Hospital advice

[idontknow202]

I would really appreciate some advice as I'm just not sure what to think anymore.
We have been admitted into hospital since Wednesday after a sustained period of not eating or drinking (7 days) before for my child.
Since being here they say we are going to have to put a drip in, they get upset, they give them a chance to try drinking to prevent the tubes, they have a few glasses and we rumble onto the next day. Each day the same happens. Today they couldn't manage the drinking. They accepted a drip. Took 6 hours (of upset waiting for this to happen) for the doctor to arrive to do the drip. He said I don't want to give you an easy way out and I want a pinky promise you will try a small cup. And left. They can't drink it.
I feel like it's a total waste of time being here and there is no end in sight. I have children at home I'm missing it's frustrating being in hospital.
I will do anything to support my child but wondering what else I can do to support. The ED haven't made it round to see us yet but they're hoping they will tomorrow.

So sorry to hear this. No advice but I know there are wise parents on this board with more experience who have. Sending strength and hugs

Oh my goodness this is a lot to deal with. How old is your child? Have they been poorly or are they refusing to eat due to eating disorder?

Are you in the UK? This doesn’t sound right at all that the ED team haven’t been round. Have you seen a dietcian? You need more support

Sorry I don't know how to reply to you but thank you for replying.
They are 12, definitely an eating disorder but no one is listening. The ED have refused the paediatrician referral as they have a healthy weight. We are still in a UK hospital. The dietitian has come round and is horrified she has been left having not had any fluid intake in nearly 48 hours because her head won't let her. She's asked for urgent bloods to check and is coming back tomorrow to check on her as she is usually community based. It's mentally exhausting fighting for someone to listen and watch her waste away.

This is awful for you. You know you can ask for a seconf opinion for her care. The ED team will surely visit today and every few days. This isn’t how you should be treated. Please keep talking. You must be so frightened and frustrated xx

Thank you. The ED team are refusing to visit. They can't drink any fluids at all and the more the nurses are getting cross the harder it is for them to even try. So many people have been lovely but our current nurse doesn't understand ED or autism. I'm sure we will get there. I was so deflated and vulnerable earlier so thank you listening.

It's helpful to just share our journey as literally I feel like Ive fallen through rock bottom. The hospital held a MEED meeting today and the ED team finally have agreed to come and assess but not til Thursday. We've now been told to expect to be in at least week while the assessment and then results of the assessment. Suddenly they are talking about what it looks like being an ED inpatient and that it can be weeks of being hospitalised. Everything no doubt will slow down over the long Easter weekend too. Desperate times.

Please keep talking. We totally understand the feeling of doom and desperation and just feeling listened too really helps. I’ve no idea why the ED team are taking so long. Did you have any involvement with anyone before admission or did you just go straight to A and E? Xx

are they talking about moving you to an inpatient unit or leaving you on the Childrens ward? @idontknow202 I hope you are managing to eat etc in the hospital. I know how hard it is to look after yourself there. Make sure you leave the ward each day if only for ten minutes xx

Thank you both.
I honestly don't think she is severe enough for being moved elsewhere at the moment. We are on the children's ward, the nurse tonight said they do have longer stay ED children here.
She was diagnosed with an ED last spring, had support and discharged end of the summer. Been under camhs the whole time. I felt it was brewing again end of the year, and asked camhs for an early referral to intervene earlier than last year. First was declined.
Had second referral a month later they was diagnosed disordered eating and wanting to discharge, she was lying and they didn't even try to listen to me. She told them she couldn't get better yet , they saw us 3 weeks later and discharged us with a she's not underweight, she's had 3 good days, she wore jeans instead of leggings and they didn't notice.
They brushed off her big increase in standing pulse rate as anxiety, but really she hadn't eaten all day. They told her she was healthy and didn't need to come into the team. One of them even said if you're trying to lose weight this isn't the right way.
Queue and intense decline over the next 3 weeks and she pushed more boundaries and began exercising a lot, and making herself sick after meals. I saw the GP beginning of last week every worried and then again on the Thursday as she hadn't eaten in days and not drunk anything in a few days too and she sent us to the ward. They kept us in.
They told her if she didn't eat she would have an NG tube, and a drip for fluids. This scared her and she managed to eat parts of her 3 meals Friday, and Saturday morning out of fear. The ED team said this wasn't a real ED and declined the first referral the hospital made but we didn't know this until Monday. On Saturday afternoon she became so distressed at the amount she had eaten she stopped drinking to avoid feeling full and it got so bad she collapsed today.
When we found out Monday the referral was declined again I asked for psych and dietician involvement and for someone to listen to her.
She was the bravest she's ever been and opened up and told them voices in her head tell her not to eat / drink, she constantly worried about appearing fat, it dominates her entire thinking about how not to eat how to exercise how to avoid drinking. We she came round from collapsing today her biggest fear was everyone laughing at her for looking fat spread out on the floor. She's been so weak she has had to be pushed in a wheelchair around and she can't looked down as she's scared her legs look too fat for the wheelchair and everyone is laughing at her.
I'm so sorry how long that was - but I needed to get that off my chest. Thank you for being so kind as such a awful time.

