Support thread 12 for parents of young people with an eating disorder

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Suddenly noticed the old thread is almost full and thought I'd make a new one.

@Mumofellie to work out the wfh percentage you have to figure out what weight would be 50th centile for your child’s height. Divide that (ideal!) weight by your child’s actual weight then multiply by 100.

DD’s guide from ED clinic is full time school at 85% and PE above 95%. She was 89% last week so we’re tentatively starting two full days back and the rest half days. She stayed on Friday, and only ate the crisps out of her packed lunch, and hasn’t eaten well all weekend, so think we’ve had another win some/lose some scenario. Will weigh her tomorrow.

Had a CAMHS appt for me and DH where they really dragged all my skeletons out of the closet, I guess looking for trigger trauma. No further along with actual practical guidance/support, just now my MH is on the floor too. Yay.

How does full time school work with the meal plan, @Glitterfarti , if you don’t mind me asking? Dd hasn’t been able to attend school at all since November and we seem no closer to being able to attend.

Does your dd eat with a member of staff? Or can she eat her meal plan without direct supervision? My dd will only eat if I sit with her and won’t eat in front of anyone other than immediate family. She also seriously doesn’t have the physical stamina for school even though she’s at 90% now.

That Camhs appt sounds awful. I had similar last week. Took me three days to feel vaguely ok again. So solidarity there.

Thanks for the solidarity @WaitingForMojo, good to know I’m not the only one that feels like gibbering in a cupboard til it all blows over.

DD has said she won’t eat at school - she’s lied to me twice about getting a snack from the shop as she knows I can see stuff she gets from the canteen on site… she is supposed to eat in a supervised area - they won’t do managed supervision but will keep an eye and monitor food refusal. I’m expecting this approach to cause a loss then possibly ED service may be spurred into action as they currently aren’t interested.

Crikey, that is awful. I feel lucky that our Ed team are saying that if dd can’t eat there, she can’t go. It does mean that we’re likely to have to get her through GCSEs at home though.

It really is a mess isn’t it, with so much variation across the country and even within the same team. We had a huge battle to get referred in the first place, an unimpressive encounter with the specialist ED team at the inpatient unit who didn’t feel that dd had anorexia despite being at 78% EBW and dropping quickly. Then seemed to strike lucky at Camhs, which is where we expected them to be crap.

It’s not been discussed with us whether or not DS can go to school or do activities. Although perhaps that’s because it’s a moot point given he hasn’t attended school since December regardless and exists only between his bed and the sofa. I think I’ll ask the ED team though as it might be that getting out the house a bit could lift his mood. He’s 73% wfh currently.

Since our brief trip to hospital DS has been doing much better with the meal plan and eaten everything he’s been given bar two glasses of milk. I think the hospital frightened him. He’s not really communicating with anyone though, so I’m unsure how he is feeling. Physically he looks like he’s finding standing up not as difficult. The ED team were not happy with the way DS was treated in hospital and will be taking it further. They’ve been phoning everyday to check how he is and we are going for an appointment tomorrow.

I’m going to try and take a couple weeks off work because I’m just overwhelmed with it all and concentrate on anything.

@WaitingForMojo I agree, it’s a mess, so much variation in people’s experiences. We were originally told by generic CAMHS that we couldn’t be referred to the ED team as his eating was due to his autism and it was suggested I contact a local charity for support - he was 76% wfh at this point.

That is another problem woodentrain, the way autistic people are dismissed by mental health services. It really isn’t ok.

Your ds sounds so unwell. I really hope the ED team are able to put something in place for him soon. It’s just horrendous that he was sent home from hospital.

Going to hospital frightened my dd into complying with her meal plan. Until she found herself sitting on a ward, I don’t think she believed it would ever happen

We had meal support with school arranged. DD went to the head of year office to eat with staff in there. We had to push a lot for it though.

@WaitingForMojo thanks for your reply she’s moving around as I’ve gone back to work so she has to get in car and go into her grandmas and obviously allowed to toilet. I will look for that chart. She has stopped college and restarting in sept so doesn’t have college to walk round

@WaitingForMojo My DD refused meal supervision at school, but (at least when she was more recovery-focussed) would FaceTime me to eat from a private room at school. Is that a possibility?

