Support thread 14 for parents of young people with an eating disorder

[Curlyhairedassasin]

New thread as old one is filling up

Hi everyone, question about the meal plan we've been given- which we were told is a generic one produced by the NHS I think. For breakfast it suggests either 3x toast with 2 eggs OR peanut butter, OR 3x cups of oats with 2 cups of whole milk. My question is - do they mean the US Cup measure? Because if they do that's an insane amount of porridge! My husband couldn't even manage that. When I asked our CAMHS team, they weren't 100% sure on what 'cup' meant, but my DD is freaking out as she understands a cup to be US size, which is quite substantial. I do understand that the amount will be considerably bigger than a usual breakfast.

@baderror404
Yes that does sound like a lot. A cup in the uk is 250ml by volume. Have you weighed how much a cup is as the weight for dry food will vary. Oats are relatively light.
Does your dd like toast? Perhaps you could stick to this if it would reduce your dd’s stress?

I’m sorry I’m not sure on the cup size, but you’re right that does sound like a lot of porridge!! I’m not sure how much flexibility you have with the meal plan but I found early on with my daughter that she simply couldn’t manage the quantities of food suggested so we created our own options that contained equivalent calories but in smaller quantities. There’s absolutely no way my daughter would eat 3 slices of toast, but she will eat two small Belgium waffles which equates to 500 calories..I plate up so she’s not really aware of that but the portion is manageable. I also make a breakfast smoothie with frozen berries and double cream which is a good accompaniment to a smaller breakfast. Maybe one to discuss with the treatment team if the suggested quantities are stressing her

I think measuring food out should be avoided tbh as it just gives the sufferer more to feel anxious about. Personally I would get a slightly larger cereal bowl than the standard and use common sense amount of oats but make it up with double cream.

This is what I did anyway 🤷‍♀️ you can also add seeds, fruit, jam etc.

I could get the porridge to around 800cals but it looked like a standard portion.

I would assume UK cup size. I agree measure it out yourself away from her and then you can eyeball it if she is ever in the kitchen with you. Ideally you'd try and keep her out of the kitchen during meal prep though.

What I did with our meal plan was I put all the examples in my fitness pal and figure out the calories. Then I could use my fitness pal to plan out meals and snacks from a wider choice based on that calorie count. For example, calorie count the toast option and then work out how much porridge would give you the equivalent

What is the general process for recovery? I noticed DD's weighloss on March 23rd, started doing three meals, three snacks, saw they GP who referred us to the ED clinic, who saw us straight away for obs. We had our assessment with CAMHS on1st May and they said just keep doing what we're doing. We are having obs every week and she is now at 91.11 wfh having put on another 1.2kg in the last couple of weeks.

What happens from now? Do we just keep feeding her? What happens with the psychological recovery? We haven't been given a dietary plan or anything; I assume as she's gaining approx 500-600gms a week which they seem to be happy with. They have been pretty lenient with everything and allowed her to do her DofE three dayer early on. She h as another one coming up in 2 weeks. They have not let her start running again though - and to be fair, she is pretty content to sit around watching TV. I realise we are very lucky on this.

She is not loving that her clothes aren't fitting as well, and I suspect she has always been marginally underweight. Her periods have not yet returned. Any advice gratefully received.

I posted earlier, but my laptop has had a technical glitch, so I think it has disappeared into virtual ether.

My son is 25 and has Bulimia. We had an incident on Wednesday in which his heart rate dropped to 31 and the ED team called the emergency ambulance. His ECG showed Long QT as a result of bradycardia. On Thursday, my son has an online assessment for possible admission to an ED unit 100 miles away. There is nothing suitable in our immediate area. He weighs 47 kg at the moment.

Despite his obvious health issues, my son has binged and purged copiously every day since the assessment. I think he assumes he will be going into a unit, so nothing matters. I know it is more likely that he will not be admitted or that he will refuse to go. He has additional complex needs and is extremely set in his routines.

We see a psychiatrist this afternoon. I was working upstairs, and he stole my card and has spent £78 at the corner shop to binge/purge. He has also eaten everything in the cupboard. His behaviour is driven by his ED and I usually have my card in my pocket. I was distracted this morning.

