Support thread 13 for parents of young people with an eating disorder

[Curlyhairedassasin]

New thread as the other one is filling up fast....

quick update from us. DD is managing 3 out of her 6 meals/snacks orally. the rest is fed via the Ng tube. It's always the same meals/snacks which get eaten/refused. She is really trying but she finds it very hard. How long did it take for your DDs to resume eating everything orally again if they were tube fed? We are only on the peads ward and hope is she can turn it around within 2 weeks or so. If no progress, the team will look at a tier 4 bed.

@Curlyhairedassasin My DD was told that it it went in by tube they would have to have 50% more in terms of calories than if she ate her meal/snack or drank the Fortisip. That gave her brain the 'excuse' to eat. How are you and your other DD doing?

Oh, I like that but they don't do it here. it's 1:1 replacement (I think - nobody mentioned they'd feed more via NG tube).

It's hard. I know she hates the ward and she really wants to come home. But she struggles with certain meals so much. and she is generally flat. We are tampering with the meds to see if that helps a bit too. Today DH and I shared shifts but under the week I am mainly there. It's really full on (I 'wfh' from the ward). It's hard for DD1 but at least we have some sort of end date. Either we turn it around, and she will be home sooner rather than later or she moves to tier 4 and we don't have to be there all day. I just feel really defeated at the moment and wonder if it will ever end. I keep reminding myself of your story @NanFlanders . You had some seriously tough crap to deal with and came out at the other end. How/what is DD doing these days?

@Curlyhairedassasin You will come through it too lovely. You have fought so hard - largely on your own it seems, and you are finally getting some help. Just to let you know: my DD went to a Gracie Abrams concert today with 4 friends she met in the Priory - they stopped for a Maccies en route. They were all doing well - moving on with the lives.

Oh how great to hear!
My dd has made some lovely friends at the EDU. I hope one day she will be out but it still seems a long way off. Though today she had her first full day at home in six months.

Hope everyone is doing ok and enjoying the weather which is improving slowly as the nights are getting longer(For the posters in the Northern Hemisphere at least)

I am seeing a real mix at the moment with dd. We’ve navigated a clothes size increase without rebound restriction. However, a comment surrounding really unhealthy behaviours verging on dangerous for an individual with a restrictive eating disorder history have me worried. I know it should be the psychologist doing this but dd has made the most progress with the direct but empathetic approach of the dietician so I’ll give her the heads up and hope she can nip that eating behaviour thought on the head before it becomes too engrained

A few upcoming challenging events and days which I’m stressed about. I just need to get through the period between now and Easter and then I can breathe a little

@Curlyhairedassasin been thinking of you and your dd since you presented to the emergency department. Thank goodness she didn’t need to be sectioned to get treated(absolutely life saving in some instances but is incredibly traumatic for all involved)
you’ll be feeling a mix of emotions I’m sure, added stress in some regards having a child in hospital but also simultaneous relief at some reinforcements for the receding process! Have you been managing any self care? Have you managed to get some sleep?
Thinking of you both 💐 and very “non mumsnet” 🤗

I really need some advice. eating not improving, she feels worse on gone NG tube. Today, we found a pill in her bed. Turns out she was planning on saving up meds (olanzapine) to overdose. How on earth can I get her a tier 4 bed? I really don't think she belongs on a paeds ward. But the CEDS team is very reluctant and want to wait at least 2 weeks to see if eating improves. Is there anyone else who can initiate this? can the paeds on the general ward make that referral? I need to get her out of here. Her mood is horrid. she is flat/extremely agitated with me during meal support (which isn't working in any case). The staff on the ward is ace, I cannot fault them but it really isn't the right setting.

@Curlyhairedassasin really sorry to hear things are so difficult. The olanzapine pill situation although distressing is an “easy fix”. Explain what has happened to the staff regarding med hoarding and ask for dd to be put on the orally disintegrating tablets(zydis units). If they are able to give the brand name ones they are like the edible paper we used to eat as kids and disintegrate almost instantaneously or at least within a matter of seconds in her mouth with no water needed. Even the generic(cheaper brands disintegrate under 5 seconds). When the nurse does the med round they can make sure dd takes them and have her stick her tongue out for any meds that she takes that are an overdose risk which don’t dissolve.

I would try and speak to the nurse in charge if you can’t speak directly to the paediatrician and use the potential overdose situation to “DD’s advantage” state that the current ward is not appropriate and the fact that she was able to avoid taking a life saving medication without it being noted is one indicator amongst many that she requires higher level care. Sounds blunt but if they refuse ask who will take responsibility if the worst should happen

@Cantfindthewordsddstruggling yes, I know we can fix that but mentally she is going down. That's my main concern really.

