Support thread 10 for parents of young people with an eating disorder

[Lottsbiffandsmudge]

Hi guys
Here is our new thread. I will add a link to it in Thread 9

@Catsback so much of what you write is exactly what we experienced with our daughter. I know it will be hard to find the time and headspace but as soon as you can I really would recommend a carers’ skills workshop. Your ED service may run them or check BEAT, FEAST or the Maudsley. They really are a great source of information on how to deal with situations such as you describe. They’re also a source of support as everybody there knows exactly what you’re going through. It also gives you a really good understanding of the illness and what’s going on in their heads and knowing the inner battle and horror they are experiencing allows you to stay calm and show empathy when what you really want to do is give them a good talking to and tell them not to be so selfish and just eat!

What is key is to stick to the meal plan and I find that the workshops give me the strength to persevere with that. Because our daughter is older than yours it is harder as she has much more independence but the bottom line is the same - she has to eat to restore weight. Our daughter negotiated and resisted and in the end made herself very physically unwell. If they drop meals entirely it becomes really hard to reinstate them. For example if they continue to have dinner as their main meal then it is easier to add calories there and you have to reinstate breakfast and lunch and snacks and build gradually on them-or at least that’s been our experience. Previous posters (thank you all for continuing to advise) show that it can be done and recovery is possible, they just need an awful lot of support. As BEAT says they alone have to do it but they don’t have to do it alone

How has today been @Catsback? I like the Eva musby chapter where she sort of gives a worked example of what to do when they won't eat or leave the table.

Hi, I have not posted for a while - I have been following everyone and hope you are all doing OK. Update - DD is now at sixth form college, through their canteen payment system I can now see what she is buying - this week daily she buys a latte, a fizzy drink and a packet of crips. I thought spending over £6 per day she was buying something more substantial than this until I received the statement. DD is 17, do you have any suggestions how I approach this - we had supervised meal support at school for 18 months - college don't offer this. She has a breakfast, has now stopped mid morning snack, she will eat a snack when she gets home and then eats less of her main dinner as she is 'not hungry' after having her afternoon snack so close to meal time.

My first thoughts were to speak to her, tell her that we are reinstating morning snack and let her know we are monitoring her college purchases and that she is back to 3 meals and 3 snacks. I worry that she may just ditch the snacks and meals in college - how can we tell? - I know the scales don't lie but how do you get a 17 year old to be weighed?

So frustrated, DD was discharged from the ED service in January this year but the ED traits have never gone but were 'controlled' by supervision.

All advice welcome, thank you.

Nomore This is a great question and unfortunately I don’t know the answer. I used to bring lunch to the college car park and my daughter would eat in the car. Family therapy would tell us that we needed to build trust but unfortunately that trust was abused, as you would expect from somebody with an ED. When I asked the Therapist what I was meant to do if she didn’t eat she would just look at me sympathetically. Basically, I think she was suggesting that there was nothing I could do. I think, basically, it depends on her motivation and how strong it is to recover. I hope somebody can come up with something more helpful for you as I appreciate this reply is no help at all.

@Nomoreplease23
DD is only in y8 and has meal support at school but struggles with eating here. We worked around by keeping the snack/lunch in school relatively low demand. We have decreased both meals and have increased breakfast, and dinner. Would something similar work for you? Just trying to control what you can control (i.e. the meals at home).

Thank you @Shanghai101 - your reply is helpful to know that there are others in a similar situation and how you adapt to different scenarios, that is what helps me and DD.

@Curlyhairedassasin this is where DH and I disagree, he is pushing for DD's independence and I struggle with this, the removal of the safety net at school (they were very good monitoring and giving feedback over DD's snacks and lunch and the school nurse took her obs) has pushed my anxiety through the roof.

