similar. Except Movicol gives her uncontrollable diarrhoea.

She has hypermobile Ehlers-Danlos syndrome and as such, it causes stretchy bowels (and elswehere) It also causes slow gut motility. Worth looking up.

I went through years of my child having constipation. If You think it might be this, here's my wisdom (not a medical person at all).

When you did the disimpaction routine with the movicol did you get to a stage where she was passing liquid? Because if not, it could just be that the whole blockage wasn't passed.

Movicol works by drawing water into the stool. If you imagine the old poo as dried up, you can think of the movicol as bringing water into it to soften it and making it easy to pass. Does she ever have skidmarks in her pants? This is a sign that further disimpaction can be needed - the newer softer poo is sliding round the old harder poo and she can't feel it coming out.

We kept going with the movicol after disimpaction to keep things passing. One or two sachets per day.

Key things -

• keep up liquid intake
• keep her active
• establish a good routine for going to the toilet for a sit abiut thirty minutes after meals.
• look up the Poo Nurses on Google - they'll explain all about constipation and movicol. A really useful resource.

We had about five years of this. It turned out my child was quite sensitive to movicol and didn't need as much as was prescribed. I also didn't fully understand it so it was only once I had read up on it I felt I could put better plans in place

My child still has moments of being bunged up but we can usually remedy this quite quickly. The pants are a good warning sign. He never really had a sore tummy from it.

We now have a good regime of pro biotics too. Useful following the disimpaction.

Hope you feel like things are getting better soon, it's crap when your kid isn't well.

I had these issues in high school and University, but as nothing looked like it was wrong, nothing was done. Turns out it was Generalized Anxiety Disorder.

My anxieties didn't show in typical ways and I genuinely didn't feel "anxious". I would have genuinely argued that I wasn't suffering from anxiety. For me, it is a seratonin imbalance. Medication has worked wonders.

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.

Once the blockage has passed you can if you want stop the movicol and keep up daily smoothies (I used innocent, happy monkey) and bread sticks with houmus.

Although she is unlikely to get over the psychological aspect for a while to come.

I must admit after five years of this I told my child that as they were not pooping regularly they were causing their own tummy to hurt and mum couldn’t help any more.

This partly sunk in and whilst they don’t like pooping in public they are more regular now at home. I do still have movicol and use it occasionally

My DD had chronic constipation (albeit at a much much younger age so this may not be relevant). But we were advised to continue with movicol once the initial impaction was cleared. The reason we were given is that it causes the bowel to stretch out of shape which can mean the same thing happens again and again and so continuing with the movicol gives the bowel chance to fully recover which can take a long time. In my DD's case she was on movicol for approximately 3 years (and dulcolax too at one point when movicol alone was not working for her for some reason). We saw a fantastic NHS paediatric gastroenterologist and had regular follow up appointments. There wasn't much of a wait either (this is pre covid though, about 1 month). She still occasionally has to go back to movicol, but now we know to watch out for it we're able to pre-empt impaction so don't use for long periods.

I'm not saying that it is constipation at all as I have no idea, but just wanted to reassure you that if it is constipation, taking movicol continuously after impaction was the same advice we were given, alongside the usual dietary advice (in particular lots of water). You can adjust the dosage as needed to ensure you're getting it right. We were told she should have at least 1 soft poo per day, preferably two. Also, if movicol doesn't work, there are alternatives as well.

Sorry if this is useless, as I said, this was for a much younger child. It was worrying and difficult with a young child though, so I can only imagine how troubling this is to your DD and you.

Is there anything going on at home that's different from usual or out of the norm?