Support thread 11 for parents of young people with an eating disorder

[GrannyRoberts]

Hi all, here is our new thread. I will attempt to post a link on thread 10.

Summer Ask school to send work home and ask what happens if she can't attend at all in the near future. In my area there's online schooling provided by the council for those who can't attend school. It was timetabled live lessons just like school so it gave dd a structure to her day and she even had tutor time and assembly. Ask if that's available.

If your dd ends up needing an ED unit she'll get her schooling there.

On the call today ask about a unit place as it certainly sounds as if she needs it.

@summertimesadness24 DD was unable to attend school for most of the summer term last year. Her school sorted her access to online lessons. Not all schools do it but worth a try.

@summertimessadness24 services always talk about early intervention being best. Hopefully you will get help today because the last thing anyone wants is for your DD to become more unwell physically. It can be a very long road to recovery but if you can get a meal plan established it will give you some peace of mind but you will need help with this. Older DC here but we needed day treatment and the input of a psychiatrist, therapist and dietitian. Some areas have a team that will visit your home and help with mealtimes. Your DD would be kept out of the kitchen and they would assist you in preparing a meal and assist her with eating. Good luck today

Yes we did 8 days in hospital, child ward for obs and bloods - refused to eat for there for 4 days, started eating Sunday, discharged Monday
Tuesday eat at home
Been refusing since Wednesday

Yes I'll ask about schooling
She can do online so she should get support

I'll also ask about a unit x

Thank you this is helpful x

Any ideas on how I tackle work?

So I only work 3 days a week but it can't be from at home

I've used a bit of annual leave and a bit of unpaid but can't really keep that up

So thinking either asking for half days, working from home as unusual circumstances or she can come in my office
What has anyone else done in this situation?

Or get signed off ? Want this to be last resort but will obviously do anything that helps her

She just tells me she can't eat and voices do not eat are loud

@summertimessadness24 I WFH fully when DD was out of school but my job can be done from home. However, the team asked me several times to consider getting signed off (I had a lot of issue going on at work and financial pressures so this was not an option) but from reading on here, a lot of parents get singed off with stress. I would really consider it. I didn't and ran myself into the ground.

Have you checked our unpaid parental leave? Will dig out the link. Is there around to share the load? A DH of wider family support?

https://www.gov.uk/parental-leave

I used that for a few weeks over the Summer too.

Yes have very supportive DH but he's just started a new job
I have my mum and mil who could potentially sit with her
But I find they don't really ' get it ' they are both late 70's and just really set in their ways
My mum is saying things like ' just eat ' and my other mil is too fragile ( in my opinion ) so not sure they are the best support for her?
Have family members but no one can that offer support - just us really x

It is such a lot to manage @summertimesadness24 I know it causes all sorts of issues taking time off work but you are stretched v thin and difficult if you haven't got someone to step in who has all the learning of how to manage meal times, emotions etc. If you can negotiate a break work will be one less thing to juggle.

Great that your DH is on board summer - can you create a rota - he does the dinner/supper/more weekend support so you get a break and share the load a bit. Doesn't sound like your mum or mil would be well equipped to deal with it.

Also Summer whoever helps you needs psycho education* *on eating disorders. You and DH should also do a workshop if you haven’t already done one. You’ll still lose your cool because you are only human but you will find it easier to come back from it and it really does provide so many skills to separate the ED from you DD.

My husband leaves for 5am and is back around 5/6pm so I do nursery runs and collections, housework, dinner and we sometimes all eat together but sometimes at 7pm when baby goes to bed.

When hubby gets in we usually eat straight away - we always joke that dinner is on the table !!! But it's not like that then he takes baby for bath and does her bedtime unless he's late then I do that.
Then I do the washing up and lunches for next day.

Then 7pm it's either dinner if we haven't eat or a glass of wine and TV/film

I get all my housework done in the day and keep on top of it so 7-9/10pm is our time

Sometimes he can go in for 9am at least once a week then he gets up with baby and I have a snooze until 8ish and some times he can be back for 5pm and collects baby from
Nursery but that's usually once a week but this works

Then the weekend we both get a lay in and usually spend most the weekend together so I feel it's balanced as much as it can be

I'm off 2 days a week and baby still naps 2 hours ish a day x

We have a course we are starting next month so that will really help x

Has anyone claimed DSA for their YP. DD hoping to go to uni next year. Still under treatment currently (including recent drop in weight) but I guess will be discharged pre uni.How does it work? Also what have people been able to put it place for support e.g GP while child at uni, thanks.

