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

thanks bagpuss, DH is pretty much on board now. Took a while but we got there.

Struggling more with work. 8 days in hospital and I have yet to be able to speak to my line manager. No call, no support, no offer of help. I do wonder if the expectation is that I will work through this from the ward and do catch up in the evening at home. I really don't really know but it's incredibly stressful.

How do people usually manage longer inpatient stays where you have to provide meal support for all meals in combination with work commitments? I must be missing a trick.

Hello all, my partner's daughter is a couple of weeks out of her second hospitalisation. At her first post hospital check up yesterday they offered her ITP at the Maudsley but she just refused. She was there briefly a few months ago but did not engage so they said there was no point. Does anyone have any pointers in how to help bring her round to accepting therapy? She will be 18 in the autumn and then considered an adult so her parents are keen to try as much as they can before then. Or do we just have to wait it out?

Spring, no wise words but I know with DC it finally just clicked with the right person.
Curly, my boss is very supportive but only because his daughter also has ED so knows what it involves. Good for me but also so sad

Spring, I wish I knew the answer as my dd17 is the same. It's frustrating but they really have to want therapy for it to be of any real benefit.

In the meantime I've bought her some self help books and I direct her to things online that are helpful.. and just keep her eating well.

@SpringCalling Another one keen to get the answer to this. My DD did do well on meds, but now refuses to take them - I think the ED stops her doing it, because they made it easier for her to eat.

@Curlyhairedassasin - You are entitled to unpaid leave to care for dependents, but there aren't many people in a position to take advantage of this. I was signed off for 4 months with 'family-related stress' - but I was really lucky that I got sick pay (civil servant) for this. After that, I worked from the ward, but again, it was difficult as DD would become angry that I wasn't distracting her after meals etc. It's nowhere near enough, but make sure you are getting everything you are entitled to in terms of DLA (if DD under 16) or PIP (if over), in case you or your partner do have to go part-time.

@NanFlanders
Thank you. Unpaid leave is not really and option and sick leave it's statutory sick pay. I think I will just try to carry on for now and leave sick leave as a last resort.

I have already ordered the DLA form. Just need to work through it now.

On the upside, DD is eating the mealplan now. Just some minor hiccups. If she keeps it up, we may be out of here sooner rather than in a long while. Things are a lot better than a week ago. The whole team is really pleased with progress. I just hope we can keep it up.

I hope your DD is doing ok and that you are managing some small steps into the right direction too.

Just popping in to say thank you. I asked for advice about my 11 yr old with restricted eating a couple of months ago. You made me put my foot down and take charge of the situation. He's doing much better now, he tells me he's learnt to ignore the voice in his head telling him not to eat, but the underlying thoughts are still there. We still need to prepare and observe meals, but the level of resistance is much much reduced and he's opening up to me. Still waiting for first counseling appt. I suspect that without your advice he would have slipped downhill by now.

I also did the Triple P fear less online course to help me deal with his underlying anxiety. This has also been massively useful for me to realise that some of my responses probably weren't helping.

I know we've still got a way to go and things could still turn round during stressful times, but i feel much more confident to manage this now.

Thank you all who responded to me back then.

@curlykate99 where did you do the triple P course? Sounds like something I could do with as well.

Online @Curlyhairedassasin
It's paid, I'm not sure if there are free/cheaper equivalents, but i had already heard of triple P via work for general parenting skills and it has a good evidence base

How's everyone doing?

Curly is your dd still an inpatient? I hate to say it but working will be even harder once she's home (sorry). I personally don't think it's possible to work and feed them in the early days, it's the equivalent to having a newborn baby. I appreciate I'm lucky that I had a supportive boss and was able to take sick pay.

We're back from London, dd generally did okay, I obviously would have liked to see her eat a bit more and we did have a row in Camden market about a piece of cake 🙈 buuuuuut she did eat okay. She told me she was hungry a few times which I always appreciate and did then eat something. Overall we had a brilliant time and fitted lots on, we saw the Abba show Voyage one night which absolutely blew our minds! It's so good and dd loved it.

Hope everyone else is surviving half term.

Hi all. DD has made some progress this week - she managed a 'supervised' (HCA, DD and me on Facetime) and 'unsupervised' (DD with me on Facetime) snacks, so was allowed to do a snack out. That was a lot more difficult - 2 hours of sobbing refusal - in the end I called the Unit who suggested swapping the snack for a less challenging snack on the meal plan, and having the cereal bar she should have had in the Unit later in the week - which I thought was a reasonable compromise as it got her over the hurdle of eating away from the Unit. Supervised breakfast via FT with me today (loooonnnnngggg and tetchy, but got there in the end). Tomorrow I am taking AL to go to the Unit and eat lunch with her - if she can do that, then she will be able to go to the Coldplay concert on Saturday with her mate, so 🤞🤞🤞. It is the ONLY thing she has shown any interest in other than food/calories and I think it would be great for her to have some teenage life and reconnect with a non-ED friend.

