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.

Agree can you (or DH) ring the continence team and tell them a doctor recommended an X-ray and see what they suggest

LittleMaeMae you are handling this brilliantly.
This is NOT you fault. No one for a minute thinks you are being anything other than black humoured about your carpets too btw.
The continence team will have more direct links to the relevant teams in the hospital too so this is a positive.
Try and just rest a bit with her and snuggle. Does a hot water bottle help her cramps at all?
to you

There is nothing wrong with the OP waiting to see the continence team first.

No need to pressure her into another decision. She can speak to them and go from there, that is a more than acceptable plan of action.

Xena this mother has been put through hell by an inflexible system and a crap GP. And she's sick with worry. She's feeling beaten down and ignored and she's struggling with PND. She is fighting as best she can and failing to see how well she has done already.

The self worth thing I mean that when I get knocked back I end up feeling I'm being unreasonable and neurotic. And don't know how to push more when I get a point blank no. Maybe confidence in what I know and what I am saying would have been a better way to put it. Or assertiveness skills.
I have done a lot of pushing constant appointments going back every week for such a long time.
If I was just starting out I think I would no be so ground down by it and would feel stronger.
I do fight for my children, I really do.
I did not mean it to come across that I couldn't be bothered because I'm a bit nervous.
It just seems logical to me to let this lady visit at 4 and go from there. I'm hoping she will have a lot of experience and will know where to go from here.

You have to do what is best for all of you. Wait for the nurse and take it from there.

Oh I'm glad the continence nurse is visiting they are usually very bossy :o GP won't stand a chance

I don't blame anyone for looking at it as 'just go to a&e and wait it out'
This is the advice I would give if the problem was put to me simply without the complex history.
So I am not taking offence

It is very very clear how much you have bothered and how much you have done. It is very hard and you are doing well. Honestly.

when you do go back to a&e and the continence team arrive make sure you tell them everything

the event teg asthma everything. as if it's allergies etc that's all part of the big picture. I think so far they are all just looking at the end result of the Constipation. everything from.her screaming as a baby to reaching milestones early or late etc could be part of the jigsaw.

although eh main.ficus right now is getting your dd feeling comfortable which means dealing with getting her cleared out, the other factors that could be vital. on getting a proper diagnosis.

takes one half decent dr to put them together rather than having them.listed as separate issues.

Has no one suggested sodium pico sulphate.
My DS suffers terribly. Before we had a gastrostomy we used this. It's an oral medication. DS has ASD and couldn't drink movicol!

I think you are doing the right thing waiting for the incontinence team. Ask her about pads too.... Will help when the clear out is going on!!!

If you do what giles said take the time now until the continence nurse comes to write everything down.

Your failure of care, her pneumonia, milestones and everything.

So when the doctor says how long has this been going on, or when did she do this you have it to hand

pico should only be used after prep otherwise the fast exit could damage the gut.
so please no experiments without consultation first.

Hello Littlemaemae. Our DD1 has had chronic constipation for years. It's been a long hard slog and we've not had to deal with a useless GP. I'm so sorry you are both going through this.

You are doing a brilliant job, this is not your fault. You all need proper support. I second going private if you can.

We used pull-ups for DD when on disimpaction regimes. It's a messy business and really helped us as we could get out and about and DD wasn't distressed by the mess.

Totally agree with Giles - they are making the illness fit the conclusion of constipation.
I will ask for them to look at it form a different angle and I am working on my list now.
I have a huge bag of pull ups stored. I will tell her they are tummy ache pants. She is upset at the thought of going back into them but it's best for her for the time being.
Dp is coming home for her appointment so he will be able to support me.
His work is very flexible allowing him however much time he needs to support us with this. That is one less stress on the family.

So sorry you are having such a tough time. If the continence specialist is actually calling to visit you at 4pm then I think it is a good decision to wait for them. The specialist nurse DD sees is excellent, lovely with DD and very experienced indeed in these matters. When we had a much shorter period without any poo she was right onto it.

Best of luck for 4pm and hope that you have the same experience.

Write down everything that has happened to her physically. Write down her diet. Explain her fluid intake and how this is low because of the impaction, not before the impaction occurs, but as a result of impaction making it hard for her to take anything in. Writing it down and having the checklist with you and a pen to tick off everything you say will make you clear and concise and help you relay everything that is important.

Tell the team that she is seeing that you want an examination to see if her bowel is working correctly, not just treatment for impaction.

It's clear she's impacted. She is distended and has overflow (the leaking you are dealing with). You already know this.

What you want to know is
a. why is this happening
b. how can you prevent it happening again (based on knowing why it is happening)

Be clear. Yes you are emotional right now, especially as you feel unheard and your child is in distress. But do not muddy the waters with your worries. Just stick to the facts.

I would still want to take her to A & E if yet again no one wants to investigate why this is happening. The OOH doc said she needed an xray. If you don't get this from the team you're seeing today, then go to A & E anyway. Get your dp to take her if you think it will be better for you to stay with your other dc. Unfortunately you will have to wait. But take some toys and a blanket and buggy to keep her occupied. Stick to your guns.

It's really ok to get a second opinion. Doctors who go to doctors do it. Complaints should follow a formal proceedure too, not a callback from the gp you complained about telling you to keep quiet. That cannot be part of the official proceedure.

You have the continence lady coming at 4pm. Not too long to wait. They really do know their stuff. They were fabulously helpful for us.

Let us know what they suggest.

Yes to pull ups. Tell her even grown ups wear them when they have this sort of tummy ache and need special medicine (this is true).

Just to add, I think you have been quite clear on here what her issues are so don't think you aren't - it's not your fault if your gp and their practice don't want to pay out for a referral to xray. I'm not a bulshy person either so I find writing a list really makes me feel empowered and probably looks more official to whoever you're talking to as well.

Good luck.

also bear in mind that GPS are pretty crap with regards to allergies and coeliac

had I not known what was wrong with dd2 I'd have walked out of the appointment with more movical and some gaviscon. given that was probably cheaper than milk costing 30 pound a tub

testa are expensive and invasive at times and GPS have sometimes been told to keep referrals down and prescriptions down so you will likely walk out with nothing. or more meds that don't work

you will have to push even harder I'm. afraid. .just how it is.

I dread to think what dd2 would have gone through if I hadn't.

you can do this

my experiment although limited compared to some is also that you reach one cut off point and immediately there's another one.

so say they said they'd do something if she got to X point, and you go back at X point there's then a Y and a Z point. you never seem to get there.

if at 4 you don't have an explanation that covers everything and makes absolute medical sense and has an actual explanation rather than " we will see what happens if" or any more problems and call me and I will try and do X"

then.id be straight to a&e and refusing to budge

Hi.

Just wanted to add my support as a mum who has been there and still am there.

The continence nurses are fab. Poop is their thing! And they will be able to push for further investigations. Their priority will be resolving this episode and then finding the cause.

My 14 year old DD suffered terribly from constipation right from an early age due to a slow moving gut. She had a ACE chait tube fitted last November and it has been life changing.

I would echo the previous poster who urged caution with the picolax - yes it's great stuff but it is strong and CAN cause a big reaction - it caused my DD to throw up her poop when she was in a similar situation at around that age.

The movicol will be messy but it is designed to send lots of water to your bowels which help flush out the old poop.

We are under the team at the Evelina in London, please PM at any time if you want any names, or just a friend who has been where you are.

The continence nurse is the first step in getting your little one the help she needs - you clearly did a great job at your doctors this morning to get him to make an urgent referral to them for a same day appointment- so well done you.

x x