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 your dd sounds exactly like my dd was at the beginning. A 2kg loss is a lot and you are right to be concerned.

She needs to see a Dr urgently, they need to check all her physical observations including bloods. Insist she is referred to the Camhs ED service.

Start reading up on FBT as this is the main treatment for EDs, basically it means you take full control of all your dds food choices and she has to eat 3 meals plus 3 snacks a day.

It is vital your dd does not lose any more weight so you need to act on this now.

Grey I probably would pull her up on general rudeness tbh, I know it's not really them when they're being horrible but I don't see anorexia should have a complete get out of jail free card! I think sometimes they become so self absorbed they literally can't think about other people's feelings so reminding them that other people matter isn't always a bad thing.

It's tricky though when you know they already feel like shit you don't want them to feel even worse 😕

Greydoor I would speak to her about being rude. I know they’re having an awful time and feel terrible in themselves but I think it doesn’t do any harm to remind them of other peoples feelings.
Catsback this is exactly how things started for us too. And I sat in the school car park every day as well to ensure she had lunch. She maintained a low but stable weight for a couple of years. She tried CBT but didn’t engage/didn’t work for her. Now her weight is dangerously low and proving very difficult to turn around. The sooner you can get effective help for your DD the better. You may have to fight for it. Services are currently very stretched but everyone knows that early intervention is key so be persistent and try not to be fobbed off. Psycho education is really helpful too so have a look at BEAT and FEAST and sign up for carers workshops. Your ED service may have a support group which could be helpful and this thread is a great source of information and support

@boltonmum that sounds truly horrific. Thank you for your advice.

We’ve already been through the mill with our daughter. She started self harming and has made two serious suicide attempts over the last three years. She’s been out of school for two years, and has just returned this month (different place, fought to be named on her EHCP). She’s been engaging (even if it’s rage), but now she’s just gone quiet…We’re scared.

CrackersCheeseAndWinePlease

It's good that she feels she still needs treatment and wants to get better. It's difficult when they miss out a whole meal as that's a long time between eating, like intermittent fasting. My dd was like this with lunch but we've gradually got her eating a small lunch and hopefully can build on it. I can relate to the change in your dd as mine also developed severe anxiety as a result of the anorexia. She's weight restored and meds help so there has been improvement but still has days when she can't leave the house or face anyone. It's heartbreaking.

Catsback

Welcome. Yes that's also very similar to my dds story. The sooner she gets seen the better. The goal is to turn it around quickly before she loses anymore weight. So sorry to hear she's already had a lot of MH issues and this is another one to add to the list.

WorriedmamaToT

Best of luck today at the GP. Some GPs aren't great with ED and many if us have been fobbed off at the first appointment. Don't be put off and insist on referral or ask to see a different GP if you're coming across road blocks.

Greydoor

The nastiness is horrible to witness. Awful when it's to parents but must be especially hard for you to see it directed at well meaning siblings. For their sake you need to pull dd up on it and show them you don't tolerate it, but also keep reminding them that dd isn't really herself at the moment.

Proseccoismyfriend

Yay for the gain. Playing it down is what we've done with my dd all along. Even something like 'You're doing well' would send her spiralling so nothing is said about weight at all now. Hope all goes well at the assessment. It can be quite a long and tiring appointment so look after yourselves afterwards and take time to take it all in and get the meal plan going.

@Proseccoismyfriend - oh I'm so pleased for you, that must feel like a relief, hope this is the tanker starting to turn. Hope the appointment goes ok later this week and you get some more advice and support. I'm wondering now about whether hypnosis might help my dd, do you know if the person you saw works remotely as well?

@WorriedmamaToT - hope it goes ok today with the GP.

@Catsback - my dd said she couldn't stop thinking about food, the thoughts of what she had eaten or might have to eat were so dominant and loud she couldn't sleep. It does sound like she needs to be seen asap. Sorry this is coming on the back of other mh struggles, hope that you can get the support you need to turn things around. There is quite a lot of good info out there about family based treatment so you can get started straight away with the first phase of weight / nutrition restoration.

Thanks for the advice about rudeness. I'm going to try and find a time to talk to her gently about it. It's so astounding how self centred the Ed has made her, and I get that it's not her doing it on purpose, but I do think we need to try and remind her that other people's feelings matter too.

Re the rudeness. My DD had no capacity for thinking of any one else's feelings for months on end. I did try to pull her up occasionally but it was more frustrating to see that it still had no impact. When you are that anxious you can only focus on yourself...it's a safety mechanism. Once I saw that I let it go and just focused on giving my other DD a space to vent and hate the behaviour (not the sister)

@WorriedmamaToT how old is your DD. My 16 year old (so impossible to force) refused to see the GP until she saw a particular lady at the practice for a shoulder injury. She was so lovely I managed to persuade DD to see her about the ED behaviours.That doctor literally saved my daughter. Is there someone at the practice your DD would connect with

@greydoor - do I just start a treatment plan right away at home? I read a handout by Eva Musby which said to take control, and I have been doing that. Dd does cry, but eats eventually. But I haven’t been insisting on enough for her to regain the weight - that would be entirely more difficult. Especially if I have to monitor Ava is, too.