Reine we tried to see our DC every 3 weeks, either by visiting or they would come home. You may need to keep a closer eye around exam times when stress can also lead to weight loss. Likewise, if there are any friend issues or relationship break-ups.
It didn’t happen for us but for some it can be a real game changer and the motivation needed to put the ED firmly in the past.
It is important not to make every conversation you have with her about food even though that will be your primary concern. Advice is to set a time, maybe weekly to discuss recovery.
Regarding going out and partying, some find it helpful to go for pre-drinks and then skip the main event - when everyone is wasted anyway and won’t miss them!
Pre-planning required to fit in all the meals and snacks but they may find going for a pizza with friends becomes easier once at uni.
We stayed with the same GP as uni was only an hour away.
No experience of DSA.
Good luck and congratulations to you DD

ReineDeSaba

We haven't claimed DSA but I claimed PIP for dd which I guess is a similar process to DSA, in that it's awarded on the amount of evidence of dd's illness, how it affects her daily life and what help she needs. I would start gathering as much evidence as you can. For dd's PIP claim I had her camhs assessment, all letters camhs sent to me and the GP, evidence of meds and also wrote a covering letter myself as her carer. You could also ask any professionals she's seen to do a letter. Dd had been discharged by the time I put the claim in but she is not recovered and needs daily support to stay well.

If you haven't already claimed PIP it might be a good thing to do as it would add weight to a DSA claim. Dd has been awarded for 3 years. I desperately hope she'll be a lot better before 3 years but in the mean time it gives her some independence and gives her a sense that what she's going through is recognised as a real illness/disability.

Good luck to your dd for her future x

Thank you so much @Shanghai101 for your comprehensive reply, I v much appreciate it. I've thought of your comment recently,v often, about progress being not fast enough for us and too fast for them...I feel that v much right now at the prospect of her being 'ready for uni' ...we will have to let her attempt it without her being 100 percent there. Did your DD go into catered accommodation initially...is that helpful? Our DD is looking at places much further away from us so that is part of my worry. It does seem to be course preference related rather than to be handy for the ED but of course we have missed DD's ulterior motives and sneaky behaviours in the past. I keep trying to explain it's a big life transition for anyone to navigate (new environment, new relationships etc)and so will have it's challenges but obviously she sees it as another one of mum's boring Ted talks!

Thank you @BagpussSaggyOldClothCat I did start the PIP application and then somehow I never got it finished. I do think it would really help our DD to have her illness validated. She is externally 'fine' to others...I look back at photos of her at start of treatment and it's unbearable...but mentally she has a long way to go yet. It's difficult when she is moving forwards in some senses I.e able to attend school, the odd party for those not living with her to understand her daily struggles and she is not great at pointing this out. School has definitely glossed over the whole thing which infuriates me...I worry for the next child they dismiss. I know that I need to be open to things changing for DD at any point...good and bad.

The topic of University has been mentioned on the thread - I've been lurking for a long time as we push on with recovery, over two and a bit years since DD17 was diagnosed - 10 days in hospital for refeeding and FBT at home, discharged from services in January 2023. DD17 is now at college doing A' levels, has a part time job 8 hours a week and is generally well and eating OK (still leaves food on her plate at dinner time and strangely has a sweet tooth). It's as though she now has strange eating habits - although I am conscious that whilst she eats all foods, there is still some restriction and rules that she follows, for dinner if anything is left it is the carbs, the veg and protein are all eaten.

She is looking to apply to Universities and desperately wants to leave home - our relationship has changed and sadly deteriorated (as a teenager I suspect it was always going to). Some of the Uni's she is looking at are far away - others are within one to two hours driving distance so we could visit regularly.

@ReineDeSaba has raised this prospect and @Shanghai101 provided her experience - it is this experience of others and some practical advice that I am looking for regards to DD17 moving out and experience from those who have gone through the process - and pointing to any resources if there are any out there?

@ReineDeSaba If DD starts uni, she will be over 16 and needs to claim PIP. DLA is for those under 16.
I am just doing Pip for DD1 (autism/learning diffs). There are various sections - one is a about eating and drinking, another about managing treatment. I think it's definitely worth a shot! The form isn't too bad (DLA was far worse and complicated).

@D1ANA22 well done on supporting your DD, sounds like she has come a long way.I have been wondering recently whether ED is more like SA and a very long term recovery made harder by the fact you have to engage with the focus of your issue, unlike drugs where you can try to avoid.
I am hoping that a bit of fending for herself may make my DD appreciative of the support we have provided but probably wishful thinking!

@Curlyhairedassasin thank you I should get on it. I hope things have become a bit more manageable for you with the additional support.

ReineDeSaba

The main two sections dd scored points were Eating and Drinking and Preparing food - as we are still doing FBT most of the time. She scored enough on these two sections for the lower rate of PIP.

She also scored on other sections to bring her up to higher rate.

Managing meds - as I keep everything locked away due to past SH and SI.

Managing money- she's impulsive and if she has too much she spends money on ridiculously expensive beauty products.

Getting dressed- her dysmorphia causes her to sometimes take hours to get ready without me helping her and assuring she looks OK.

Mixing with other people - as she has social anxiety she finds it hard in social situations and needs coaxing and prompting to go out.

She also scored enough to get lower mobility. Following journeys - as she's so anxious she finds it hard to use public transport and either needs someone with her or to be driven around.

It was so hard to start writing about her illness but I found once I started I couldn't stop and I needed extra sheets of paper. It's such a complex illness and affects them in all sorts of ways you don't realise until you have to write it down.

I became dd's appointee (a DWP employee visited my home for 15 mins to appoint me) so I did it all for her and handled her assessment by phone alone. There's no way she would have been able to honest enough about how her illness affects her if she was left to fill out the application herself.