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!

Grey are you nhs? I'm nhs (specialist nurse with own caseload) and the Gp signed me off with 'family stress'.

It was a lot easier to manage dd and keep my head focused on what I needed to do without work. I was also crying in meetings and was worried about making a mistake as was so distracted.

@Girliefriendlikespuppies @greydoor I’m an NHS worker too with my own caseload. Had a safeguarding discussion today and broke down after the call, normally I’m far more stoic! ED clinic first appointment tomorrow. Crapping myself.

@Proseccoismyfriend ah, that's good you have a sense of what's going on in his head, better to know what he is experiencing I guess. Hope he is getting stronger, poor little thing, my heart really goes out to him. Snacks are the hardest bit for my dd, it's a real challenge for her. I can imagine getting home feels like a double edged sword, quite daunting, but hopefully it will make him feel more comfortable and safe to continue being determined. My dd has been sleeping in with me for the last few nights, I think it's helped her to feel a bit safer.

@Girliefriendlikespuppies @Glitterfarti yes I'm
NHS too. It's so frustrating in terms of timing, I'm doing kind of my dream role, started it about a year ago, but it's super challenging. Everyone I work with is so lovely, but it makes it harder because I feel like I'm letting them down. But I know I can't manage like this, I'd rather do half of the job than a terrible go at more.

I'm nervous about the camhs meeting tomorrow. I'm worried they will minimise things, or that I won't have the chance to speak without dd being there - I don't really want her to hear me talking about some things. Mainly I don't want her to know how I figure out when she/ the ed is being sneaky, but I want them to know how sneaky it has been!!

This stuff does not suit a natural overthinker!!!

@greydoor Hello, to put your mind at ease I don’t think CHAMs will minimise anything. It’s a through appointment ours was four hours. It consisted of us all talking as a family and then an hour separately a therapist with her alone and parents alone and do bloods ,bp ect. With us they then saw us weekly after that. I’m sure it will be fine and they will give the support you need.

Good morning, can I pick your brain?

We are only under the ED team (but medicated with setraline and olanzapine by psychiatrist). DDs AN has been going for a year now, referred in Dec, then going down hill May/June with inpatient stay for refeeding. We have been home now for 3 months. DD will absolutely only eat stuff on the meal plan (but has cut out butter/oils). She is still refusing anything home made (extreme fear about hidden calories). She is not engaging with talking therapy with the ED team. Basically, we are standing on the spot and are not moving forward at all. She will just shut down and run off (instead of getting violent) when we try to get her to eat home cooked stuff. Zero engagement, not even anger. Just escape. What sort of therapy do (did) your DDs access in that case? I really don't think FBT is working for DD.

My DD has had her Lightbulb moment. She called me when I was on the motorway and told me to look at my WhatsApp messages, so I pulled into the next services. She had written a long message saying she had hit rock bottom after her second absconsion and realised that anorexia had ruined her teens and she wasn't going to let it ruin the rest of her life. She and a friend have set themselves up a Challenge box to challenge each of the 'rules' - she did baking on the ward yesterday and ate what she cooked. She sent me a picture of her having an extra cup of peppermint tea (fluids are a big fear). She's talking about careers and has restarted year 12 (online initially). Wants to go to Wagamama's on Wednesday for her first meal out in two years. So proud of her. Tears streaming down my face as I write this. Hang on in there everyone - there is hope. And just wanted to say this group has kept me going in the darkest times. Thank you everyone xxx

Nan that is the best news ever. So pleased for you and your family. I hope you can celebrate bigtime tonight. I remember the family therapist telling me that they sometimes have to hit rock bottom to find the motivation to recover, very similar to an addict. Have a fabulous weekend

Aww nan that's amazing 👏🏻 so happy for you. I really hope this is the step towards the future free of anorexia for all of you.

Curly I think the fear of hidden calories has to be tackled before you can say FBT doesn't work. If she runs off, you bring her back, if she runs out of the house you call the police, if she stops eating you take her to a&e.

You won't move forward until you can get a grip on this as the fats are exactly what she needs to get better.

She will get very distressed but if you can push past this it will help her move forward.

