Support thread 9 (!) for parents of young people with an eating disorder

[Girliefriendlikespuppies]

Thought I better start a new thread, can't believe we're on to thread 9 😳

Hope all the regulars find it!

Hen honestly to me it sounds like anorexia, especially the voice (Bob) telling her not to eat. Anorexia is primarily a biological illness that is triggered by weight loss, the brain takes a massive hit and the sufferer becomes more and more irrationally afraid of eating and food.

Body image can trigger the weight loss in the first instance for some kids but it can be a multitude of other reasons as well.

I think you need an urgent referral to a dietitian, I'd also ask to ge referred to the ED service as if nothing else they can monitor her physical obs. With food restriction in children the parameters are different so you need someone who knows what they're looking for to look at the blood results.

Thank you for the new thread Girliefriendlikespuppies

Thanks I always find starting new threads a bit tense incase no one shows up 😂

Probably should have said in first post, this is a thread for all parents or carers of a young person with an ED, we are all at various stages in the ED journey and we are here to share our experiences and support each other.

Everyone is welcome 😊

I'm here... (sadly!). Thanks for starting the new thread. Here we go again.... Well, that's how I feel this morning anyway... Deep breaths all. We've got this.

Thanks for the new thread, i too am feeling a bit glum about it all this morning!

Joining as my partner's DD is suffering from AN. At the very least this thread helps me know what not to say as I support him, so thank you all.

Thank you @Girliefriendlikespuppies for starting the new thread. I have some specific questions for those with more experience than me of this journey - background is DD has been discharged by the ED service at the end of January 2023 over 100% weight for height. Meals were monitored at school - but now exams have finished she has more time and independence. My specific questions are -

1. She doesn't normally drink coffee but would you allow a cup of coffee a day. This is triggering for me as before diagnosis in 2021 she was drinking coffee and we thought that was part of growing up - now we feel like it is the ED expecting caffeine to speed up her metabolism. What would you do?
2. My thoughts are during the school holidays - wake her early for breakfast every day. She tends to have cereal (just enough).
3. Independence - I don't trust the ED to make proper food decisions when DD is out with her friends. How do I tackle this? Evening meals will be with the family which I do control - should I continue with a dessert (bearing in mind she is missing a dessert that she would have had at school)?
4. College and going out - she has a bank card that is shared with me specifically for food and drink purchases - however from the app I do not know if it is a sandwich or a fizzy drink that is purchased. Independence - I don't trust the ED to make proper food decisions when DD is out with her friends. How do I tackle this? Evening meals will be with the family which I do control - should I continue with a dessert (bearing in mind she is missing a dessert that she would have had at school)?
5. She doesn't want to come on holiday with DH and I - Grandparents can stay at the house with her, I would give them instructions but not ask that they are the food Police - that is unfair on them. What are others experience?
6. Weighing. This was my comfort knowing that DD has maintained (reached 106 wfh) - now with no weighing and the baggy clothes I am not sure of where we are and if she is deteriorating. She hated her OBS being taken, how do you step back but at the same time monitor the health of a non-compliant 16 year old.

Thinking about this is never ending and exhausting. DH does not go into as much (any) detail as I do but I tend to overthink and explore every possibility. This interferes with my work and my (non existent) social life - I will admit that coming up to two years on this I am not coping well. I read somewhere about 'carer's exhaustion'. DD seems relatively OK and getting on with her life with friends and some activities, and eating independently (although not enough in my mind). I think I have PTSD from the refeeding when every mouthful mattered and I haven't moved on from that mindset. I read on the thread about feeding them until they learn to feed themselves.

Apologies for the long post - I know others are in the midst of the early battle and my heart goes out to you, please stick with it as there is no reason why it should not improve.

Sorry - I have copied the same text in my question regards to independence.

She doesn't normally drink coffee but would you allow a cup of coffee a day. This is triggering for me as before diagnosis in 2021 she was drinking coffee and we thought that was part of growing up - now we feel like it is the ED expecting caffeine to speed up her metabolism. What would you do?

Dd has the odd coffee from Costa, as long as it feels natural rather than something she has^^ to have I'm okay with it, I'm happier if she has the milkier ones though.

• My thoughts are during the school holidays - wake her early for breakfast every day. She tends to have cereal (just enough).

Yes sensible, I do the same.
• Independence - I don't trust the ED to make proper food decisions when DD is out with her friends. How do I tackle this? Evening meals will be with the family which I do control - should I continue with a dessert (bearing in mind she is missing a dessert that she would have had at school)?

There's not much you can do other than ask to see photographic evidence if you're really worried, I trust that dd will eat something when out with friends but I know she'll go for the low calorie options which is annoying. Yes to keeping on with puddings and high calorie meals at home.

• College and going out - she has a bank card that is shared with me specifically for food and drink purchases - however from the app I do not know if it is a sandwich or a fizzy drink that is purchased. Independence - I don't trust the ED to make proper food decisions when DD is out with her friends. How do I tackle this? Evening meals will be with the family which I do control - should I continue with a dessert (bearing in mind she is missing a dessert that she would have had at school)?

