Support thread 11 for parents of young people with an eating disorder

[GrannyRoberts]

Hi all, here is our new thread. I will attempt to post a link on thread 10.

@summertimesadness24 my work also don’t work from home but I went in morning then picked dd up from school to have lunch and then took her back and they allowed me to work at home in the pm so I didn’t have to travel back and make more time up. I also kept a spreadsheet and worked my day where I didn’t usually work to make the time up as I also had appointments to attend. They should be helpful because the other option is getting signed off and then they don’t get any work out of you.

So She's refused lunch .....eat the 4 slices of cucumber that was on the plate as we like that with our chilli

She's had about 180 calories today

She's quite resolute about not going to nans.....I've said maybe we can rearrange for Easter and she said 'yeah maybe'
She would normally jump at the chance of going
She would rather not go if it means eating
But she has to eat here !

Yes sitting in front of tv as table didn't work

Still no fluids drank - just morning juice over a few hours but no water/squash etc

I'm just worried my contact won't get renewed in April as I'm oh a fixed term contract ( although been employed for same company 5 years so think I have employment rights if that means anything?

I spoke to DS and told him I was concerned that he had lost weight and asked if he was having issues with food and he straight up denied it. I wasn’t sure if I should tell him I read his messages?

WoodenTrain

I wouldn't mention the messages in case it affects his trust in you. My dd denied she had a problem for a long time and it was impossible to communicate with her about it as she just shut down. It was only really when we got the diagnosis from camhs that she relented and accepted she was ill and we could talk about it. She has since said that being diagnosed was a relief. Your ds may be feeling worried/confused about what's happening to him so I would keep telling him you're on his side and you want to help him and hopefully he'll open up to you.

Summertimesadness24

How is today going so far?

@BagpussSaggyOldClothCat thank you for asking well she eat reluctantly yesterday so I did send her to her nans - unsure if I should have but I think it will do us all having a break

So she IS eating there but nothing like her meal plan but the nurse said as long as she is doing 3 meals 3 snacks but from what I can work out it's nothing like she would have at home so if by Sunday that's the case and I can't see it then we will just update the clinic at the next appointment ( having them weekly) and see how she gets on

It's not ideal but maybe a visit at nans will be a nice change of scenery for her and by the time she comes home we can have a reset

She's also at her dads half way through next week so a bit of a disjointed week

Dads in on board but only has her 1
Night every other weekend but next week will be a longer stay
He has the meal plan and will stick to it like I've done

summertimesadness24

Enjoy your break, and like you say, hopefully the break from each other will be a good reset.

Hi everyone I'm just back from a night away with dd celebrating her 18th 😱 still can't believe she's 18!! She's had a lovely time and it's been nice to spend some time with her. Food wise she's doing pretty well at the min (although don't want to jinx it!)

Welcome newbies although sorry you're here.

Woodentrain id take him to the GP for a check up, if you can ring in advance and explain your concerns re his low weight. He should have his BP (lying abs standing), pulse, bloods and an ecg checked. The eating disorder service is a completely separate part of Camhs so you'd need to ask to be referred to them even if known to the other Camhs.

That does sound like a dangerously low weight for a 16 year old boy so you're right to be concerned. Denial from them is completely normal and actually a recognised part of the illness (there's a medical term for it that I've forgotten!) Who was he messaging re food restriction? Do you know how many calories he's eating a day approximately?

Summer I was signed off with stress twice to look after dd, both times for around 6/8 weeks but I'm lucky that I receive sick pay.

You might need to check your employers sick pay policy, you can also check which benefits you might be entitled to if your income drops and consider applying for DLA for your dd.

I think your dd sounds too unwell for anything other than sofa or bed rest tbh (sorry) at 800 cals a day her heart will be really struggling to find the energy it needs to keep its normal function. I think it was curlys dd who was really similar and ended up in the high dependency unit when a&e finally took it seriously 😕

So today she's managed around 460 calories (without dinner ) she's eat as I say but no where near enough
When she gets home Sunday I'll have to re try and luckily it's half term
Then next week I can decide if I need anytime off
I only get stat sick pay so I don't know if I can get any other help? I'll look into it

I’ve worked out that his weight for height is 80% but not really sure what that means.