I am so scared that he will die. I also know that I cannot manage his behaviours and living with me is not helping him.

I apologise for the length of this thread, but I just needed to share my feelings ahead of the meeting.

@sum12luv I have no advice, as we are still new to this horrible journey, but that all sounds absolutely hideous - I am so sorry. Do you get to see the psychiatrist with him?

Sorry you have had to join us.
My experience is that therapy can be offered after a period of recovery, so it may be worth asking about that. We're still under camhs and seeing the ED team although DD is at s safe weight and doing some exercise, but appointments are less frequent and she sees a therapist weekly to deal with tye remaining ED thoughts and self image issues.
We've found that if what you do at home is "working" they'll let it continue, and offer support. We had an appointment just us parents a couple of months in which was a great chance to ask what's next

So sorry to hear your DS story, which sounds very frightening. It sounds to my untrained mind that the part of him not completely ruled by his ED recognises that this cannot be fixed at home, and that he needs inpatient care.
We had no experience of in patient care ut others here have and may be along. The distance is hard, but overall do you think inpatient is a good idea?

Thank you for the support. We have seen the psychiatrist and a bed has been arranged in the general hospital for tomorrow morning. There is serious concern about my son's physical health at the moment. The psychiatrist also thinks that the ED inpatient unit will approve his admission, and my son has stated that he wants to go. The plan is for intervention on a general ward, followed by a stay in an ED unit

I do have doubts about how well my son will be able to cope with the changes that lie ahead, but I know something has to be done. I had a serious ED in my youth (I am in my sixties now) and I know what it feels like to be an inpatient in a unit. My emotions are a little bit unravelled at the moment, but I am trying to keep positive.

Once again, thank you for the support.

Hi everyone, I’ve been off here for a while grappling with demons but had ED clinic today for the first time since March and DD isn’t doing great. She’s been diagnosed nearly a year and we keep chasing round the same five or six percent wfh, between 80 and 90. I just don’t see the point in keep taking her - her psychological needs haven’t been addressed so nothing is changing, and it’s a good three/four hour round trip so missing a lot of school.

She’s 86% today but only went above 90 when I took time off work to go hard with the meal plan - she doesn’t eat at school and I’m not normally home in the evenings til around seven so can’t enforce snacking. Dinners are hit and miss, usually miss. She’s cutting.

Our FBT therapist is a ‘systemic family practitioner’ so tbh I’m not even sure she’s appropriate in role. She has agreed to submit a request for DD to see the service psychiatrist but it just feels like chasing our tails.

Those who are accessing talking therapies, what kind helps and how did you find a practitioner? (DD had nearly a year of private CBT before diagnosis but wouldn’t talk about food/body image etc).

It feels she is doing enough to stop herself becoming critical but nothing more, admission was mentioned today but I don’t see that as anything other than an empty threat as she’s so stable at 83-85% over the last year.

Sorry to see new names, sending solidarity x

I’m sorry to learn how poorly your ds is @sum12luv. I really hope he gets the treatment he needs. It is good that part of him acknowledges he needs in patient care.

@Glitterfarti

It is so demoralising to be going round in circles. I hope your dd at least has made some improvements.

I had to look up what a systemic family practitioner does and the qualifications needed. Theoretically what she’s doing could be useful. But it all depends on if you gel and if they are effective. I imagine the idea is that she looks at the family dynamics and counsels you on how to get your family working together in a collaborative approach, to address any familial stress and use this approach alongside FBT. Is that correct?

This sort of thing is part of the work we do with the ED coach. 17 yo dd is refusing to engage with her again (she’s decided she’s an adult and doesn’t have to), which is a big shame as the coach has helped dd to reduce her anxiety when working together. As this is the case, the coach has basically trained me to be dd’s coach, which isn’t ideal.

