Support thread 16 for parents and carers of young people with an eating disorder

[Mummyoflittledragon]

The old thread is almost full. I hope no one minds me starting a new one…

That all sounds incredibly stressful @Mummyoflittledragon

Do the stomach issues flare up when she's anxious? I'm wondering if she's actually feeling nervous about next week. Not that knowing that helps as she won't let you help her anyway!

I hope the key issue is easy to sort at least.

@Mummyoflittledragon I’m really pleased to hear about the glimmers of hope last week. I know how draining this all is for you. I think @Weightlossworried may be right to thinking her body is stressed. She may not even acknowledge it, but she will definitely be feeling it. It’s a huge change for you all, but hopefully the start of a new life for you all xx

Sorry to hear things are stressful @Mummyoflittledragon
We've also had a big family get together this weekend. It was very hard at first. DD needed coaxing out of bed to leave, DH lost patience with her (to me, though DD probably sensed the lack.of support), she barely spoke the whole 4 hour journey and took 20 tearful minutes to get out of the car. But slowly she came round, partly thanks to a complete lack of reaction or direct query from her lovely adult cousins. We went from eating in private doing puzzles on night 1 to choosing to sit with everyone, and actually eating her first pieces of cake in months, asking to go on an outing with DH and joining in sports
I fear the spiralling we get a day after eating extra now though. She's barely spoken on the journey home, and I know being trapped in a car "feeling full" isn't good mentally. And if the chosen playlist for the journey is anything to go by this afternoon will be challenging! Bracing myself, again, to be the support she needs and counting my blessings of this weekend of progress

Happy bank holiday all

@Weightlossworried
Thanks. The key is sorted. The fob has (possibly had) a bit of a faulty connection and the recovery guy did his best to sort it out. We are home now. I agree with you about the stomach issues being anxiety driven. She definitely suffered a lot 18 months ago. Perhaps some of it in Spain was also food. Idk. She will probably have been anxious to come home with how horrible she was before she went. And also anxious to go to the family gathering this weekend, even though we took separate accommodation as dd (and I) need space. And of course anxious about going to university.

@Pearl97 Thanks. Just glimmers unfortunately. She’s come back and decided she’s not going to eat to plan at all. I thought it may be heading that way, but after the holiday I was a little more hopeful. Now with the stomach issue, she is again adamant 3+3 is bullshit. She has been doing it for 2 years now and it hasn’t worked apparently.

She didn’t eat breakfast for the first 2 days back because of the stomach issues. And this morning, she’s off plan. So that’s it, no breakfast or morning snack. And a small lunch at 2.15. I don’t think she lost weight on holiday, but the ED is very much back in charge again due to not eating enough and the stomach issues.

When we were 3 minutes from home, dh said he wanted dd to help to unpack the car. I replied what about lunch (bearing in mind she hadn’t eaten). She started having a go at me. She’s an adult and she’s not doing those stupid rules. I explained this is how it happened in the first place, deciding that she wouldn’t eat before a certain time, skipping breakfast then lunch. And 3+3 is how she got out of it.

I said we want going away th university to be a success, otherwise she’s not going to last long. She said she didn’t care. Dh said she will care one day and then will come to us. I said she won’t, she won’t realise. The brain shrinks. At that point, she started screaming at me. Dh then started shouting at me to stop. Once in the house, I told him I’ve been told to say this stuff. And he still said I went too far. The thing is I didn’t imo and have told him so many times his role there is just to support me. But this is just too much for him, even after all this time.

@LurkyLurkyLou Sorry to hear things have been stressful too. And it’s lovely your dd relaxed even if for a moment by eating cake and joining in with things. It sounds as if the ED may have given her the day off so to speak. I hope that the repercussions aren’t too bad today.

My dd apparently ate for an hour solid last night. It’s not good, though as she hardly ate in the day. This way of eating a lot in the evening isn’t sustainable long term and will only lead to guilt then restriction, which is what you see in your dd. My dd doesn’t externalise any guilt, she just becomes angrier and restricts, which is probably what today is about. It won’t have helped that my mother’s partner decided to tell her and her cousin they’d been eating for an hour. And yes, he knows about the ED and has all his marbles.