@Catsback I can't count myself as an expert in this at all. We realised my Dd has anorexia at the start of the month, and we started the 3 meals + 3 snacks the same day the dr sent off the referral to CAMHS. It's been really hard for us all, but I've learned to make sense of what's happening as us 'rattling the Ed' - so every time my dd is distressed or angry, I'm trying to see that's the Ed fighting against us. It's not easy though, we try and say the things Eva musby suggests like 'we know what your body needs, you can trust us' etc.

We've been trying to follow 3 meals at least 500 calories each, and 3 snacks of 2-300 each per day. My approach has been to try and keep portions small so they aren't overwhelming, but add things in like double cream, butter or oil to reach those calories. I don't let my dd see me cooking. I sometimes give her choices, but only choosing between two things where I know they have similar calories, I try not to negotiate about food otherwise. We try and ensure that she finishes everything, in the early days we were allowing her to leave a small amount on the plate, but this soon escalated to more and more, and now we have said she needs to eat everything she is given. She has become really sneaky and manages to find ways of discarding or hiding food so she can throw it away later.

We are focussing on weight gain, although she lost more last week so I've been trying to figure out how.

As far as I understand, this is what will happen in the first phase of fbt anyway, so I didn't think there was any use in waiting for someone to tell me that, I just thought it was better to get on with it...

I’m no expert either but would add the following to Greydoor’s advice. Depending on how much she has been restricting then you need to be aware of refeeding syndrome and may need regular blood tests at the early refeeding stage and would need input from HCPs.
Good luck Catsback

Yes, good point @Shanghai101. Our GP did the initial blood tests, blood pressure, referred for heart trace etc, and we have access to regular appointments to repeat these, so we were relatively confident that it was ok to take the approach we did.

Thank you, I can ask for you? I think she offers zoom appointments I am happy to pass on her details? She is the one helping us the most at the minute and the new consultant other than that it's this group and us researching

@greydoor that makes sense - that is what we are starting to do. We’ve become stricter about meals, but are yet to add in snacks. Yesterday she ate a brioche for breakfast (didn’t want to, but did it reluctantly), two small bao buns for lunch, and meatballs and spaghetti for tea (she left the garlic bread).

She didn’t eat anything else, even when offered.

She had a check up yesterday and she has lost another pound since Friday. She thought she hadn’t lost anything and was unhappy about that.

I’m a little bit confused about things, as she is eating and responding better than she has been when we’re more assertive with her about meals, but then again she has still got disordered thinking about food it seems. Does this sound like your daughter?

She is under a psychiatrist (for past suicidal ideation / depression / anxiety), and I have brought her appointment forward so she is being seen early next week.

What I also find confusing, is that the NHS say that children / teens aren’t considered underweight unless they’re below something ridiculous like the 2nd centile or something? But my daughter is on the 30th and she’s starting to look skinny.

I really do think it depends on your child.

I personally have always been just on or under 18.5 bmi but I know that is my natural weight & I eat really well.

My ds is about 9kg underweight & obviously it's a huge concern - but I also know he will struggle to get to the required bmi - he's a naturally skinny bean & has a high metabolism like me.

I think sometimes you have to go with your gut feeling, you just know when something isn't right, the stats are just a guide.

Catsback how olds your dd? She sounds very similar to mine (who I strongly suspect is also autistic) autism and EDs are very commonly associated with each other unfortunately.

My dd also responded fairly well to me taking control (the distress was manageable most of the time) but she could not cope with knowing she had gained weight. This led to worsening anxiety and self harm behaviours as well as food restrictions.

I only made some head way once she was blind weighed.

BMI is not recommended for children with EDs, they tend to focus on weight for height (wfh) for an average child of the same age they would be 100% wfh. This then gives you something to go on and aim for once you know where your dd is.

It's not an exact system and does depend a lot on where your child naturally sits weight and height wise. My dd has always been above 100% wfh (pre ED) as was above the 50th per centile for both right from a baby.

I would definitely start giving her more food and begin to make the expectation that she needs 3 meals and 3 snacks a day. Keep her out the kitchen and give her food you know she likes and is calorie dense.

Carefully monitor for purging, keep distracting after meals, no bathroom breaks or being on her own for at least an hour, bathroom doors stay open, she needs to talk or sing if she's in the bathroom more than a couple of mins.

Hi
I know this can be hard but it's a lesson we learned. You do need to get them to finish all the food on the plate. It may increase distress but it wrestles something back from the Ed. When we had meal support at home from CAMHS our support worker was really good at be being strict on finishing/having clear "time window" to finish food and brilliant at distraction. We learned a lot from observing her approach

@myrtleWilson Thank you. I suppose what I need to know is how much to be giving her to insist that she finishes? I think that’s where we need some professional input from a dietician. I’m not giving her especially small portions, but at the same time, I know if she was faced with an enormous plate of food she would freak.

www.sheffieldchildrens.nhs.uk/download/1276/sedatt/44739/eva-musby-handouts.pdf

There is some useful info here. I don't think there is an agreed amount of calories as I depends on the person. The goal is to help them to put on between 0.5 - 1 kg per week.

