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

I'm going to just tell her that's what she needs to do - we've our assessment next Thursday where they are doing all of that
GP just referred us!
I have however been sent a 90 page document with meal ideas, plate size, calorie count which is actually very good so I shall be doing that and with the help on here 3 meals and 3 snacks a day and telling her she needs to eat

Not looking forward to forcing her to eat as until
Now I haven't been forceful

@Cantfindthewordsddstruggling there is a helpful Facebook page I'm on called ATDTfb (it's from the FEAST group 'around the dinner table').

I've learned a lot of helpful info from that page, and specifically about 'state not weight'. To a huge extent bmi and wfh are unhelpful for people who have ed. As you say they are based on population statistics and not on individual information, and their creation historically often have non scientific other (eg political) aims. I think you're right that 100 wfh is weight and height falling at exactly the 50th percentile for a person of that age, and so doesn't account for anyone who is a different height or weight.

If your daughter is refusing to gain more weight, that's probably an ed behaviour. I've cut and pasted a response from someone on that Facebook page below about what 'state not weight' looks like:

^*WFH is generic and thus meaningless-so bizarre to assert that all people of a certain height and age should weigh the same. No wonder outcomes are not great.

State not weight and weight influences state.

We did have growth charts and my daughter needed a full 10% above where she “should” be.

What I say recovery target is:

Able to eat all foods freely and above minimums (different for ARFID)

A healthy relationship with movement that includes rest and other stress relievers than exercise

No behaviors and significantly reduced thoughts that are not acted upon

Body image issues no longer pathological (return at least to socially normed body discontent which can benefit from therapy)

Developmentally appropriate insight into their eating disorder and need to engage in relapse prevention long term*^

@summertimesadness24 - it's very hard, I'd recommend Eva musby YouTube videos where she explains how to do this compositional but firmly. As you start to be firmer, the ed will begin to fight back, so don't worry if it gets harder before it gets easier. And you can only do your best, I've posted on here after times when I've completely lost myself and my temper! But brain recovery has to happen before anything else can - your dd is very unlikely to be able to start eating more by herself.

Hope it's going ok today x

Thank you I shall take a look at that later

We are currently at the walk in centre
School called to say she almost collapsed in class, felt dizzy, shaking and blurred vision
We gave her a breakfast and watched her eat it so she's definitely eaten
My husband also made her a smoothie which was poured down the sink but we didn't realise until she had left for school as the remainder was still in the sink

@summertimesadness24

Your DD will need an ECG and bloods done as well as blood pressure check (sitting and standing). Not sure how much walk in can do or knows about Anorexia but if they don't do much, I would be tempted to take her to a&e. There are protocols for certain checks which should be done. A few of our DC were admitted that way.

Oh no, hope she is ok, I know other parents have also had to go to a&e / walk in, and it's been positive (after the initial shock) in understanding where things are physically and getting better input from services.

Good point - the meeds checklist is what they should follow for the checks that curly has mentioned. It's here www.rcpsych.ac.uk/improving-care/campaigning-for-better-mental-health-policy/college-reports/2022-college-reports/cr233

Summertime your dd needs bloods, an ecg, lying and standing BP and pulse. I second the others, you're better off going to a&e as it sounds like her heart is already struggling.

Depending on how much she's been (or not been) eating she may be at risk of refeeding syndrome so would need constant medical supervision while starting 3 plus 3.

The walk in is very good - she's seen a nurse and a doctor - they've done blood pressure standing and sitting and we've been sent to the pathology for urgent bloods

It's a small hospital with nurses and doctors but they can refer to go to main hospital if needed

She had no dizzy spells when doing the blood pressure and obs were good

1st pic is sitting
2nd is standing
He made her stand for a few mins and did 3 lots of measures
He seemed to be very througher and was talking about pots also ? But also agreed linked to food

no idea if these numbers are good or bad. Did you get an ECG too? With anorexia, the heart often starts to struggle and there can be obvious signs on the ECG (DD had a prolonged QT phase (or something like that) for example). I would insist on an ECG too.

I don't know about the numbers either although it might say in that meeds thing. Defo ask for an ecg, there is a very specific issue that can happen with the qt interval (or something).

I can't see the pulse rate on that machine, but that's another indicator of a struggling heart if it's low.

Hope all is ok x

@greydoor thanks for the info from the FB group - are they saying you need to keep gaining weight until their state is better? We're at just over 100 WFH now and in some ways she's in a better place mentally. This was roughly her previous weight. However she is obsessed with having unsupervised lunches, she says she hates lying to her friends about where she is going every day and feels isolated. I suspect this is the ED talking. But in discussions with CAMHS we are going to try 1 day a week unsupervised. I'm a bit apprehensive not sure if it's too early.

@Eyelashesoffire I've read this a few times and it explains a bit more about the state not weight thing, but there are quite a few few other resources about it out there too www.feast-ed.org/when-in-doubt-aim-higher-what-i-wish-id-known-about-target-weights-in-recovery/#:~:text=Focus%20on%20“state%2C%20not%20weight,inclusive%20definitions%20of%20“health.”

More independence around food is the second stage of fbt, so this does need to happen at some point. My dd is the same about being self conscious about what she tells her friends. But I guess it's a really tricky balance in terms of whether your dd is near to recovery, or still in the middle of it...