@NanFlanders Coldplay sounds great - a taste of the normal life that we crave our DC return to.

@Girliefriendlikespuppies glad that you enjoyed London. Hope the cake incident didn't sour the day.

DD did OK over the weekend, out with friends on Sunday and ate little lunch with them, but ate all her Sunday dinner and two helpings of dessert - never know if it is the good 'mood' of socialising or maybe she was simply hungry that prompts her eating - I'm exhausted second guessing her.

Yep D1 I know that feeling of second guessing, it is exhausting. I suspect dd is hungry a lot more than I realise and only admits to it when she has to. We also fell out over a bag of crisps 🙈 I took her into Boots to get a meal deal for lunch, she picked a sandwich (not helped by Boots sticking the bloody calories in big letters all over the packaging 🙄) a bag of hula hoops and some yogurt raisins which was okay.

When we got outside I realised she'd swapped the hula hoops for skips as these as less calories, ffs.

It's the sneakiness that winds me up.

Then Ystd she told me she wanted an ice cream, I said yes of course, I could see her wavering over which one and I said pick the one you want and she did!! It was an internal happy dance moment.

Nan that sounds like progress, I really hope your dd gets to the concert bless her.

@Girliefriendlikespuppies the second guessing is wearing me out - DD is waking up later due to half term and having 'brunch' - which is probably the equivalent of her normal lunch. We no longer weigh whereas if the drops in calories lead to drops in weight we won't pick this up monthly as we used to do.

She has a sweet tooth that will pack in the calories - it is the lack of 'trust' of the ED that I struggle with - is she eating as normal or is the voice limiting her choices. DH says I need to move on, but the PTSD of the refeeding stage means I am stuck at 'every mouthful counts'. She was around 108% wfh when discharged in January and she is eating all food groups now after restricting dairy and limiting carbs.

She always wears baggy clothes so weight loss would not be noticeable immediately. I'm dreading the summer holidays when she will be in control of her food, what do others do during the holidays when DC are at home and you are at work?

Hi , looking for some advice here. My daughter is 11 , for the past 8 weeks has only been eating the bare minimum. I only noticed three weeks ago when she was coming home with no lunch eaten. Upon checking her phone realised it’s been goi on since start of term she’s been looking up calories for everything she eats even water. She read you lose weight if you scratch yourself! She is refusing to eat a lot of foods she used to love as she thinks they are fatty. She is sporty and needs to eat more than normal so it’s very concerning. she will eat plain pasta as she knows she needs this for her running. she refuses takeaways when we have them and is eating some lunch now but it will be half a brown sandwich and an apple. I am waiting for dr to call me back today. Hoping just a phase but it seems to be obsession now to look up what’s in food
she also seems very unhappy I can see she’s lost weight she was slim anyway being a runner. Went swimming on holiday she looked so sad and wanted to get out after ten mins thinking ppl are looking at her. This was triggered by a girl at school calling her fat , spoke to school and girl moved away and they know the situation with her not eating lunch. Just want to know if there’s a chance If dr can get her to talk to someone that this can get better ? I’m reading about hospitals and it’s quite scary. I’m hoping early intervention will help but I’m scared.

@Whippetlovely This does sound very worrying, and things can go downhill very quickly, so great that you are on it now. Whether she is underweight or not, I would start family-based therapy immediately: three meals and three snacks a day (portioned appropriately for maintenance or gain, if underweight), to re-establish the habit of eating, before the neural pathways associating food with fear become entrenched. You can get good advice here and on the EDS-UK Facebook page where there are lots of pinned resources. Also look on the BEAT website. Ask the Doc to refer you to your community Eating Disorders team - you shoudn't wait more than 4 weeks for an appointment.

Whippet you need to get an urgent GP appointment, check in your area if you can self refer to the local Camhs Eating Disorder service.

It sounds like your dd is already in the grips of anorexia and this can escalate to a medical emergency in a very short space of time.

The treatment for anorexia is FBT (family based treatment) this means the family take full control of all meals and food preparation, you make and give your dd 3 (high calorie) meals and snacks a day and she has to eat them. Life stops until she eats.

I'm sorry to scare you but you have to act on this immediately, her heart and vital organs could already really be struggling.

