Support thread 13 for parents of young people with an eating disorder

[Curlyhairedassasin]

New thread as the other one is filling up fast....

So sorry to hear pigeon.

I got aggressively jumped on for suggesting it but we have read and put into practice the EVA Musby book. This was recommended on here and by the senior ED psychiatrist we saw through Dhs BUPA and has worked for us.

With the help of the psychiatrist and following the book we have turned dds eating round. We are still waiting for the CAHMs appointment 😓. Frankly if we hadn’t had private healthcare and the knowledge to do FBT ourselves via the book Dd would be in hospital by now. Sadly it seems we parents are on our own now the state does not have the resources to help.

I don’t think the posts were aggressive. A lot of experiences posters have been at this for years. Eva Musby is really marmite. It made everything worse for my 16 yo dd, who was 15 at the time. She kicked dh hard, was sarcastic, vile and tried to jump out of an upstairs window when we applied the techniques. EM is not for everyone, which is what I told Pigeon upthread. Considering that her dd won’t let her make any food, I am not sure it would work for her dd. But it’s worth a look.

Hi @PermanentlyExhaustedPigeon80sorry you’ve had to find us.

I haven’t had chance to read all the replies you’ve had but the thing that’s jumped out at me is that your dd is vegan. There is a strong link between children being vegan/vegetarian and going on to develop anorexia. Anorexia is ultimately a biological illness that is caused when the brain and body goes into starvation mode. When children are already on a restricted diet this is easier to slip into.

I would push back hard on the vegan aspect as in order to get your dd well she is going to need a lot of healthy fats including cream and butter. You could say to your dd that unfortunately she is not well enough to recover on a vegan diet so this has to change.

Taking control is hard and FBT done correctly is carnage but once you have control your child will feel an immense sense of relief at not having to make choices that they know are harmful anymore.

Yes to getting signed off work, I did this twice for around 2-3 months to get my dd back on the right tracks. Yes to pulling her out of school to establish the eating plan - your dd needs to know you are not messing about. No food = no life 🤷‍♀️

Is the school aware and will they supervise lunch?

Has your dd had all the physical checks? She sounds very ill, do you know her wfh? My dd was never dangerously underweight and eating around 1000 calories a day however her heart was dangerously slow and she was physically shutting down.

My dd is also ND as are most of the children on this thread, it’s a common theme. I was able to use my dds preference for rules and routine to my advantage in getting her to eat. Originally it was very rigid but as time has gone on there is more flexibility.

use whatever leverage you can to get food in, I took dds phone away for several weeks and she was only allowed it in the evening if she had eaten the food.

And yes to Eva Musby, the issues that some posters report for implementing FBT are to be expected as making your child eat will force the ED into the light. Some of the behaviours are truly shocking and you won’t believe that your child is capable of them but this is normal and being able to tolerate your child’s distress is an important skill to learn.

That said for some kids it’s never going to work and they need hospital or specialist unit to turn it around. With my own dd I tweaked the FBT rules to work for us and definitely let some behaviours go that I should have pushed harder on.

I found the book really helpful and it’s definitely worth reading.

@PermanentlyExhaustedPigeon80 I was signed off work with stress/ depression for 6 months, went back, couldn’t manage and signed off for a further 4 months. I’m back now but less than before. The GP was very helpful, they will know the difficulties of dealing with EDs.

To be honest, things were fragile and the ED was the last straw. I don’t know what others think: we find it impossible to provide the level of supervision needed and work. At the beginning, we decided to put all our efforts in and try to nip it in the bud.
Obviously that didn’t work for her but it does for many.

The strain of this illness has wreaked havoc on our the household. I doubt our relationship will survive and the impact on the siblings is huge. You need to look after yourselves and if being signed off work is a small step towards that, so be it. Parental leave is another option.

The strain of this illness has wreaked havoc on our the household. I doubt our relationship will survive and the impact on the siblings is huge. You need to look after yourselves and if being signed off work is a small step towards that, so be it. Parental leave is another option.

So sorry @Shedqueen that it's so hard for you but I couldn't agree more. The impact on our marriage, DD's sister (who also has complex needs) and the family as a whole has been huge for us as well but I doubt we will emerge from it it as a whole family. I really hugely underestimated the impact it would have on all of us and not taking extended sick leave early on to throw everything I have at the ED is one of the big regrets I have.

