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

Yes to lego! During the Feb half term when DD was vvv underweight I spent a huge amount of money on Disney lego castle. She did a bit every time the urge to exercise was v overwhelming and did help to distract after eating.

@Proseccoismyfriend sounds like you're doing a grand job already - getting him to eat is the end goal and achieving that when he is distressed is brilliant. My dd can't make any choices at the moment either, it throws her into a real state of anxiety and inertia over the most simple things. She also can't really cope with new things so we are watching friends again at dinner time. We are all really sick of it but she can't tolerate trying something new.

I watched some of the speakers from the Beat conference last week and Eva musby was on talking about communication. I realised when I went on her website you can book a 1:1 session with her to talk through your own situation, and she has quite a few workshops running. Maybe going along to one of those with your dh might help? I also did the beat 'developing dolphins' course too with my dh and it has helped us have a kind of shared view about things. Not saying we are managing it all the time - I cried myself to sleep over the weekend because we disagreed about how to approach something - but it does help a bit.

@Whippetlovely - the outbursts of repetitive questions are very familiar to us. I wonder if they are a little like a meltdown it sounds like the distress kind of overrules bit of the brain that can do the thinking and engaging with what you're saying (ie, don't worry, your jumper will be ready for tomorrow), and is just reacting to extreme distress. I've heard of this being described as being 'out of a window of tolerance' before, and rather than reasoning with someone who is out of their WoT, the first thing to do is to get them back into it. So doing something which promotes calm and connection. Then when they are back in the kind of state where they can think, you can give them info they need, eg jumper will be ok. I think that's the theory anyway.

We discovered a fear food over the weekend. I realised dd hadn't had any sweets since the start of all of this, and so we went to the cinema and I took a small ish bag of sweets with me for each of the kids (in my usual ikea plastic bags - classy 😂). She ate it, although very reluctantly during the film. But last night we had the most almighty screaming and crying, about something completely meaningless (finding a Christmas wallpaper background for her phone), which went on for a really long time. It was very upsetting for everyone, my poor ds was crying about it. But I am absolutely sure it was actually about how she felt after eating the sweets. My dh looked very worried when I said this morning that now we have discovered a fear food we will need to give her it again...

Exhausting. Keep going all of us, one foot in front of the other. Xx

1.2kg gain since Friday 🥳🥳🥳🥳 we haven't told him and have said he needs to keep going this week just like last week. My heart is doing a merry dance while keeping a straight face, I've just bought the home alone lego house and he's started.....

Yay @Proseccoismyfriend will done... keep going! Great job!

Wohoooooo!! Amazing news @Proseccoismyfriend

Yay Prosecco fab news, well done.

wow prosecco, that is a lot since last week. Keep it going!

Oh Prosecco give yourself an almighty slap on the back for supporting him to achieve that!

I had flashbacks when you were talking about the repetition of questions or even topics of discussion. We watched a lot of bbc news channel when she was at her most ill and I had to bite my tongue frequently as she asked the same question about the news again and again. It is hard when you're in the moment to realise how much their world has shrunk and whilst a lot of it is driven by extreme anxiety, I do also put a fair proportion down to lost cognitive function.

It makes me feel so much happier for the crap this weekend. It's his first gain since this all began so a long time coming! Explains the Ed really kicking off too as I'm fighting back. We've definitely lost cognitive function the clinic today said it's very common as he's functioning on half a brain

@Proseccoismyfriend I'm so pleased for you! 🎇

@Proseccoismyfriend great news, enjoy the lego

Hey everyone, hope you are all doing ok.

Thought I would give you an update on my DS.

So we have had a pretty good week after his really awful week. Eating is so much better but he’s still battling with the voice in his head and his body image.

We had another appointment at the ED service this morning and I was determined I was getting a diagnosis of an ED… OSFED was what I was going for given his weight is healthy.

I did my research, I had my points and my questions written in my notebook just incase my perimenopause memory failed me.

It actually was a lot better than I had anticipated. They knew I mean business this time. But can you believe that I had to explain to an eating disorders nurse what OSFED was and that it is the most common eating disorder, named on nice guidelines, the dsm5 and also NHS England and the ED charities.

I can’t believe she didn’t have a clue!

Anyway they are taking us seriously and he is going back in 2 weeks to do some body image work and for more support with education around food.
we will see how this goes but at the moment he has a reason to eat, as he is singing 4 solo covers at the local Christmas light switch on and he couldn’t sing last week due to having no energy, so he knows he can’t do it if he doesn’t eat.

@Proseccoismyfriend - Brilliant news. (And I got the Lego Home Alone house for my 56th birthday. It's awesome!).
@myrtleWilson I was so pleased to he as r about your DD's job. I think you once posted that our kids will get there eventually even if it's a different route to their friends. Well, your faith is justified - hope she is smashing it.
@Girliefriendlikespuppies Sorry to hear about your DD's breakup and subsequent SH. Is she still on it with eating though? I know you have worked so hard.

