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!

Footle we got our EHIC cards today, thank you for that again.
She's very much the same but seems happy in herself and is getting on ok.
We are back at the hospital early June to discuss the exclusion diet bollocks Would prefer she had the hursprungs test first. To save the diet business if it's not needed. I just know it's not dietary

Glad you got the cards. They don't replace travel insurance but make things easier.
Is there something about the diet that relates to the Hirchsprung test ? Seems a waste of time and energy if not.

This might be completely off track but... Does she fart much? If her anus is too small/tight, then maybe it's not allowing for regular farting and the wind is staying trapped and giving her a distended stomach? That would then make sense given what the latest doctor is saying.

I have posted on your thread before under a different name mae so I promise I'm not just some random coming on here to talk about farting , but it is the first thing that came into my mind when you said what the latest doctor had told you.

Hi, the dietary thing is completely unrelated to the hursprungs. To be honest I think depriving her of the food she wants to eat is more upsetting that a quick biopsy for her so would want to do the test first then try the eating after if it is negative.
I have terrible food anxiety, have to take making them food one meal at a time. I desperately don't want them to develop an ED so don't want to feed them too much, too little. Feel like I have over fed them, underfed them. And I would struggle to be able to implement the dietary change without a lot of support.

Hi mrs it didn't occur to me that talking about farts was how you got your kicks
The small anus hasn't been mentioned again or examined. So I am guessing that it will be something we talk to the surgeons about when we see them. I am assuming that it isn't the gastro' area of expertise. But that would make a lot of sense.
She hardly farts at all, compared to big DD who is a picture of digestive health!
So what you are saying would make sense.

When I start to think I am understanding how her body is working, they tell me something else.

The diet sounds like a very bad idea emotionally then. Any chance of explaining to whoever' s in charge of this decision ?

We will be seeing the dietician mid July so can discuss it then. I'm pretty sure gluten/lactose/milk protein intolerance causes diarrhoea-y symptoms rather than constipation and would have presented before now in a more obvious way but happy to stand corrected.

We have be told to use Leicester's gastro nurse now and not our local nurse so will get dp to call her tomorrow as the low laxative dose isn't going well.
I'm too pissed off to speak to them myself.
I have no patience of good will towards them left

Coeliac can show as constipation :-(

That's good to know pizza she is on her second test for that so will see if it comes back positive this time.

Have not looked at this thread in a while. sorry your still going through it.

My ds has a cows milk protein allergy and one of his symptoms was apparently chronic constipation so it is definately a symptom allthough I think in my sons case the constipation isn't caused by that as he's been dairy free for nearly 18 months and is still chronicley constipated. His gastro says chronic constipation can be caused by delayed gastric emptying due to underlying allergys so I think most can present like that.

On the anxiety around feeding issue, have you ever heard of Ellyn Satter? She's written lots of books about feeding children and I've read one of them. My issue was getting my toddler to eat at all but she also covers how to avoid over-eating in children and argues convincingly that it boils down to a division of responsibility:

The parent is responsible for what, when, where. The child is responsible for how much and whether. (See more at: ellynsatterinstitute.org/dor/divisionofresponsibilityinfeeding.php#sthash.IhOrtMxS.dpuf)

So you provide regular suitable snacks (if age appropriate) and meals but let the children decide whether they want to eat at all and if they do, they decide how much.

The idea is it takes a lot of stress out of feeding for the parent AND teaches children to trust their own body to know when they are full.

I don't want to add an ounce more stress to your plate right now, so only look into this if you think it would cause you less stress once you're on an exclusion diet. The book I read was How To Get Your Child To Eat... But Not Too Much.

wrt coeliacs: the only reliable test is a biopsy. the blood test can give false negatives.

Hey Littlemaemae

Sorry to hear that the issues are still ongoing.

Just keep on keeping on. You're doing a grand job, even if it doesn't feel like it X

Hi OP. Still rooting for you.

Hey OP, fingers crossed that things are improving or that at least you're getting some proper treatment

I haven't logged in for a while!
Thank you for the messages,
We are doing ok.
After trying lots of different med combos, I have stopped the movicol and instead we are using pico sulphate once a week to try to produce a poo.
i know that is against advice,
But her poo is very soft and the movicol was causing her to leak through out the say and was causing her a lot of distress. And wasn't helping in the way of making a proper poo happen.
It's become very obvious to us that it is a problem with the bowel pushing it out as apposed to it being hard to shift like constipation you or I might get occasionally.
Same problems but it is much more tolerable and not so time consuming. We can all feel the difference with the stress levels in our house.
The distension is improving. Her stomach isn't huge every day now.
I think DD feels more in control of her body and is a very happy little thing!

She's a brave little girl, I'm glad she's starting to feel better and hope you get a proper resolution soon. Well done Mae x

Thanks for updating. I hope you can enjoy your holiday now.

Aww, poor little mite. That's good, hope that things continue to improve.

I am anxious to the point of almost vomiting of how to deal with it while we are away, we are going with another family. And I don't want it to impact them.

She has gone down a size in nappies and is even thinner.
I'm worried about toilet access etc.
I am worried about timing the medication so she doesn't have a cramping episode at a time where she will find it embarrassing.
If it happens in public she is mortified. It's so sad to see.

I know the solution is to just take it as it comes.

I have done quite well with the anxiety.
we are going in 2 day, I would have been like this for weeks in the past.

It happens whenever we plan to go away from home even for one night, so not just a holiday worry.

Bit of a silly moan, think it helped just to write it out so I can look at it

It's not a silly moan at all! I'm sure all of us on this thread would be worrying about the same things. I know it's easier said than done but really do try to relax whilst you are away as you are in for a long road ahead with tests etc when you get home which you need all your energy for. I admire how much more confident you seem to be now compared to that first ever thread and think you will come out of this stronger than ever. Hope you all have a great time

Just noticed your thread back in Active. It's good to see you've made some progress. Have a great holiday. I expect your friends know there's a problem and will be as helpful as they can ?

They are the nicest family, very laid back. Unlike me!
I'm sure they will help with big DD if we have any problems.

I literally can not function because of my anxiety. Chest is tight, I couldn't park the car, and I can't pack a bag, lost my keys etc.
I keep having images of holding her down while she is screaming while the enemas and NG tube was done. And thinking I shouldn't have been able to do that again and again. what's wrong with me.

DP is saying I need some propanadol

An you poor thing. You are and have been such a tower of strength that I'm guessing some stuff is just hitting you now. Try to get whatever help you need to help with the anxiety.

What's wrong with you ? PTSD, at a guess, after a series of appalling experiences.

Hey Mae.

Anxiety is a bastard. Mine is really bad at the moment.
I find that mindfulness meditation helps. You can do as little as five minutes and it really does seem to help.

There are loads of tutorials on YouTube. Have a look.

You've really been through the mill...be kind to yourself. Have a great holiday. Enjoy the break and get some r&r. Hopefully time with friends will help with your relaxation too.
X