I’m really not sure how many calories a day he’s eating - obviously not enough. He eats a main meal most nights but often skips breakfast and lunch. When he has breakfast/lunch it’s usually just a slice of toast or sandwich and maybe a packet of crisps. If he eats a large meal at dinner he won’t eat the next day as he will say he is still full.

He’s autistic and has always had a small appetite. When he was younger he would say he didn’t like the feel of food in his stomach. But he was aware he was thin and tried to gain weight. A year ago he was so pleased when he reached 8 stone but now he’s back down to 7 stone 8lb (48kg). He’s 173cm tall.

It’s his cousin he’s been messaging, he talks about looking at the nutritional information on packaging and it making him feel sick. One message talks about throwing up a pizza he ate.

@WoodenTrain you can look at the MEED guidelines on the Royal College of Psychiatry website, they use a traffic light system of risk factors, and wfh is one. Being below 80% makes the risk Amber but there’s lots of other clinical and behavioural aspects too. The guidelines are what the ED team will be adhering to, so gives you an idea what to expect.

Woodentrain 80% is significantly low, it means he is 20% lower in weight than the average teen of his age and height.

In ED terms it's usually the point at which admission to hospital is being considered, they should be on complete bedrest and need a careful plan to start getting the weight increased.

Does he weigh himself? I'd start by taking the scales away or blind weighing him. My dd is also autistic, there's a close link between autism and EDs, I believe it's due to black and white thinking (low weight = good, high = bad, some foods bad some foods good etc.)

You really need to take him to the Dr for a full check up. My dd always ate one decent meal a day but it was no where near enough. Teenagers need around 3000-5000 calories a day, boys especially.

I really don’t know what I should be doing, the viewpoints of the professionals are so confusing and I’m really muddled. If inpatient treatment is considered around 80% wfh why am I being told to crack on as normal with DD at 81-82%? If other children are still managing one meal a day and not refusing to eat but their weight is being taken seriously why aren’t we?

Do I need to do more? Push harder? We are letting her eat to hunger because GP isn’t bothered by her weight (which is around 800 cal a day). I have stopped pushing milkshakes and things as it’s all just so exhausting if she’s just meant to be skinny, but I’ve got the next ten days off work so I’m going to pull my finger out. I feel like I’m going through the stages of grief and I’m teetering between bargaining and depression, while DH is still firmly in denial, so all the weight of it is on me.

I would be grateful for some honest opinions!

Glitter I don't understand why you're not getting more support, I feel like you've just been fobbed off tbh.

Are they still monitoring her physical obs? If they think it is all anxiety are they treating that with meds and therapy?

Ahh @Glitterfarti I really don't know what to suggest. We still haven't got a diagnosis and they're trying to put all the pieces together but they are wondering if ds is anxious. No treatment for this yet as with weight restoration his confidence is coming back and once that's stable and his activities reintroduced we might know a bit more. I do feel your ed team have just signed you off though and we were originally taken on as regardless of why the weight was lost it needed restoring and they were the best people to help. Does your dd get distressed or is she managing to eat ok? How about seeing the gp without your daughter discussing the meeds guidelines or a different gp may have a different view?

He doesn’t weigh himself I don’t think as the scales are in my bathroom. He pretty much only moves between his bed and the sofa anyway and isn’t going to school at the moment unfortunately. He’s also been self harming but I hadn’t noticed as he’s always inside his massive Oodie.

I shall call the GP in the morning and get him a check up

@Girliefriendlikespuppies , she’s having weight and height done at the GP, but no other observations. She had six sessions with a counsellor but had identical mood scores at the end as at the beginning, so don’t think it was a good fit. I’ve got a private cbt assessment booked this week which is pushing the boat out a bit but I’m so worried she’s cementing maladaptive strategies which will hugely affect her teens and she might stunt her growth/delay puberty etc.