Oh my goodness this is very hard for you both.
it sounds like she does t fit the ED’s team criteria as she isn’t low enough weight - but she isn’t eating and is now collapsing so she needs to fit someone’s criteria!

I hope they help you on Thursday. Are the doing refeeding bloods and at least 4 hourly obs including blood sugar? Do you feel the hospital are doing enough? Xx

Yes I feel thats the issue, she's at healthy weight still. I have spoken to beat 2 and they have shared information that shows nice guidelines say BMI shouldn't be the sole reason a referral is declined.
It's very hit and miss here , you get one good doctor and the day seems clear. Handover all changes. Sunday she waited terrified for a drip for 6 hours and she told everyone she just couldn't face the mental battle of fighting to drink. The new doctor appeared after handover and said no, I'm not doing a drip as it helps her out she needs to drink. He also refused paracetamol for her headache as he said it was brought on herself. Thankfully we haven't seen him again after that night shift!
We saw a lovely doctor this morning who was great, promised us he would come and feedback after the meed and then we saw him go home. I got upset and spoke to the nurse and filled us in on the notes from the meed, she was the one who said prepare yourself for a longer stay.
She has autism too and I don't feel like they are supportive with that really as little things can be done to really help put her at ease and they don't.

It sounds like you’re having a really hard time. Has today been any better? It’s so hard when people don’t help with not eating and just make things worse.

This may be so hard for you. We’re here to help xx

Thank you, thankfully I feel we have turned a corner while we are in. We are under specialiast ED dietitian now, we've seen the same paediatrician 2 days running. I understand the treatment plan now, she was too ill to begin intervention at the beginning as she's so high risk for refeeding syndrome. So today is day one of a eating plan with daily bloods. A lovely lovely nurse came up with a great idea of using a syringe to have 5ml at a time of water that I can help her with and the lovely dietitian we saw today has said she will listen to feedback to create the meal plan as close as she can listening to her sensory struggles so at least the food she is presented with isn't putting her off as I know she doesn't like it before even the mental battle of attempting to eat it.
I'll savour this positive right now.
I desperately miss my other kids but she was feeling well enough to have them visit for an hour today and it did us all the world of good.
Thank you for listening to the roughest week ever and getting it more than my family.
Fingers crossed bit by bit we get there

I did wonder about refeeding, I’m glad they have told you. They will now slowly increase calories if the blood samples are ok. Daily blood tests aren’t nice. They usually take them for 7-10 days. It’s reassuring to know things are ok though. I’m really glad they are starting to help you. It sounds like the ED team think this is more something the medical team can help with as she’s not low weight. Hopefully once you’re discharged they will start to help you again.

Thinking of you xx

Had the ED assessment and she has an ED unsurprisingly! They're going to discuss her at their next MDT next week but she is currently here under paeds for stabilising and the dietitian to review Monday. She's lost weight again since we have been in and she's being weighed Monday. If she has lost more weight it's an NG tube for her which she hates the idea of so I'm hoping she will carry on trying as hard as she is.

But she is crazed she doesn't know her last 3 weights, she is terrified they are going to make her gain weight. But one day at a time!

I hope things are improving for you @idontknow202 Bank holidays in hospitals seem to go on forever! I hope you are receiving the help and support you both need xx

Hi, thank you for checking it it's so kind of you. You're absolutely right the weekend did last forever , hopefully a back to normal day today will feel better.
Each morning brings something slightly different but over the weekend her bloods went out of whack with refeeding so it was scaled back a bit and she has concerning cardiac symptoms so is now on wheelchair movement or bed rest only.
New bloods today to review. Apparently an ED nurse is coming to meet us and get involved today , and a meed review later.
It's my son's birthday Friday and it's been mentioned we may be allowed an hours home leave if she is stable by then so fingers crossed for that.
Today's job is sorting parental leave request for next week to take the pressure off.
Thank you for being so kind, it's oddly therapeutic writing it down!