My dd still takes a packed lunch to college which I hope she eats....

• She doesn't want to come on holiday with DH and I - Grandparents can stay at the house with her, I would give them instructions but not ask that they are the food Police - that is unfair on them. What are others experience?
I've left dd with her grandparents before, they've been briefed on how much food she needs. The break did me some good!

• Weighing. This was my comfort knowing that DD has maintained (reached 106 wfh) - now with no weighing and the baggy clothes I am not sure of where we are and if she is deteriorating. She hated her OBS being taken, how do you step back but at the same time monitor the health
I struggle with this, dd isn't particularly shy about her body so I can keep an eye for obvious signs of weight loss but I know I've missed signs before. As long as I see dd eating and she doesn't start trying to reduce the food going on I'm fairly happy she's stable...

Above post for Nomore!

Nomoreplease23

Great questions as these are issues that many of us face as our ED teens become more independent. This is how I deal with some of these issues.

We only have decaff coffee in the house but it's a refill pouch that goes into a plain coffee jar so dd doesn't know. I don't think even dh has realised it's decaff. Ww have decaff teabags also.

Can you try and take charge of dds breakfast? Make out that you're doing it to be helpful and save her the time? I do dds overnight oats and an iced coffee and leave them in the fridge for her.

Being out with friends is something I struggle with. It's only about once a week at the moment. I always remind her that there's money in her bank for food. They generally get a meal deal or mcdonald's. She hates me asking what she's eaten but I know it will be the lowest calories possible. I just try and enrich the meals she has at home as much as possible to make up any deficit. If she starts going out more I will have go try and get more control but I don't know how.

Dd doesn't have desserts. We never really had desserts as a family before ED so that's something I've never really been able to implement.

Are you able to get her to the gp practice to have obs done occasionally? My dd also hates it but understands it's non negotiable. A lot of weight loss can be hidden under baggy clothes as I know from experience, sadly.

Dh and I are a long way alway from being able to leave dd to go on holiday. She's very dependent on me for pretty much everything. I keep telling dh to go on his own or with friends but he won't.

PTSD is very real and I'm triggered by all sorts of things. I keep telling dh when dd is better I want to move as our house is full of awful memories now.

It's very hard to let them go and get on with their lives. I know at some point I won't be her linchpin any more and she'll be in total control. It's scary.

@Girliefriendlikespuppies thank you for the advise and reassurance - the coffees are very irregular, we don't have coffee in the house so maybe not for me to worry about. How long did you go away on holiday for? I'm conscious that DD's younger sister (and the rest of the family) is missing out on breaks and holidays - we planned 10 to 14 days.

I will look at 'cool' lunch boxes for college.

How do you cope with sleepovers, DD has sprung one on us for Friday evening - is it an early pick up in the morning? All I hear is 'we have eaten at ..... house' or 'I've had my breakfast before'.

Regards to weight, you use the word 'stable' and maybe that is what I should be concentrating on. My mind is still stuck on the weekly weigh ins when a 300 gram loss would send me into a tail spin, Dd is 22kg above her hospital admission weight - we are vigilant and perhaps I am hyper sensitive.

@BagpussSaggyOldClothCat yes the independence frightens me. DD takes control of her breakfast - usually she is OK, this morning I could see there was not enough and when challenged 'she had eaten it in the kitchen before I saw her ...'

Being out of the house will increase during the summer holidays. I hate asking DD as she gets angry and also lies so it is counter productive - but then I think I am am challenging the ED's freedoms.

DH doesn't want us to continue with desserts (we have both put on some weight) - does your DD have snacks?

DD will wear shorts and short sleeve T shirts around the house and her legs look healthy, as do her arms and face. It is the gradual weight loss that can happen in plain sight that I fear - I know that the scales never lie. Possibly we could go to the GP for OBS, but at 16 could she refuse, she really doesn't like her parents or anything we say / do.

Sorry to hear your DD is so dependent on you - ours is the opposite and wants to do everything herself, away from the family and the home, where no-one is monitoring her and I do understand that, if she didn't have an ED I would let her go anywhere safe.

Totally get the house thing, we have said the same - I actually hate going home after work. We had plans to build and renovate before DD's illness, now we will touch up until the day we move. How sad, this is our family home and now it feels like a warzone. No point moving now as the problems will move with us.

I worry when DD is in control, her decision making is terrible - she is so immature and socially anxious and so easily led by the wrong people, possibly autistic.

Thank you for your support. Today hasn't been that bad so far - that is the time when I reflect and the sadness creeps in.

Nomoreplease23

My dd doesn't really have snacks. If she does it's fruit or an ice lolly and sometimes a skinny whip. I bloody hate the 'skinny' shit but she will eat them.

Dd doesn't like us parents either although she's so dependent on us for everything. It's sad. Poor dh was trying to be brave on father's day (dd ignored it for the 2nd year in a row) but I could see he was really down. It's hard when happy families are thrown in your face everywhere.

