Support thread 10 for parents of young people with an eating disorder

[Lottsbiffandsmudge]

Hi guys
Here is our new thread. I will add a link to it in Thread 9

@Catsback the approach that Ed teams take is generally something called 'family based treatment', this has the best evidence for good outcomes in teens.

There are three phases to this, and in the first phase the goal is to enable / support the parents to 're-feed' their relative. So you can get started on trying to implement this straight away, as this is what they will be getting you to do when they open your case.

There is not likely to be other effective psychological intervention at this stage, as the brain has been malnourished, and cannot engage in the kind of work needed for the person themselves to make any changes to their eating. Seeing a therapist is not likely to be helpful at this point in getting the person to understand or make changes. There is a good ted talk about the fact that the brain is physically changed by having an eating disorder, and it takes quite a lot time for it to recover. Fat, especially animal fat (meat, dairy etc) is essential for the brain to recover.

The essential elements of FBT in the first phase are:

• food is prepared by parents without any input from the person with the Ed, they cannot be involved in the planning, shopping, cooking or plating the food
• the person with Ed comes to the table and eats everything on the plate, however long this takes. There is no leaving anything. The person doesn't leave the room, or avoid the meal. Eva musby has a brilliant chapter on what to say and do when this gets hard. Being supportive and compassionate is the approach, understanding that you are asking your child to do something terrifying.
• There is no negotiating
• there are 3 meals and 3 snacks every day. Again, the person is required to eat everything.
• the goal is for the person to put on between 0.5 and 1kg per week

It is very hard in the first few weeks. This is because the eating disorder is now cornered, and comes out fighting. My dd was completely distressed at eating all the time, and we saw behaviours I wouldn't have expected like she started to hide food - Ed is very sneaky.

If your daughter has been eating very few calories for some time, you need to make sure she is having physical health checks - blood tests, sitting and standing blood pressure, and ecg. The refeeding might need to start at a certain level of calorie and build up, but the basic approach of being required to eat is still the same. I hide a lot of extra calories in things using butter, double cream and oil, but you might need to go more slowly.

Everything I've picked up is that recovery from an Ed cannot happen without re-establishing nutrition. This is the keystone to everything.

The sooner you can get started, the better for your daughter, and hopefully the wait won't be too long for professional support to do all of this. And we are here to support you on this thread too

@Catsback hi Cats - I have that EM book (pretty sure it's that one) old be happy to post it to you

How does the treatment differ if AN is part of an ASD? We had a review today and the psychiatrist things this is a strong possibility (DD being on the spectrum). Consultant explained a few things but they went over my head... We are going back next month but if anyone has insight in the meantime...🙏

@Curlyhairedassasin my dd13 was diagnosed with AN in April she is 108 wfh and they are hoping to discharge in January although she had lost weight at her last appointment. At the last appointment they said that they had been monitoring DD and they wanted to put in a referral to have her assessed for ASD. They said AN and ASD are very closely linked and some of DD eating behaviours were possibly because of ASD and not AN

...They said AN and ASD are very closely linked and some of DD eating behaviours were possibly because of ASD and not AN

thanks mum2, think the consultant said something along those lines too. Just trying to understand how this may affect treatment.

@Curlyhairedassasin have you had a look at the PEACE pathway https://www.peacepathway.org/
I don't have direct experience of ASD and AN, my DD was assessed for autism on the ward but was found not to meet the criteria. She does display quite a few traits which is why they were keen to assess and i am certain she is neurodiverse. I don't think traditional FBT is considered to be as effective with ASD?

thanks granny, will have a look. and yes, FTB is not really working for us. We are really trying but are stuck.

Hi, my daughter has an ED, we're about 9 months in. Can I get some advice from you about how school can support her with supervised lunches? They've been pretty useless so far with the receptionist in particular being actively unhelpful 😡

We had to go into school in the summer for supervised lunches and sit in the carpark. Now we're having to go back to that but if school can help with some that would be helpful, though I'm struggling to imagine this.

So if anyone has any examples of what schools have done to help, I'd love to know! Thanks

@Curlyhairedassasin Pooky Knightsmith worth a look too https://www.pookyknightsmith.com/keynote-autism-and-eating-disorders/
To be honest I don't know how much the treatment, as advised by your ED team, would vary if ASD was diagnosed. We were told that in our health board it would be the same treatment process although some concessions might be made such as giving some flexibility/choice re meals or giving more time to adjust to changes etc. However your team may be different.

