get it out! thread 3

[littlemaemae]

I have moved this to child health board as I don't think aibu is appropriate anymore.
What began as a quick question has become 2 now 3
The support on these threads has highlighted the best qualities of mumsnet and I am so grateful to every lovely person who has supported me so far!

Is there any way you could see someone privately? I know you absolutely shouldn't have to but if you feel after you've soon the next person, that you aren't getting anywhere and you and dd are just getting more exhausted/distressed, then it might be worth thinking about.

My dd ended up taking dgd privately when they were at their wits end being fobbed off by doctors, midwives/HVs etc about feeding problems. It was amazing how quickly a plan was put into action once they went privately and dd felt so much more supported and calm, knowing there was someone who seemed committed to sorting things out and who she could contact if there were problems. The consultant also made it clear what he would try if the problems didn't improve and in what order he would do them. That way dd felt things were in control and she was less anxious.

In the meantime just stay as assertive as you can. I sometimes find the question - "If this was your child/mother/father etc etc - what would you do?"- gets more compassionate/considered response.

Hey maemae.
Use your frustration and anger to be really bloody assertive.
Everything crossed for some positive move in ANY direction.

I think you all deserve a medal. X

I don't think private treatment is appropriate right now. Mae's DD is an acute case requiring urgent treatment. A private consultation is more appropriate for chronic conditions. This little girl stopped being "chronic" once she went more than ten days without a bowel movement, if you ask me.

Ask for a second opinion from a different Dr maybe?, I can't quite believe this is happening to you? I don't see where this is going to go the impaction after 6 weeks is bloody serious. Hugs

De lurking to say I had a short stay with my youngest on the assessment ward at Leicester before going to the ward. The ward was way more comfortable and had a play room etc so hopefully you'll be more comfortable once you get there

a lot of private consultants work in the NHS during their day time job. if you got a private consultation and the consultant agreed it could be hirschsprung then he could get you back into the NHS with a letter and it could be investigated - in fact he could probably deal with it in the NHS for you in his day job.

What a total nightmare. Are you being discharged home or back to the first hospital?

if your DH can print the essential info you could just hand that each time...

with a "here it is written down"

inevitably you will get diff junior doctors and dont assume they all read the notes properly...

ie she needs to solve current severe impaction and identify cause; , has chronic constipation, current severe impaction since x weeks, treatments to date and list them, need to identify cause

I can imagine you wanted to throttle the dr that suggested moving back onto Senna and movicol. I'm pissed off for you!

Keep strong!

fair point vague ideas - as i said. clutching at straws. poor little girl

I really hate it when doctors/other HCP do this. FUCKING READ THE NOTES. The damage they do to patients/parents' faith in them is astounding when they waltz in and spout something ridiculous. Like the sonographer in my second pregnancy who said she didn't need my notes and refused to take them, and then asked why I had been referred for growth scans. I said 'because my first baby was stillborn and this one has an abnormal kidney'. Cow.

Start asking very straight questions and make sure that you write the answers down "in front of the doctors". Ask them what is causing the problem and write down their answers with the doctors name on it. Make sure that they see you doing this. This is just so awful, Im sorry I can't be of any help!

About the your dd saying there is no where to play that's quite a big thing to be missing in a hospital setting its pretty disgusting as that's how children deal with these traumatic situations. I've been to 3 different hospitals with my son about 9 different wards and departments and not yet has there been no play room! I really hope you and dh are talking to some one with more sense as I type. X

Poor little girl, Mae you are doing everything right to help her but there doesn't seem to be any continuity with the Drs, it's sad that you have to do it but you are going to have to make them listen to you when you tell them everything she has already been through. Fight for them to move this up a gear! Good luck, keep going xx

I've just come back on to check as knee you were moving to Leicester today and was expecting some good news.
I'm so angry and frustrated for you.

I thought you had been referred to Leicester so that you could see a consultant. Thought that the previous hospital was "sending it up to a higher authority" in hospital terms.
This seems like going back to square one.
Ask to see the consultant asap. No chance of seeing her/him tonight but demand to see him/her first thing tomorrow.

This is dreadful; what a ghastly time you are having. I do hope you've found the consultant to be more helpful, and that you are just too involved in dealing with dd's actual treatment to post.

Thinking of you, Littlemaemae. Keep strong.

Sending warm thoughts . And much strength. This must be almost beyond endurance. But you will do this. ( I'm an introvert too- we have backbones of steel.)

I hope things are looking up now, I can't imagine how yi felt when they said that. Much love to you all, hope you have a decent night

Really recommend PALS in this situation.
Not to complain, but to help advocate for you with the medics.
They know the system, and can help you navigate it. They lady who worked with us said 90 percent of her time was spent opening up communication channels between patients and medics.
Plus, in our hospital, they answer the phone. A really nice lady came to the ward to speak with us. She opened doors, made things happen, and made us understand what was happening.

Before that I was a bit of a deranged banshee tbh (8yo w neurological problems).

We are on our way home.
We got to see the consultant.
And I'm pleased to say she had an X-ray and is cleared out!
Our hospital had been advising us wrong, they thought what was coming out was overflow and emphasising the importance of passing a huge stool.
In fact it had been turned to liquid and all that is inside her now is klean prep and a huge amount of wind.
She said she has been on it for a few days too long and that would be why she got so poorly towards the end.
We are back in 2 weeks to get on with all the testing she needs.
And to get a diagnosis.
We are SO relieved. I think we are all going to drop to sleep as soon as we get in the door.
I'm hoping to update in a few days time with a lovely flat tummy to show off!
Thank you for all the ongoing support it has meant the world to me and had got my little DD better.
I won't forget it and I really hope I can support any of you when you need it.

That is absolutely fantastic news.

I've only lurked before as had nothing constructive to offer by way of advice, but I am so, so pleased for you

That's wonderful news! Have a really good rest, put your feet up and spoil yourselves a bit! So glad she is now going to be feeling better, and that you are going back in for definitive tests soon.