Thank you, I just wondered how others were managing it. My dd is selectively mute and can’t use the phone or video call but that’s a great solution for others. I think for us, home ed is going to be the way forward for the next couple of years as dd hasn’t really accessed any secondary education whilst we’ve tried to get her needs met in school.

That said, I would love her to get to a point where she can be more independent and go out for the day etc. We are pretty tied to the house as she won’t eat in public and she can’t go anywhere without me for longer than an hour or so because of the meal plan. So these solutions are still good.

We are at a point where she is eating the meal plan without much objection and accepting weight restoration even though she doesn’t like it. However, psychologically she has to feel that it wasn’t ’her fault’ that she ate, and she needs to feel that I made her do it, otherwise she feels horrendously guilty. So she can’t take responsibility at all, I have to sit with her and serve her food.

@WaitingForMojo I'm sure it feels like it's taking forever, and being tied to the house is very frustrating, but it is SO GOOD that she is accepting the meal plan - thanks to all your encouragement and support. Many sufferers find that the thoughts start to resolve with sufficient nutrition - and of course eating 3+3 is itself a kind of exposure therapy. My DD still has the thoughts, but she says, with the nutrition, she now feels strong enough to fight them. You are doing everything right. Hang on in there xxx

@WoodenTrain I'm glad the Ed team will take it further as you were treated in a shocking way.

Does anyone else’s child not engage with therapy? DS ‘sleeps’ through every appointment, he’s not talking at home either now. He has increased his intake and is doing a little better physically. I’m worried he will get stuck in a cycle of eating just enough to stay out of hospital but never actually improve because he won’t engage.

@NCTDN Yes, I’m still quite upset/angry about it.

DD is a bit like that. she was admitted to hospital a year ago as emergency as her body could cope anymore. we were in a month until physically stable (general ward) but since then we are stuck. she isn't following the plan but eats her own version. Gets incredibly aggressive and violent when we want to push food. doesn't engage in sessions with the ED team. She has also depression and anxiety, highly likely autistic (on waiting list for assessment). She doesn't engage with anyone. it's incredibly hard to reach her. She loves school and just eats enough to maintain a weight to attend full time (she spent a lot of time not being able to attend due to low weight last year). it's all incredibly frustrating. she is a functioning anorexic and the system (with it's substandard support available) is enabling her 😥

Wooden my dd never engaged in therapy, in the early days she did the same as your Ds and curled up in a ball and refused to look or talk to anyone. In the end I used Camhs as a support for me and just put all my focus in getting food into dd.

Ultimately that's all she needed to recover.

Dd never had supervision at school, I broke a deal with her that as long as I was satisfied that her weight was going in the right direction I'd trust her to eat her lunch at school.

It was risky and I doubt she ate everything she was meant to eat but her weight did incrementally increase so I didn't push it.

This is exactly what my dd was like for probably two years of more. It was like having a baby or toddler and I had to take food and snacks wherever we went.

I did gradually build up to eating out but it was painful and miserable to watch how hard it was for dd. That said the more we did it the easier it got..

It does feel relentless when you're in the trenches but step by tiny step it does get easier.

It’s just so difficult and frustrating especially when they won’t engage. But glad it’s not just my DS, sounds like ED team will be used to dealing with teens who don’t engage.

@WoodenTrain The team will absolutely be used to very ill patients not engaging. It's probably no consolation, but my DD once threw a cup of Fortisip over the consultant psychiatrist!

Non engagement was also a problem for us although DD always turned up for her appointments. She just didn’t engage with the therapists and was persistently discharged. Unfortunately denial of AN and lack of engagement seems to be part of the illness. It wasn’t until things became physically very difficult and painful that she had had enough and decided to actively engage in recovery. But even then progress is slow. We were always hugely frustrated by the inability of the therapists to alter their approach in order to engage with our DD but we also recognise that the NHS is in crisis and currently only able to offer crisis care particularly for MH.

Morning all hope everyone is doing ok. We have our weekly CAMHS app today does anyone else dread these apps my DD comes out of there crying and it take ls me a couple of days to get myself together again after seeing her so upset. This is only our 3 bloody app I’m hoping it gets better with time