Support thread 15 for parents of young people with an eating disorder

[Mummyoflittledragon]

New thread. The old one is full…

@Weightlossworried there does just seem to be a way that they work whereby you have to eat 3 meals and 3 snacks and if you don’t you’re punished. I’m not sure how in the modern world there hasn’t been more progress made as to how to actually help people.

September is a while away and you are in control. I would do as you say, make lots and lots of notes tomorrow. Smile and wave as they say - or nod in this situation and then go away and make a plan once the meeting is over. We will be here thinking of you xx

@Weightlossworried
As Pearl said and Girlie has before, just take what is useful from them. They have a script they adhere to. And they can’t or perhaps to a degree won’t deviate.
Just as an example, I have chronic pain. I discovered they follow a protocol. They start with x painkiller (antidepressants actually), then progress through the protocol if that doesn’t work or the patient can’t take them. The next. Then the next. Ditto the schedule of antibiotics. I told the GP I wouldn’t be able to stomach x antibiotics, please give me y. Absolute refusal. That isn’t first line. No one will give me that. I took one to try and on swallowing, I realised I was in for a bumpy ride. I booked and paid £££ for a private GP and he gave me y antibiotics.

To a large degree their hand are ties. They aren’t allowed to think.

What @Mummyoflittledragon they aren’t allowed to think and almost become robotic and start to agree with what they’re saying. I’ve also found that the majority are fairly young, and are keen to impress their managers etc. They also seem to weirdly enjoy making you feel awkward and upset. I’ve no idea why they don’t see the bigger picture etc or what success they have. I think they discharge people at a higher weight, but I’m not sure it is their hard work!

That sounds incredibly frustrating @Mummyoflittledragon

Yes, I think they're actually extremely risk averse. To the point where they daren't be positive about anything in case it encourages us to think we're doing better than we are. In fact the therapist told us about a coffee morning they're doing for parents next month - great, it's always helpful to speak to other parents. However, she warned that they don't want us to contact each other outside the group. It's a bit silly really feeling like they need that level of control. They're obviously scared of not being able to control the conversations we'd have outside of their supervision.

@Weightlossworried yes, they don’t want you to find friends like us who agree with you. Especially as you will have the same caseworkers. Surely it makes total sense to meet people in the same situation?

They used to hate it if we spoke to people in the waiting room! Mad hey!

I can't believe they didn't like you talking to each other in the waiting room @Pearl97 that makes me want to make conversation next time I'm there.

Our appointment went ok in the end. The psychiatrist was there, the nurse and the dietician. (that sounds like the start of a bad joke) I think as much as I regretted opening up to the therapist, it was probably the right thing to do because they'd clearly taken it on board. It was like talking to a different team to last week. They're changing things up so we see the psychiatrist more and he's going to prescribe her medication. He wants to weigh her monthly instead of weekly and just do obs fortnightly. I'm feeling quite positive. I even got an apology for the hospital threats. DD is in her post appointment shutdown so I don't know what she makes of it all yet.

How's everyone else been this week?

@Weightlossworried I am soooo pleased. I don’t think it’s coincidental that you went in feeling more n control. I really hope you continue to feel in control and able to tell them what you need.

You know now how your daughter is after the meetings, maybe try and try and enjoy the time to yourself. Watch some trash TV. May I recommend millionaire Nannie’s on Disney plus if you have it. It’s been an excellent source of time out for me! Really glad all went well, thanks for updating us, I have been thinking of you xx

@Weightlossworried that's really great that you had such a good outcome from the meeting, hopefully it will make things easier for you going forward. It does seem madness when they insist on doing things that are actively getting in the way of recovery.

Definitely follow Pearl97's suggestion of reclaiming a wee bit of time for yourself, you deserve it!

Thanks both. She actually came round really quickly which surprised me. I don't think we've ever all 3 came out of a meeting feeling reasonably ok. Normally either she's upset or we are. She's open to trying medication which really surprised me. Normally if CAMHs suggest things it's a hard no. We had a good chat about how she's feeling and then did some fun stuff together.

