Support thread 11 for parents of young people with an eating disorder

[GrannyRoberts]

Hi all, here is our new thread. I will attempt to post a link on thread 10.

Cantfindthewordsddstruggling

It is so so hard. I hope knowing you're not alone in this situation helps a little. What help is your Dd getting for her SH? My dd was given some coping strategies by the crisis team, but meds + gaining weight and maintaining weight are really the only things that helped. She still struggles with the urge on bad days but we mostly manage to talk it through. Sending loads of love and solidarity.

Summertimesadness24

I really can't see the point in staff scaring your dd about the ng tube, that approach is obviously not working. All they'll do by scaring her is making the actual procedure (if she needs it) a lot more traumatic. I know they're probably over stretched and have no time to spare, but a bit of compassion goes a long way. Your dd is very ill and probably very frightened. I really feel for you both x

Hi, I hope it is OK to post here. My daughter is 17 and receiving CAHMs FBT, but she absolutely hates it. Did anyone else find it inappropriate for an older teen? I must admit, they do talk to her like a naughty child, and I can’t see her opening up with me in the room. It’s obviously not working but the team just keep making appointments and we have massive meltdowns about going. I feel that the team are just ignoring her obvious distress. Thank you if anyone can relate. I am so stressed and worried as I thought that CAHMs were going to help us.

My dd was 17 and had some therapy with the child ED unit so not cahms. It was the same for her though. They got her to draw mind maps and volume in pictures!! FFS she was 17! She was doing a biology a level and could then them about nutritional levels way beyond what they were talking to her about.
It was so hard because we were at risk of being discharged from the support for not engaging but it just wasn't appropriate.

Colour not volume

Hi LucyWF. Welcome.

Our experience with camhs was much the same. Dd was 16 when diagnosed. She didn't engage at all with the therapists as they talked to her in a childish and pattonising way. She became increasingly upset at appointments. In the end she was getting her obs done and going back to the car leaving me to talk alone. Once she was out of danger she was discharged due to lack of engagement.

I've had more help from here than from camhs. I credit this group with getting my dd to eat and helping her with her distress and anxiety. Eva Musby has been invaluable also.

There's definitely a place for better help for older teens. They need to be treated like adults. Dd is so traumatised by it she won't consider therapy at all.

Thank you, and also sorry you had the same thing. It is so frustrating. Thanks for sharing your story. This can feel a lonely journey.

I'm sorry you are experiencing this

I've no experience but I found this with FBT up until the point of where my DD is now hospitalised and in crisis
The system seems so poor to me

Oh no, I am so sorry that has happened to your poor DD, I hope she is now getting the care she needs and deserves. What a distressing illness this is. Sending hugs to you and yours.

@summertimessadness24 are they listening any more today? It's frightening what they're telling you and so wrong. Have you been in touch with PAL's or cqc?

@LucyWF we did push and ended up with a brilliant psychologist from the CED unit. She made a huge difference with dd to the point that dd was happy to attend these appointments on her own. It's just so common that you have to fight for every step of the way.
It shows how care around the country is a postcode lottery. In retrospect I think we were lucky.

We had a v similar experience with our DD. Appointments at the ED clinic angered her and we came away more distressed than when we came in. FBT at home was an extremely slow and difficult process. She only ever ended up increasing calories to just about maintain 90% wfh, after about 8 months of no weight gain at all. However that resulted in her relapsing last year and now she's 59% wfh and very ill. She was 15 when we started with FBT (17 now) and we felt all along the methods didn't suit her, especially as she is autistic. Different approaches have been considered for neurodivergent or older teens. Have a look at the peace pathway. It's made for autistic people with anorexia but could be used for your DD too if she cannot engage with FBT. Wishing you the best

LucyWF it took us a long time to find a psychologist that DD could open up to. And that was a turning point in helping to understand what had caused the ED in the first place and gaining coping strategies - I believe colouring in is one of them as is deep breathing. But it has been a slow process. We didn’t ever get seen by CAMHS as DD was too low down on their waiting list and was transferred to the adult waiting list when she was still 17 as she would not have been seen by CAMHS before turning 18. In adult services, she was offered CBT but didn’t or couldn’t engage - no FBT or meal plans until she was at deaths door. Totally failed by the system.
Summertime, I hope your DD has managed to eat something. If an inpatient stay or NG feeding is necessary, as can be the case for some, then her nurses have been very unhelpful with their comments.

