Teen Eating Disorders Thread 4

[SoTiredNeedHoliday]

Starting a new thread, no 3 is full

@SoTiredNeedHoliday sorry that wasn't clear. I meant the schoen clinic. Yes she did say she was jealous of the people in hospital. This morning's breakfast mainly ended up in the bin so I feel it's A and E tomorrow for us. I did say I'd give her to Tuesday as I have to take DD1 for a camhs MH assessment and DH works away on a Monday but I might have to rethink that if the eating is poor today. Which it will be as she's just not able to do it.

Does anyone have any experience of negotiating with camhs about a return to school before 85%?
DD currently 82, doing well and committed to her recovery, however she’s very depressed at being out of school and desperately wants to return. She loves school and it isn’t a source of anxiety for her.
She’s happy to eat supervised and school are also happy with this. She’s even happy to return part time.
The ED nurse we see seems to have set this figure of 85% without really looking at the wider picture.
Any advice as we have a call this morning and I’m wondering if it’s worth me negotiating a return to school for DD.
Thanks in advance .
@DarkBlueEyes you sound in a really hard place .. I’m so sorry.

The fear of falling behind and losing her friends is making her anxious and withdrawn. She’s also better at eating with others that are eating and we think it will be a destruction for her.

@bettybarkalot123 the psych at the Schoen said DD could go to school at 79% as her mental state will be massively impacted by not going based on last time. But she cannot lose any more - which she will do at this rate.

CAMHS back in May let her go in at 80.44% for that reason. I dont' see why your DD can't go in and personally I would be sending her. Definitely negotiate a return to school.

@Bettybarkalot123 I think the WFH % when they are well enough to go to school should be different for every child, just as their 'weight restored' target % should be different.

@DarkBlueEyes don't forget that the Schoen are also have the Newbridge clinic. Though personally if you're self-funding I would be going to A&E and having my toes and fingers crossed that DD gets the shock she needs to change. Even on the paediatric ward they will tube feed DD if she doesn't eat her meals provided.

We've agreed that we'll take her tomorrow if she doesn't eat her breakfast without smearing it and spitting it out (she loses around 50%doing this)so yes, we'll be there tomorrow x

@DarkBlueEyes glad you have finally managed to get some meds for your DD. Will you have to keep that quiet from CAMH’s though if you got them via the private clinic? I know that Surrey CAMH’s are really funny about you seeking additional support outside of what their offering (shit though it is!)

@Bettybarkalot123 I think that each NHS CCG varies a bit. But I agree with Sotired in that it should really be individual. My DD went back when she was 84% wfh. They would have let her go back a bit earlier but she didn’t gain any weight in the 3 weeks after she left hospital and they wanted to see an upward trajectory before they allowed her back. I hope you got the outcome you wanted in your meeting this morning.

DD seems to be doing okay at school. She sat with a different group for lunch yesterday as the friend with ED continues to eat nothing or just a bowl of cucumber for lunch. She had her therapy session last night, the first one in over a month for one reason or another. I think she really needed it last night and had lots to unload! Still no side effects to speak of on the meds. Her dosage went up yesterday so we will see if that starts to have more of an effect.

Oh and lastly she was telling me last night about a party she’s been invited to in October for a boy’s (that they used to like each other) 16th birthday. There’s going to be about 20 people going and there will be a hot tub. Hot tub aside, I think she’s actually a little bit excited about going. This is amazing as she’s been terrified to even go out with her close friends all summer. So I think being back at school and having no choice but to be around everyone has actually done her some good.

Think I've messed up today

When DD was discharged from CAHMS she was placed in Adults Personality team not ED (the right choice for her).

When she relapsed a few weeks ago we asked for a referral back into Adults. Today the GP has rung DD at school to book an appt for bloods/weight. DD has made booking. She has previously told us and her HOY that she doesn't want to be weighed as the numbers will trigger her.

She doesn't need to know the weight at the appointment but I worry to desire to see the numbers will be too much for her and will trigger an ED response. Secondly, the baseline is for adult ED referral which will be based on BMI. If she doesn't meet the criteria, this too will trigger an ED response.

