Support thread (8)for parents of young people with an eating disorder

[myrtleWilson]

Welcome to anyone who is a parent/carer of a young person who has (or suspects may have) an eating disorder.

We're experts by experience and will share our insight - but obviously we're not medically endorsed, we celebrate all our small wins and provide a space for relief from the intensity of supporting a young person whether pre teen, teen or young adult with any eating disorder

Bagpuss yep def sounds like it 😕 dd was awful at that point, it did settle after a certain point but was terrible at the time.

Whatho you're doing so well, personally I would only use double cream to make the porridge with, you can also add seeds like chia seeds which don't add bulk but do add a few calories.

Do you make the smoothies? I would make them with fruit and double cream, a small amount of juice to get the right consistency if needed.

Would she have a small piece of cake instead of a cookie? If you can home made cakes and biscuits will be more calories, flapjack is great as easy to make just oats, butter and sugar.

High calorie dinners I made were ones with a white sauce so fish pie, creamy pasta, pasta bakes etc. The white sauce would be flour and butter made up with cream and ff milk, add in cheese and soft cheeses. The highest calorie soft cheese I found was mascarpone.

Curries are also good as coconut milk is very high in fat/calories.

If possible try adding a pudding with dinner, we did that instead of an evening snack. Pudding would be like the old school dinner puds, sponge pudding and custard etc. If that's a definite no go then maybe another smoothie/milkshake before bed?

An example of what my dd was having a that point would be:

porridge with double cream plus small glass of juice- 700 cals.

Piece of cake - 250 cals

Lunch would be scrambled eggs on toast (made with double cream) and a yogurt or bag of crisps (other lunches were tuna baguette, beans on toast with grated cheese, homemade soup made with double cream) 700 cals plus

Snack - cereal bar 200 cals

Dinner and pudding as as above 1200 cals

Milk drink - 150cals

So over 3000 in total.

Bagpuss** is your dd getting any therapy? It's at this point when they're getting back to a normalish weight that it's most useful I think. I know what you mean about feeling like you're in an abusive relationship, I used to feel the same. Is she going to school? I wonder if getting a few more distractions might be helpful.

@WhatHo those are amazing cal amounts so well done.
Adding an evening snack would make so much difference. Is there any reason she eats dinner so late? We have dinner at 6pm so by 9pm DD was able to have a snack. If you could get another decent snack in her you'd be nearer 3000 kcals and weight gian should go up. My go to was a smoothie that packed 400 cals (or 700 with d cream in). It was less than a pint in volume and she slurped it in front of TV etc.
The recipe was
100ml ff milk
100ml ff greek yog
40g oats
Couple of strawberries
Whole banana
2 tsps honey

Wizz up.
I used to take some milk out and add 60ml d cream. (But after it was whisked so she never noticed) or you could try icecream in it.
My DD drank these all the way through her illness and way beyond. In fact she has only just stopped!!
Not quite 90% wfh is still a way to go I'm afraid. My DD only really started showing any improvement exercise wise at 95% and as I have said before it's taken a while over 100% to get back to normal
I know it's tough and feels interminable. The weight takes so long to go on. Pls take heart that it will improve.

She refuses to engage so she's not had therapy. Camhs remind us at each visit that she'll be referred to adult services at 18 and there is less support. It's frustrating as we met the psychologist and she is lovely.

Our camhs appointments last 10 minutes as dd doesn't speak and leaves the clinic as soon as she's had her obs. We go once a month and I have a phone call with her therapist in between appointments but it's only really to touch base and check we're all still alive. That's it. I've found a local private counsellor and a very highly recommended hypnotherapist but again dd just refuses to even discuss going to them. I send her online links to kooth etc but I don't think she looks.

She's stopped attending sixth form and works at home. I'm not sure how much she's doing really. Lack of social connection is definitely making her worse.

So we're just stuck really. She eats (with rules and restrictions) and she's safe and cared for but her life is small. She's sad and lonely but too stressed to go out into the world.