Millionaire nannies sounds like something we could watch together actually!

@Weightlossworried that sounds brilliant, so pleased for you! I don't know what medication they're offering but my DD has definitely found olanzapine helpful, mirtazipine was an absolute disaster. Obviously everyone's responses to medications are different though.

He didn't say, we have an appointment with him on our own next week so we'll discuss it then. It'll be good to get some perspectives from you and other parents once we know a bit more. Thanks x

@Weightlossworried you could definitely watch it together. It’s absolutely mad!

I love that you all came out feeling ok. I think maybe your DD is starting to realise that she would like her life back etc. Medication is definitely worth looking into!

Seconded on the medication. I don't think we would have got anywhere without it. It's not a miracle cure by any means but it has definitely made a difference. My daughter refused all offers of meds but then got to a point where it was so bad she didn't even have the strength of mind to refuse. One of the side effects of olanzapine is an increased appetite too which is helpful (but definitely keep nugget of info to yourself!! )

@Weightlossworried
I’m so pleased everything went well for you and your dd has come round quite quickly. That must feel like quite the relief. I hope you are able to take a little time just a moment, to relax into that feeling.

I can’t believe what you and @Pearl97 have said about the level of control CAMHS wants to have over parents. Parent groups could be such a support and comfort. It’s like a type of solitary confinement.

Things are really up and down here. I am getting used to dd’s demand avoidance. It’s like everything is a default no. Then you can work with it. It’s so tiring. I’m trying to get her ready for moving out. This week, shopping.

Yesterday she blew up because I wanted her to go food shopping for her own food. No way. I discussed it a second time and explained I want her to do trial runs so she can make her mistakes at home. This isn’t punishment. This is preparation. Today, I tried to make the list with her. She blew up over that as she’s not going to be eating like she is now. I asked her to tell me how she intends to eat (sounds like not 3+3). Her answers are she was fine on holiday and didn’t eat like that. Doors slammed in my face. But incapable of telling me how she will eat.

I then talked through her bedroom door and told her that maybe she was fine on holiday, but she wasn’t once she came home and tried to do it herself. That I left her to it when she got back and she started to relapse and I had to turn her around. That she will be on her own at university, rather than with friends. This caused her to come and physically push me away from outside her room.

Was that the right approach? Idk.

In the end, she decided to take her very emaciated friend to Tesco to shop. This friend looks like dd did when very unwell, but is traumatised from her now (thank goodness) ex bf. She’s not deliberately restricting per se. But it’s tricky. Dd has stayed away from hee for a long time. Hopefully dd is recovered enough to cope with this. I’m hoping dd will look at her and think she doesn’t want to be like that again.

Thanks @Mummyoflittledragon

That all sounds so hard to navigate. There probably isn't a right approach - as in, there isn't some perfect thing you can say or do that will get through to her in that moment. Especially when she's so demanding avoidant. It all helps in the long run though I'm sure. The constant nudging and guiding must be exhausting for you though!

Hello all - thought I’d post an update as have not logged on for a while.
A few weeks ago DD15 was told she had to go on a meal plan or be hospitalised. She tried (badly) for a few days but then stopped. They had prescribed olanzapine but she also stopped taking it before it really started helping. Now she’s back to around 100 calories a day and has clearly lost more weight. She’s also getting more and more depressed - she spends a lot of time in bed feeling down saying she’d rather be dead. She’s getting very extreme about wanting to walk off the tiniest thing she eats. I’m very worried.
We’ve not seen the Ed team for 2.5 weeks because they were on leave but are due to go back next week.
i imagine they will almost here. They said previously it would be a general peads ward but I’m wondering if she actually needs a specialist ward given her mental state. Does anyone know what the trwshold or process is between deciding if it’s a peads admission or mental health unit?
it feels so dark and hopeless at the moment. I’m hoping being hospitalised will help her but realistically speaking I know she’s so severe it unlikely to be an easy road

Hi,
I'm so sorry that sounds really stressful for you and your child.