Thanks for your reply @Girliefriendlikespuppies and I hear what you're saying about the restricted diet. It's a tricky one as I'm also vegan, and it's something we did together back in 2019. It's actually been a really lovely source of bonding, we've done lots of cooking together over that time, and my DH also cooks / eats vegan meals in the evenings, so it's fairly embedded in our family life. I understand it can be a decision taken to further restrict food, but I don't think it is in this case. DD is a fully ethical vegan, and hasn't eaten meat since she was 4 (vegetarian from that point - her choice) so I think would be traumatised if we tried to change this. However, I do understand that getting enough calories in is going to be more difficult on a vegan diet. Easier than it used to be though, with plenty of good alternatives to cream, butter, meat etc. I'm not dismissing your point - which I think is an important one - but just wanted to add a bit of context. Feel free to tell me if I'm being delusional. You all have more experience with this than me, which is why I'm here.

I found out today that DD is on the 'brief intervention' pathway, which I hadn't understood before. I think that means she gets 6 (fortnightly) appointments with a case worker, and then a review to decide if she 'qualifies' for a diagnosis. I think because she has such a complex history with ND, self harm, anxiety etc. they're not sure whether the ED is a separate illness or another manifestation of the other difficulties. Increasingly I think the ED has taken over though, so feel concerned about waiting another 12 weeks for them to decide if she needs to go onto the full ED treatment pathway. I guess I need to trust the professionals, but each bad day we have I get more worried (although then a good day makes me question myself) - is that a standard pattern? I feel emotionally battered by the ups and downs at the moment, and just can't get my thoughts in order.

@PermanentlyExhaustedPigeon80 sorry to read your posts. I haven’t had time to fully catch up yet, but I just wanted to say that my understanding is that FBT works for 50% of families and other lines of treatment work for the other 50%. Simple adaptations can be made to FBT to work for neurodiverse patients e.g. they can be a part of the shopping/preparing meals but boundaries need to be put in place to ensure that this is not abused.
The important thing is to re-establish eating and to ensure regular eating to increase social interactions. For some people, it helps to understand the science behind why you need to eat regularly and why you might feel the way you feel if you don’t i.e. poor concentration, bad sleep, cramps etc.
Our experience has been that it is better to start slower and build trust.
One good tip that we came across is to include fun activities with the meal plan so that the meal plan isn’t overwhelming

Lots of parents on this thread have had to take leave from work at some stage during their loved ones recovery but others have managed to work through. The more support you can get the better and ideally you would tag team with your partner as it can be soul destroying at times and you may need to step away for a bit for your own sanity.

So sorry @Shedqueen and @Curlyhairedassasin to hear the impact this illness has had on your families and home lives, but sadly I'm not surprised. We're already quite shaky and having couples counselling, partly because of all the challenges and stress of supporting DD up to this point, and I can completely see how EDs can wreak havoc through families. We also have a 7-year-old, who I feel like I'm pretty much ignoring at the moment😢

Can someone please explain what wfh is, and how to calculate it? My DD is not currently underweight and has a 'healthy' BMI - does that mean she won't get a diagnosis of AN, or is weight only one factor?

You don’t have to wait for the treatment team to get started with FBT or an adaptation of it, whatever works for your family. As you are a vegan family, it might be a good idea to get input from an ED dietitian. It can also be helpful to have a higher authority that your DD is more likely to listen to. And it may help minimise friction between you and DD I.e. the science says that this is what your body needs for base line functions and this is what it needs if you want to go to school, play sport etc
In the interests of time, I would pay for this privately if you can, you may only need one or a few sessions. The earlier you can turn this around the better as it can become deeply entrenched otherwise.

No one was aggressive on this thread it was another thread I recommended that book and got rounded on!

I was too complacent and slow to act and frankly will take the regret of that to my grave. Dd2 had been restricting for months and got to 2nd centile bmi 16. The psychiatrist was “extremely concerned”.

The EVA Musby book was amazing for us I read it in a weekend and educated myself because I knew nothing about this and the medical help is slow to kick in. It gave us a road map of what to do. Dd is complying as she now realises if she doesn’t eat her life will stop and it’s hospital and that fear trumps the ED 🤞

Same here @TheaBrandt1 whilst I don’t feel that we were particularly slow to ask for help, via the GP, we were very slow to get effective help. For a long time we faffed around with GP visits and nurse visits, my regret is not getting started with a meal plan and therapy early on and I think we could have only done that by going to a private psychiatrist as DDs weight was borderline for a long time even though she was restricting.
My regret is why I post on this thread, in the hope that somebody like me will read it and it will make a difference.

@PermanentlyExhaustedPigeon80i personally feel recovery will be seriously hindered by allowing your dd to remain on a vegan diet. The animal fats are really crucial for the brain recovery and I thank double cream for saving my dds life.

I appreciate that it’s not easy when you’ve made that decision together and no doubt have strong feelings around the ethics of the dairy industry however imo it will be almost impossible for your dd to recover and stay recovered while remaining on a vegan diet.