Thank you, I have had a look at Peace Pathway and it’s so nice to read different information, I feel that all kids won’t respond to the same treatment. I’m so sorry to hear that your DD is suffering right now, it’s unbearable to watch I know - I feel so sad at times that I can’t stand it. Thanks for taking the time to reach out to me.

Thanks for responding, yes I feel that she needs therapy - but I keep getting told that it’s too early which makes no sense to me. I am glad that you finally found someone who your DD could talk too - they must be so muddled somehow and surely talking to a good therapist must help. I wish you and your DD well on this sad journey, and thanks again, I was feeling so alone this morning and you and the other kind people who have responded have helped more than you could possibly know.

@LucyWF this thread was honestly a lifeline for me. DD is recovered but I pop on from time to time because I know how grateful I was to read about light at the end of the tunnel as well as amazing advice.

@LucyWF What is your DD's wfh? Therapy isn't recommended when they're underweight because the brain cannot function fully, it would have virtually no effect. Unfortunately my DD was denied therapy on the nhs as well, because of this. Though in some cases it can make small changes, it can be a good way to vent feelings and start working through thoughts (ED driven vs genuine)

@LucyWF I know from the parent meetings I attended that there seems a high rate of autism in ED sufferers but the ED also brings rigidity so can be hard to unpick what belongs to what. I think it is excruciating for an older teen to be spoken to as a small child by therapists, I wonder if some are just used to a much younger age group and don't realise how strange it is. Although we have had a case manager for our DD since day 1 I don't believe she was able to do much active therapy with her for at least 6 months. DD would shutdown completely and DH and I would have to explain what had been going on. However it has allowed a relationship of sorts to build over an extensive period . I do think my DD respects our case worker for being consistently present and available in the face of her shutdown. It is only in the last month that DD has been able to cope with the overwhelm of exploring her feelings. So for us it has finally landed but I can see that postponing that part of treatment might make more sense for others.

Hi Lucy welcome to the thread.

Unfortunately I'm not sure they are meant to like FBT, in fact it's pretty normal for them to hate it and for it to cause a huge amount of distress. I don't think it's possible to crawl out of the hole anorexia digs them into without a huge amount of pain and misery 😢

Learning to manage their distress is essential but as a parent also heartbreaking.

Lyrricat I can't believe they've left your dd at home, personally I'd have insisted they admit her as her risk of dying at such a a low wfh is really high. You must be terrified.

Is she managing 1000 calories a day and will she increase that now?

Incase it helps any of the newbies I'll quickly recap my experience. Dd started restricting food age 14yo during the first lockdown, it escalated really quickly and she also ramped up the exercise.

For a while I thought it was a phase/tried to ignore it/shouted at her etc but after a few months I realised her periods had stopped and her whole personality seemed to have changed (cold, miserable, horrible to everyone.)

She was referred to ED Camhs and her obs showed a few issues (low pulse, low bp with a postural drop) and they advised she was close to admission and advised me to start FBT.

I realised I needed to be off work and got signed off for a month. FBT was brutal to get established, dd massively pushed back, she developed OCD and started self harming but slowly the food started to go in.

Once the routine was established dd seemed to be resigned to it and I went full on in terms of getting the maximum amount of calories into each mouthful.

I started to see a lot more progress once I insisted she was blind weighed as knowing her weight was very triggering for her.

Dd is now 18yo and I would say is 95% recovered. She maintains a healthy weight, she eats 3 meals a day and is independent with making her own breakfast and lunch. She doesn't have fear foods and the desire to exercise has gone. There are a few remaining behaviours such as leaving a small token of food on the plate and snacking is tricky.

She is doing well at college, has a pt job, is learning to drive, has had her first serious boyfriend.... she has a life.

What helped dd in the early days was;

A strict routine, you could set the clock by the meal and snack times.

Me being available and not working, dd needed me to literally be with her 24/7 she became like a much younger child.

Blind weighing.

Double cream, I would say double cream saved dds life, it went into everything!

Distraction, distraction is important as it helps move the brain from thinking about the food into something else. We watched telly, played games, sang songs anything other than talking about the food that she was (hopefully) eating.

Self care, taking time out for myself, I had a weekly pilates class that was a lifeline for me.