We have been told a paed general ward is always the first thing to try (if home treatment isn't working, which it doesn't sound like it is)

Once they're following a meal plan on the ward which includes meal replacement or NG if they don't eat the food, they'll be discharged home again (assuming weight/BP/bloods are ok) We have been told there will be 3 x attempts to treat on general paed ward then it's a specialist unit. Because places are so limited they need to exhaust every avenue first and this is a last resort.

I know this will likely vary from place to place and may be a bit of a post code lottery.

We have had two bouts of general ward admission now on our last attempt at home based treatment.

Also in order to persuade her to take the Olanzapine we sold it as it'll make her feel a little happier. We kind of downplayed the "getting rid of food related thoughts" thing! It did take reaching absolute rock bottom though before she would agree.

I hope you get to see the team asap. Is she normally low mood/depressed? May be worth enquiring about an anti depressant?

Hey @10YellowTulips that sounds so worrying. Is it 100 calories a day or a typo for 1000? If it's 100 I think you should probably take her to a and e. It certainly doesn't feel like you can wait to be seen. I'm surprised they let her not be seen for 2.5 weeks when she's so unwell. I'm so sorry things are so tough

Thank you for the support.

@CuppaTandBicky that’s interesting to know about the 3 attempts. I assume they won’t discharge from peads ward if they are still on NG? I’m fairly certain that’s what will happen - I don’t see her suddenly eating in hospital when she won’t eat at home.
She had occasional low mood before all this really kicked off but she wasn’t depressed. They’ve said they would give her therapy and anti-depressants once she’s weight restored or at least on the way there.

@Weightlossworried yes I really did mean 100 calories. She’s been eating that little for a good while now. I guess the ED team thought it was ok to leave her for a few weeks because last time we saw them was when she was stilll trying the meal plan and she had maintained that week. But pretty much as soon as we walked out of there she stopped eating again.
our appointment is Wednesday but I’ll email on Monday already to give them a heads up so they’re prepared. I’m pretty much resigned to the fact she will be admitted before the end of the month

Do they have an emergency number for weekends? We've been advised that intake that low for even a day means we should ring them or go to a and e. Sorry, I'm not trying to worry you when you must be already out of your mind but I do think low intake like that constitutes an emergency. Big hugs to you

@10YellowTulips
Whet you are being told by @Weightlossworried is correct. Eating less then 500 calories a day is red on the MEED (medical emergency for eating disorder checklist). Your dd needs to be taken to A&E immediately This cannot wait till tomorrow, let alone Monday. She may be holding her own today, albeit very lethargic, but she could go downhill very quickly. And she could become very very unwell in a matter of hours.

Please take her to be seen. She needs and ECG, bloods, BP and pulse. And it is likely she will be admitted.

Thanks. It’s just never ending. I don’t seem to be able to get anything right. I know it will pass and this isn’t really about me at all, it’s just hard.

It is hard, it really, really is. And thank goodness we have this place to talk about how hard it is for us. In real life we have to hide that so much for the sake of our kids but we have to be able to say it somewhere

@10YellowTulips i agree with @CuppaTandBicky they will almost always try leads ward first. It amazes me they just made children eat hospital food in a hospital ward, but hey can be observed there and HG fed if necessary. Your daughter really does need to be seen asap. No mater what her size etc her body needs to be re fed in a hospital setting with daily refeeding bloods. I have been where you are, I eventually realised I needed the help almost as much as my daughter did.

The sooner you go to hospital, the sooner you get the help you need. You are going to need medical help so better not to wait. We were sent to a and e anyway from the ED team. You are just missing about a step with the ED team. We are here and we do understand, but this is serious now and can’t wait for ED team xx

i know for this low level of intake it’s the guidance to go a&e but she’s been eating like this for months and ED team know. We’ve been to a&e before after 3 days of eating nothing and they sent us home and told us to come back if she has physical symptoms - which she still doesn’t. . Ed team recently did an ECH and two sets of bloods. I think they’ve been waiting until her physical obs deterioorate. However I will be pushing for the hospital when we see them Wednesday cause I know she needs referring in a hospital setting and this can’t go on. I’m fairly certain she won’t eat there either and we’re on a path towards NG tube