My dd wanted to go vegetarian when she was around 10 yo and we ended up compromising on being pescatarian which in hindsight im grateful for.

Most of the kids on this thread have a history of being vegan or vegetarian and I wish there was more awareness around the risks this can pose in developing anorexia.

Dd2 suggested being a vegetarian turned out it was just a ploy to further reduce foods she would eat.

Agree Shanghai saw a friend with a younger dd who is very thin and has expressed anxiety about eating I told her to read the musby book then at least she is informed so can get ahead of it unlike us. It had gone on for months - I was in denial. Would like to save other parents if possible.

Without the book I would have waited for the experts which would have meant losing precious weeks. The book says you can work out why it’s happening later the key is starting the meal plan / refeeding / taking control of eating asap.

oh yes, the vegetarian phase.... we had it too. It's part of the AN playbook.

@PermanentlyExhaustedPigeon80 FTB usually involves 3+3 eating. 3 meals and three snacks (breakfast, midmorning snack, lunch, afternoon snack, dinner). I cannot remember if you already have a meal plan for this sort of intake. Happy to share what we had on ours...

Yes @Curlyhairedassasin we have a couple of standard meal plans (labelled 'equivalent to Inpatient meal plan 2 and 4'). We managed okay on Number 2 for a few days, but as soon as we moved to 4 (which doesn't seem that much more) everything seemed to go wrong. Yesterday she had about half of what was on there overall, and today so far she's just had a smoothie. Nothing at all at school, and she seems very jumpy about dinner - said she can't eat anything with oil on it, and refused a vegan burger in favour of plain tofu. I don't know how to enforce the meal plan, as she just flat out refuses. We now have a Case Worker appointment tomorrow morning, so going to try and get across how serious things seem to have got and push for more help. Sounds like I need to get the Eva Musby book - will look at that now.

@Shanghai101 - I feel like we're at the faffing around with one-off check ups stage right now - Paediatrican, bloods, Dietician - some of which aren't until June. I really want to get actual therapy and treatment started now, as I feel like I can see where this is going, and don't want to have to wait until things get worse. I also suffered with undiagnosed EDs on and off as a teenager, so this is all distressingly familiar. Hard not to feel as though I've somehow passed this on, either through nature or nurture, despite my very conscious efforts to be body/food positive since she was tiny. It's horrible to watch this happening to her and feel powerless.

God poor you sympathy sounds like Dd at her worst. We took control of her eating entirely following the magic plate method in the mushy book and said if she didn’t eat she couldn’t go to school or go out and see her friends. She hated that and complies with the magic plate and has done for 3 weeks now and has gained weight. She is NT otherwise so appreciate may be different for you I don’t know.

Don’t feel bad neither of us have ever had any sort of ED ourselves but here we are.

@PermanentlyExhaustedPigeon80 don't blame yourself. No history here. ND, low self esteem, perfectionism and tik tok/instagram were major factors 😞

@PermanentlyExhaustedPigeon80 sounds so much like DD. no way to enforce the meal plan, fear of oils in any shape or form and we also had the plain tofu. We had 2 emergency admissions. over the last 2 years.

When you go there tomorrow, make it clear you cannot enforce the meal plan. Write down what she ate in the last few days. demand ECG and bloods. Pull school and going out for now and if things don't pick up, expect an inpatient admission. We had it twice and only after the second one things got turned around. DD is also on antidepressants and on olanzapine. it's an antipsychotic drug which is given in low doses to treat anxiety around eating. Might be worth asking about these. Good luck.

There are loads of Eva Musby videos on YouTube and she also has a website. It didn't work for DD at all though and made it all worse but some had great success with her approach.

@PermanentlyExhaustedPigeon80there is a strong genetic component to ED but it’s no more your fault than if your dd inherited any other health issue.

The only therapy your dd needs now is food, talking therapy is pointless at this stage.

You need to be v firm with your dd, if she doesn’t eat then there needs to be a consequence in place. Ultimately if she’s consistently refusing then take her to A@E and insist they do the full checks.

Do not substitute one food for another, if her dinner is a burger then she needs to eat that burger. The temptation is to substitute for something that is more acceptable to her but all you’re doing is enabling the ED and creating issues down the line.

Stand firm, do not back down, she wants to eat the burger but the ED is telling her it’s dangerous which is obviously nonsense 🤷‍♀️ She will be distressed, she may threaten to run away, she may threaten to hurt herself , she may become violent but once the ED has thrown everything at you and you’re still insisting she eats it it will back down. The next meal will then be easier (hopefully!)

Implementing FBT is the hardest thing you will ever have to do, it’s is heartbreaking and soul destroying but it has a decent success rate and does work.