Support thread (8)for parents of young people with an eating disorder

[myrtleWilson]

Welcome to anyone who is a parent/carer of a young person who has (or suspects may have) an eating disorder.

We're experts by experience and will share our insight - but obviously we're not medically endorsed, we celebrate all our small wins and provide a space for relief from the intensity of supporting a young person whether pre teen, teen or young adult with any eating disorder

Good luck nan, will be thinking of you.

Hi lovely Mumsnet friends. Result! The multi-agency meeting completely knocked back the CTO, and early discharge! On reflection they also didn't think the slower weight gain was a goer. Everyone thinks meds are a great idea, but she won't be given them against her will - unless she is having an NG feed under restraint, when they will be given to reduce her distress. She has asked to change her meal support person, which has been granted, so hopefully she'll feel listened to. Thank you, thank you, thank you for all the advice! (I think DH and I came up with a Power Email in the end!)

Oh Nan! Am so pleased - you must feel like a cloud has been lifted and hopefully you can all regroup on recovery and DD feels agency to help her in this.... am delighted for you all....

What a relief, Nan. Sending you all love ❤️

So glad they saw sense. you must be so relieved, nan.

Oh nan so pleased to hear this. Thank goodness sense has prevailed.

Nan, lurking in the background. So pleased at that outcome.

Nan, so pleased to hear this, you must be so relieved!!

(sorry lurking in the background too, had no advice to offer but been thinking of you)

Hello I’m just wondering on your experiences with work and dealing with this. So far I’ve been collecting at lunchtime and taking back to school after. I was hoping she would be ok to eat in the sen office away from others but she’s said she will not eat at school. This is where someone called her far so I imagine it’s a trigger to eat there. I work school hours so far work been good I’ve been able to work til lunch and then finish work at home to make hours up I’ve gone in on my day off or worked later in evening when dad home. But no one else works from home my manager has said it can’t happen indefinitely but they are supportive at the moment. I know she didn’t mean it in a bad way but I’m getting anxious now. How do I explain that she needs me to carry on with lunch at home at the moment probably til end of term. I work TTO so school holidays will be fine. I don’t want to loose my job, I’ve only been there since sept not had a day sick or any issues. I’m hoping when she starts secondary she will be able to have lunch at school because if I have to pick her up I will probably have to leave my job.

@NanFlanders so glad for you - it must be a relief.

@Whippet - I have been meeting my DD in the car park every day since the beg of Oct. 😞 I am adamant it won't happen in Sept - but no idea whether we'll get there or not. My whole lunch break is driving there, being ignored, possibly fighting, then driving home. But I know that staying in the car park is the best option - if we came home she'd try to negotiate what she could eat. When we're there, it's tough. She has to have what I bring.

@Whippetlovely

Have you spoken to school to see what kind of support they can offer so you don't have to go in? Would work let you carry on with the current arrangement until they break up for the summer. This would buy you some time.

DD had to stop school about 5 weeks ago as she is too ill. She needs meal support at home every 2h, and then load of distraction afters, checking on her she isn't exercising etc. It's full on all day. Work let me work from home in the last weeks (which is heard enough with all the meal support) but they expect that I come back at least some of the days in the next few weeks. No idea how to do that either with DD being out of school. I think I will probably be dismissed if we cannot get DD back to school soon. The ED clinic and hospital doctors (when DD was an inpatient and needed us to be around for meal support) suggested getting signed off with stress but I am on statutory sick pay so could not afford that. Not sure if that is may a short term solution for you?

@Curlyhairedassasin its so stressful to think you could lose your job over this. I don’t think workplaces understand EDs and how they take over peoples whole life and thoughts. @SwattyPie i am not entitled to a lunch break as I work school hours if I was it would be easier as I wouldn’t have to make the time up. Her school have said they are willing for her to sit in the SEN room away from others but she’s adamant she won’t do this. I’m hoping next week after the appointment there might be some answers but I think it will be harder because they will put a meal plan in place I imagine and that’s going to cause her a meltdown. I will have to speak to work and see what they say about this and hope they are understanding as it’s not an issue that’s going to go away in two weeks and back to normal

@SwattyPie thats got me a bit nervous now, she starts secondary in September, I wouldn’t be able to drive there and back again as it’s much further from my work it is probably have to make up 90mins a day somehow and then the working at home issue is that I work in a school (non teaching) but it’s expected that you are at school not at home. Ow lord is a lot to think about . I guess with this you take a day at a time and deal with these issues as they come up or you’d be a nervous wreck. I can’t really believe this is happening everything was perfectly fine three months ago 🥺😭

@Whippetlovely I think you are so right. Take each day as it comes..you have the summer to get as much food in her as possible..
Depending on her weight she might have to stop school following your appointment anyway (is it on Friday?). In which case I think you'd have to stop work or time share working with your partner. But in reality it's mums who usually do the heavy lifting with this.
I think you said she was eating 1800 cals a day. That will have to go up and yes she will hate it and kick back so managing with work too is so hard. I was trying to wfh and I was pt anyway but even that was almost impossible.
She is so young that if you really push food in and take the pain that will bring you have a good chance of good weight gain by Sept. Recovery is incremental and improvements do happen before full WR.
But it will mean a drastic increase in cals.