Thanks @greydoor I read that article and it was really helpful. I really liked the diagram of the hill / valley, it made sense to me. I have no idea if DD is near to recovery! She's definitely eating more (around 3000 calories a day), getting herself snacks and not complaining at all about eating anymore. If she's not keen on something she'll ask for an alternative. I could live like we are now. It's just the supervised lunches that is the sticking point. She has meltdowns to the point of panic attacks at some points in the past. We'll have to see what happens 🤷🏻

Bit of a dilemma here at the moment. DD is due to go on a residential school trip in a couple of months. She's currently mostly eating her meal plan and has steadily gained weight, currently up to 103% WFH (historic growth curve suggests 98-102% is her natural range). She's back at a school full time and back to once weekly swimming lessons. The residential would be 4 nights away at an activity centre. No parent contact allowed so I'd have no idea how she was doing. The head teacher has said she is happy to keep an eye on things. There will be three meals a day provided and I believe we can pack snacks etc. I'm meeting with the head next week to chat through it all and better understand the logistics. I should know more then, about whether she would supervise meals, snacks etc.

Her ED team think we should give it a go, subject to understanding a bit more about the logistics of it all. DD is keen. I think it could be really good for her confidence etc. She has no problem eating with people, and I think we could see the menu in advance to check there are suitable options available. But on the flip side I really worry that if things go badly this could really set her back. If for example she doesn't have to finish all her food, or misses some snacks. I can well imagine her coming back and refusing aspects of her plan again. But at some point we will have to give her a chance, and she will really be gutted to miss it and I honestly think she deserves to go. I'm so torn! WWYD?

@Eyelashesoffire the above partly in response to your query about allowing more independence. It sounds as though your DD is doing well. Do you have regular weigh ins? Could you trial unsupervised lunches building up from a day or two a week, on the understanding that if weight drops then its back to supervision?

@Eyelashesoffire the above partly in response to your query about allowing more independence. It sounds as though your DD is doing well. Do you have regular weigh ins? Could you trial unsupervised lunches building up from a day or two a week, on the understanding that if weight drops then its back to supervision?

@GrannyRoberts sounds like we're in a similar place! It's so hard to let go, even a little bit. We do have weekly weigh ins. So yes that's the plan, start with 1 day, any loss and it's back to full supervised lunches. But like you said it will be hard to claw back if they backslide. Supervised lunches have been very tricky to implement for us, lots of resistance and not coming out to the car, lots of distress. So having to go backwards would be emotionally very hard.

The residential is a big step but it could be good Does your DD have clear plans in her head about what will be the hard points and what she'll do? Do any of your Dd's friends know about the ED? My friend was in a similar position and the teachers were useless unfortunately , does the HT really get it?

@Eyelashesoffire I think the HT gets it, but will get a better sense of that after the meeting next week. She's been incredibly supportive so far. One of the TAs who currently keeps an eye during snack times is also going so I'm hoping some level of supervision will be possible. 3 of DD's friends know about the ED, they visited her in hospital and have been really supportive. One friend in particular is quite vigilant and has alerted her parents to a couple of issues that DD has had at school (anxiety related) which has then been relayed to me. I think we need to work through with DD what might be hard and what she can do if things become tricky, identify an adult who she can go to etc. She gets a lot of anxiety at bedtime and this is something we'll need to work through with her as she won't have us there to reassure her. It's a tough call, but I really want to let her go.
Your plan with lunches sounds a good one, hopefully she's ready and manages fine, but if not, one day a week may not be too hard to claw back? It's so hard to think of letting go even for one meal! We're still supervising school lunches but DD has been out for lunch or dinner with her friends 2 or 3 times over the last couple of months (with an in-the-know adult present) and seems to have managed.

GrannyRoberts

With something like a school trip or holiday it's battle between letting them have some independence and some normal FUN for their age, and coming to terms with the fact there may be some fewer cals eaten and the risk of some pushback once home.

For 4 days it sounds like it's worth the risk and I'm sure you have the tools ready to come out fighting ED if it does rear it's ugly head when dd gets home 💪

Ideally the trip will give her a boost and make her realise she needs to stay fit and healthy in order to do more trips in the future.

In regards to the bedtime anxiety, my dd was terribly anxious about being away from home even way before ED so I have some tips.

Write letters to read before bed each night. Include loads of encouragement about how well she's doing and a countdown until how long until she gets home. Ask her to write letters to you as well, and ask for a toy to cuddle. My dd likes to know that I'll miss her 😆

Pack something of yours such as a tshirt or small cuddly toy for her to 'look after' and cuddle. Maybe spray some of your perfume on it for her.

Tell her you'll go shopping to choose her a little 'welcome home' present that you'll hide in her bedroom for her return.

Arrange something special to do together the weekend after the trip and refer to it a lot in your letters.

Hopefully she'll have so much fun and be so tired by bedtime that she'll easily fall asleep! 😴 xx

@BagpussSaggyOldClothCat thank you I absolutely love those ideas! When she was inpatient on home passes she brought little notes from the nurses home, basically "you've got this" type messages and she would often refer to them, so the letter idea in particular is perfect. I do agree that for just a few days it probably is worth it. It's a milestone trip for them and would be really sad if she missed out.

GrannyRoberts

Absolutely. This illness robs so much from them so it's important that they can do as much as possible if they really want to, as long as they have the right support.

This is generally a long-term illness and gaining experience and finding coping strategies to cope independently is vital. They'll never get that if they don't get the chance.

I'm learning to let go a little. Dd goes out for dinner with friends at weekends and I'm sure what she orders at mcdonald's is less cals than I'd make her at home, but she's out with friends and living her life and that's brilliant for her.

Well 1st unsupervised lunch today and she didn't eat it 😞 she hasn't told us this, she has lied and said she ate it all. Her next weigh-in is next Fri. So we'll see what the scales say.

I don't want to allow anymore unsupervised lunches but there's 2 days coming up in the next couple of weeks where we can't supervise.

I feel like any weight loss or maintenance is just prolonging the agony. She needs to put on more weight before she's ready? How will she ever be ready if she has no motivation to eat unsupervised???