@Nomoreplease23 my DD is in 6th form but still under ED unit so weighing still ongoing. We hade been clear that she will have to stop school if weight falls and currently she comes home for lunch or I bring it to her depending on free periods. She has told us she wont eat without someone there so clearly wont eat independently. Although this is v difficult practically at least we know where she is w this. I would load up breakfast and dinner if not an option to do similar. Also she has breakfast and morning snack together before school. Not allowed to go in if she doesn't. It's v v hard. Of course you want your child to be independent but she may not be able to make good choices yet (our DD can't)

@Nomoreplease23 I totally understand you. My anxiety really goes up whenever there are eating issues/refusals.
Is there no way you can monitor her weight? DH and I disagree on lot of things. it really doesn't help and often gives the ED the upper hand :(

When asked DD wasn’t honest about her lunch and explained a meal that she hadn’t bought or eaten. We fronted her and stated that is not to happen again. I hate the lies. She ate well when home from college this evening, a bit resentful though.

I am hoping this is a blip. I have considered buying a good set of scales (I threw them out when DD was diagnosed 2 years ago) - I am thinking of blind weighing DD at home, I am concerned that she may not comply and that it may be a reminder to her of the bad ED days. DH says he can tell if she is losing weight from looking at her face and arms - but her clothes are baggy and I am not convinced this is a good measure.

And with regards to anxiety - I am writing this message at 4 am - how do other parents help with their sleep during this illness?

@Nomoreplease23 the anxiety is horrible. Some days are just really difficult. I'm not sure I really have any coping advice, it just feels like part of this journey. DH also sleeps badly too and we both grind our teeth at night.I think the fact I am going through reverse puberty doesn't help at all either.
I would not rely on visuals for weight loss. Tiny weight losses might not be that obvious but could be a helpful early sign of ED behaviours returning
I think that if there is still dishonesty about eating you have cause for weighing even if it's a reminder of earlier ED times. You could offer it as a prerequisite for the first few months of college and do once a fortnight which could still help pick up patterns of weight loss.

Sorry to hear about everything going on.

I find taking a magnesium supplement at night helps & have taken night Kalms when things have been bad.

I phoned the ED clinic yesterday - had no contact from them at all since his assessment 2 weeks ago (I've been the one phoning them). Not impressed.

St John's wort taken at night with warm milk can help with sleep.
It sounds a lot easier said than done but try to switch off from ED at night time and prioritise your own well being in any way that helps you - favourite tv show, book, soak in the bath. Don't be tempted to Google or read about ED just before bed and resist looking at your phone if you wake at night - have a book by your bed to read if you're laying awake.

It does become easier in time. I'm coming up for 2 years into this and the shock of the first few weeks/months has worn off (although I'll never forget it) and I can now take care of my dd and also make sure I take care of myself x

Thank you everyone for your advice, I am going to weigh DD and I have bought some St John’s Wort. Everyone take care of yourselves and I hope this weekend goes OK.

Please I join? I'm so sorry to hear how tough things are for everyone. Our lives have been blighted by EDs for two years now, when two out of my three daugthers were diagnosed with anorexia. The oldest responded like a textbook to the CAMHS FBT, recovered her weight and her mental health, and, unbelievably, has just started at university.

However, my 16 year old daughter is in a right state. She eats a minimal amount, exactly the same things at every meal at exactly the same time. She used to be very sociable and engaged in lots of activities - the life and soul. Now, she has no friends and can't engage in any of her former activities. Because she can't eat lunch at school, plus social anxiety, she is only in school until noon, and only attends in the school hub, isolated on her own.

The reason I wanted to write on this thread, aside from solidarity, was in response to a post on a previous thread by @myrtleWilson about seeing the students visit the nearby university and realising how the ED has robbed so much. I get the same thing all the time...we live right next to the school, and see children playing on the sportsfield, laughing with their friends...and it punches me in the stomach that my daughter is isolated and miserable, her life imprisoned and lonely because of ED. We are trapped too, as she can only eat with one of her parents...she we can't have meals as a family or go out together.

Welcome SoSo99

So sorry to hear you've been through this with two dds.