@Lottsbiffandsmudge thank you , it would all come down to me as my partner is self employed he is the main breadwinner so it wouldn’t make sense for him to leave work. He is very good with her when he’s home and she does seem to listen to him more than me! It sounds like I’m being selfish but I’ve finally got a job which I like and I don’t want to lose it but she will have to come first. I’ll just do that, take it a day at a time and I do have all 6 weeks of summer to try and make headway with this. Think I may need family to help with my little son as he will still need to go out and have a life I don’t really want him knowing what’s going on and be trapped indoors he’s only little. How did you cope with giving attention to siblings and not letting this take over their lives aswell?

That was v hard tbh..my DS's are older than DD (year 11 and 12) and they knew what was going on and saw and felt the impact. (DS2 had to talk her down from a window ledge and DS1 had to call my mum when i totally lost it when DD smashed my oven up)
I couldn't spend much time with them and they retreated to bedrooms (locked down so couldn't go to friends etc).
In the out turn it hasn't damaged our relationships. Nor theirs with their sister.
My mum once said to me (when DS2 was a baby and we spent a fair amount of time in hospital with him and I felt I had abandoned DS1) that sometimes one child just needs you more than the other and that's OK. It will even out over a life time.
How old is your DS? I think perhaps he will need to know something appropriate to his age as kids can pick up on stuff we don't think they are. Beat have some resources for siblings I think.
It's important siblings understand its the illness not their sibling acting up.

He is 5

@Whippetlovely sorry - I didn't mean to worry you. I think starting secondary school is a good opportunity to set new boundaries etc. Our school were and still are v supportive and would supervise DD at lunchtime, but because I started in the car park, it's harder for her to switch now. I wish I'd taken them up on the offer on day 1, as it would have been easier moving forward. I would talk to the school beforehand, and set it up as a done deal to your DD. Once she's done it once, it will be a lot less scary for her.

@Whippetlovely
Our secondary is very supportive. DD was previously eating in the SEN room (but binning her lunch box for weeks in plain sight - no idea what school was thinking in not telling us). But they offered to create a rota in the staff room to ensure 1:1 meal supervision when she is back. It is definitely worth having that conversation if you need that support.

@Whippetlovely You said (I think) things were fine 3 months ago, so well done you on acting so fast. The sooner you can achieve weight gain, the better the chances of recovery, so I'd focus on getting in as much as possible between now and September - The odds really are in your favour at the moment. You also said you would have to rely on family members to help with your younger son, so I'm assuming you have support nearby. Is there any chance of them doing some meal supervision? Also, if your DH is self-employed, then presumably he can be pretty flexible with his hours - could he do some of the meal supervision during your working hours and work a bit later in the evening? I was off work for 4 months with stress (civil servant so very fortunate that I got paid) to refeed, and it wasn't great for my mental health.

Struggling to cope with the summer holidays, work and DD eating as I leave the house at 8am back at 6:15 pm - breakfast I supervise before school, DD is supervised lunch at school and we have dinner together in the evening.

The lunchtimes during the long summer holiday I am most concerned about - school meals are substantial and I will have to trust DD to eat and also to eat enough over summer when she is using more calories with activities (she is 16 and plans to go out with her friends a lot as well). She is discharged from ED services and not weighed anymore - I am concerned that she will backslide over the next few months after being WR for nearly a year and I won't notice until she is on a downward spiral - last summer I was signed off so could supervise.

With the worry I'm also finding it hard to concentrate on my work and complete tasks - made a few mistakes. How do you cope with dealing with the ED and your work in the midst of the intensity of caring.

Has anyone had an successful DLA claim for anorexia? I am thinking of putting one in but dreading the form and wondering if it is worth it at all. If it goes like that, there is no way I can keep working - I am really cracking under the stress of 2 children with such intense care needs but I don't have the financial means to just resign. DD1 has severe learning difficulties and will need lifelong 24/7 care. We were only awarded after a 12 months battle and tribunal application so I wonder if it's actually worth putting in for DD2 at all or if it is just a waste of time.

@Curlyhairedassasin We had PIP (like DLA but for people over 16) awarded first time. Supported by an excellent letter from DD's team.

Thanks nan that is encouraging though criteria for DLA are a bit different. I may give it a go!

Curly, your situation is what benefits are there for so you should apply,
but I've read it can be quite a draining experience so have a good read up on what it entails so you're prepared. I often see discussions on applying for benefits in the 'Parenting Mental Health' facebook group so that's worth a look.

I keep meaning to apply for PIP for my dd as she is 17 but keep putting it off. I think I'm living in cloud cookoo land hoping she will just suddenly get better.