It is so hard. She just won’t or can’t assimilate anything I say and staunchly refuses to learn anything about nutrition.

@Weightlossworried they can stop her at the moment because she's still detained, so she needs their permission to leave the ward. They seem to think it'll all be too much for her and she'll burn out again. I worry that she'll get very depressed again without anything to focus on and work towards, she already thinks of herself as a failure.

@Anothersetback @Pearl97 it might be simpler if she was actually in school, but she's not and hasn't been for years. Opportunities for education outside the mainstream in NI are pretty poor, we've been cobbling together online courses, some college night classes and private tutoring for the last couple of years with varying success, but it's tricky and she finds it stressful, and it's also meant she's never had a chance to really establish a group of friends post-primary school. The ED in part grew out of a need to control something when she felt a lot of other things like her education, her ASD and her social life were going wrong.

@Mummyoflittledragon she's certainly not physically at risk now, she's a healthy weight although not quite weight restored yet. I find a lot of their decisions quite hard to understand, to be honest.

Apologies, I feel rude just responding to comments addressed to me but not engaging with other people's situations, but I really haven't got the brain power right now to be helpful! Sending you all positive thoughts though, hope everyone's appointments go well this week and our children become miraculously more compliant!

@Mummyoflittledragon Argh, what was your mother's partner thinking of, commenting on her eating! You must have wanted to shake him.

I'm sorry you're not getting the support you need from your DH either. It makes it ten times harder.

Don't feel rude @StressedANmum I think the amount we can support varies for all of us depending on what we're going through. Apologies from me though, I remember now she's being detained. I don't really understand the often negative approach of these teams either. Can't she just try and if it's too much, stop? Why can't they ever listen to us as the experts in our children?

Sorry,
Not sure about option of NI, but dd took the opportunity to start somewhere new for 6th form.
I know someone else who didn't go to school at secondary but joined a six form college.
Third friends daughter changed school.
So if someone actually wants to go back, it shouldn't be discouraged in my opinion.

Sad how many friends I seem to have with children who developed ED.

Thanks @Weightlossworried , our consultant is definitely not the "parents are the experts in their children" type! Our last meeting got a bit hostile because she really doesn't take on board anything that either we or DD say. She was quite dismissive of the idea that education was important to her mental health.

@Anothersetback sixth form college isn't really a thing in NI, the vast majority of kids stay in their secondary school for 7 years, a small proportion swap to different school, usually because they want to do an A level that their own doesn't offer. The colleges are mainly for vocational subjects, so they offer a very limited range of A levels, and hardly any GCSEs. DD is very academically able so she wants to do A levels and uni, but at the moment she only has 3 GCSEs so none of the school sixth forms would take her. The plan she had was two more GCSEs via night classes, starting one A level with the tutor and an AS via college. But the consultant won't let her out during the day to go at the moment. The tutoring isn't a problem, she can start that any time, but if she can't start the AS with everyone else it'll make it really difficult for her, and what we really wanted out of that one was the chance to be with a group of her peers.

I don't personally know anyone else whose child has an eating disorder (which is why this group is invaluable), but DD's cousins all have at least one or two friends that have had one - it does seem to be disturbingly common unfortunately.

It's so bloody frustrating @StressedANmum I honestly think the eating disorder looms so large to these people they can't see past it to the person that is still there. They should be listening to you both.

Just had a frustratingly negative appointment with the psychiatrist. DD refused to come. I didn't think it would be that big a deal. She was seen on Friday and has restored a good amount of weight as well as having her obs done. I went in there thinking it would be quite positive, as well as the weight restoration she's recovered from it much better than usual. How naive of me. He was very unhappy she wasn't there. Apparently her height wasn't taken so they don't know if her weight for height is actually over 80%. Allowing her to go to college gives her the message she's not unwell. Despite the nurse mentioning therapy in the past they don't give it apparently unless the parents aren't engaging. So we'll have to get it for her privately and keep it secret which is less than ideal.