As for how we found the ED coach, she was recommended on here. We went with her despite being a few hours away by car because she specialises in ND and I suspected dd wasn’t NT (now confirmed ND). She’s a real dog with a bone. And she very much works a person centred approach, so if a client won’t talk about food or body image, she won’t talk about that. Then she will when the time is right, but it will be a light touch and in a way, that presses the right buttons. It’s very subtle.

Dd has come a long way. But still digging her heels in and refusing to see she’s mentally unwell. It’s like I tell her she has an ED, when she’s restricting, she gets angry but doesn’t deny it, when she isn’t restricting, she accepts it, but doesn’t actively believe or disbelieve it. Subconsciously, yes she knows.

Thanks @Mummyoflittledragon , would you be happy to pm me details of the ED coach and roughly how much she charges, we suspect DD may well have ASC, her sister has been diagnosed (privately) and the therapist said the way I speak about DD suggests she should be assessed too, but haven’t scraped the money together yet! Also she is refusing to comply with an assessment at this stage….

@Glitterfarti TBH talking therapy has been ineffectual for my daughter. She doesn’t want to get better so only superficially engaged. The family therapist practitioner kept digging for something wrong but eventually that stopped. Now all therapists have withdrawn and she just gets weighed weekly, sees the CPN once a month & is in a psychiatric clinic sporadically. It’s a shitshow.

However, I think it’s is worth pushing for a psychiatrist appointment because drugs can make a difference and she may more intensive medical monitoring the longer this goes on. It can be a fast track to an ASD assessment. Mine gets assessed each time she comes under a new service despite no one who knew her before thinking she’s ND.

Good luck and hang on in there x

@Glitterfarti
I will PM you in a sec. We have had to dip into retirement savings as it isn’t cheap, but it’s the going rate, well, she’s actually cheaper than some.

As for the ASD assessment, I had to wait a long time until dd was ready emotionally. And it is contraindicated when someone is too emaciated as this skews the results, so I’d say it’s not a good time for your dd to be assessed right now. As for paying, would you consider getting your dd on the NHS waiting list for her with right to choose? I knew my dd was ready, when after the dyslexia assessment just before last Christmas, she acted surprised that she hadn’t been tested for autism as well.

@Libre2 my dd only needed weight gain for recovery, she didn’t need any therapy in the end (and she was suicidal at the lowest point of the illness.)

So ime yes you keep doing what you’re doing, keep feeding, keep adding as many calories as you can, keep pushing fear foods etc. My dd hit a wall at around 95% wfh which is really common, the ED seems to know it’s under pressure so comes out all guns blazing. Once we battled through that it seemed to get a lot easier.

It’s an up and down road though.

I was also going to say this too. My DD
(NT, well as much as anyone is) has never had therapy. She had one on line perfectionism course which resonated with me but she was indifferent.
Weight gain was all she needed. But she had to get to 105% and stay there. You will know when your DD gets to the right place for her, because her mental state will improve.
So keep going!
Pushing through that last barrier can be difficult (extintion burst) but use all the same strategies.
My DD had primary amenorrhea so periods was not an indicator for us. But until your DDs come back she clearly isnt heavy enough and conversley getting periods back does not mean she is at the right weight! The reproductive system is turned on before brain recovery. Brain recovery is always last.

Further to what Lotts said re periods @Libre2, it takes time for the body to readjust and for periods to restart. So for example, my dd is teetering on just about heavy enough to have her period. And each time she goes into relapse they stop or are delayed. Then they restart once she gets over that tipping point again. Once your dd’s body is nourished enough, they will restart. And periods are an indication the body is getting enough nutrition not to be in real crisis, but as above, nowhere near recovery. And at that point, your dd still shouldn’t be running.

As for keeping feeding your dd, yes, you keep going and getting her to put the weight on. You will know when your dd is recovered, because she will stop with any weird behaviour and the food issues will drop away. However, rule of thumb is that she needs to be at least where she was prior to the start of the ED plus 10% and maintain that weight for the brain to fully recover.