Bagpuss Is there any groups or clubs she could join? Volunteer work or a pt job? Keeping my dd busy has definitely helped her mental health, too much time to think is never s good thing ime.

Have the college offered any support to get her back into the classroom?

Has meds been suggested? Sometimes antidepressants help take the edge off when they're really struggling.

With such a complex illness do you ever know or believe if your DD is robotic eating or when she is intuitive eating?

DD has been weight restored for eight months, about 108% wfh now - she eats unsupervised at school and OK with her meal at home. She eats ‘rushed’ if you know what I mean - but food rituals have mainly ceased (cutting up food etc).

This morning she got up early as she went to bed early, straight to the kitchen and made herself a decent breakfast - I asked why she was up so early and she said because she was hungry - I want to believe her, there have been that many lies that I don’t know if this is simply robotic and the answer she wants me to hear or she is in fact hungry. It may seem a strange question but her eating/weight restoration incentive is for her to get to college in September - is this natural eating or forced eating? What are others experiences, do hunger cues return after such a relatively short time in recovery, are these natural?

College have been great and she is in touch with teachers and gets given work which she does do. Ultimately it's not the same and she must be very behind by now.

She's got dysmorphia so getting her out of her room, let alone the house, to face people is really difficult. When we have to go out for appointments it's such an upheaval.

I mention meds appointments but she's not been offered any. I'm not sure if it's because she won't engage at all. If she was asked directly if she wants to take them she probably wouldn't answer anyway and if she was given them I'm not sure she'd take them. I have to hover over her to get her to take her vitamins.

D1 i think it will probably take years for us to relax and truly believe our children are better and able to eat 'normally.'

Your dd sounds like she is doing really well, I expect she is telling the truth and she is hungry. That's great she is eating independently and following hunger cues. Keep a watchful eye as with the increased freedom the ED can sneak back in but for now it does sound like your dd is doing well and wants to move forward.

Bagpuss do the ED team think with food/weight gain the dysmorphia will lessen? Your dd sounds so low 😕

Girliefriendlikespuppies Yes I think they're waiting for more wfh first but I read on here and on the fb group that some get meds as a matter of course. She is gaining but still very slowly.

D1ANA22

It sounds like your dd is doing really well and having college as an incentive is great, but I can totally understand the need to be constantly vigilant and I guess as parents the fear of ED getting it's grip again will never completely go away. College as an incentive is great and I hope she continues doing so well.

You sound just like me!!! It is hard to trust again as the ED is so untrustworthy.
It's taken me 19 months from weight restoration to get to the point were I have more or less stepped back.
My DD started to follow hunger cues about 6m in and I too didn't believe her.
At some point the carer has to step back and allow more independence. And take that leap of faith. It is v hard and I don't blame you for not believing.
At 108% wfh tho she has wiggle room should the worst happen.
My stepping back has had benefits I wouldn't have predicted. She sometimes eats more than I would expect (esp in run up to period) and has tried new stuff. Gravy went on a roast last week at dinner. My DH and I shared our amazement later on!
I think.hyper vigilence is normal but consciously stepping back is also a bit of a relief.
And yes i would say my daughter eats intuitively. She has things she avoids but I now believe that's a usual 15 year old thing/ personal preference rather than the ED.

Just want to cry. After a bad appointment with camhs last week, with further weight loss I thought I had watched dd so carefully. Had 3 good meals, 3 snacks. Just found a plastic bag smelling of vomit, and lot of empty food wrappers

Hi all,

Big changes since I last posted. Firstly thank you so much @Lottsbiffandsmudge and @Girliefriendlikespuppies for your advice. Have copied and pasted the smoothie recipe : )
She put on 300g between last Friday and Wednesday but despite that we have pulled everything forward as suggested and am giving her Ovaltine with cream in evenings.