@Eyelashesoffire my DD's (primary) school offer a separate room where she can go either alone or with her friends to eat lunch, and a TA to be present and keep an eye on her. If she chooses to eat in the lunch hall the same TA hovers nearby to check food isn't disposed of etc.

Just to add, the TA is only there to report back to me and doesn't actually comment to DD on what she's eaten.

@Eyelashesoffire - My daughter will be getting support from her TA when she goes back after half term. I’m not sure what that’s going to look like yet. I’ve been at school every day to support her so far but it’s unsustainable. Her school is almost 30 miles away and I’m having to stay in another town all day and not able to work.

@Curlyhairedassasin I’d be interested to know this, too. DD is also autistic. I feel it might mean adapted meals to take account of sensory issues, also motivation being more affected by / about rigidity of thought or involving numbers rather than body image / peer issues? Although these are just guesses, and certainly don’t wholly fit in our situation.

@myrtleWilson Thank you - that is very kind!

@Eyelashesoffire DD is at secondary and DD has supervised snack and lunch. I make a lunch box. Someone from the pastoral care team takes it off her in the morning and checks it (things go occasionally missing 🙄) and then she goes to the teachers office (could be the room of the pastoral care team) for lunch and snack. Someone is always there and she just eats there with a member of staff present. DD cannot eat unsupervised.

I get a call once or twice a week to let me know how eating is going. but I tend to get a call the same day if there were issues. I have to say they are really good with us.

@Curlyhairedassasin @Catsback @GrannyRoberts thanks so much for your replies. I will approach the school but DD is desperate to fit in and she won't want to do anything different to her friends. I'm not sure how it would work.

She's still attending school, but she's dropped from 92 WFH to 86 in 3 weeks so if she drops much more she won't be able to go. Their cut off is around 80 for staying at home.

I've got another question! Do your child's friends know they are ill? DD is in denial that she's ill, so she won't have told them. She went to a sleepover last night on the condition she came home for a supervised dinner, she was worried about them thinking she was weird. The irony is all her friends are quirky to say the least!

We are waiting for an autism assessment, though right now I'm not sure what behaviours are autism and what is ED.

@Eyelashesoffire The good friends know. Sleepovers etc are out of question though due to eating.

DD can take a friend with her to the teacher's room and does most days. She has 2-3 friends in school who take turns so she is not the only kid in the staff room.

That is a big drop in WFH in s short space!

Morning everyone, does anyone have a formula or a tool I can use to work out WFH please? I tried looking online but what I found online I found tricky. TIA

@Catsback I have the calculator on my phone. there was a download link in one of the older threads. you can pm me. I think without WFH calculator it's not easy to do.

@Eyelashesoffire my DD was in hospital for 4 months and a couple of her good friends visited her there. So yes there are a handful of people that know (I.e. that she told!). But I know others that haven't told anyone. The parents of those good friends also know and it makes it so much easier for my DD to go to friends houses for a few hours. She's only 11 so it's quite normal for parents to be "around ' at snack time. She had evening snack at a friend's house the other day - mum was happy to give all the girls supper at the prescribed time and hung out with them while they ate.

@Curlyhairedassasin I don't know how to pm you but I please have the wfh download/app

@Proseccoismyfriend there was a link in a thread a while ago. It wasn't the app store. I just cannot share the app. You need to find the link. I can message you and you can reply.

If you could message I'd really appreciate it

I messaged you!

@Proseccoismyfriend

Hi can anyone give any advice on sleep and tiredness affecting the ED?

DD had a sleepover with friends last night, she's come home, had a small breakfast and gone straight to bed.

But she's got another sleepover planned for tonight with a different group of friends! I'm not happy at all.

I wonder if being totally exhausted will give the ED a better hold and it's best not to have another night with no sleep. I know these friends well and there's no way she'll sleep.

I've got to wake her up this afternoon for lunch and a medical monitoring appointment. Then she can go back to sleep but I don't feel happy about this at all.

DD was strangely not (obviously) more tired than usually when she was eating very little. At least not that we noted.

DD is not allowed sleepovers atm due to eating and the need for meal support.

If she doesn't eat, there are consequences...it's that simple esp with the big recent weight drop you mentioned above.