If she's been eating less than 500 cals a day for more than 3 days take her to a&e and insist they do a full medical check on her. This should include bloods, an ecg, bp and pulse.

D1 I used to plate up dds breakfast and lunch when I left her to go to work, I had to trust she'd eat it in the same way I did when giving her a packed lunch for school/college.

@Whippetlovely I echo both responses - act quickly, in general GP's don't know much about Eating Disorders so you need to push - we were fobbed off for months by the GP and my daughter ended up in hospital with a low heart rate. Early intervention leads to better recovery.

@Girliefriendlikespuppies thank you for the guidance re breakfasts and lunch. College in September and another lunchtime challenge - DD has monitored meals at school, college lunches will be a big shift in trust.

D1 fwiw I wouldn't be happy with the brunch scenario, that's how dd started with the ED, she cut out breakfast and said she was having 'brunch' 🙄 in reality it was just a way of restricting.

I insist on dd having three separate meals every day even if she gets up late and breakfast and lunch are close together.

@Whippetlovely sorry you find yourself here and I am not surprised you are worried.
Early intervention is the key. Your dd is v young and that helps. Gp should refer you to your local ED service and do checks (BP, heart rate on sitting and then standing, do or order bloods and do or order an ECG) but in the meantime I echo what everyone else has said.
Sit her down and explain that you are worried, have taken advice and that she needs to now eat what you provide. Explain that you undersarnd it will be tough and make her scared but that you are there to support and that know what is best for her. Hoping it's half term there so an ideal time to start.
All meals and snacks need to be supervised and with compassion but firmness all food needs eating.
It helped my DD to have a weeks meal and snack plan written down so she could see what was coming. I'd start with things she used to eat (so up the plain pasta by adding sauce with meat).
You can turn this round but the sooner the better.

Welcome Whippit. You're in the right place for advice.

Girliefriendlikespuppies, I'm glad you had a good weekend and it sounds like the good bits far outweighed the difficult bits!

NanFlanders, Coldplay are brilliant and inspirational! I hope your dd has a wonderful time 'teenagering' with her friend. Friends play a huge part in recovery and a good one is worth their weight in gold!

D1ANA22 I get the exhaustion. It's like our brains are constantly trying to be one step ahead of them, constantly switched on to what they're choosing and eating.

Things much the same here. I find the long weekends stressful as dh is hanging around me and he keeps going on about his friends & family going on holidays, weekends away, days out etc and we can't do that. I wish he'd just stop complaining and plan something for himself but he says it's sad going alone. I think he's mad as I'd LOVE a trip somewhere by myself. I'd pack my bag in 10 minutes and be out the door! It just feels like another responsibility on me keeping dh feeling positive.

@Girliefriendlikespuppies they were my thoughts. It does feel as though we are back sliding during the anxiety of exam season and missing the routine of school. DH allows DD to stay in bed in the morning to rest - but IMO she is not up late enough for it to be lunch (brunch) time.

Thanks @BagpussSaggyOldClothCat for the 'exhausting' empathy. When not at work my DH won't leave the family home, I think by being here he considers that he protecting us. I'm now a SAHM and it is mundane having our lives rotate around AN and the house - I have told him to go away on his own - meet up with friends but he feels guilty and I think he is depressed (his sleep is interrupted as well). How to convince him I can cope without him is difficult, he does a lot at home but what do others do to give each parent a break?

D1ANA22, I feel pressure to be happy and lighthearted when dh is around because he works so hard for us and his job is really stressful and I'm conscious of how much he misses the closeness he used to have with dd. Us women are just hardwired to keep everyone happy aren't we? It just adds to the exhaustion.

I always say I'd love for him to take time and do things for himself and it would be good for dd to see him do that too. He just says he won't go anywhere without us. He talks about the holidays we used to have and can't get his head around the fact that those days are gone now and if/when dd does recover she'll be an adult, not a little girl anymore and she will probably want to go on holidays with her friends.

We thought we'd have more time with dd as a teen. We had so many plans. ED has stolen that.

@BagpussSaggyOldClothCat that resonates with our family, DH won't go anywhere without us - I send him out with our younger DS but I know DH mind is on DD and DS says dad is no fun out on his own.

DD is 16 and doesn't want to go on holiday with us 'ever again' and I get that, DH looks back at previous holidays but doesn't appreciate that DD is now a teenager. We had a big family holiday planned when lockdown was lifted but the ED saw that off.

DS is missing out, his dad is depressed and holidays are not possible, we are saving DD's life and hope one day she will come back to us, I do miss her and hate myself for the resentment I sometimes feel.