We had our weekly meeting on Friday and our lead pulled in the psychiatric consultant who took DDs exercise compulsion very seriously. She was told very firmly (with additional diagrams of mine brains for chemical change!) that she could not do any exercise at all anymore. DD wanted this (she feels tormented by it) but we also knew that she wouldn't be able to stop without some reduction in her incredibly high levels of distress and compulsion so she was also prescribed Olenzapine. The last two days have been... peaceful. She is still anxious and horrified about no exercise but doesn't seem to hit the extreme peaks that she was experiencing several times a day, I think it is smoothing things already.

@BagpussSaggyOldClothCat FWIW DD is 89% WFH and 10 years old so I cant see any reason your DD shoud not get this kind of medical help - not neccessarily olenzapine which is an antipsychotic but an SSRI, it seems cruel for her to suffer so much.

Just this week she's starting to look 'normal' - a noticeable bum and her shoulder blades don't stick out like wings anymore though I can still see the bones on her sternum. Every time a line on her body fills/smoothes a bit out I can feel a little knot in me dissolve. 100%WFH - fingers crossed - we're on our way.

Oh @WhatHo I am so pleased for you and your DD. Olanzapine dis help.my DD. It wasn't a magic Bulley by any means but it dod take the edge off esp to start with. Partly because she was wiped put by it so finally slept which made a difference.
We had to increase her dose after a few weeks as its efficacy dropped as her body adjusted (and got bigger) but I am so pleased you have this extra help.
Well done on increasing her calories as well. She is so young and should make a full recovery, esp with your support.
Don't rush to come off olanzapine either. My DD only reduced her dose once well over 100 % wfh.

Gosh sorry for all the typos

I am so sorry to hear this. This illness is so deceitful. I have no specific experience of vomiting so no specific advice but wanted to send empathy and support.

That's rubbish, I know how soul destroying to find stuff like this when you think things are going okay 😕 it's really shit. Have you told your dd? I found 'outing' the ED helped dd stop some behaviours, it was like she knew she couldn't hide it anymore so had an excuse not to do it iyswim.

Whatho that's great news, I'd forgotten how young your dd is, I would really go full throttle on the fats and calories now. I gained a lot of satisfaction in stuffing cream into everything, it was like I was giving the ED two fingers and a big fuck you anorexia!!

Now dd is generally in a better place she honestly doesn't care that I did this to get her better, she knows I added calories (maybe not the full extent 😉) but understands she was unwell and her brain was not working properly. I had to make those decisions in her best interest.

She told me at one point she wouldn't put toothpaste on her toothbrush as she was worried about the calories in it 🤯 she recognises this is madness now.

I’d appreciate any words of wisdom/ support.
My 13 year old has been placed on a section 2, currently on Paeds ward, will be transferred to an Eating Disorders bed early next week.
Am feeling so very anxious for how this will be for her.
Have tried so hard to avoid this. Feels brutal. Don’t know how Im going to get through this and stay strong for her.
Feels never ending..

NC for reasons that will come apparent. Relationship with DD is rock bottom, despises me since diagnosis and my role as DM refeeding using FBT. DD now a few years older and we have no positive relationship. After a big falling out DD spoke to school counsellor recounting incidents when she was very ill - but rather one sided how DH and I restrained her (when she had violent outbursts) and controlled her whole life at that time (no shit).

Counsellor has made a referral to MASH referring to emotional abuse, controlling behaviour etc. - no mention of DD’s eating disorder. We are going to be interviewed by Social Services, probably investigated by the Police due to our physical (DD refers to violent) behaviour. It was the other way, during phase 1 our house was smashed up - DH violently attacked (we did call the Police once who spoke to DD and asked if we wanted to charge her - of course not).

Anyway, we are where we are now. Want to source some resources (online videos, articles etc) that explain and / or show the behaviour of violent abusive anorexics when distressed - to make Social worker understand what we have dealt with. All help and information welcome, thank you.

