to go to A&e with my dd3 *pictures*

[littlemaemae]

My DD who is 3 has been having stomach/bowel problems for the last year. Diagnose as constipation. She can not pass a stool for weeks despite fantastic diet and laxatives and weeks is in severe pain most days. She is very petite and skinny but her stomach has swollen to look 9 months pregnant. Getting no where with doctors/hospital etc.
Aibu to think this is not how a heathy child's stomach should look.

Oh I am shocked to see how the doctor first treated you today :( I am glad you will see someone in a few hours, do go to a&e if they fob you off though. Your poor little girl. Good luck, I really hope you get something out of this today.

I know you've not had good experience of the movicol before, but if that's what the nurses suggest please don't think they're just fobbing you off. Regardless of any underlying cause for the constipation, the first thing that has to be done is to clear what's there now. An X-ray will only show what you already know, that she's full of poo. People have suggested going to a and e and not leaving until she's scaned etc but at the min a scan won't help her. The poo has to come out and movicol is the most gentle way of doing it (less distressing for example than an enema). I hope the nurses are nice when they come out, they'll see this day to day and will be able to hopefully help with the immediate and ongoing management.

You're doing brilliantly OP.

Waiting for the continence nurse is extremely sensible at this point. Hopefully you'll get an action plan for today and depending on how you feel, sort an appointment privately later.

Let us know how it goes. Remember these are specialist nurses who usually know their stuff and can advocate for you if they think you need additional help.

a scan could show that/if anything else is going on, like an obstruction other than the impaction or physical abnormalities.

Honestly LittleMaeMae,I think you are doing really well !
I know myself how it can be when a GP is constantly putting you down & making you doubt yourself to the extent you feel you don't know even know what's right for your own child even though you are the one living with a child in discomfort every day.

As others have already said the continence team will have a lot more knowledge than the GP so should be a lot more helpful plus be able to speak up on your Dd's behalf if they agree with what the Out of hours doctor has said.

I'm keeping everything crossed for you.

IwillrunIwillfly and others - thanks for the tips! I had never thought of these other ways of getting movicol into my child... I will try the angel delight, jelly, ice cubes, lollies, fruit shoot... He eats a lot of vegetable soup, I could try it in that. I had tried hiding the powder into a spoon of apple sauce and getting him to gulp it down but it would be better if it was actually dissolved in the water. Thanks everyone

Good luck with the nurse littlemaemae. I like having everything written down too, it helps. I write a list clearly so the HCP can even read it upside down across the desk and that helps too.

We went for a walk around a park to try to get her stomach moving and clear our heads. Home now and the nurse should be here soon.
Thank you again for all the advice, I am overwhelmed with the support, I didn't think I would get one reply.

Rickety, that's a fantastic way to go about asking the right questions. That's how I will approach it.
Hoping dp gets home soon as he is not here yet.

Hope the nurses are useful. Make sure you tell them EVERYTHING.

Hope the nurse is of some use to you and that DD gets some relief soon.

Good luck with the continence team. Our DSD had trouble with constipation and it was horrible for her. Whatever it turns out to be, hope your little girl is soon feeling better.

Hope appointment goes well

How did the continence nurse visit go?

Hoping all went well

She has just left. It didn't go smoothly.

Dp was late so I was on my own and she was going on about movicol and not listening to anything I was saying. Saying she won't refer or have any tests done until we have tried this for a few months.
DD was screaming and crying and my older DD was climbing all over me.
I ended up getting very upset and crying my eyes out, we both argued she said she was leaving.
Then do got home and I went upstairs to calm down.
Came back down and she said she was new to the area, been in the job 2 months and had no back history for us.
So I felt very sorry for her as I assumed she would be up to date.
In the end she is going to be referred to a gastro specialist.
Tested for chrons, and other diseases, food intolerances looked at and anus checked out.
Along with a stimulant, pecto something that has been mentioned on this tread.

She is impacted up to her rib cage.

On disimpactment regime for the next week or so.

I am emotionally exhausted but feel we have finally got somewhere today.
I wouldn't have been able to do it without all this wonderful support.
I would have backed down.
Thank you all so so much. It's going to make a huge difference to our lives xx

Have been following this and am so pleased that you have got an action plan in place.

It is going to take a lot more of your emotional/physical resources to see this all the way through but I am positive you can do it! Baby steps and lots of rewards for the whole family along the way.

well done you. sounds really tough.
please do go to a&e in case your dd gets worse or there is no improvement soon.

You and your dd have been failed at every turn so far by the 'wonderful' NHS op

Oh well done, it would have been nigh on impossible not to get upset whilst you were recounting the events. Glad she stuck it out and you got somewhere. You did this, not us lot. Now deep breath, get those lot sorted and sit down with a pint glass of wine

I'm so pleased you have been listened to and have a road to travel to get her well. Have they explained that disimpaction is tough and can be painful for them? My nephew had to go through it when lactose intolerance was misdiagnosed for 6 years. It took 4 days to move the solid mass that was stuck, and he screamed all day as it shifted but once it was out and they got him dairy free, he had normal bowel movements

Good luck

So glad you got there in the end! Hopefully it's the start of improvements for dd.

I agree with Green, if you are worried DD is in a lot of pain, please take her to A&E.

My own DD didn't go for a 8 days and I was told by a pharmacist to take her A&E as toxins can build up, she was much older though. I don't understand how your DD isn't being treated as an emergency.

If she's impacted up to her rib cage I'd definitely go to a&e.

She must be feeling absolutely terrible. Any toxins from her poo is surely being absorbed back into her blood stream. She can't put up with another week of this.

As someone said earlier they keep changing the goalposts, try X then try Y, you aren't getting anywhere.

They all sound as useless as each other

I worry about how long it'll take to disimpact her with Movicol, considering the impaction is so incredibly severe. Not to mention how difficult it'll be to get her to drink such massive quantities.

Thing is, a continence nurse is only qualified to offer advice on oral meds, and so that's the best you can expect

FFS woman!!! Go to A&E and scream! You can't leave a child like that! You don't trust your own judgement, but you should. If not, trust the judgement of several strangers on the internet.

Tell them you're not leaving the hospital until DD gets an enema or whatever. She is in pain. Really, treating women as "emotional" or "crazy" is the oldest trick in the book to shut us up. Don't let them shut you up if your child is in pain.

And if anyone ever tries to fob you off again, say "convince me" and keep saying. "Why not this? Why not that?" Let THEM convince you. Stay put. Don't leave until you're satisfied with your care. Please.

You must be exhausted
I can't believe after all this time they STILL give you grief.
So basically what OOH doctor said last night is to be ignored whilst they put her (and you) through more pain?

I would start the complaints procedure ASAP so that everything is documented.
Impacted up to her ribs & left like that ?
It's beyond it really is