Hand hold while I wait for ambulance for daughter

[StopTheQtipWhenTheresResistance]

Currently waiting for an ambulance for my daughter. Been sent as category 3. She's not been right for a few days now, not eating, not drinking, just laying slumped on her bed. This morning she collapsed in the bathroom and went really pale.

She has a learning disability and complex mental health problems so she can't tell me what is wrong as she doesn't verbally communicate when she feels unwell.

She was in hospital a couple of weeks back due to an infection (see previous threads) so I hope it's nothing to do with that.

I'm so worried, I feel sick.

I’m so pleased you’ve had some good news. I’m sure the home routine will help with food and fluids. My DD would eat nothing in hospital apart from crisps and ice cream 😬
At home, with her usual food, hopefully you’ll see a better result.

So happy to hear your DD is allowed home. What a time you've had.

Hopefully, she will drink once she's back home. My DS won't eat or drink away from home either (autism & ARFID). He needs to be in his safe place.

Bowel movement best news ever, I hope she wasn’t in too much pain ❤️ if you remember I said her potassium might drop once things move as there’s a lot of laxative in there and it’ll all hit at once. It’s a completely transitory problem that should be past now., although sometimes it puts you off eating and drinking so I’d see if she fancies Diet Coke or liquorice as these are great when you have a potasssium crash xxx

Thank you everyone, she's back home now and tucked up in bed. I ordered her a McDonald's, not expecting her to eat it but she devoured the whole lot!! She has also had 2 milkshakes since being home. Can't believe the difference in her appetite.

She did have some bowel incontinence which was pure liquid and quite a large amount. I'm hoping this is just the effect of the laxatives as opposed to overflow.

It's great news she's eating and home, I hope she keeps improving and you can get a constipation plan soon after her needing a second admission for the same issue.

Thank you. She's doing loads better and eating every single meal I've made for her. Also drinking plenty.

She is having a lot of type 7 bowel movements though (pure liquid) which I hope is due to the laxatives and her body having a clear out. Will have to see if it settles down over the next couple of days. Her LD nurses are wanting to keep an eye on it in case there is still hard stool in there and this is just overflow. We aren't sure at the moment.

The GP attended the MDT today which was positive. We need a constipation plan in place so I know what actions to take, such as no bowel movement for 4 days, increase laxatives and have an enema etc. Been trying to get it sorted since November but hopefully the GP will come up with a plan now. The LD nurses wanted DD to have another X-ray to check if the hard stool had gone and is coming out but the GP and doctors at the hospital aren't keen on doing more imaging.

Daughter has also started talking verbally to me again so we are on the way up.

Great to read your updates @StopTheQtipWhenTheresResistance. I’m really pleased your dd is home and eating!

just a thought, but can your LD nurse refer you to the local continence team or get the GP to? They’ll be well versed in managing constipation and supportive of your GP and LD Nurse.

Well here we are again and I think it's going to end up in another hospital stay.

She hasn't had a poo since 7th February and has declined since then in terms of reduced appetite, reduced fluid intake and general mood. Today she has stopped using her phone to communicate with me which is always a sign she's not feeling good. Her tummy looks bloated too.

Spoke to the GP yesterday who advised increasing the sodium Picosulfate and having an enema. Nurse came out yesterday to give the enema but no result as of yet.

I really want to avoid hospital again but I'm not convinced they cleared her out from her last admission as they didn't check whether it was moving along properly or whether it was just overflow.

She is under the continence team now, they are coming out to see us next Friday for their first visit.

I was a little concerned when you mentioned a poo every 4 days.

We keep a tight rein on my son’s constipation. He’s on 3 movicol a day (same as laxido) and has a suppository if he hasn’t had a poo for 2 days. We would not allow it to build up.

Young people with LD go down hill so quickly if they’re ill.

I’m not saying any of this is your fault, of all the conditions my son has, constipation was the one most understood.

I hope your daughter gets well soon.

It’s great you’ve got the continence nurse coming out to you. Huge generalisation but I’ve worked closely with a few across various trusts and they always seem hugely knowledgeable and compassionate. I really hope your experience is the same.

I’m sorry the bowel movement has slowed down, it does sound like the GP is all for tackling it pretty aggressively which is good. Probably not one for right now, but how is your daughter with movement? I’m wondering if getting her bouncing on one of those balls that women use in labour could be helpful. General exercise, in whatever form, is important too if you can identify something that appeals to her.

@Anewuser That sounds like a really good plan that your son is on. I am still waiting for the GP to formulate a plan/protocol for how to manage her constipation.

You're absolutely right about people with LD going downhill so fast when unwell. DD is not eating, not drinking and basically not moving. I'm syringing liquids into her every hour.

I never thought for a second you were saying it was my fault, don't worry. 😊

@Cornettoninja completely agree with you, she needs to be getting up and moving around to try and get things moving. She basically doesn't move when she's like this though so I have to manually make her stand up and take her to the toilet. That's a good idea with the ball, she would probably find that fun. I'd have a go too 😂

Latest update is that one of her LD nurses came out and phoned the GP. I'm still waiting for their call back as it was put down for an urgent call back. DD had an enema yesterday afternoon. Today she has passed liquid that was tinged with brown but I don't think it was a proper bowel movement, more like the enema liquid coming out mixed with poo.

I'm hoping if I can keep getting the fluids down her every hour then we can treat this at home...hopefully.

I’m so sorry your poor daughter is going through this. My brother has profound LD and autism. He has also been very very constipated his whole life, but it’s got worse as an adult. He too got hospitalised a few years and he now has enemas every other day and has Movicol daily (3 sachets a day).

Which enemas are they giving your daughter? Are they big Phosphate ones ones or a smaller one like Micralax?

Also I see she’s one Laxido, although it’s supposed to be the same as Movicol lots of people don’t find it as affective as Movicol. GPs tend to prescribe Laxido now as it’s cheaper but it’s definitely worth pushing for Movicol.

Also I can’t stress this enough, movement. My Mum takes my brother out for a long walk everyday as it really helps keep things moving. If he misses a few walks his constipation gets even worse.

have they tested your daughter for hirschsprung disease?

Keeping my fingers crossed it hasn’t ended up another hospital stay.

Glad to see they are finally formulating a plan! The LD nurses sound amazing too :)

I’m not sure if they have it in your hospital, but the one I work in we have 4 HCSW & 4 nurses in each department who’ve had extra LD training in the hope that at least 1 per shift is working and allocated to any patients in that have LD. We call them LD “champions”. I’m one in my dept and the training and regular courses are really interesting - I’m by no means a specialist but it helps us understand more.

She's woken up this morning with a temperature of 38.1. That along with no bowel movement is concerning me. Waiting for a call back from the GP.

Oh poor thing. I hope you get the help that’s needed asap

Poor thing, it really hits her hard doesn’t it.

I’m sending nagging vibes to your GP surgery to call you back if they haven’t already.

Hi OP, how is your daughter?