I'm so tired of it. I'm so sick of being made to feel like I'm failing even when things are moving in the right direction.

FFS @Weightlossworried how tall do they think she’s got over the last few weeks. That’s their mistake not yours!!!! This infamous 80 percent. Are they saying that if she’s not over 80 percent she can’t go to school? I feel your frustration and I want to tell you it’s valid! So they won’t help you but they aren’t happy for her to go to school. You’re just supposed to sit and say eat!

FWIW I think you’re doing an amazing job. I’m so proud of how far you’ve come as a person and a mum. Please don’t let them have more of your time and emotion than they deserve. We are here for you xx

@Weightlossworried that's exactly it, DD has even said to them " I'm not just the eating disorder" but it makes not difference. It surprises me a bit because ours is a general psychiatric unit not a specialist eating disorder unit.

I'm so sorry to hear you had such a negative experience today, especially when you had previously felt the psychiatrist was on your side. I do think their approach to therapy is very strange, if course they need it, regardless of their parents involvement. It's really hard with eating disorders, any other illness and the medical professionals take over, you're not as a parent expected to treat your child's broken leg or whatever, but somehow they expect parents to do the vast majority of the work when it's and eating disorder. You're absolutely not failing though, you're doing a brilliant job and you've seen definite progress thanks to your concerted efforts. Sending hugs.

Thanks both. I really appreciate your kind words.

He did say they don't usually allow school under 80% but they did before so I'm not sure why they're being so rigid now when she's in a better place. I'd fight them to death on that point though. I told him keeping her home would be disastrous, she'd lose all hope.

I don't understand the therapy thing. Parents are no replacement for therapy. He said they consider the routine appointments 'therapy' as well. Maybe that is the case for kids who are engaging at those appointments. My DD won't but she may actually engage with someone new and separate to those appointments. In the past they'd suggested she would be able to have therapy as she got closer to weight restoration. I thought he might say she's not there yet but I never thought he'd say she won't be having it at all.

I can't wait until I walk out the doors of that bloody place for the last time.

@Weightlossworried I wouldn’t entertain any of what’s been said today. It sounds like you’ve caught them a bad day. Not providing any therapy and just hoping hating the place enough to comply is madness. I really am very angry for you.

I would watch an episode of something trash on TV and try and not think about it. You are in control and you can send her to school, please don’t worry about that. They know her bloody height for gods sake!!!

@Weightlossworried I'm so cross for you. Being kind like @Pearl97 I'd agree you caught them on a very bad day!
How can different authorities of the same health service be so different? We had therapy when weight was restored and it's worked wonders, so should your DD. School was discouraged when she was the lowest wfh, but we sent her, and that was supported. We worked with school and camhs to find ways, lifts to school, shorter days (easier in 6th form) longer lunches, lunches in the car/park with us or a friend.
I would be tempted to make plans for school if you think DD and you can make it work, and just tell Camhs she's there and how can they help
Sorry you keep having to find the strength to fight the system as well as the ED!

I totally agree with @LurkyLurkyLou it’s your life and you are in control. I wouldn’t even consider not spending DD to school unless they can show medically she isn’t well enough, not percentages etc.

@Mummyoflittledragon you have very wise words, saying ED gave my DD a.day off whilst we were away. It helped, thanks.
She came round pretty well yesterday, didn't manage lunch but back on track since. Her therapist is leaving for a new job and the reality of Yr 13 is looming so it's a tricky week, but maybe we can force another day off the ED soon, and another....

Thanks @LurkyLurkyLou He stopped short of saying she couldn't go but was very much implying that she might not even be 80% WFH and she wouldn't be able to go if she wasn't. She's going to college tomorrow for sure - her first day. And they worked with us in a similar way when she was still in school and a few kg lighter so I have no idea why they're being difficult now!

