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!

Has she actually been tested for Hirschsprung's ? So sorry your ordeal isn't over.

What's the plan now op?

Oh no poor kid and poor you.

I guess this time if things worsen Leicester will be the hospital treating her?

I have a family member with Hirschsprungs and it can take quite a while to find a routine which helps with the impactation. I seem to remember there was a lot of trial and error.

Wishing you strength as you continue to face this challenge.

Have you spoken to her consultant?

Cats a lot of people I know are saying that

we are waiting for an appointment to come through for tests. So she hasn't actually had any yet.

I spoke to the on call Cnurse last night as I was thinking it might be suppository time (I panicked) and she was snotty with me so I just said - find her file. Then she changed her tune completely changed and said it will work on the wrong part of the bowel so no point and that we only usually have this problem with new borns. So I think there is something on her notes that they don't want to actually say to us without the tests.

I think the plan is to wait for the appointment for the tests and laxative her up if so be it in the meantime.

She is starting nursery this morning and I am going to miss it. I'm gutted.

Sat in a cafe outside passport office, I majorly fucked up and we don't have any passports and we travel in 4 weeks

I want to avoid dragging her to that hell hole Leicester to be seen again before her appointment but I don't think out GP is appropriate and our local hospital have transferred her care to Leicester now so that isn't as option afaik.

Cats a lot of people I know are saying that

we are waiting for an appointment to come through for tests. So she hasn't actually had any yet.

I spoke to the on call Cnurse last night as I was thinking it might be suppository time (I panicked) and she was snotty with me so I just said - find her file.
Then she changed her tune completely, was really sympathetic and said it will work on the wrong part of the bowel so no point and that we only usually have this problem with new borns. And she doesn't really know what is best. So I think there is something on her notes that they don't want to actually say to us without the tests.

I think the plan is to wait for the appointment for the tests and laxative her up if so be it in the meantime.

I want to avoid dragging her to that hell hole Leicester to be seen again before her appointment but I don't think out GP is appropriate and our local hospital have transferred her care to Leicester now so that isn't as option afaik.

She is starting nursery this morning and I am going to miss it. I'm gutted.

Sat in a cafe outside passport office, I majorly fucked up and we don't have any passports, I lost mine and we travel in less 4 weeks

Ahhhh double post. How annoying!

It sounds very much like they suspect Hirschsprung's, hence the comment about usually seeing this in newborns.

What's the plan? Can you ask the nurses? You need to know how you're going to manage her symptoms until her appointment comes through. Are they going to fast track an appointment. Are they going to do a biopsy for Hirschsprung's?

She said she didn't know what was best? Not acceptable! She needs to take the advice of someone who does and pass the message on to you.

Hi vague, I was told to expect to be seen by the Gastro in the next few weeks, when we left hospital. This would be to discuss the testing and biopsy, so we would still have to wait some time after that for all the tests to take place.

But have since not heard anything.
I really should chase this up, I will ask dp to do this as I am exhausted and irrational at the moment.

I don't think we have really been given a plan. We were sent home with 'she should poo normally every day, see you in a few weeks, my shift finished 2 hours ago' And something was muttered that short segmented hursprung's doesn't exist (?!)

Every Cnurse I speak to has a different opinion. Only one of them has met her, she does understand the complexity and is calling every day now but we can't move much further forward without the biopsy.

We relaxed for a few days, carefree. Now the tension is building up again, for another battle.

At least you have one person that does understand and is in frequent contact, plus she understands and accepts the need for a biopsy. That greatly increases the chance that you'll get one!

You are far further forward then you were before; if it's a battle then you're definitely advancing.

Go team Littlemae!!

She should poo normally every day

Yeah, and if that was even possible for your DD, you wouldn't have got into this mess in the first place.

I think that advice was lazy at best and negligent at worst. Think you've been fobbed off again. Do chase up the gastro

Oh no LittleMae. I hope this sorts.

And given my user name I hope you get your passports on time.

That is true lacontessa, thank you.
I'm certainly not going to be as patient and accepting as I was last time. I'm ready to snap and make as big of a fuss as is necessary!

Passportmess I have been so worried I have almost been throwing up. I have done the 1 week service and I won't relax until I have it in my hand! I hope you get your 'mess' sorted out. You have all my sympathy!!

Vague exactly, I was gobsmacked when that was said. I was so furious I couldn't even answer. That was said by an EXPERT yet was the most ignorant thing I have been told to date.

My mess relates to US citizenship and has been solved by renouncing citizenship LittleMae although yet more tax returns next year, then we're finished.

I would think the one week service should work - you all deserve a holiday.

LittleMae I have been following and reading this from the beginning and think you are doing so well

I'm wondering, you mentioned a while back that DD has a problem with her bum being too small as a reason for all this. Was that ever followed up? Only I think it was mentioned but then seemed to fall by the wayside; the fact she is still having difficulties makes me wonder if that might be why?

Apologies if you have already mentioned this and I've missed it

At least you know that you can get there with the laxatives if need be.

Are things any better, Mae ?

Are things any better, Mae ?

Things aren't much better we are going back downhill fast.
Debbie the small anus was not mentioned again but it's something I will discuss when we see the specialist as I think it's quite significant.
Hives can I ask if your DD struggles again as soon as she gets disimpacted? Does she go straight back to quite a high maintainance dose? Do you have any time where you can relax before the next impaction? Does her bum ever really hurt?
We are back to wiping bum 100x a day and stuck in the bathroom on the toilet with nothing coming out. She hasn't passed anything since Thursday and that was diareah from the klean prep still in her system.
She is on 4 movicol going up to 6 tomorrow then 8.

Oh OP, I am so sorry. 😥

Oh that's horrendous.

I can't believe you're back in limbo.

FWIW, regarding the possible small anus, when my DD was seen by a surgeon as a baby (with a view to figuring out whether they were going to do a biopsy to test for Hirschsprung's) he took a thorough history and checked her anus. So that should form part of a thorough examination before deciding whether to proceed with a biopsy or not. In DD's case he was satisfied that she didn't need it.

I just can't believe they haven't fast tracked a referral for you.

Oh, that's awful. I'm so sorry.