DD has done all of the above in a positive way thinking - rightly - that this is her acknowledging she's struggling with eating and seeking help. I think I've ballsed up by telling her she doesn't need to do the appt if she doesn't want. (not because she doesn't need help but because the potential consequences I can picture). She's been in tears on phone and I feel awful..

Thanks for the advice everyone. DD feels she’s being forgotten about, she’s anxious about falling behind as well. She now does her school work at home all day, even though I’ve told her she doesn’t have to, I’ve reassured her that she will catch up. She says it’s a distraction from the ED thoughts.

My gut instinct as a parent is that she will be happier in school, with adjustments and the right support AND the proviso that it’s reviewed each week. Even just part time.. for maths, science and English would be good.
Meeting is at lunchtime. I’ll let you know how it goes.
Thanks again.

@Bettybarkalot123 sounds like you have found your leverage against the ED! For our DD she also was worried about falling behind etc, but if she didn't eat every meal and every snack she didn't get to go onto her computer to work.

So at morning snack for instance if she left something the computer was shutdown until it was eaten. Same thing all day at every meal.
Health was more important than education etc etc

Definitely - every meal and every snack, we say positively.. this is what’s going to get you back to school, back riding, going to pony club, back with your friends and healthy again.
We take DDs phone off her if she doesn’t finish meals and snacks. She has to then earn it back at the next snack/meal. The only thing is I do think I’m holding her back and am only offering the meals and snacks that are “safest” for her yet still on the plan, for example hula hoops rather than a buttered crumpet.. not sure if it matters maybe once she’s at a healthier weight I can start introducing more variety.
I’ve noticed she is often down and cries after eating but she’s not as distressed, in the early weeks she was distressed- shouting and hitting herself, clicking her fingers and really agitated, now she’s just sad.

Yesterday I came up and popped her snack on her desk and then went and lay on her bed to chat while she ate. She picked up the snack bar and started eating it without any prompt from me… a small thing but progress.

CAMHS let DD go back full time unsupervised at 80%. In retrospect this wasn't great as she didn't eat her morning snack or lunch - I don't know what crazy naivety made us think she would. However, at 80% she was physically fine - it's only 5% under her highest normal weight, other than the brief blip of lockdown over-snacking that got her up to 90% and triggered this whole stupid restricting.

Completely agree with @SoTiredNeedHoliday that these targets have to be individualised. It's a real disservice to many, many girls to assume they're fine just because they're a certain WFH and feeds into the myth of all anorexics being painfully thin. One person's 80 is another's 110.

DD is the same, desperate to go back but the psychiatrist is going to do her a roadmap of what needs to happen for her to go back part-time. It won't include specific weights/WFH, I'm hoping it's more about progress. School has been useful as a leverage for us in the past.

@Bettybarkalot123 that is great progress re. the snack!

I bought some coconut yoghurt today as she'd asked for one that had lowest grams of sugar (which it did), but then was furious as it was also high calorie and wanted it thrown away. I said I'd eat it instead and its best-before date wasn't until 1 November anyway. She said 'oh keep it as maybe then I won't care about calories so much'. This is my breakthrough of the day!

@DarkBlueEyes to offer a slightly different perspective, we didn't find going to A&E particularly life-changing.

DD had drunk alcohol (on top of meds) and vomited on last day of holiday then refused to eat or drink the day we flew back. We took her to A&E as she was dehydrated and her blood sugars were low. It's a normally v busy central London hospital, but they were deserted and kept her on a paediatric ward for two nights and was a shock to her (so that bit was useful). However, they didn't know much about ED - the nurses said things like 'try a sip of orange squash but don't worry if you can't manage it'. We had bring in all her food and oversee, helped by a brilliant nurse whose sister had an ED.

They were implacably opposed to refeeding. However, her desperation to get out meant she did eat according to her meal plan and we didn't have to worry about refeeding as her bloods were being monitored.

@Bettybarkalot123 that’s great that your DD is so focused on getting back to school and not missing work. You can definitely use that as your leverage! DD was exactly the same. She is very high-achieving and doing well at school is the one single thing that trumps her desire to not eat. She has been 100% compliant because of this.