I actually think he was a bit pissed off because he wanted to do a review himself before she starts College tomorrow but the plan only changed because of their own cock up. For the second time they made an appointment without actually telling us. I had a call from the nurse on Wednesday last week to tell us and she asked to see us on Friday. As it was so close to the planned appointment today I suggested to DD we ask to weigh her then rather than the day before college. She agreed but obviously couldn't face going again today after being so distressed. All completely reasonable I thought but obviously he wasn't happy with any of it.

I start my coaching sessions with Beat next week and that'll really help. If I'm getting support elsewhere I won't find it so hard when CAMHs aren't supportive.

I had the opposite, a dr insisting dc's bmi had gone up and congratulating them because he measured them as 3cm shorter than before.
In adult services, if you don't engage you're discharged unless you are at sectioning level. My DC was 18 years 1 month at diagnosis and went from not being referred because they didn't take BMI as a measure at 17.5 to not being treated because they were an adult with capacity to non attend. It also feels insane that complete parental control of all activities and food overnight becomes a requirement for independence and trust at 18.

Unfortunately I think we have to accept that treatment providers and protocols are very poor, and to find our own way. My aim this past year has been to try and make DC gradually feel worthy of change. They live alongside their anorexia, they now do not gain and do not lose and their mental health symptoms remain severe. They are living independently as a trial run. A year ago I couldn't imagine that as a possibility.

@unbuckle that's even worse, thinking his BMI is higher than it is. You'd think they'd be more careful.

I have to be honest, I worry a lot about what this will be like as she gets older. She's barely engaging now, I can't see her engaging with adult services.

I have read about harm reduction for adults who are struggling with recovery. It's not ideal but if it gives them some sort of life then it's better than nothing.

Yes, I have read about harm reduction too, and that perhaps it is better to have a stable BMI of say 16-17 and crap diet than to cause a downward spiral by insisting on 3x3. I don't honestly know. My DC is physically much better without a meal plan but nowhere near recovery

Hi all, sorry I went a bit AWOL. I think I missed a whole thread.

Anyway. Just for an update for anyone who remembers our story.

DD14 diagnosed with AN a year ago. Spent the summer getting gradually worse before being admitted to general hospital ward in September. Spent three weeks there before being discharged, proceeded to lose the small amount of weight she’d gained over the following two weeks, then we went back into hospital for two weeks. At the end of that two weeks she was transferred to an ED T4 residential unit, where she stayed for six months.

She came home at the end of April, and has gone from strength to strength. We now suspect she is autistic, possibly AuDHD. Which is what we are now exploring as DD feels a proper diagnosis would help her understand herself more, and help her feel less ‘weird’.

She is doing well, I think she’s lost a bit of weight from her ‘weight restored’ target they set in the unit. But she’s eating, and not displaying many ED behaviours.

We had a bit of a school saga as she was adamant that she didn’t want to return to her previous school (she missed the vast majority of the last school year, year 9) so we managed to get her a place at the school she wanted to go to and she started there two weeks before the May half term. However she then decided at virtually the end of the summer term that the school was not a good fit for her, and she is starting back at her previous school next week. God knows how the next few weeks are going to go but she’s aware that this is it now, she’s starting Year 10, GCSEs and all that so we need to make this work one way or another.

Anyway, sending love and strength to all walking this awful path. Happy to answer any questions regarding our hospital and T4 experience as I do believe that place saved her life.

I'm so sorry to hear of everyone's frustrating updates, it is so unfair.

I feel like we're just at the beginning of our journey and I'm petrified and not handling it well at all. I am trying to find support / therapy etc but I don't even have the head space to research at the minute.

Apparently CAMHS had an MDT meeting yesterday about our DS so we are waiting for the outcome of that.

I can't believe how ill he looks now, he's really restricting his eating and I don't think he's keeping any of it down. He is also incredibly angry and saying the most hurtful things about our parenting. I'm so worried about him.

Our DD is starting Uni in 2 weeks - I'm going to miss her so much but I'm glad she is away from this awful environment. I'm hoping she hasn't been scarred too much. It breaks my heart.

@SendTheNextOneIn lovely to hear a positive update. What is a T4 residential unit? and why did your DD get admitted to hospital in the first place?