Good to hear your eldest responded to treatment and has recovered well enough to get on with her life. Stories like that give us all hope.

The story of your dd16 is very similar to my dd. The ED caused her to develop crippling anxiety. She left school and our family felt split apart. Holidays etc are just a distant dream. It's so hard seeing others thriving when your child is struggling so much. I avoid going near her old school so it must be hard living so close. Is your dd on meds? They have helped mine reconnect with friends and be more open with us. I hope being here amongst others going through similar issues will be of some help x

Soso having to go through this twice is horrific. I be echo what Bagpuss said about meds? I think if she's completely stuck then meds would be worth trying?

How's everyone doing?

We had a first here Ystd, I had to leave dd in charge of her own dinner. I had a works event that I had to go to after work. I tried to get my my mum over but she was busy so in the end I left dd a dinner to heat up.

It appears to have gone well, dd managed pretty well as far as I can see.

My next stress is dd is talking about going on holiday with her bf and his family. Afaik he isn't aware of the ED which worries me.

That sounds like a positive thing re dd sorting her own dinner @Girliefriendlikespuppies. The holiday with her boyfriend and family feels like quite a bit to navigate, tricky if his family don't know either. Would it be inappropriate for you to have a confidential chat with his parents? Not to expect them to be responsible for her eating, but more to have an extra pair of eyes... how long would the holiday be for?

We are going ok (am reaching to touch wood as I type this). Dd has started back at school in the mornings and it's been going ok so far, although I think some of the issues which probably led to the Ed are showing themselves again, she's quite socially anxious and I think I need to chat to school about trying to support her with some of that. She gained a kilo last week, I think that's maybe 2.5-3 over the month. She and has been eating what we give her with not much argument, although her mood is very low. I really hope she can continue to eat like this, she is looking so much better in herself and I'm just keeping a blind faith that her mood will improve once she gains more weight.

We've not had a meltdown about gaining weight in about a week, so I feel like we might be due a hiccup any time now.

How is everyone else doing?

@Girliefriendlikespuppies So glad to hear that your DD has made so much progress. I would be tempted to let her have her independence re the holiday with her bf - making sure she knows that if it doesn’t go well food wise she will lose the freedom and privilege to have such holidays. I’m sure it will be an anxious time for you while she is away but if it goes well it is a big milestone in recovery. I guess it might help to discuss plans for meals with her before she goes, look at restaurant menus and decide what she would order and maybe have a backup plan.
@greydoor we are still in the fragile early stages of WR and, like you, holding our breath and reaching to touch wood. Hope everyone else is ok too.

Nice to hear from people.

News here is that my ds started medication a few weeks ago and recently doubled his dose. He's feeling very tired and more anxious than ever (to be expected with a antidepressants) and has missed quite a bit of school.

Better news is that he's been eating more and put on about a kg in a week & am really hoping that continues. He would do better if he cut down the exercise but that's not going to happen yet. No news from the ED clinic.

He has an international school trip coming up for 4 days in a few weeks, am feeling sick with worry about that. Let's hope things calm down with the anxiety and that he continues to put in some weight.

Hope everyone is okay.

Still much the same here. Dd is getting out and about more and more with friends but as usual it affects how much she eats. She'll choose the meal deal with least cals etc (often find the packaging/receipt in her bag). It's hard to have any control over that when I'm not with her. It's always a toss up between being happy that she's out having fun but knowing she's not eating enough.

