Poo is ruining our life

[BrainFullOfSpiders]

I have named changed for this but have been around for the past 3-4 years on and off.

I am completely at a loss and looking for ideas/support with my DD (2.5) and what seems to feel like never ending illness. I’ll give a full backstory to help.

at 8 weeks she was diagnosed with CMPA - main symptoms were constant poo leakage, colic, eczema and blisters on her anus. Being dairy free solved this.

failed the milk ladder then she started getting tired, sleeping 20 hours a day and advised to wait before trying again.

at 18 months she was iron deficiency aneamic. Had a course of iron.

age 2 Told we could start the milk ladder. Failed it (3 times).

had an episode of low blood sugar and unconscious- told it was a one off event. Hasn’t happened since.

additionally treated for constipation.

she is “malnourished and has faltering growth”

to now -
she is anaemic again and on treatment. First of all it seemed to be working, appetite increased, activity levels increased, however now it’s like she’s not even on it.

• her poos smell so unbelievably bad.
• they're mucous
• shes pooing every night in her sleep
• her poos are large in volume although soft due to laxatives
• she really struggles to push her poo out even though it’s soft (I can physically see it bobbing in and out, so know she’s pushing for a long time).

I'm left juggling the dosage of her laxatives. No support from GP, and I feel like I’m constantly having to increase them with no change. I just feel like something else is happening.

thank you if you’ve made it this far and have any ideas on what I can do.

Beware the coeliac blood test with classic symptoms. Sometimes only a biopsy will do

I'm really surprised symptoms of this longevity and severity have not prompted a referral to a paediatric gastroenterologist. A general paediatrician will not have nearly the level of expertise the paed gastroenterologists do.

Can you request a referral to the nearest hospital that has them? FYI the London teaching hospitals all (I think) have them, and I would assume the same of other teaching hospitals.

We are quite far away from London. I am definitely considering a referral for a second opinion so could ask the GP about a gastro referral if/when he contacts me. I’m hoping I won’t be waiting long.

I didn’t know this. Having a blood test would be a start!

It would be a big procedure for her being so young she’d need GA.

currently, I really just want someone to look at her and see what she’s like instead of leaving me to guess what’s going on all the time.

OP this sounds really hard. We had similar but not as bad as you :-( the unconscious and low blood sugar, that's her gut not being able to absorb anything as it's distressed/ rncountering allergens/ inflamed. (Ours was due to soya)
I have no experience of coeliac but other posters feel it's likely. In addition google other allergens that are common with milk allergy - from memory, soya, beef, tomato. Try cut those out.
Give a oronuotic to try and help re build her gut.
Insist on a referral to dietetics xx

I did “joke” 18 months ago that I thought it was IBD and her consultant laughed it off with me. That was when we had her first lot of iron and I thought that was the end of it, not the beginning!

My first thought was Crohn's/ulcerative colitis. My youngest was diagnosed at 10yo and seemed so young. But once we became part of that 'community', it was clear that some children had been diagnosed as babies.

The GP are seeing her this afternoon. I’m not sure how far we will get but am glad she is being seen.

I can't comment because I have very little experience with this but I just wanted to say I'm sorry you're dealing with this. My dd had CMPA and did watery, mususy, explosive poops every 20 minutes (yup, we went through a lot of nappies) for the first few months of her life. She leaked all the time, it was often so forceful that it shot up her back and into her hair. I was always on edge and couldn't go anywhere ever. I became an expert at roadside changes. I once went to IKEA with my parents just for an hour or two and she explosively pooped through all 3 of the outfit changes I brought for her and we had to walk around with her wrapped in my dads jumper. This only changed when we started weaning (early because I couldn't take it anymore), and I deliberately gave her foods that in other kids would cause constipation but for my dd brought the number of poops she did a day down to a manageable 5 or 6.

I can't imagine dealing with this for years. I hope it is resolved for you.

I'be nothing to add other than I don't think ERIC/movicol mummies is really the right approach for you. I hope you can get a referral to another specialist.

Presumably the next step would be a big hospital with more specialist paediatricians.. good luck op xx

Thank you. The GP said not to start again with another referral somewhere else, also don’t think that they were referring me to the continence clinic for help either. He did think she was still constipated so we’re currently attempting to disimpact again.

I haven’t heard back from her hospital where I asked for a celiac blood test to be done either.

Her iron is due to stop at the end of the month so we will see how she goes there too. So back to where we started really - no where.

I do have lots of questions to ask her paediatrician when we do eventually go back, so thank you everyone.

Did they have constipation before they started on the iron supplements as constipation is one of the common side effects of iron supplements

Did you ask GP to do a stool test? They should

Yea she’s had constipation for about a 12 months now. We increased her laxatives when she started the iron but not enough from the looks of it

I have phoned to ask her paediatrician if we could do one. I haven’t heard anything still. I was going to wait until the end of the month before I pester as her appointment for bloods is middle of May.

Another one saying I think you really need a paediatric gastroenterologist.

Update for anyone following: she is having a coeliac blood test with her follow up iron test.

she has however got more and more unwell. She’s just existing and it’s so hard and stressful to watch. I’ve taken her back and forth to the GP and walk in centres but not gotten anywhere

Hope you get some answers soon x

Sorry you are going through this, OP. I echo other posters to say I think you need to really push for a paediatric gastro referral. All areas of the country will have them, and the smaller hospitals should refer to the bigger nearest (children's?) hospital. This is how it works in Scotland anyway.

In the meantime you should also push your GP for a calprotectin test. It's just a stool test you do at home then the GP sends off.

Good luck; it is very worrying. I hope you get some answers soon.

I don't think you've said anywhere whether she has had a faecal calprotectin test. Insist on one! To me everything points to IBD (and I say that not as a medic but as a parent of a child with IBD). If the calprotectin is normal, it's probably not IBD. If it's raised, they will do a colonoscopy and have look/take biopsies for diagnosis etc. At least then you'll know. Really push for it OP.

Has coeliac disease been explored?

Go to a pediatrician.

Don't waste precious time with GPs.

Pick up the phone and call, make an appointment.

I'm sorry you're having such an awful time with this, it must be so tough not bring able to fix it all for her.
Have you tried cutting out soya and egg at the same time as milk? Lots of children with cmpa also have soya and or egg allergies. I can't find the links now but I read up on this pretty comprehensively in 2022. No idea if this is what your DD has but might be worth a try while you wait for referrals to come through.

Hi OP. I was reading your thread a few days ago and this could have been my daughter writing it ! She was due to take GD back to GP yesterday and I urged her to ask about Coeliac Disease.
Anyway long story short , blood test flagged CD up back in January but daughter not informed 😞Furious but also an explanation so definitely be persistent with getting another test done !
Sorry I have just seen your update . Hopefully your child will be sorted out soon. It’s so draining and difficult to plan anything.X

sorry for not replying sooner. We went away for the weekend which I thought would be a good way to see what she is like outside the home environment.
it was awful. She took herself to bed at 10am. She’s crying because everything hurts it’s so sad. Her stomach is huge too. Her t shirts are so tight.
Her bloods are this week, not sure when we will be informed of the results. Making sure she currently eats lots of gluten.
latest from the GP was to reduce her laxatives and hope she perks up soon!

She did a stool sample at the very start 18 months ago. I’m not sure what for but was told it was ok. I did ask for a repeat at the same time as the blood test but they didn’t agree to it. My reasoning was the smell of her poo is terrible so I wanted to check for the presence of blood