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.

If only it was this simple. I can’t afford to go private (I’ve looked in to it).

No we haven’t cut anything else out her diet.
She Was diagnosed CMPA by about 4 weeks as she was constantly leaking poo and then the dairy resolved this so didn’t need to look much further.
I can definitely look in to it and ask her dietician too. She doesn’t eat a lot of egg anyway (not through lack of trying) and we do not use soya alternatives so for both she’d be down the bottom of the ladders.

Your poor dd 😟 I have everything crossed you get some answers in the blood test, you must feel very helpless 💐

This might sound silly but does your husband come to doctors/hospital appointments. It shouldn't be so but often it makes all the difference to getting heard and referred on instead of being fobbed off.

Could be celiac that didn’t show up on the blood test (seronegative celiac disease). This would explain her body not being able to absorb nutrients etc properly. You need to keep a food diary and eliminate foods from her diet. I would start with gluten. If things don’t improve then you could try eliminating lactose etc. Sounds like she has definitely got an intolerance to something. You just need to figure out what it is.

Your child isn't thriving. She has digestive problems that have gone untreated for too long.

You and your H and all of your families need to figure out a way to get her to a doctor who can figure out what's going on.

I had a health concern (not the same as yours) about my DC(2) my GP referred me to the specialist but it was too long a wait.
GP advised me to go to my nearest A&E (hospital contained the department my DC needed) and just sit there until we are seen.

My child's health concern was no way near the level your child is suffering.

If she is failing to thrive and presumably in a lot of discomfort/pain I would be in the car going to A&E right now.
Take your husband too (sadly I agree Mums/women aren't taken seriously by medics).

You also need to be making detailed notes about your child's diet and bowel movements (inc photos/videos) to show the Doctors. The NHS does (mostly) work but sadly you (these days) need to bang down the door to get treatment.

Get to A&E, don't be afraid to exaggerate (eg say your child is in pain even if they aren't) I would never advise this but it sounds like your child is heading to malnutrition

I hope you get answers soon. It's awful how slow this is going for such a little one.

@BrainFullOfSpiders Push for a calprotectin test [ stool sample which looks for inflammation ]. This is determine if and how high inflammation is, which is an indicator for IBD [ crohns or colitis. If this is positive you will need a colonoscopy.

My son has crohns, and his initial symptoms were chronic constipation and he was on very high doses of movical. He also had extreme smelly poo, mucus in his stools and very smelly breath! It took me over two years to get his diagnosis as we kept getting fobbed off by GP's.

He was 8 when finally diagnosed.

Yes to this.

There will be lifelong consequences to failure to thrive.

Update: coeliacs test is negative. DD is still anaemic so continuing her medication. I also have a date to see her consultant (although a wait). They have the GP to do basic swaps etc to rule out infection/virus in the meantime. I will be looking back through posts on what to ask about. I will not be leaving without a plan. My DM has said she will come and looks after DD when I work. DH is not great in hospitals!

I would never exaggerate her symptoms either. I just don’t feel comfortable doing that. I am fortunate a nurse in the doctors (just collecting her iron) saw her when we really were not having a good day (when do we). I asked her to let the doctors know what she is like, and that she has witnessed it, as I’ve been telling them for so long and getting no where.

we did look at going private but it does appear like everyone else is too. They have a 6 month waiting list within a reasonable traveling distance. If we don’t get anywhere with our local hospital I will consider it further but it unfortunately doesn’t seem to make things happen any faster anymore.

No wonder the hospitals are so busy in an and e if it’s the only way people feel they are heard!

I'm so sorry to hear you're still struggling on not getting anywhere.

I don't kown if anyone has suggested this already but have you considered whether her symptoms fit with EGID?

https://www.chp.edu/our-services/gastroenterology/eosinophilic-gi-diseases

@BrainFullOfSpiders Apologies if you had answered this elsewhere, but have you done a faecal calprotectin test? If you haven't, demand one! It's so easy to do and hospitals process them all the time - it's not a big ask of them and it's a quick way to rule IBD out (or keep it in, which wouldn't be great news but would potentially give you some answers...).

Hi OP am sorry that you are still non the wiser with your 2year old . I started reading your thread when you first posted. You could have been describing my granddaughter who is 4. I called my daughter who was taking GDback to GP again and mentioned Coeliac because so many posters suggested it.
Daughter asked GP about testing for Coeliac.
Long story short,blood tests taken in January were never reported on by GP or Paediatrician. She has Coeliacs,a very positive result ,10x over the threshold!! . My daughter didn’t know it was one of the tests that were done!
Now I have read so much about Coeliac Disease and many people inc children get false negative and it is confirmed on endoscopy.
Just thought I would share this information incase you were unaware.X
Forgot to mention,she is also severely anaemic! Fair to say we will be complaining about the poor communication,but we are still just getting our heads round the diagnosis and educating ourselves.

Sounds like coeliac.

Oops sorry didn't see update!

I am so sorry your granddaughter has been experiencing this too. It’s so hard to see them this way.

I hope you get some support now and start seeing some improvements. I’m pleased this thread was able to help get you what you needed. It’s a shame it’s not routinely tested for especially as they are testing for anaemia anyway.

Thank you.

So far I have got to ask about the following:

• stool sample
• biopsy (I really want to avoid this, but also know she may need it)
• crohns/bowel disease
• @Grendacious one of the EGID sounds just like her and could be seen on a biopsy so worth asking about.
• I want to ask what the plan is as I can’t leave her like this any longer.
• follow up - what to look for, where to go.
• take DM/DH with me
• I was going to try do a diary closer to the time - symptoms, food and fluid intake, bowel movements, activities incase there was a link anywhere
• allergies

I am fully prepared to look a little crazy!

Sounds like an excellent list. Print it out and bring it a pen to take notes. You mean business!

The diary is an excellent idea and any gastro who doesn't want one is a silly one. We're seeing a new gastro later this month and I am already writing up a history and a diary. We're finally investigating eosophils.

Your list sounds excellent,I would also include general mood/ wellbeing/ anxiety/ grumpy etc in the diary because now ,benefit of hindsight we can see a relationship between food/ bowel movements/constipation etc with general temperament.
Definitely take another person to appointments. 2 pair of ears are really helpful.X

It sounds like you are going into this really well prepared. I support my grandmother with several conditions and end up in lots of consultant appointments. I always ask if I can record the appointment so I can listen back later and check we’ve both understood. Have never had a doctor say no to this. It might be an idea to do so, then you’ll have a record of what they say that you can listen back to / check without having to try and remember it or write it down in the appointment.

@BrainFullOfSpiders When you ask about a stool sample make sure it includes a calprotectin test as well. This looks into the inflammation in the sample. If they don't do this test, the sample itself won't show if there is any inflammation.
To diagnose crohns or colitis you need a colonoscopy. If they do one, this is when they also take biopsies.

The worst thing with this is the pre prep, really difficult for a young child. Children are always given a GA. It is usually worse for the parents than the child.

Good luck, I really hope you get answers soon.