Absolutely agree regarding your concerns but removing the possibility of her taking an overdose will stop her med refusal and give her a better chance at revcovery. The olanzapine not only helps with regulating emotional distress but I believe it should also help increase appetite.
I agree wholeheartedly that a regular peads ward is not the appropriate place for such a medically complex child.

I am sorry to hear that your dd is in such distress in the ward and has been able to hide meds @Curlyhairedassasin. Perhaps someone can advise on this, but I would think speaking to PALS may be useful. And perhaps telling the ward you’re going to seek advice from PALS as you are concerned they are unable to appropriately safeguard your dd. Big hugs x

The nurses are fab. DD is very crafty. I don't blame the staff here at all. I think the settings is not right.

@Curlyhairedassasin that sounds horrible for her and you. The nurse should watch her (and every patient) take their medication and check it’s gone. That is a standard part of the job. However it may be that she should be on one care to manage the risk of self- harm.

She’s eating more so perhaps it is be expected that her mood will go down? When my D has started eating, self harm has often increased. Currently she’s cheery (relatively) as eating less than 500c a day!

@Shedqueen likely happier due to the high those with restrictive eating disorders get from restricting so heavily. Dd did her PB for a triathlon when her restriction was at is worst. This was a month before I became aware of the ED

she is eating 1/2 of her meals but non eaten meals get fed via Ng tube. so there is no way avoiding food going in. all control on her part has gone. I think she finds that really really hard.

Hey @Curlyhairedassasin, I'd be concerned about this 2 week 'assessment' period that there might be a plan to discharge her home to you following this if they deem it to be a 'success'. I wonder if it's worth laying out as much / often as you can how hard you have been working at this for such a long time, and being very clear that you are unlikely to be able to make changes at home. This should be the most pressing rationale for tier 4 admission, not necessarily the olazapine situation, although obviously that's another element of concern. Can you start to lay the groundwork and say you won't be able to take her home in the short term?

I do also think that she will probably be distressed about taking in more food / calories for a while no matter where she is - my dd was her most distressed at the point we started refeeding until she had put on quite a bit of weight, it was several months. It's so hard for them to cope with doing something that feels so wrong to them, and that they've been avoiding doing for so long. Every bit of nutrition she gets is a step in the right direction.

Keeping my fingers crossed they make the decision about a specialist unit asap so you aren't having to do everything. How is your DH managing with the admission?

How are people doing? One of dd’s friends attempted suicide and is currently an inpatient. The teen also has AN. I’m worried how this is impacting dd. The whole situation is tragic but I’m relieved that they were admitted given the state of the health system

Oh no @Cantfindthewordsddstruggling I hope your dd is ok and she has managed to talk to you about it. And I hope her friend will be ok of course. It sounds as if she is in good hands. It must be a relief for her parents. It also sounds hard for you.

How has everyone else been? And how has your dd been today @Curlyhairedassasin

It’s been a rollercoaster here. Dd is now eating properly again and I’ve found out a large part of the reason behind why she’s been even more withdrawn and struggling to eat since Christmas leading to binging in the evenings is the boy, who’s been unkind to her. He joined in year 12 last September and his reputation precedes him.

In the end school didn’t speak to him. Because dd is year 12, they gave dd the choice of talking to him or dd trying first and she chose to try first. The background is dd refused to go out with him then the negging started followed by stopping speaking to her now that he has a girlfriend. From her perspective they went from being great buddies to this cold nastiness. He’s very immature, Casanova type. Her 2 female school friends fancy him and they also started being very off with her too. She had a terrible day last Monday and was in tears with the teachers. Then took Tuesday off. He got wind she was upset because of him and sent her a bunch of messages the gist being, he knows she’s going through some stuff but whatever her problem is, it isn’t his problem, he hasn’t done anything wrong.

She spoke to school again on Wednesday, which is when she agreed she’d try to talk to him. She told the teacher she was fine, held it together at school then had a complete meltdown when she came home. She was begging to change schools, was never going back, looking for houses to move to near dh’s family etc. As a result she restricted her intake that evening. The whole situation had me doing a ton of stuff behind the scenes dd isn’t aware of plus feeding her a ton of information on Thursday as she didn’t go to school again and I did and said everything I could to bolster her confidence. The upshot is she managed to talk to him on Friday and explain that they can still be friends. Amazingly he listened. Then today he’s been fine with her.

Dd and I went to the shops after school. She was bubbly for once and we even laughed together. Such a change now she’s conquered her fears and taken her power back from the boy. I’ve told her to be really careful with him now because if she does decide to go out with him some time in the future (which unbelievably she said she would still consider 🙈) he may just play the long game and have sex with her and dump if it ever were to get that far. He doesn’t treat girls well… and I don’t want that to be her first experience...

