Support thread 9 (!) for parents of young people with an eating disorder

[Girliefriendlikespuppies]

Thought I better start a new thread, can't believe we're on to thread 9 😳

Hope all the regulars find it!

@Proseccoismyfriend -You can get high cal drinks (Fortisip, Ensure or Boost) on prescription. Or buy from the chemist/Amazon. They are about 300 cals for 250mls so quite small, and might be easier for him to manage.

Just had a call from the ward. DD has covid! She's been isolated in her room for 5 days. She's so upset (feels fine apart from a slight headache). I feel fingers pointing at me...I've been feeling under the weather this week but had 2 negative lateral flow tests so did still visit. Just assumed I was a bit run down. Gutted.

Oh no granny. How long is she isolated for? Do they get routinely tested or just if they have symptoms? Loads of people get covid and have no symptoms at all so there's a good chance it wasn't you at all. It's horrible for her but good she's not feeling too ill.

@BagpussSaggyOldClothCat she's to isolate for 5 days from today. They tested her due to a slight temperature along with her headache. You're right it may not have been me. I actually don't know how I would have caught it as I work from home and only ever go to and from school (on foot) and the hospital (by car) these days. But I feel the ward staff have me down as prime suspect. It's a massive faff for them having to gown and mask up etc and I feel so bad for DD being stuck in her room.

Oh no granny, hope the 5 days pass quickly and her symptoms will remain mild. How is she getting on otherwise?

@Curlyhairedassasin she's up and down. We had a few rocky days when she first started the Sertraline where she was really agitated. This seems to have settled down and she's been a bit brighter the past week. Her weight gain has been slower than hoped, between 200 -500g per week (one week 700g but that was a while ago) so the meal plan has been increased. She's currently fighting /negotiating against the addition of a small after dinner yoghurt. She's only just scraped past 80% wfh and at current rates is probably another month at least away from a home pass which is what she's desperate for more than anything. I don't think she's mentally made any progress although perhaps the anxiety is slightly less, hard to say.
How are things with you?

@GrannyRoberts We are on 'holiday' right now and DD is restricting more again but managed most of the mealplan but weight is dropping ATM. overall, she restored weight quite a bit bit mentally, we are just moving forward. Its frustrating. I tried to add a small yoghurt on holiday as she is losing weight and lost that battle this week too.

@Curlyhairedassasin that sounds so stressful. I'm sorry your DD is losing weight despite managing most of the mealplan. The mental side is so difficult to understand and so frustrating as a parernt to try to negotiate it all. My DD refuses to discuss any of what's going on. It seems such a fight for every extra bit of food. I feel as though every day my DD refuses the yoghurt or whatever else they've added is a day more added onto her stay in hospital. I want to shake her sometimes when she's on about getting out of her wheelchair or getting a home pass and say "that is literally the point of your mealplan, you have to eat the bloody yoghurt in order to get these things!". Obviously I wouldn't but inside I'm screaming it.

@Curlyhairedassasin I do hope your holiday has offered at least some respite. I can imagine it's not been easy to navigate but are you getting at least some time /headspace to yourself? We have to make a decision in the next few weeks on whether to cancel, postpone or plough ahead with our "once in a lifetime" holiday which is booked for late December. It was supposed to be a surprise for the kids and is something my husband has been saving and planning for over 10 years. No idea what to do about it now.

@GrannyRoberts - I am staying with family abroad but have some help. I am in sole charge of the kids but no cooking, cleaning, washing etc. I have had a little breather and it was a good break from the daily rat race.

Sounds like your holiday is a big (and expensive) one. Knowing what I know now, I would call that probably off/postpone if possible without financial penalty. Our holiday was dirt cheap (I only paid for Ryanair and I am staying in a family home). We really wouldn't have coped in a hotel where we have to eat out. If anything, DDs anxiety around food became a lot worse here as the food is not what we have back home. Dec is not far. I wouldn't risk it esp if you saved for so long. Also, we couldn't get travel cover for AN. Not sure if I didn't search long enough but as we are in Europe and have the Ghic, I took the plunge. Worse case plan for us was to fly home sooner with Ryanair.

@Curlyhairedassasin glad you've had a bit of a breather even if not totally relaxing....I agree I don't think DD would manage this holiday in December. At this rate she may still be in hospital. We'd thought about whether DH should just go with DS and we lose the deposit for me and DD. Or we postpone until next summer and hope she's up to it by then. Seems so trivial to be thinking about holidays at the moment but this is a real dream of DH and I'm just so sad for him that this illness is taking this away after a decade of planning and saving.

Sorry about your holiday Granny. We had to make the difficult decision to cancel a holiday last year. Maybe dh and ds could still go with a plan for you to all go again when dd is well.

That's a really tough one @NanFlanders. It's great that she feels she wants to come with you, but from what you've said it would probably be way too soon and is unlikely to go well. DS needs some time out by the sounds of it. I'm sure you do too. If you can manage it, I wonder whether DD could be talked around with the promise of a short break (somewhere of her choosing?) later on in the year, and to adjust her home leave plan so that she's not at home for all of October half term (unless her and DH are happy to manage it alone). It's so difficult to do right by everyone, I really feel for you.

