Support thread 15 for parents of young people with an eating disorder

[Mummyoflittledragon]

New thread. The old one is full…

Wow @Tops16 I think your dd is very brave to go through that. I would had thought removal and especially reinsertion would irritate / hurt. How is she doing? I hope that getting the nutrition is helping.

I know it’s relentless @CuppaTandBicky You said about your dd’s mood improving. Are you starting to see a bit more of her?

Thankyou @Mummyoflittledragon she is so brave and trying so hard every day. I am not sure it hurts as such, more become part of a bigger trauma with restraints. She is managing days with oral diet now, physical health so much better and looking so much more alive, some rational thoughts also. Thoughts to everyone dealing with this.

@Tops16 I hadn’t thought that they wouldn’t leave it in even if it was allowed to be. Also the self harm etc. I’m really glad your daughter is getting good support. You sound like a great Mum. Your daughter sounds so brave, I’m reallt glad you are seeing some progress. Thanks for posting, it’s always good to hear how others are doing and learn more about ED treatment.

DD is detained and on a Ng plan, they do indeed insert and remove it three times a day if she doesn't eat the food or drink the supplement. In her case though it would definitely only be the amount equivalent to what she's not eaten/drank, not the whole meal's worth, that seems a really strange thing to do @Tops16 , but I agree the reasoning they've given us for not leaving it in is to do with injury and self harm. I suppose if you have a tube on a normal paeds ward, you're likely to be in bed rather than wandering round a ward?

And I absolutely agree that there's a strong element of punishment for behaviours they don't like. Ours has talked about carrot and stick, but our experience is pretty much all stick!

Gosh @StressedANmum that sounds like a really tough regime. I hope your dd is managing to cope with that and to finish her meals more often than needing the NG tube.

@Tops16 It is so good to hear that your dd is looking more and alive and is a little more herself and managing some days without needing to be fed. I cannot begin to imagine the trauma for anyone in this situation.

Hi, I think that was @CuppaTandBicky DD with the whole meal even if eaten. The plan in my DD unit is anything missed in the 24 hour window is then via the tube once. They use very condensed replacements to achieve the calories as there is a volume limit.

@Mummyoflittledragon thankfully at the moment she is doing pretty well with completing mainly by eating and sometimes drinking a bit of supplement, she's only needed an Ng tube once or twice a week since the detention and never under restraint. For her at least the detention seemed to be the trigger she needed to eat, I suppose she knew she was going to have to accept the calories in the end. There was a phase earlier when she was still a voluntary patient when she was having the Ng feed done three times a day, but after a week or so she started to refuse consent. She says it can be painful.

@Tops16 sorry, you're right, brain like a sieve at the moment! That's interesting that yours is just once a day - I asked about that for DD and our team said they couldn't do it because it was too much liquid in one go, but they are just using the same supplement they give to drink, so presumably not as concentrated as yours. It makes much more sense to do it as few times as possible.

Normal paeds ward and paeds oncology they do indeed wander around. Feed is administered overnight. Turned on once they are asleep.

I don't know, because i have a lot of experience of one and none of the other. But my feeling is in paeds and oncology ng feeding is seen as a life saving intervention. In EDU its also seen as an opportinuity to promote behavioural change.

@StressedANmum
I’m so pleased to see your dd is doing better. I hope this continues. I know the relief you are feeling to slowly see your dd return to being herself a little and eat. As Girlie said, the brain reaches a phase, where food is seen as dangerous. And this is so hard to overcome. I hope your dd will continue to cooperate.

That makes sense, however, it seems very difficult for the patient. I suppose that’s the point. The approach with adults being as much autonomy as possible, in contrast to FBT.

@Mummyoflittledragon thanks, she is doing a lot better and it's wonderful to see, she's put on about 8kg so far although the weight gain has slowed dramatically this week (200g as compared to over 2kg the last three weeks since she was sectioned). And definitely her thinking around food is improving, although she's struggling with the changes to her body. If I could just persuade her consultant to loosen up a bit in terms of letting her have a little bit more freedom, it would be great and raise DD's spirits a lot, but she's determined to only give her the tiniest concessions each week.

Wow @StressedANmum that’s amazing and more than my dd has put on in 3 years! I can imagine your dd is struggling with the changes as they’ve been really fast. I can understand why you want more concessions from the consultant. I suppose they’re used to this process. It’s really hard.

