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.

[consideringachange]

I have no idea but bumping for you. I have a 2 year old myself and this sounds terrible. Could it be coeliac disease?

[porridgecake]

Can you ring the ERIC help line? They might be able to offer advice and support. I am so sorry, it sounds very distressing.

[midlifepisces]

You need a referral to a specialist straight away, don't leave the gp until you've got one or go privately if you can afford it

[ThursdayTomorrow]

It REALLY sounds like Coeliac disease OP.

[cadburyegg]

@consideringachange

I have no idea but bumping for you. I have a 2 year old myself and this sounds terrible. Could it be coeliac disease?

I was just about to say get her tested for coeliac

[ThursdayTomorrow]

https://www.coeliac.org.uk/information-and-support/coeliac-disease/about-coeliac-disease/coeliac-disease-in-children/

[ScoobyBooby]

Was also going to suggest coeliac disease or another allergy ? X

[consideringachange]

It would explain the anaemia as well as all the bowel probs, v smelly poo and growth delay I think. Can cause behavioural probs too if severe, one of my nephews has a bad case and was in a real state when diagnosed. But whatever it is she needs an urgent referral OP, poor little thing.

[BrainFullOfSpiders]

ERIC have been amazing and who have supported me this far. We went through disimpaction and I’ve been to their seminars.

I can’t take her anywhere. we’re either pooing ourselves or sat on the loo for an hour. Our day is literally ruled by toilets and nursery have commented on the smell too. We follow ERICs guidance on not making it stressful for her so she’s none the wiser on how frustrating it is and although sad if she’s gone in her pants she now will say “never mind, get some more”, etc.

However, all I get now is “she sounds constipated still, increase her laxatives”.

we are under the paediatrician, who has said to see how she is after this course of iron. Her next appointment will mean it’s been 18 months of this so far.

We’ve had stool sample and bloods at our first appointment, including for coeliac. This was where she was found to be anaemic the first time.

[BrainFullOfSpiders]

Her behaviour is awful (and she’s really not like this) when she isn’t on the iron. Although this past week she’s like it again, despite the iron.

[MotherJessAndKittens]

There's a Facebook group called Movicol Mummies that may help you. Many of them have similar issues. Try and join it for help. Lots of the mum's have input from ERIC. Sorry I don't have the experience of this myself.

[BrainFullOfSpiders]

@MotherJessAndKittens

There's a Facebook group called Movicol Mummies that may help you. Many of them have similar issues. Try and join it for help. Lots of the mum's have input from ERIC. Sorry I don't have the experience of this myself.

Thank you, I will join.

[LimeFish]

As the coeliac test was done at a young age it's more likely to be a false negative result. (also can be a negative if not eating enough gluten). It does sound like a classic coeliac case, except for CMPA which would be separate issue but of course as you've cut out dairy that should not be causing any issues. Phone the coeliac UK helpline, preferably with the results of exactly what tests they did and the results to hand - you can get these from the GP receptionist - and they will advise you.

[KeeeeeepDancing]

Oh yes get on Movicol mummies, it's a great group. Is she is on Movicol? Don't be fobbed off with a different brand, we found the generic one wasn't as good.
I'm no doctor but it does sound like coeliac or something like that. Have you tried her on nutramigen?

[BrainFullOfSpiders]

@LimeFish

As the coeliac test was done at a young age it's more likely to be a false negative result. (also can be a negative if not eating enough gluten). It does sound like a classic coeliac case, except for CMPA which would be separate issue but of course as you've cut out dairy that should not be causing any issues. Phone the coeliac UK helpline, preferably with the results of exactly what tests they did and the results to hand - you can get these from the GP receptionist - and they will advise you.

Thank you.

we actually have a dietician appointment coming up (haven’t had one for 18 months) so I am going to ask them about it and testing again. They should have the test results as they’re all done at the hospital

[BrainFullOfSpiders]

@KeeeeeepDancing

Oh yes get on Movicol mummies, it's a great group. Is she is on Movicol? Don't be fobbed off with a different brand, we found the generic one wasn't as good.
I'm no doctor but it does sound like coeliac or something like that. Have you tried her on nutramigen?