I too have found myself on the thread no parent ever wants to find themselves on. I’m absolutely distraught. My only dc has been restricting and self harming.

@Cantfindthewordsddstruggling so sorry you find yourself here. What is it you need? There is a lot of knowledge and kindness on this thread so you are in the right place. I can imagine you are reeling, it takes a bit of time to get your head around it all

@ReineDeSaba a phone call shattered my life as I knew it. I’m fortunate that I’ve been able to get her in to see a psychologist so quickly but I’ve been asked to get her in to see the gp. It’s the lying to my face about what’s she’s been doing and eating that I’ve struggled with. That and self harm. As far as I’m aware from an Ed behaviour perspective it’s solely restriction, but I am utterly petrified about what this means for her health both in the long and short term . I’m sat here in tears, so overwhelmed that for moments it takes my breath away.

That sounds like a huge shock for you. I was already aware of my DDs SH and had been trying to get her help for an emerging ED for months so my experience was relief. AN is v determined and it pushed back loads when we started treatment...my DD lied/hid stuff to the point where I slept in her room, didn't allow closed doors, followed her into the toilet etc. She was also trying to exercise in secret. It's absolutely heartbreaking when you think you had a good relationship w your child but it's an addiction they are using to cope and they know they have to hide it. I remember finding it hard to get out of bed and keep going because it was all so painful, it really is excruciating

@Cantfindthewordsddstruggling Sorry you are here, but welcome. You need to get your DD to the GP as soon as possible. Referral to the Eating Disorders Service should take no more than 4 weeks, but GP should be taking obs in the meantime, as physical decline can happen very quickly. (On the other hand, with proper treatment, if is almost all reversible). Look at Eva Musby's YouTube videio and do ask questions on here - there is a wealth of experience and information. Hang on in there.

Hey @Cantfindthewordsddstruggling sorry you've found yourself here, I completely understand that awful feeling where you realise how awful the reality is. My daughter is 12 and I realised a few months ago that she had been restricting, probably for at least 6 months prior. It's been a hard few months since, anorexia is extremely sneaky, and it's a lot of work getting them to restore weight. The most frequently used approach with the best evidence in rhe uk is called family based treatment (fbt), and there are three phases. Therapy for the eating disorder actually doesn't come until the last phase usually, as a brain that is starved can't function. So the first phase of treatment is always restoration of weight and nutrition. The basis of this is three meals and three snacks every day, the person with ed cannot be part of choosing, cooking or plating the food. Many parents including me add lots of animal fat into food, as this is thought to help the brain and body to recover. But if your young person has been severely restricting and having less than 500 cal a day, this needs to be done initially with guidance or advice from a dr, as there is a risk of something called refeeding syndrome. But it's also essential to start as soon as possible to increase calories and nutrition. Beat is an excellent charity and they have a helpline and lots of resources.

@Roui - well done on being so assertive, that's brilliant. Hope the next few weeks go well, it's good having an incentive that's for sure.

I also second BEAT as an amazing resource, I've cried on the phone to them trying to get help twice, and they are so helpful and so kind as well. They really do support you, so definitely try them to get some sense of what to ask for and what treatment is appropriate.

I'm now fighting to get basic provision in adult services! The fun never stops!

I should say my dd is in recovery of sorts, but I want to make sure the adult services are providing health checks, support and also psychiatric advice about medication- you know, basic stuff. They are quite clueless about directing me to all these things and unsure what's the GP responsibility and what's theirs- I'm on all their cases and will remain so. My dd's recovery is fragile and we absolutely don't want to wait for it to tip into crisis again, or end up in A and E, we've only been with them a few weeks!

@Cantfindthewordsddstruggling sorry you find yourself here. How old is your DD. You have good advice so far but it is key to get her seen by a GP. She needs full blood tests, BP and HR on sitting and standing, an ECG and weight and height taking.
Do you know how much she has been restricting to and for how long? If it's less than 500 cals for a few days or more she should prob go to A&E for these assessments.
You need a referral to a specialist ED service, in some areas you can self refer.
I second Beat as a good resource.
Please ask any questions here and we will try to help

Well done @Roui for sticking to your guns! It's great he has an incentive to eat. Something has to be louder than the voice.

DD has been discharged from ED service and put on a waiting list for CAMHS, even though the nurse telling me this doesn’t know how long the waiting list currently is, or what exactly it is CAMHS do. She’s reached 85% wfh so can go back to school full time and they just want her off their books because she’s not fitting neatly into an AN diagnosis. I’m gutted but apparently even if she goes back down they think it’s control stemming from anxiety not ED, so won’t accept her back under their remit. The good news is school health have come through (after a year on their waiting list!) with a counsellor starting next month - DD is adamant she’s not going to talk to her though. She’s 11! How can she eloquently express why she won’t eat?! We are all so tired, and we’ve been told still no exercise so we’re not getting the fresh air etc which makes everyone feel worse. Sorry to be a downer when there’s been some lovely updates recently.

Sorry to hear this @Glitterfarti. 85% is still very low. Is your DD eating 3+3 and gaining?