@Mummyoflittledragon yes it's a bit of a shock to the system after almost a year of continuous weight loss. We are very lucky in that she knows she has a problem and genuinely does want to recover.

How are you doing? I noticed your 3am posting time, and hoped that's not a reflection of the stress keeping you awake all night. Preparing for your child to head off to uni can be stressful enough even in normal circumstances, let alone with ND and anorexia in the mix.

@StressedANmum and others. I am just wanting to know a little more about the eating disorder units.

We are facing a quite strong possibility of being admitted to one because the usual general ward and home ways have not been successful.

The nurse told us a little bit about it and the rules sound similar to our experience of general paeds ward. I'm imagining maybe with more supervision?

Do they have their own room? What are the visiting rules like? My child is still so young and anxious, she never really leaves my side so it'll be a huge thing. I stayed with her in the general hospital.

Also wondered how long an average stay is. I know this will vary a lot. We were told the average general ward stay was 3 weeks but not sure if edu would be longer?

Hi @CuppaTandBicky , sorry to hear you're looking at further admission. I can tell you about how it's worked for my DD, but it may not be quite the same as we're in NI and the ward is a paediatric psychiatric unit rather than a specialist eating disorder unit, although at least half their admissions are anorexia patients.

When DD was initially admitted she was on 24hr observation with no privacy. So a nurse/HCA was with her all the time, even in the bathroom. This is to assess for things like vomiting or over exercise. She has her own room with an ensuite bathroom. She got her privacy back fairly quickly but is still on 24hr observation after almost 3 months. When she went in they told us 3 months is about the minimum expectation, but she made no progress at all really for the first 8 weeks, so she'll be there longer.

They do the three meals and snacks with one to one meal support during and after. After a few days of only managing about quarter portions, they put her on a voluntary Ng feeding plan and confined her to a wheelchair. There are some activities in the ward, run by OT staff, and she has a weekly therapy session with the same therapist she saw in outpatients. There can also be art or music therapy depending on availability.

If they can't persuade them to eat enough or to accept voluntary Ng feeding, they will section a young person to allow them to use restraints and feed without consent. Our consultant said this is often the trigger they need to allow them to start accepting food, and fortunately with our DD that was the case, she has not need to be restrained. I would hope with a younger child that would be absolutely the very last resort though.

We're allowed to visit from after tea on weekdays, roughly 5-8.30pm, and freely in between meals at the weekend. More recently we've been allowed to take her out for drives.

It is tough, but it's the only thing that's worked for us. Feel free to ask any specific questions you can think of. Hopefully there'll be other people can talk about any differences in the English system (assuming that's where you are).

Sending hugs.

@CuppaTandBicky such a stressful time. My daughter is on a GAU rather than ED only so might be some differences.
we were told average stay was 12 weeks but I haven’t seen any one be that quick here. It’s locked and secure, due to most be detained. I’ve only been on the ward twice. They have a bedroom and bathroom. It’s all very anti self harm, no bathroom door, taps etc. everything is locked. There are visiting times as you book a room. They recommend 3 a week but we go more. There is a school and a formal set up of each day with school, meals, supervision, therapy. Leave depends on weight, then compliance and weight gain. It’s usually decided once a week in advance. Think no leave initially. There would be so much more, but that’s a quick snap shot. Message me any questions. If she goes informally you get a bit more choice I think. In our experience the nursing staff have been truly amazing. There are regular care meetings and weekly check in with parents usually. If you find your local unit and check out I want great care and their cqc report you will also get a feel. I’d say it was a very hard experience. How old is she ?

@CuppaTandBicky I was sad to read your latest post. Have they said where your daughter may be admitted and have the discussed it with her. I know sometimes the thought of admission can flick a switch.

I know I said to you before that hospital, whilst awful, didn’t seem to be as awful as it could be, if you know what I mean.

I would definitely ask lots of questions at this stage and push for her to be as local as possible.