I totally get what you mean about writing it down @idontknow202 sometimes you are just on autopilot, and writing it down sort of organises your brain!

I wondered if the nooods might go strange. It’s sort of a good thing as it means they’re eating. Bed rest is annoying though, the amount of times I said sorry for bashing people with the wheelchair. On that note, I would try and get off the ward of you’re allowed. In the sunshine today try and get outside if you both can.

I have everything crossed for Friday, have they said how long you might be there. The ED team might do home intervention when you get out. Let’s concentrate on Friday for now. We’re on your shoulder xx

How many more days of the refeeding blood tests do you have? Have they extended it as they changed? I know the u known is so hard. I hope you are getting the support in the hospital you need. I hope the hospital ward has somewhere for you to go for ten minutes xx @idontknow202

Hello, thank you for checking in. They have been unable to take bloods the last 3 days due to such poor veins and her blood is too thick to collect. They just keep saying they will try again tomorrow. But as we are technically on day 8 of refeeding which is very up and down but significantly more up than 2 weeks ago, they are sure she is ok and I have nothing to worry about. A clever NICU doctor got an IV into a odd arm vein and left a cannula in but it clotted and had to be removed.
We had a meeting with the community ED team who have agreed some goals to work towards for discharge into their care at home. More than half of 3 meals a day and 1000 mls a day fluid. They are coming back Tuesday for a review. We have a adult mental health nurse coming by each day now but she really really doesn't understand autism and my daughter hates her - the one benefit of this is let's try and get out of here as quick as we can to get to the home support we now have in place, is motivating her to try her damn hardest. She has tried so hard today she is absolutely shattered and been asleep for an hour. A really lovely nurse here and said she is happy to swap out the morning snack for a lucazade or supplement and the afternoon snack for a kinder egg or a supplement to support an element of choice - and both has been successful today. Baby steps but we are making progress xx

I’m really glad you’re making progress.

Adult mental health nurses aren’t what you need! I agree that using it as a tool to get out is a good idea!

Are you able to go home tomorrow at all? 8 days, I bet it seems like 8 weeks or months. Would your daughter be due back at school on Monday?

I’m really glad they’re talking about the home intervention team. I think your daughter may like them and engage with them.

Everything crossed things continue to improve.

How are you doing? Xx

Just wanted to say I’m sending love and strength. I have been where you are and I know how lonely and how you feel so full of doom xx

Really hope you’re ok @idontknow202 I’m hoping you’re home and getting settled xx

It's been a busy few days but thank you for checking in. We are home on bed rest and 2 daily home physical checks. It's obviously nicer at home with familiar surroundings and I can make different food offerings more likely to succeed but already she's refusing all snacks, and obsessed about calories in her meals, eating around half of her meal plan.
ED team of course - you need to get the planned amount of calories (3 full meals) and fluids (min 1 litre) into. Of course. I try. I fail. We are at 2 meals of 2/3 which is a massive improvement of course and fluids she's around 750ml.
I have asked for the next 2 weeks off work which I've been given. But I just can't see a way forward. However I can see improvements from 2 weeks so it's actually good to have it written down to look back on.
We eat together holed up in her room, no one else in the family can come near at meal time. Her blood pressure is so low she can't do very much at home, more than a walk to the toilet makes her so dizzy she can't see. But I can manage the sensory overload here which helps keep her more emotionally regulated so that is good.
I just can't see how I can make plans to return to work. I'm off unpaid which brings different pressure, not that she is aware of course.
Thank you this is really helpful!

Loads of support op. You can do this and at home, I’ve been there. Drip and not eating at all (was already underweight so they did see her straight away) unfortunately Ed team were not the best re autism but was discharged 48 hours later into home care as it was covid times so no beds - 10 hours of 3 visits a day and constant coaxing to eat (her dsis took the lead as i didn’t live there) before we transferred her down to me for a week then only my parents and mum spent 3 months getting her back on track, one dessert at a time, baby steps, and thankfully she did get back into tea drinking quickly which meant fluids were ok. I admit i didn’t have the patience and was working in person not furloughed (essential worker) so we did what was right for us.

the positive end is 6 years on no full relapse, life on track and happy, obviously still has social anxiety but no using food refusal though she still doesn’t actually feel hungry she says so sets her watch to eat!