Girliefriendlikespuppies excellent about dd eating independently. I totally understand your worry about the holiday. It's difficult to share too much with boyfriend and his parents if your dd obviously doesn't want them to know but if I was the parent taking a young person on holiday I'd appreciate a brief outline of any illness I should be aware of. You could just say dd is in recovery and mention anything likely to trigger her such as comments about what she's eating. Also anything that may raise eyebrows with such as taking a while to choose food or taking longer to eat would be good to know so they don't inadvertently put their foot in it.

greydoor Your dds progress sounds really promising but yes it's such a delicate time in those early days. Keep going and take it a day at a time. My dd's mood was low for a long time after she started eating enough. The brain takes a long old time to recover unfortunately. She's over 100% wfh now and even though she's a lot better she still has dark days. It's hard to know if it's the AN or just normal teen highs and lows.

mirabellablue yes that's normal with AD'S unfortunately. Fingers crossed the side effects settle for him soon. Excellent news that he's gaining weight. The school trip is a worry but as only 4 days hopefully he'll manage it with a lot of support in place. It's such an up and down illness that you often don't know until the last minute whether plans will go ahead. Very stressful!

Hi……since my last update, DD has lost weight 2 weeks running now. Only 300g, but still a loss. She is now 66% WFH. The ED have now referred her for inpatient clinic care. This makes me feel physically sick as I really don’t know how she’ll cope being away from home. For others who have experienced children in a clinic, how did you find it and how well did your child adapt? I’m assuming that they can’t come home until a certain weight is achieved? Were you able to visit everyday?
We have been told that the process of finding a bed is quite lengthy and if she starts to gain weight again, she can probably stay at home. She has a nurse come to the house for meal support for the evening meal, which she will eat fine when they’re here, but not so great when it’s us.
She really doesn’t want to go into a clinic, and understands the consequences of not following the meal plan but the illness is just too strong 😢

Sending thoughts of solidarity to you all, I’m so pleased when someone posts a positive update, and feel the anxiety and sadness and hope in every post.

We’re waiting for another appointment with the ED team next week, still coming home for lunch and doing a feeding diary. She will accept most foods but tends to eat about half, especially if there’s extended family at the weekends. So I’m putting butter/double cream/ice cream/cheese in everything I can get away with. We aren’t weighing at home but she’s starting to look less bony, so fingers crossed.

I strongly suspect ED team will call it anxiety and discharge, not really sure what we do from there and if they will automatically get her back in school etc.

My older daughter (13) is being an absolute git, not sure how much is her reacting to the attention her sister is getting and how much is puberty but I’m struggling not to blow up. How have siblings managed/processed it all in your experiences? And how do you navigate teenage hormones with additional bs?!

Hi. I'm going to post some positive stuff. Last weekend, DD had her first overnight visit home since June (when she ran away to Scotland...) - and it went well! On Saturday, she visited Manchester uni for an open day, then spent the afternoon with her friend - on previous time out from the ward, she had become very upset about the 'wrong' mango juice, but this time she ate everything without even prompting. She and her brother have swapped bedrooms, and DH and DD have decorated her 'new' room, so she can have a new start.

On Sunday, I took her and her brother to Alton Towers - she had been distraught that she hadn't been allowed to go on a ward trip there after her second absconsion, so the hospital suggested it. DS and DD got on really well, and DD ate her picnic lunch and snacks with no resistance. The hospital had written a letter for a fast pass, as she isn't allowed to be on her feet for too long, so they managed to get on ALL the big rides - including the Smiler twice! Some pacing back and forth, but a lot better in that regard.

At her multi-agency meeting last Friday, the team agreed on a provisional discharge date of 17 November, if home leave goes well and she has reached 95% wfh by then. I'm happy with that now, as the balance is starting to tip towards a risk of her being dragged back down if she stays in too long - she got upset yesterday as there was a new admission who was very underweight, and lots of the girls have NG tubes at the moment - whereas she did half a day at school and said it all felt really 'normal'.

She is going for a full day of school tomorrow, and then going to the Warwick Uni open day with her dad Saturday - she hardly spoke to him for months. We also have an appointment for an ASD assessment on 21 October. Her therapist gave us some advice on how to make the uni visit easy for her, but writing a detailed timetable about how the day would go - she really liked that.

She got her period back today - which she was pleased rather then distressed about. I really think she is going to get there!

Everyone - don't give up. Five weeks ago I was close to despair, and couldn't sleep for worrying about what would happen to her when she hit 18. Hang on in there!