Nomore I had a very similar experience with dds school counsellor, was told I was 'controlling' (yep I am if it's that or my dd starving to death 🙄) and God knows what else dd told her but she said to dd 'don't worry when you're 18 you can escape' 🤦‍♀️

Taken out of context FBT does sound insane but it's the prescribed treatment. You can download the NICE guidelines on ED which explains FBT for children. Can Camhs write a letter explaining how ill your dd was and why she needed restraining?

I'd also write to the school counsellor, I sent an email to dds, explaining what FBT is and trying to put some of what dd was saying into context.

It's put me completely off finding dd a counsellor though 🙁 unless they are ED trained they can cause more issues than they solve.

I'm so sorry this sounds really traumatic, I haven't any direct experience but I do know of lots of parents who now say that having their child sectioned and cared for in a unit was what saved their life.

Sometimes despite doing absolutely everything right the ED is just too strong to fight at home.

The FB group maybe useful for you as there will be other parents with direct experience.

This illness is so so cruel.
I have no direct experience but agree with girlie that to an outsider with no ED experience FBT looks controlling. Because that is the point. I'd refer to NICE guidelines too and just calmly explain to any one from SS that you were saving your DDs life.
Do/ did you have CAMHS support? I would get them involved in any meeting if possible or ask them to provide a letter outlining her diagnosis and FBT.
It sounds v much to me as if your DD is still in the grip of her ED? If that is the case it's her ED doing this not necessarily her...

Again I have no direct experience. But often a hospital placement is a positive thing once the trauma and shock has worn off a little. I guess from your post that you have been fighting this at home?
Sometimes the ED has too firm a hold and specialist hospital help is needed.
Try to look after yourself whilst supporting your DD. Try to take some time if possible to build back your reserves for when she comes home.

Hi everyone, been a long time since I posted. Hope you’re all doing ok. Will read through in a bit.
can anyone do a wfh for me please 23/05/2006 162 cm 44.6 kg. Camhs have discharged dd today because she doesn’t engage at all and eats just enough to maintain this weight (ish). They said either she’d do better if allowed to get on with her life OR she may stop eating entirely again and be hospitalised which may be what she needs to decide she needs to get better.

@Lottsbiffandsmudge @Girliefriendlikespuppies
Thank you very much. Feeling just a little less anxious in the light of day.
Having waves of panic at the thought of leaving her on the ED ward and also the thoughts that she may never get better.
Need to try and take one day at a time and the point of trying to rebuild some reserves is a good one. Am completely physically and emotionally drained.
It’s such a traumatic experience and I’m sorry that so many others are going through it.
Just hope she can start to recover.

So sorry I come here all the time to moan. I literally have no one I can talk to who will understand. Things are moving quickly here and every day there's another challenging. If this is extinction burst it's hell. I think dd is developing ocd. Dh or I now can't go in any room that she's in. This is horrific for me as dh works from home. Just the sound of him coming down the stairs sets off huge anxiety in me in case he bumps into dd. She will text me if she sees him and threaten to harm herself. Dh's work is mostly talking in the phone or online and she complains she cam hear his talking. He's moved his office to the room furthest away from her but the WiFi is shit so sometimes he's taking a call on the landing and my phone blows up with messages.
She has issues with ANY noise. She texts if she hears anyone pass outside her room, if she hears any sounds from the kitchen, if the washing machine is loud, it's loud when it spins like they all are, if someone rings the doorbell. I spend all day fighting fires keeping out of her way, creeping around, scared to bump into her, scared to use the washing machine. I get messages saying 'I can hear the washing machine and I want my life to be over'. I can't leave the house ever as I have to be here for her messages so I can assure her she can leave her room without seeing either of us. I'm getting very low being controlled every waking moment of my day. Work and a social life for me are now just a distant dream.
The only way to ease this a bit is if dh moves out so I can control some of the noise and worry of him bumping into her. We've talked about it and are both devastated that it might come to splitting the family.
I'm constantly terrified she'll go through with her threats to harm herself.
Life is just hell. I can't eat properly myself. I can't even boil the kettle without getting messages. I'm starting to see only one way out of this myself.