And when I say the start of the ED, it is highly unlikely that the start of restriction was when you think it was (edited as I’m getting confused between what different people have said about their dc’s, it’s 4am!). You say she’s always been underweight. This could be where she naturally sits or because she has had ED in milder form for quite some time. It’s difficult to tell from what you’ve said, but you know your child. Some people are more naturally waif and others are not. For example, my dd was always on the heavier side, although she had naturally slimmed down before the start of the ED - dh and I both did the same and I presume therefore it’s genetic. But I do think 100% weight for height, when she even gets there, is highly unlikely to be enough. I will know when it’s enough. I’m very attuned to my dd now.

I think some of what happened for my DD was that she was always probably on the edge of where she needed to be weight wise. She was a v active child and we ate healthily. Then puberty hit which coincided with lock down and her desire to stay fit and she quickly got underweight and AN took hold. My DD did not really restrict her food to start with but upped her exercise massively and as soon as she tipped over into being underweight (which took no time at all) the food restriction started (secretly, by cutting out snacks, wanting to be even more healthy, a familiar pattern).
Our CAHMS key worker did say that she would never look the same as she did pre ED. She was a child before and a woman after.
She was at a good weight for at least 6 months before she had her first period. We had even got as far as seeing a gynae (at CAHMS request)
I will never know how much lasting effect there has been. She may have been taller for example. But i try not to dwell.
She is good now. And looks strong and healthy.

Hi. Thank you for sharing your recovery stories.
We thought our daughter was weight restored in December but her mood is still terrible. She still gets very angry. She says that she is now focusing on her emotions with her MANTRA therapist but im out of the room and not sure how much is spoken about.
It's pretty hard to live with.
Does anyone have experience of recovery where it is weight first, then mood?
I am starting to wonder if she is still not weight restored. As the you say, she is now a woman and before a child.
Thank you 🩷

It may well be that she isn’t weight restored yet. Poor things - feel dreadful because they’ve gained weight but not enough/ for long enough for the brain to recover. I think we have to help them hold on because it might be the hardest time for everyone.

My daughter went significantly over her original weight before her mood restored. Think she was originally 48kg, went down to 43 when unwell then finally up to 54. We kinda thought that was it when she gained the lost weight but then suddenly her body realised it needed more and she was eating loads at that point, her own choice. I said nothing. Now she’s well and I suspect she’s dropped back a bit in weight, though I don’t know as we don’t weigh her.
edited to add a link to an article I found really useful https://feast-ed.org/when-in-doubt-aim-higher-what-i-wish-id-known-about-target-weights-in-recovery/

My dd needed to go right over what Camhs were suggesting as well, in fact at the point when Camhs started saying things like ‘we think she’s about right weight wise now’ I stopped taking her. It’s scary and ironic that even Camhs and health professionals are scared of weight gain 🤦‍♀️

My dd needed to get above 95% wfh for her periods to come back and I also noticed that as she got closer to 100% wfh most of the ED behaviours (I think she had them all - crumbling food, hiding food in clothes, pouching and then spitting out food, OCD rituals etc) also massively decreased.

Ive no idea what she weighs now but she is a size 10/12 and looks healthy 🤷‍♀️

Recovery is possible but it takes a lot of double cream and butter to get there 😉

My dd is 20 now 😳 and about to go off travelling to Australia and then start uni in Sept 🥲 There are still a couple of behaviours that have unfortunately stuck around but my dd is almost certainly autistic and I suspect some of that is her liking the safety of routines.

Has anyone on here been successful in getting access arrangements for school exams due to anorexia diagnosis - cognitive lag?
My DD is nearly weight restored (she is back to pre- Illness weight, but this is only 90% wfh), and her mood has improved massively. However, she struggled in one of her recent Y10 exams with brain fog, which has never been a problem in the past. I’m wondering if she is still suffering from the effects of a starved brain. Is there any way of knowing? She thinks extra time would help her, but school has said she can only have rest breaks. They don’t have experience of anyone requesting extra time for cognitive lag in anorexia recovery, so not sure if this is even possible.
Her periods haven’t yet returned, so she clearly isn’t fully recovered yet. Camhs discharged her because she no longer critically unwell and she was unable to access the talking therapy they wanted to offer her (possible autism/adhd).
Does anyone have any advice? Thanks!