My dd went off for her first day of year 13 today, feeling a bit anxious as she's now getting a bursary which includes lunch. She's very happy about being able to go the canteen and choose lunch, I'm obviously worried about not knowing what she will eat!! First time in three years I've not sent her in with a packed lunch...

I also talked to her about leaving food last night, she immediately got defensive 'I'm full' 'you give me too much' but once I'd challenged those thought processes she backed down and just said 'you're so annoying' 😂

Really hope we're at the final few hurdles now.

Girlie, our situation is not dissimilar to Curly in the sense that hidden calories are a big fear and lack of engagement with therapy. Our DD is late teens. Can you give examples of how you challenged your DDs thought processes last night. I’m positive that this is where I am lacking skills. Thank you in advance but no hurry to reply

I do think a certain amount of weight needs to be restored before any thought processes can be challenged which turns the whole thing into a bit chicken and egg. My DD started from a point of full on conspiracy theories of why she was in an ED unit to now she is simply sceptical about needing to be there. At this stage I hope something is going in v v slowly. She formerly told me she preferred to die rather than eat and she wouldn't/couldn't find any motivation to live for anything . I think all of a sudden she hit reality that going back to school (friends/subjects and teachers she loves) couldn't happen unless she eats so she has 'given in' to the plan, at least for now

Nanflanders this is the Very Best news. The fact that this comes from her means everything. I have v much learned that just because I want my DD to want to eat/live I cannot force her towards it. I hope your DD continues to move forwards and enjoy making up for lost time. What a breakthrough!

We're in holiday at the moment (more on that anon) but just wanted to jump on and punch the air delight for you @NanFlanders!!!!.we had a challenge jar and it worked well. Get that countdown for Era's tour going now!!

@NanFlanders brilliant news. I hope the lightbulb does not go off again (metaphorically speaking). It would be so amazing if this is a true and long lasting turning point for your DD. You all have been through so much. Upwards and onwards!!!!

Nan that must have been so wonderful to read. She's really thought about what she wants and has worked out ways to achieve it. Sending her huge positive thoughts to keep challenging herself and aim for that bright future ✨️

Oh @NanFlanders I am so pleased to read your post. How amazing. Now she wants to recover too I hope she can make some real progress.
Fantastic! ❤️

Also adding my congratulations to @NanFlanders ! So pleased to hear a positive step forwards.

Been to initial assessment with ED team today. Wfh has gone from 79% to 80% with us making an effort to feed her up over summer, been advised today to reduce school hours to 2-3 days or 3-5 mornings a week and no PE, Dance/Drama! She’s only been at her new school for four days! Feeling a bit bereft….

@NanFlanders that is absolutely brilliant news! So happy for you, and your DD, a really positive step forwards.

@Glitterfarti that's really tough I'm so sorry. It's such a shock when you go from thinking things are probably OK to realising they really aren't. I hope you're getting lots of support. This thread is amazing, keep posting here as there is a huge wealth of experience.

Finally, after 2 long months as an in-patient my DD is now approaching 85% wfh and has been granted a short home pass this weekend. This week she's also been allowed out of her wheelchair and granted 10 minute walks on hospital grounds. Small steps but she's absolutely delighted and it feels like some real progress finally.

@greydoor how did the CAMHS appt go?

Excellent news! Hope you have a lovely weekend!

@GrannyRoberts wonderful buds of promise!

@Glitterfarti it's a shock to understand just how poorly they have been and just running on empty. For us getting back to school full time is finally helping to drive some progress (after a miserable spell of preferring the ED to absolutely everything/no interest in goals)

@Glitterfarti it is so hard to with this illness, and i feel for you. If I could reframe though? (I do this a lot with my DD!)
She has gone up to 80%. All your hard work together has stopped the losses, stabilised her and turned it round to gaining.
From my experience and listening to others it can take a long while to get through that process (like turning an oil tanker ship!) and so she has made great progress.
If she enjoys school then this is hopefully some incentive to get the food in for her.
And the less she does, the more food will go into recovery and not the calorie requirement of attending full time school. Which even without sport/ dance etc is considerable.
This is not to not validate your feelings which are more than valid but to try to congratulate you both on how far you have come this far.