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!

So sorry to hear this. I hope she gets referred to Royal Hallamshire or GOSH. Soon.

This is getting quite ridiculous. Are you in touch with her consultant? I know you said previously that you had some follow up meeting with them in a few weeks but surely this isn't right and warrants an emergency appointment? At GOSH we managed to contact the consultant on a Tuesday pm and got a reply immediately from her, a phone call from her secretary on a Thursday and an emergency appointment on Monday.

I know you have said you are going on holiday or going away soon. I hope you will be able to get this sorted!! strength!

Be strong Mae, looks as though you have another fight on your hands, in my opinion they should have requested a follow up appointment within a week!

DP is going to call the hospital when he can as I am honestly so exasperated that I will lose my rag with whoever I speak to next about it and if I have to go through the whole story of it again, God help me.

She has started a nursery which is part of big DDs school. They seem lovely and very professional and accommodating but I get the impression they think she is 'better'
And no plans have been put in place for changing her or dealing with her emotional problems as a result of pain or her recent trauma.
Should I contact the school nurse?
I really feel she needs the support, the emotional issues are becoming more apparent now. What should I do?
I don't want to be seen as over protective because she has just started nursery. She has been in childcare 2 sessions a week since she was 18months old and because she wanted to go. So I do know when she is herself or not in a childcare setting.

speak to the school.
they need to be updated on the medical issues anyway and might have experience of some sort.

I'd definitely let the school know. I don't know if you've had time to prepare detailed notes of Littlemae's treatment so far, but such notes might be a handy reference for your DH when speaking to the hospital (just as an aid to memory wrt dates and treatment type/duration/location) and also might be of use to the school nurse if Littlemae has any problems there.

that you seem to have to push so hard in this medical system. I am a big supporter of the NHS but it struggles sometimes with joined-up thinking across areas and services.

This is just unbelievable.

Could the continence nurse help the nursery understand what's going on ?

Could the continence nurse help the nursery understand what's going on ?

Can MN do anything about the double posts ?

little I usually let her off movicol for a couple of days...but then back to a four a day, increasing when I am thinking this has to come out! There is much soiling before the event. It is a cycle. You could ask for microlette enemas as an addition, you can give them yourself at home. (They are small )

I would contact the school nurse, as it is likely to be an ongoing issue. they should be supportive, and if need be they should be prepared to take her in pull ups and change her. It's a medical issue.

I have just picked her up and I am in floods of tears. I have been given a lunchbox critique and suggested that I shouldn't give her a yogurt, cut out dairy and I should give her some wholemeal bread and that will cure it.

Apparently they all had a chat about what I put in her box. 'What does she expect if she feeds her that shit' I am imagining.

She doesn't eat sandwich, packed lunch junk. She only has the fruit, carrots and a small yogurt and leaves the rest.
She has a vegetable soup or stew for lunch and actually doesn't eat bread.

So I am having to put things in 'for show' to make her feel included then feed her when we get home as they wont heat food or provide a hot lunch.

I know it's no big deal and well meaning but it's so ignorant and basically blaming me for her health problems.

Those silly little comments cut me like a knife because it trivialises the misery we live in and suggests I could cure it if I wasn't so stupid.

I have asked for the school nurse to be involved now

Your great, they are stupid. They couldn't feel with half of what you had!

Your great, they are stupid. They couldn't cope with half of what you have!

Your great, they are stupid. They couldn't cope with half of what you have!

Your great, they are stupid. They couldn't cope with half of what you have!

you don't have to put things in for show.
ask for a meeting with the nursery manager to clarify that this is way beyond constipation due to lack of fibre.

ask the continencd nurse for a referral to a dietician experienced with bowel issues if possible.

So important I said it 4 times?!

Oh Littlemae. Let's send the mumsnet mafia round to sort them out and give you a big hug. So suddenly they're all medical experts are they? Yeah, cutting out dairy is a well known cure for all kinds of bowel problems!
Yes do get the school nurse involved and in writing inform the relevant people in school of DD's health issues. Then ignorance can be no excuse.

Oh OP that is so horrible of them. The view must be seriously obscured from inside their tiny bubbles.

If you possibly can, you need to tell them that the contents of her lunch box is the business of you and her doctors. Point out you are already following nutritional advice from actual professionals, and that you will not brook any interference with that.

Please please don't be upset. Don't torture yourself thinking about what may have been said. You and little maemae have been through too much to let people upset you like that. Put in writing to them that you are following medical recommendations. Perfect a steely look that says pleasantly but firmly 'I know what I am doing, and I know what is best for MY child'.

and

You don't need to justify yourself to the nursery staff. You are the expert on your DD. Not them.

Talk about kicking you when you're down! After everything you've been through lately that must have been awful Littlemae, I'm so sorry. They are plainly idiots though and, if you can summon the strength from god knows where you need to set them straight. Involving the school nurse is a good idea and I would also request a meeting with DD's teacher to bring them up to speed with her treatment to date and ongoing management of her condition. Don't be afraid to point out that trivialising the severity of the problem by offering misguided advice about the contents of DD's lunchbox is neither helpful nor necessary! Sending you an unmumsnetty hug and

Tbf cutting out dairy can help people who have dairy intolerances, and it's the sort of low-level GI issue that the nursery staff would know about. However it's obviously completely irrelevant in your case!

Don't torture yourself wondering what the nursery staff think of you. They are not in possession of all the facts and so their opinions are not relevant here. However, if you feel inclined to set them straight then you can tell them your DD is under consultant care for a potential serious gut issue and so her situation is rather more complicated than usual. The more intelligent ones will understand that, the less intelligent ones..... well fuck them, who cares what they think.