We have been trying to stick to minimum 500 calories per meal and 2-300 per snack. But we may have to increase this if she isn't putting on the weight as we need her to. There is also the risk of hypermetabolism for anorexic people, where they need significantly more calories to put on weight.

I've been making the meals as calorie dense as possible, so the portion size remains as small as possible. So for example I make her a milkshake for a snack with a small amount of frozen fruit, Haagen dazs icecream and double cream in the smoothie machine. For a small glass I can easily get to 300 calories, and it's not an overwhelming amount - it's literally half of one of our glasses. There's quite a lot of info out there about how to load calories into food, eg by adding oil, butter or cream.

@Proseccoismyfriend yes please - would you mind asking / passing on details? Thanks so much. We had a really upsetting afternoon yesterday with a meltdown which went on for a long time. I would like to work out if we can help minimise distress at all, it's absolutely awful to witness her being so upset. Thanks

I do feel the hypnosis has helped with distress as at first that was awful and my daughter was becoming equally distraught watching it. He's a lot calmer and trying foods he hasn't tried for years. Her website is below, I sent her a text message literally dumping all my baggage, it was a weekend she rang me to discuss in more detail. I never felt pressured to go ahead and she suggests 5 sessions (you get 20% discount) if it's not working or not needed she refunds you. We had another today and she's emailed a recording for him to listen to at home.

workyourpotential.com

@Catsback I would go with getting 3 meals and 3 snacks established first and worry less about calories.
I would make a meal and snack plan. I did a weekly one every week which I pinned to the fridge. I didn't discuss it with DD though. The advanced knowledge of what was coming helped my DD. And also every time she kicked off I used to say: 'it's on the plan so has to be eaten' . She also used it as a 'to do list' and ticked off every meal/ snack every day which appealed to her. Food is a terrifying chore for them.
I based mine off usual family meals she had always eaten. And the breakfast she had always eaten before the ED. We were in lockdown so I made up lunches to about 500 cals (min), again things I knew she liked. Snacks were more tricky but again I used things she was used to for a break snack when she had been at school. And then used calorie dense things like nuts and raisins, chocolate etc to make small volume but c250 cal snacks.
Once this was established (easy to type, hard to do!) I added extras like; a glass of ff milk with one snack, a pudding to lunch or dinner, double cream in her evening smoothie (some find drinking cals easier, some harder).
Then I hid cream in mash, sauces. Loaded the oil in cooking etc. We all got heavier....
Finally I increased portion sizes slowly which she never really twigged (easier with say a chilli than bangers and mash!!)
That's how we did it.
And yes they must eat it all.
And yes they will get very very distressed. Look up FEASTs distress tolerance video and learn to understand that their distress is the ED kicking off. And that is a good thing. And try to remember that the distress will not kill them, untreated AN will. I likened it in my head to chemo for cancer. It hurts and makes then feel like shit but saves their life.
Unfortunately there is no way to recover from an ED without distress. Don't join in with that distress. Offer comfort and support. Say 'I know this is so hard for you, but together we can do this' or 'I am sorry this is so hard, but I know what you need to get better' and offer physical comfort by being there but don't say a huge amont more.
It is awful. But it can be got through.
Today my DD is fully recovered and living her dream life in a sport she loves.
Honestly when I was where you are now I would never have believed it.
The agonies she went through were the hardest thing I have ever borne but recovery is possible.

Well, I’ve just learnt a lesson. This really is something to be worried about. At tea tonight, she ate only a couple of mouthfuls then said she felt sick. I said she needed to eat it all. Turned into a standoff, where we both sat at the table while she silently cried and ate not a crumb more. Then she just stormed off up to her room in tears. I have no idea what I’m meant to do if she leaves the table - I can’t manhandle her downstairs again. So today, she has eaten a brioche, one small bao bun, and about a handful of chicken.

Cats what leverage have you got? Can you take her phone for a bit?

With complete food refusal you can either take the food up and keep insisting she eats it or threaten to take her to a&e if she doesn't eat.

Use whatever leverage you can.

@Catsback you've massively riled the ED - in the short term this is giving you (and her) grief but it gives you a pathway to continue on.

Our advice was - offer a meal to be eaten within a specific time frame (20 mins for lunch/30 for dinner). If it wasn't completed - provide a fortisip/ensure as a substitute. If that was refused, record it as a refusal of a meal and then abide by whatever camhs guidelines had been given as to when to call them (or others) when trigger level has been met.
It is brutal and awful but it does work and lots of us know the pain that it will entail but the likelihood of it having success is higher than not doing it.