@NanFlanders sounds like your Ds has been through a lot emotionally too. I think I would be tempted to take him if you think DH can handle the home front with DD. Would this maybe an opportunity for DD and DH to reconnect? I think it's important not to let our DC guilt trip us into cancelling things. DD tried this twice when I had to be away with my other DD. As an alternative, could the home leave be postponed by a week? Does it have to coincide with half term?

@NanFlanders I would prioritise your DS here. Speak to hospital and explain? Ask them to find a 'reason' to move the release back?
Siblings have such a raw deal in all this, the illness takes so much from them too.
And I agree def do not take her along. That is the ED highjacking yet another thing of DSs

Nan Absolutely too risky to take dd abroad right now and I agree your DS needs to come first. Lottsbiffandsmudge idea of pushing back her coming home sounds like a good idea.

Yes I think your ds needs you. My ds coped incredibly well when dd was poorly but I still felt hugely guilty. He's just done his GCSEs but can't imagine him having to sit them when dd was at her worst point.
Surely DDs home dates are flexible?

So sorry to hear that Nan. They’re not kidding when they call it a family illness. All I can say is that being home alone with DD while rest of family go on holiday is not great. Maybe missing out would give her the motivation to get better - but if she is not thinking rationally through depression etc then it could backfire and will be a huge strain on DH particularly if there is any chance she might abscond again. And delaying gratification with the promise of a holiday with her later in the year will not work if she is not thinking rationally. Is there somewhere that she and DH could go for their own holiday where you know she would definitely eat.
i’m sure you know this but GCSEs really won’t matter in the long run. As long as he gets to do the A levels he wants and can keep moving forward with his chosen subjects then that is all that matters for now.
I hope you find an acceptable solution for half term as this journey is heart achingly hard for everyone X

Nan is there anyway if you taking your Ds away out of term time while your dd is still in the unit? It's really an impossible situation and will cause heart ache which ever way round you do it.

Taking your dd a way would be madness imo as she is so unwell. Even the home leave must be risky with her history of running away.

Prosecco agree with the others that your dd sounds really very ill and I don't think that sounds like arfid tbh, more like classic anorexia. There can be an overlap so it might be that your ds started off as food avoidant but has now tipped into anorexia due to the weight loss. At 800 cals a day he is getting around a third of what he needs to gain weight so you have a lot of work to do in terms of increasing his food intake. The good news is he is very young and therefore it's generally easier to take control and get things back on track.

Food has to be non negotiable, if he liked chocolate previously put it on the meal plan and insist it is eaten. Once anorexia takes hold previously loved foods become a source of anxiety and the only way past that is frequently exposing them to that food and making them eat it again and again.

Curly I'm sorry your holiday was so stressful.

Bagpuss I think I'd keep working on getting your dd to eat outside the house. Lots of cafe trips and picnics etc.

A lot of conversations on here are making me feel v 'been there, done that, wearing that t-shirt right now'
Taking other DD away for a few days this week after our attempts at a family holiday earlier this year left all of us w a sense of PTSD rather than relaxation.
Our guilt is massive about going but DD's AN takes centre stage 24/7 and right now her poor sister needs some proper TLC. My niggling feeling is she is only coping w all this because there is no space for her not to. If she did actually let out all out all her pain DH and I would probably be having full blown breakdowns instead of just hovering on the edges. DH and I are mentally prepared for the ED using my absence to gain some ground again but we think this is what our family needs right now. I will report back so you can hear another perspective on taking trips w siblings.

@NanFlanders I think you absolutely should prioritise your holiday with DS. My other daughter got a raw deal with her siblings ED. It seemed at everyone of her milestones - i.e. GCSEs, Prom, A levels, there was an emergency with ill daughter. I felt sorry for her, so stressful and scary for the non ill siblings. I managed to book us a 5 day break in France whilst my ill DD was still in hospital. I explained that there would be no visits or home leave, she was upset but just stuck with it. If you can delay discharge a bit I would. Would your DH be able to manage home leave on his own? Important for you and your DS to have a break if you can

I totally agree w @Bluebuddha10
This is a long haul illness for us and we have tried waiting for that perfect time that never comes. All our lives have shrunk along side DD's... i take the view we sometimes to push back

Thanks all. To my huge relief, after being upset the other day, DD actually took the news about not being able to go to Rome really well, and just said she'd put her home leave back a week - she was on a bit of a high because her consultant had told her again about a lower target so as not to distress her. We'll be pushing back on that! @GrannyRoberts -Hope your DD not suffering too much with the COVID. @ReineDeSaba Hope your holiday with other DD goes really well. And @Curlyhairedassasin - hope you are managing to have a good break despite everything.

Oh @NanFlanders that's a relief! Been thinking of you a lot. DD is fine, just annoyed at having to isolate and nobody on the ward seems to know the current isolation guidelines so she's no idea when she will be released.