I’m hoping someone might have experience of this because I genuinely can’t work out how we’re supposed to manage it.
My daughter (early teens) is under CAMHS eating disorder services and has lost a significant amount of weight quite quickly. She has lost another 1.1kg in the last 5 days and is now 40kg. At today’s appointment they could get her blood pressure lying down but couldn’t get a standing reading despite trying four times. Her bloods have been brought forward to Thursday, she has another ECG next week and she’ll be reviewed again in a week. She’s also being discussed at MDT tomorrow.
We’ve now been told I need to supervise 3 meals, a snack and milk each day — roughly 40 minutes during the meal plus around 20 minutes afterwards. She is currently saying she won’t eat at all if she is supervised.
The complication is that I also have a younger autistic child with extremely high support needs who cannot be left without me and needs to be with me virtually all the time. My daughter won’t allow him near her bedroom, so supervising her meals upstairs isn’t possible. I’ve therefore said she’ll need to eat downstairs.
The ED team have mentioned possible community support/crisis team support with meals if things don’t improve, which sounds helpful in theory, but my younger child also struggles hugely with unfamiliar people coming into the house, so I have no idea how that would work either.
Has anyone been in a similar position where one child needed intensive eating-disorder meal support but another child had very high additional needs? What did CAMHS actually put in place, and how did you manage the practical side of meal supervision?

So sorry to read this @Holly221288 I’m not in a similar position as my DD is an adult living away from home but sending love and hugs.

Hi @Holly221288
I am very sorry to hear of your family’s struggles. You say ‘we’ were told by CAMHS. Does that mean you have a partner / Dh? Realistically parents on here, who work have taken some form of leave from work to care for their ill child.

You say your dd is saying she won’t eat when supervised and wants to eat in her room alone. This is not ideal at all. I would 100% try to get your dd downstairs and eating with you. If this doesn’t work, try not sitting with her, but in the same room. even if she can’t actually sit with you.

If your dd obstinately won’t eat with you, can she be trusted to eat alone? My dd can for the most part btw, but idk if your dd is purging after eating as you mention supervision post meal. If you do resort to eating alone, this is the hardest way to do it in terms of recovery imo as your dd can find tricks not to eat. And CAMHS will not like it, especially in a young teen. However, if you resort to it, you need to be vigilant that your dd isn’t flushing food down the loo or hiding it in bags and taking it out to dispose of, stuffing it in her wardrobe etc. So you need bedroom checks and to be upstairs for the duration of eating and the time afterwards.

My dd does it this way. And not under CAMHS. She was too anxious to participate and signed herself off at 16. We pay someone to support us to support dd. She is now 18 and eats out a lot now she’s older, but when younger, she ate the majority of her meals at home alone or with friends. She has AuDHD and under duress, the majority of the time, twice a week, she eats with us. That’s really important to do this.

I absolutely can’t tell you what to do in this situation. Ideally you have a partner, who stays home for the foreseeable and you supervise one child each. Do be aware your dd doesn’t sound mentally well at all. ND complicates things. And my dd is now coming up for 3 years of being unwell.

If your dd refuses to eat for 24 hours or eats fewer than 500 calories in a day, this is red on MEED medical emergency in eating disorders and you will need to take her to A&E. Often the threat to go there is enough to make your dd eat. You need to be tough now and no nonsense. And I get that is going to be incredibly hard with 2 high needs dcs. And absolutely try the threat of A&E rather than doing the alone eating as that really isn’t something I can recommend as a long term strategy without extensive support.

As for the community support and your youngest, hopefully they will be well versed in how to handle children, who don’t cope will with change.

Hi @Mummyoflittledragon, thank you so much for taking the time to reply.

Unfortunately there is just me at home with 3 DC (I also have a 15 year old son). I don’t currently work (well other than some ad hoc online stuff) as my youngest isn’t currently in school.

I have just tried really hard to get her to eat downstairs but she literally left her dinner and said she won’t eat if supervised. I have had to take it up to her as she’s eaten nothing else today. She isn’t currently purging or hiding food but I know how quickly things can change. She’s aware the next step is meal support or hospital but she says she doesn’t care.

I just don’t know how to do this long term.

Hi @Holly221288 this sounds really though. I would say one day at a time. You can think long term right now as you don’t know what is going to happen. If she is hospitalised you can explain you can’t be there 24/7. I would say take all support offered and don’t think further ahead than tomorrow. You can’t do what you can’t do. That’s what I have to tell myself

Thanks so much @StressedANmum and @Tops16 it's useful to hear from people's experiences so I can prepare. It makes me feel sick with worry but if its the right thing to do I know there's no choice.

@Holly221288 in all honesty it sounds like hospital may be the right place for now Sounds like a big loss of weight and a very low weight. Were they happy with the blood pressure/heart rate? In hospital the nursing/support staff will be able to supervise meals.
Sorry youre in this position is sounds really really hard! I have a younger child and I know it's hard enough splitting your time but with a high needs child that must be impossible.