When we were at the shops, dd asked to go into M&S food hall. She talked of buying various foods she’d seen on TikTok. She also asked if I would buy some caramel sauce to try in coffee. She hasn’t drunk anything with added sugar for about 18 months but she did today after dinner… Imo she’s dipping her toe in action before retreating back to contemplation then trying again or having me push her again.

None of this sounds really big but it’s been really affecting her mental health and I think this experience has been so good for her personal growth in the end even though it’s been difficult to navigate. And school have finally stepped up, are fully engaging both with dd and me.

@Mummyoflittledragon that kind of incident can upset any young woman but it’s so hard when they are also battling an ED. Sounds like you have managed ro get back on track though.

My dd is very unwell. Eating a sandwich and a small bowl of cereal a day, restricted activity and constant supervision. If she ate everything, 600 calories a day. Weight down to same point as two years ago. A meeting yesterday (to which neither she nor I were invited) decided she should stay at home with the same support as she has been getting. Her caseworker is on long-term sick leave and the psychologist on leave. I think they are counting on her dad to monitor her physical health. He is going away for a week so that’ll be me. I have utterly no faith in the team looking after her. Can’t see this ending well.

don’t know why I wrote that but I think it helps to tell someone.

@Shedqueen
Thank you. I did see your post on Sunday and really feel for you. I’m so sorry for you and your dd. My dd was eating this level about a year ago and I just can’t imagine how demoralising that is for you to see your dd going back to the starting point.

I know you have been at this a lot longer than me so please excuse me if I’m telling you what you already know. Does your dd make makes her food herself? If not, is there somewhere to hide anything? Jenny Langley talks about a drop of oil hidden in food and how that can be the catalyst for change. I have done this myself. With my dd, I literally weigh everything and slowly, slowly increase the amount of food at an imperceptible level so that over time her intake is a lot higher. I did this with carrot sticks when she was eating that with humous, which pushed her to eat more humous and did it with the grated cheese she is eating with her evening meal. Dd would only tolerate about 25g at the start, she now eats the best part of 60g.

I think things are trickier as your dd is 18. My had to give her permission to talk to CAMHS when she turned 16. It’s really not right. You’re your dd’s carer. Does your dd have awareness of how ill she is?

You talked in earlier posts about possibly getting some help privately. Idk if this is still an option financially. But it’s never too late to get that support for her and you. The ED coach we work with very much views the parent as having a say in treatment if the young person lives under their roof. It’s a very different approach to CAMHS and I imagine CEDS. The coach we are working with has been clear that the work I’m doing with dd has kept her out of hospital and I’ve likely saved her life. She’s very good. And there are others, who are good out there. Jenny Langley has a list of dieticians for example.

@Shedqueen This is a a very restrictive intake. Has she had blood and ECG recently? I would pack a bag and go to A&E and insist they do the MEEDS checklist testing. Don't be fobbed off like that. DD was restricting like that 2 years ago and suddenly her heart/body gave up. She was blue lighted to hospital and admitted to the HDU (hear heart rate had dropped suddenly, she was stone cold and ECG was abnormal when the paramedics came). I would not keep her at home like that.

We aren't really any further with the current admission. She is only eating about half of the meals orally, today even less. We have a meeting later this week to take stock and decide on next steps. I was hoping there would have been some progress over the week but we had absolutely nothing. At least she has the feeding tube and they can supplement.

Hi all just catching up, sorry to those of you still very much in the thick of it.

Curly I'm sorry your dd is so unwell but glad they're finally taking it seriously, I think in your position I'd be pushing for a tier 4 bed as previous attempts to turn this around at home haven't worked. I know got lots of kids they need admission to a specialist unit to start them on the road to recovery.

My dd is talking about going travelling which is making me feel very anxious. Although she's generally in a good place she's not 100% recovered and any weight loss would be a set back. That said I want her to go out and explore the world but every time she mentions it I feel sick 🙈

Some of that I think is normal struggling with dd growing up angst, it's hard one way or the other.

My dd is an athlete too, the mere threat of stopping her sport seemed to make her eat something. We used to make her have a protein drink before and she would have to have an extra snack. You have to be willing to follow through, so if she doesn't then she doesn't go. Quite simply if she's not eating enough then doing sport is dangerous. Chams will balance out her mental health and her physical health and may say she has to stop if the balance is tipped. My dd was allowed to go provided she did the above, if not then no. To be frank her performance suffered anyway she was too tired and drained to be at peak but it kept her from being depressed.