No MH support, I called CAMHs twice last week and was told someone would call me back but still waiting. I thought it might be her age (11) but sadly reading everyones stories on here it doesn’t seem especially young.

I think I will take MEED printout next time we see GP and try to be more assertive.

@Glitterfarti I think you're being fobbed off too. The fact is that your dd is very underweight. No one can disagree with that. If it's because of anxiety then it's significant enough to need intervention. And that's it! She either needs intervention because she has AN (which I would think it the case), or she needs intervention because her anxiety is preventing her eating. There isn't a diagnosis or formulation which suggests the best treatment is for you and her to be left alone to your own devices. So whatever the diagnosis is, the treatment is that she needs treatment.

I'm so sorry you've got such a terrible level of support. It's not right...

Caught my dd sneaking in exercise. She’s said she’s been doing it for the last two weeks. Was in her room doing crunches. It just feels now like I need to watch her all the time. We did have a cry and conversation so I hope it sinks in. she needs to have another snack as been losing weight so have explained the more she does this the more she will need to eat so it’s just making it worse for herself. She did seem to understand this. I do think she wants to get better but her brain won’t allow it. She cried and said I couldn’t even have cake on my birthday which is what made me cry. It’s just so sad she’s 12 it’s such a miserable and cruel illness. I wonder if things will ever get back to how they were.

@Glitterfarti I'm so sorry, you're really in a difficult position. 81% is very low. My DD was admitted to a medical ward when she was at 76%, due to poor obs (temperature,.heart rate, BP, bloods), but the reason she was then transferred to a psych ward rather than home for FBT was because of her extreme exercising and distress/violence at home, coupled with the inability to take on enough calories leading to very rapid weight loss. We had CAMHS intervention at home but they couldn't get through to her either so it was decided we really couldn't manage FBT at home.

I don't know what to suggest for the best. It seems that whatever the cause, she needs to gain weight and you should be supported in that. Has anyone looked at her historic growth curves? Where she naturally sits may give some indication of what's healthy for her? How does she react to the possibility of eating more? I think if the GP is so sure its anxiety, and she's not at a healthy weight, for her, because of that, then pushing for psychiatrist support (with the potential for meds) may be your best bet. CBT also not a bad idea, but do you think her brain is nourished/functioning well enough to engage? They wouldn't look at anything like that in hospital until my DD was over 90%.

@Whippetlovely so sorry to hear about your discovery. Its such a cruel illness, and the compulsion is so strong. Your poor DD. Positive that you've been able to talk about it and she's been open with you. I hope today is better.

As CBT has been mentioned, DD got good results with it. Started when WFH 76%.
But usually for older teenagers 16 17

So a little update re my DD

She's back from Nannie's and she did around 900 calories a day

She's refused any food since she got home 3ish and said she only eat as she wanted to stay at nans but she's done eating, feels guilty and can't eat anymore

So she's in bed resting and I will offer next snack and said we will have to cancel plans this week if she can't eat ☹️

Snack refused.... so I've said it's bed rest

summertimesadness24

When is your next appointment? 900 cals is extremely low and I should hope they won't just weigh her and send her off home again without a serious plan to get her to eat more, which may well be getting her admitted.
Really feel for you.

Whippetlovely

Sorry to hear about the exercising but glad that you managed to have an open conversation about it and a bonding cry together x

Girliefriendlikespuppies

So glad dd had a good birthday and things are going well at the moment.

Glitterfarti

Horrific that you're having to fight for proper ED treatment for your dd. How on earth can a child who is restricting food and losing weight just be fobbed off as anxiety? So angry on your behalf. Can you request a different GP?

Sending love to anyone I've forgotten. My dd is struggling with her anxiety and depression and needing a lot of my time at the moment. I've just tucked her into bed and breathed a sigh of relief - it's like having a baby again sometimes.

@BagpussSaggyOldClothCat
It's Thursday - I sent her to bed as I had offered her all the foods but I'm trying again with breakfast in a bit and keeping things 'normal' and not giving it any air time - it's what my mum said she did and didn't talk her through like I do, I know I do too much so will see how that goes
It's like she clamps up

Sending hugs to all