Also DD really struggled with her concentration/revision for her end of Year 10 exams at the end of last term as a direct result of AN. This has made her determined that she wants to be much better mentally and be better focused for her mocks in November. So she has a goal and that is fine by me!

@Valleyofthedollymix that is not a good response from the hospital! We were at St George for a week on a normal paed ward. The nurses were all trained up on the meal plan and the substitute if meal not eaten and then tube feeding if they wouldn't eat or drink voluntarily. They had graded meal plans for proper refeeding and every meal and snack was supervised either by me or by a nurse. They were really strict about it.

Do you think as there was alcohol involved in your DD's admission that they didn't see her as AN? There were about 6 AN girls on normal paed ward in St Georges, London while we were there 5 months ago. St Georges has a specialist ED unit and it also has a CAMHS unit attached as well, which is why we went to that specific hospital, we knew DD wouldn't get into the unit (its full) but had been advised that it was the place to go should we need to take DD. @DarkBlueEyes maybe worth considering this in light of Valley's comments.

Sorry I miswrote - they were implacably opposed to tube feeding it should have read, rather than refeeding. Their argument, which I do see, is that tube feeding is a short-term solution that can create more issues than it solves. I'm always tempted by a NGT as I'm so tired of the battles, but I do see the argument that you don't want a situation where they learn to eat in hospital/via a tube rather than in normal life.

They definitely saw her as an AN patient as the alcohol wasn't the issue so much as the not eating that day. They would have kept her in longer. However, they don't have an ED unit attached which might explain it.

It was also a bank holiday...

Oh in answer to @Bettybarkalot123 re. WFH and going back to school, I've just got the psychiatrist's roadmap for DD.

Part-time school at 78.5%
Full time and with reduced meal supervision but also with reduced sport, 86%
Near normality, 93%

She's never actually been anywhere near 93% in her life so personally I'm thinking more like between 86-90 but we'll see where her head is.

Our experience with DD at St Peters in Chertsey was the same as @SoTiredNeedHoliday. There were around 5 or 6 girls on the children’s ward for ED’s. DD saw the dietitian on her first full day and the meal plan was explained, started off lower calorie and increased day by day. A nurse (as well as me) sat and supervised DD eating all meals and she had a strict 30 mins to finish her meal by. If the meal was not finished in that time a replacement drink was offered and then NG tube last resort. There were some girls there on the tube. No going to the toilet for an hour after meals. She was on total bed rest and had to be wheeled to the toilet in a wheelchair. Hooked up to a heart monitor overnight to monitor if her heart rate dropped too low. It was definitely an experience DD doesn’t ever wish to repeat!

The ED nurse won’t budge on the 85%. Currently DD is 81%.
She was saying things like DD will need to gradually start building her legs back up and getting used to walking. She walks the dog for 20 mins a day and spends the rest of the day doing school work because she doesn’t want to fall behind.
I could cry, it seems like a target we’re never going to get to.
If she’s 81% now and 44.8 kg then how heavy will she have to be to go back to school. I can’t work it out and she wouldn’t tell me.
The GP said DDs health is biochemically fine, her bloods, bp, pulse are all within the normal range.

Is it worth me emailing the consultant who is overseeing DDs care and setting out my concerns to them?

@Bettybarkalot123 I use this to work out WFH manually. You can fiddle around calculating higher weight in kgs to give you 85%.

I know health comes first but it’s her gcse year. All her hard work will be undone.

Sorry I realise you can’t actually see the figures that well so trying again…

I would say probably a couple of kgs though.

Thanks that really helpful. Will work it out later. Sorry for being such a complainer!

@Bettybarkalot123 doing the maths I think your daughter's 100% WFH is almost exactly the same as my dd's (54.7kg). Which means she'd have to be 46.5 to go back to school (which is considerably higher than my DD's 43 for part-time but similar to her goal for full time with v reduced sport).

I work out the 50th centile (i.e. 100% WFH) by using the NHS BMI calculator. My dd is a few months short of 15 and 166cm tall.

It sounds harsh of the nurse but of course I don't know your DD and what weight she should be 'naturally'. I would email the consultant as it's so different to what both the CAMHS and our private guidance has been.