Accepting that dd was really not in control when she was screaming she hated me and was going to kill herself because of me. The ED has to be poked in order to get rid of it, in order to slay the beast you have to see it.

Being firm but kind and consistent, I looked for any opportunity to show dd how much I loved her, would offer to rub her feet or do her hair.

Dd was cold all the time so I bought her a heated blanket, oodie, thick socks etc.

Fwiw I think dd is also autistic, she's never had any therapy (wouldn't engage) and I refused medication for her as I believed all she needed was food and I was right.

This group has been a massive help as was the fb group.

So just dipping in, so sad to read these stories.
DD did have good results with CBT-E. Maybe she just clicked with the person she did/does it with. But as per NICE guidelines it's an alternative that should be considered in older teens (if/when FBT not suitable/possible).

@Girliefriendlikespuppies Thank you for sharing your (and your DD's) experience, you've clearly been through so much battling AN and I'm so glad to hear she is almost recovered.

We've managed 900 cals again today. I didn't think we were going to get anything in her until this afternoon when she accepted having a big-ish smoothie (made by me with her watching) then another one for dinner later on. We're making very gradual progress, seeing as a few weeks ago we were averaging 200-300 cals a day. I think she's finding liquids a bit easier to manage at the moment. I might see if we can be prescribed some fortisips (though haven't mentioned to DD). She's maintaining her weight so far.

@summertimessadness24 How are you getting on? Thinking of you and DD x

I have been on this thread for two years now - our story is similar to @Girliefriendlikespuppies except DD was hospitalised for ten days and was fed by NG tube for a few days. It was awful but at the same time it was the start of her recovery - she hated it and the lack of control, it ‘encouraged’ her to eat. After leaving the hospital we had fortisip drinks in the fridge at home which she detested (hospital memories?) and so she ate, but of course not easily. It is very traumatic for all, you see a different child, being told that she wish me dead, go F yourself and being physically attacked by my intelligent DD was awful - not her but the ED hated us for confronting it, and you have to face it with your DC and you do feel frustrated fighting over a yoghurt or biscuit but this thread is a lifeline.

I have PTSD and insomnia from this and I don’t know how to resolve both, lack of sleep is making me poorly - if anyone has any tips then I would like to hear.

I am interested in what @Girliefriendlikespuppies said about being 95% recovered - I feel DD is like this, she has some lingering eating habits and leaves token food on her plate - I haven’t discussed this with her as I am naturally anxious about her eating from the time when every decision was ‘high risk’.

I held onto the thoughts that recovery is possible, the blips are feedback and not failure and that you are not alone in this. Sadly three girls we know locally from my DD’s birth year have ben ill with AN - and we live in a small village.

Take care everyone.

@Girliefriendlikespuppies thanks for your story, ours is very similar though DD is younger.

If there is one thing that has saved me (and DD) in this awful illness it's the ability to sit with discomfort. The discomfort of your child is feeling screaming and saying all kinds of upsetting things, the discomfort you feel when you have to push them to eat. I think my work has primed me for this.

I've also prioritised my relationship with DD, always trying to be kind and trying to spend some quality time with her. I wasn't really parented like that as a teenager so it doesn't come very naturally to me.

I read Hadley Freeman's book quite early on, and it gave me an insight into what a terrible mess DD's head was in. That helped me to not take any of her behaviour personally.

I think we caught it relative early, so I think that's why FBT seems to be working for us. We're in phase 2 now, WR.

I haven't posted for a while but I've been reading all the posts, wishing all the strength you need to carry on.

@D1ANA22 I think of my DD as anorexic in thought still. I hope her brain will catch up with the improvement in her physical but it is stubborn. The thought that she could relapse into what occurred before still lurks but I think we have collective trauma around the first months of treatment so hopefully that puts her off (like @Girliefriendlikespuppies I did not work at all and became her annoying shadow...sleeping on the floor in her room to stop secret exercise and no doors closed allowed/supervised showers to stop SH). Therapy might be a way to look after yourself now along w regular exercise, being outside. And just time really. Each day I feel a bit less afraid and a bit more like we will survive.

@Eyelashesoffire yes the discomfort! Each day I feel like I am getting better at withstanding it. Not dismissing it or trying to fix it and no longer terrified of it (not something I learnt as a child)

And great to hear you are in phase 2 @Eyelashesoffire