Thanks for the new thread.

Thank you for the new thread and all your support. Daughter is eating SO little this week. I cocked up at lunchtime as I’d forgotten her shake 😢 I’m distraught as I know she’ll be losing weight this week. At what point do I take her in? We’re waiting for a paediatrician referral but nothing mentioned by gp about dietician. She had bloods two weeks ago that were normal. I’m guessing she’ll need a repeat of them asap.

Hi @Hennups13 so it's been 2 weeks since her last obvs and she has continued to lose weight.
How many cals a day is she eating
Seems like 900 (3 meal replacements) plus some bits and pieces?
How much weight has she lost on those 2 weeks and how much does she weigh now?

Sorry i posted too soon.
I'd be worried. Average cal requirement for a i year old girl is c 1750..she's getting roughly half of this?
As others had said the naming of Bob is a v worrying sign to me.
Things can go downhill quite quickly.
I'd get her back to the GP as a min for more obvs but really she needs to see an ED team or A&E who know what they are looking for results wise.
To my mind she can't wait for a dietician referral.

Yes, as well as the shakes, we try to get calorific ANYthing into her. But she says she’s full or has tummy ache. Today she’s started whinging about drinking the shakes, so having to take iPad away.
she name the throat thing Bob because the psychologist asked her, “so, what would you call it in your throat? A scratch? A lump? A blockage?” Daughter took it very literally, as in “what would you call it?” And she said Bob. She hates Bob and is desperate to eat.
I’ll get onto the gp first thing tomorrow morning for more tests.
The 7lb weight loss is over about 3.5 weeks. Last week was 1.5lb.

Nomore the longest I've been away I think is around 4 days, I'm not sure I'd feel happier about anything longer than a week tbh but I suppose it depends how confident you are the grandparents will be on it food wise.

Dd has a very boring Tupperware box for her packlunch!

Can you give her snacks and bits to take to a sleepover?

It is a nightmare as they get older, dd has a boyfriend now and that's coming with its own issues including having to worry about contraception 😳

Im not really sure how you get them passed this phase unless they want to recover, dd is still stuck on her 'rules' and very rarely will break them. She's talking about travelling and going to uni and I just think 'how??' She can't even finish a sandwich or help herself to a snack or drink unless it's within her daily allowance.

Hen I think I'd be taking her to a&e, the weight loss is terrible and the longer it goes on the harder the road to recovery will be. It definitely sounds like your dd has tipped into anorexia through the weight loss, the food refusal, feeling sick, giving it a name etc are all classic ED traits.

With 16y olds you are in a difficult situation as HCP consider them to have capacity to decide for themselves and without permission won't inform parents.

Thanks for starting the new thread @Girliefriendlikespuppies . @BagpussSaggyOldClothCat My DH was also very upset on Father's Day. DD sent him a card from the Unit (after I asked her to and said I'd pay), but then she told him everything he'd ever done/said wrong when he went to visit her on Saturday (which he really struggled to do, as I was away and he doesn't drive and it's a nightmare to get to the unit via several forms of public transport and a long walk). Then she sent him away. And wouldn't speak to him when she called me on Father's Day. He was really hurt. Now he's frantically trying to spend money he hasn't got on Taylor Swift tix - she's a big fan - I think to try to get into her good books. I do feel for him.
@Notagardener The age thing worries me too. DD will be 18 in a few months - then we'll have no say at all. What happens then if she decides she doesn't want treatment?

Ah NanFlanders your poor dh. He sounds like my dh who despite the constant rejection and hurtful comments would still do anything for dd.

Best of luck to him with the tickets 🤞

@NanFlanders and @BagpussSaggyOldClothCat my DH does most of the running around and admin for our daughter - he says she is always on his mind - he can't sleep and has aged 10 years since 2021 - he isn't the same man and it shows.

He wasn't bothered about fathers day - reaching the end of the (any) day knowing DD has eaten OK and without confrontation is enough for him. His world has shrunk, he knows he has put his life on hold and I do tell him to pursue hobbies, interests and to socialise but he can't - he is waiting on DD in the hope that she will get better. He did realise early on that buying DD things backfired on him, he then saw the manipulative side of the ED / teenager and that didn't end well.

Hope everyone is OK today.

@NanFlanders has me thinking regards to age - as our DC get older how do services change - ie at 16-18 can they deal with HCP directly and cut out their parents? After 18 their medical notes and decisions cannot be made by parents?

It is strange as they are mentally ill - do the NHS deem them to have capacity nevertheless. @myrtlewilson what has your experience been. Our DD is defiant and non compliant, and whilst she is now discharged - if she were to require services again how would this work? In my eyes they are still children and lack capacity (the ED makes them lack capacity).

So we HAD a referral to the paediatricians but they’re declined to take DD9 on. They reckon CAMHS us more appropriate. Oh joy, 1.5 year waiting list for those eejits.

Who the actual f**k will help me with my child, who is eating maybe 900 cals a day and losing 1-2lb a week??