My DS is autistic we're pretty sure of it but he refuses to be assessed. We also think it would help him to understand himself more, but he thinks he has BPD (he'd much rather that than autism).

@Weightlossworried
What happened with the psychiatrist sounds absolutely infuriating for you and I would be doing what was best for my child. With the way your dd reacts to being weighed, I would have thought exactly the same thing as you. It makes perfect sense. And this is on them, so hopefully the BEAT course will be helpful.

Unfortunately it does become more and more complicated with age. I’ve
possibly said this before to you. And the way we did it with dd, was to give her as much freedom as we possibly could, so that the ‘control’ she feels from having her intake monitored, and to a certain extent managed, is more bearable. We also gave dd access to dh’s credit card and to be able to eat out as much as she wanted (important for her recovery) and buy whatever beauty products she wanted as this is her mask (within reason btw, not Chanel level). From about the start of year 13, perhaps a little before, to do things like go clubbing on fake ID within reason. So not more than monthly, her energy levels were never high enough for that, and not during exam periods. This doesn’t come without issues. Dd has no idea how to budget, to cook or take care of herself. And she thinks she is the big I am.

As for my mother’s partner, I wasn’t there as I was waiting for the RAC. It will have been addressed more to my nephew, who mid teens and he’s constantly hungry or eating. However, you don’t comment when an anorexic is eating. Dd will have noted this, even though she also doesn’t like the man. He’s a bit of a pompous git.

@StressedANmum
I get the choice has been taken away right now for your dd to attend school. So, would they allow her to go part time? Are they open to discussing how long it will be before she is considered well enough to able to make choices for herself and not be held in the ED unit against her will?

As for therapy, I also don’t understand why they refuse to start therapy before a person is weight restored. I get it is hard to do when someone has a dangerously low wfh and / or when the brain is completely starved. However, some people need therapy to recover and not having access becomes a vicious circle.

@unbuckle
I agree with you the system is severely lacking. Thank goodness your dc has you gently nudging along in the background. And I really hope independent living for them is successful. It’s unconscionable that the NHS only ever treat the less resistant cases, leaving the weakest in society to fend for themselves.

Yesterday was another lousy day food wise here. Dd has really deteriorated over the past few weeks for one reason or another. She didn’t eat until 12.15 yesterday and ‘breakfast’ was half portions. I had my hair done in the afternoon and the hairdresser and I chatted about the way dd talked to me a couple of weeks ago when there. He said she really thinks I’m a complete control freak with her and right now she’d argue the sky is purple with me. <sigh>

And we’ve reached a bit of a crisis point atm for moving out. She’s seriously reduced her intake, eating 4 times now. And it would be ok, maybe, if it were 4 decent meals, but it isn’t. And dd has no real awareness of what is going on. So I really don’t think harm reduction would work for her. She would just continue to lose weight and wouldn’t have capacity to make these kinds of decisions.

This morning I took her breakfast up to her at 12pm. It would have been earlier but I was in session with the coach. She brought 2 items back down, because I’m apparently treating her like a child. At least that means she ate 3 things instead of 2 yesterday.

Big hugs everyone xx

@littlebabycheeses99

she was admitted to hospital due to very low blood pressure and heart rate. We were being monitored twice a week with the CAMHS ED team and when their measurements looked poor, I had to take her to hospital to be checked there. She was then admitted due to being red on the MEED guidelines (heart rate in the low 40s, v low blood pressure). She was basically then on a refeeding plan with daily bloods and ECGs for the first week, and there were weekly MDT meetings with the hospital and CAMHS teams to discuss her case.

A T4 (tier 4) unit is a secure residential CAMHS unit that specialise in treating young people with eating disorders. The unit DD went to had an ED ward (12 rooms), a general CAMHS ward (another 12 rooms) plus an acute psychiatric CAMHS ward (8 rooms), but the wards didn’t mix. You can either be admitted via section or as a voluntary admission (DD was voluntary, she was never under a section). She basically lived there for six months while receiving therapy and following her meal plan to gain weight.