Cosmocol and Sodium Picosulphate as there’s a shortage of senna.

the coeliac symptoms from that list is honestly the list of “ongoing problems” we had from the hospital in their letter. I will definitely be asking about it more, or requesting a second opinion.

She was breastfed. Then completely rejected formula (can’t remember which one she was prescribed) so straight on oat milk.

she also has a multivitamin with iron and a iron supplement on top of her medication! Hospital advised this.

[Remmy123]

Have they asked for a stool sample? It sounds like chrones. Anemia / low iron etc

doctors often think she is too young to have this but she isn't - please insist her calprotectin is tested

[Superscientist]

To me it sounds like there is still stuff in her diet that is upsetting her digestion whether that is coeliac or further allergies.

If you aren't using it already look at the north west milk ladder it starts with grain of rice sizes portions. We went even slower as it's starts every day and we started with once a week. We did it once at 15 months and a second time at 3y3m. At 15 months she failed on day 1 and 3y3m she failed when we reach a crumb every other day. Knowing we are making some progress even though it is super slow was reassuring. With quicker ladder we would still be having day 1 fails and feeling more demoralised

My daughter has 20 delayed allergies and it was only when all were removed from her diet that her stools improved. She has toddler diarrhoea too but this is better than it was. Constipation can be an allergy symptom too. Any thing can be an allergen my daughters oddist is onion!

[Hoplittlebunnyhophophopandstop]

I would ring the children’s doctor sectary and tell them you’re very worried that your child has faltering growth and list of symptoms and would like a sooner appointment. Tell them you want her to be tested for coeliac disease and IBD. Tell them you’re not happy to take a watch and wait approach.

[Waggily]

We're going through very similar symptoms with my 8 year old but he is gaining g weight quite happily. Could it still be celiac despite this? Have been to the Dr's today and they are going to do a stool sample and blood tests as we've previously been fobbed off
With "it's normal".

[ATerrorofLeftovers]

I’m also reading and thinking coeliac, and possibly also other intolerances.

I’m surprised you haven’t mentioned a paediatric gastroenterologist. Has she seen one or have you only been referred to a general paediatrician?

[ScoobyBooby]

My son has allergies including milk , why I was thinking something good related causing her bowel issues. Thankfully you have the dietitian appointment due , I hope they will be able to help further.

Can I just ask why the coeliacs test could be a false negative due to age ? My son had the test at 11 months (he’s 22 months now) , came back negative , no further investigations , diagnosed with a wheat allergy . Sorry to jump on your post xx

[BrainFullOfSpiders]

Thank you everyone.

The dietician said it wasn’t her diet causing her symptoms and to go back to her paediatrician.

I did ask about coeliac and she said she feels she would have been consuming enough wheat in her diet for it to not be a false negative. However, as she’s booked in for further iron bloods it wouldn’t hurt to do it again.

i have phoned her consultant and asked for this to be done and if it would be worth doing a stool sample (I haven’t had a response).

coincidentally the health visitor phoned so I discussed my worries with her and how the GP won’t see her. She is not happy and said she will phone our GP to review ASAP. She recommended an allergy referral as well and to not give in until they tell me the cause/plan.

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!

so now I wait again for the hospital and GP to get in contact.

[BrainFullOfSpiders]

@ATerrorofLeftovers

I’m also reading and thinking coeliac, and possibly also other intolerances.

I’m surprised you haven’t mentioned a paediatric gastroenterologist. Has she seen one or have you only been referred to a general paediatrician?

I think it’s a general paediatrician. Our hospital is quite small with an even smaller children’s department

[BrainFullOfSpiders]

@ScoobyBooby

My son has allergies including milk , why I was thinking something good related causing her bowel issues. Thankfully you have the dietitian appointment due , I hope they will be able to help further.

Can I just ask why the coeliacs test could be a false negative due to age ? My son had the test at 11 months (he’s 22 months now) , came back negative , no further investigations , diagnosed with a wheat allergy . Sorry to jump on your post xx

Edited

I think it all depends on how much wheat they are consuming in their diet. They have to be eating it for the blood test to show if there’s any reaction