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

[Curlyhairedassasin]

New thread as old one is filling up

@Thisnowtoo I've not been on here for a while but we insisted on a transition process from CAMHS to adults when my dd was 17/18 (she's now 22 and recovered). She had a clinical psychologist work with her for 6-8 weeks (it was the most effective treatment she had tbh). It all went sideways in adults but that was due to an incompetent member of staff mentioning DD's weight (for no clinical reason whatsoever) despite it being clearly stated on her records that she didn't want to hear it. Hopefully you'll get the transition in place and she'll have more competent staff than we did!

@Shedqueen I know it was a couple of weeks ago and you've got it out your system re A-levels and uni but I also wanted to give some reassurance. DD had to stop school after first year of A-levels. She was off for all of year 13. She then attempted to restart A-levels from year 12 (timetable issue meant she couldn't just pick up where she had left off) so was 2 years older than her new year group. About 4-5 months in, we all agreed it wasn't working - the school environment (girls school) was part of her anorexia - it was where the anorexia felt strongest. So she left with no A-levels. She's now doing a degree with Open Uni with a specific career path and she's working full time in a field adjacent to her career goals and has not long moved into her a flat with her boyfriend. Her path turned out to have a few more twists and was a bit more wind-y than her peers but she's got a very clear destination in mind now! Am sure it will be the same for you too.

I don’t think any of them like being told what to eat but unless they’re in a place where they can make sensible food related decisions it’s non negotiable unfortunately.

If you’re dd was only diagnosed this year I imagine FBT will need to be in place for a while yet. To get some idea of timelines my dd was diagnosed when she was 14 and I made all food related decisions until she was almost 17yo. After that there was a very slow hand over period where dd made some decisions for example she could make her own breakfast with me overseeing to check she was doing a decent portion. She is 19 now and almost completely independent however there are still times she needs prompting or help with making a food related decision.

Giving back control too soon is very very risky imo unless they are in a good place mentally and want to recover (and accept this means they need to eat freely and gain weight.)

Hi everyone, haven’t been on here for a while. Our DD14 has been anorexic for a year now - officially diagnosed last November. We managed to get her Wfh above 90%. Almost weight restored (we don’t know exactly what weight she was before). But over the summer she has been slowly losing weight again for the past couple of months.
Can anyone who has been through this give me a bit of advice/support? We have just been transferred to another county, as we have received no support from our county ED services over the past 9 months. For those of you who have been doing this for longer than me…. how long did it take the brain to recover once weight restored?

We thought our DD was doing really well (she is still eating about 1800 calories a day) yet is now losing weight again. Definitely not purging. She is most likely austistic. Has anyone had any luck getting an autism assessment while anorexic?

Also, how does everyone manage at school? I went into school to give her snack and lunch for 3 months, but this couldn’t continue forever as I have to work. How does everyone manage if you work? Do some schools supervise? Thanks!

I’m sorry you’re back here @EDjustdiagnosed i have no experience of autism but I wonder if 1800 calories is enough to maintain her weight?

I can’t help with school either as only on day 3. One if us goes for snack and lunch or she comes home. The nurse will supervise some students but it depends on how mcg supervision is necessary. Technically, if you are in England, she should have an EHCP and schools should make provision for supervision to enable her to attend school. I realise the world doesn’t always work like this.

my daughter needs so much supervision that her father and I have had to cut our working hours so there’s always someone around. Taking part-retirement has made that possible for us.

Hey @EDjustdiagnosed
In my experience it takes a really long time from WR for the brain to heal. In our case c 2 years.
I also agree that 1800 cals is not enough. Which is evidenced by weight loss. If she is eating the same as before but now losing weight she needs more food. For growing, menstruation, repair of her organs, more activity. Various reasons.
I would also say that overshooting wfh is a good plan as it allows for illness, growth etc without tipping back under weight quickly.
My DD is not autistic so cannot comment on a diagnosis.
I would suggest upping calories. With her buy in if poss, she needs to stop losing and reverse it back the other way, before your progress slips. And also add in extra cals if you can so she gains again.
Its so hard when you think you have 'got there' but sometimes you have to go back to the process you used to get her near to WR in the first place.

Hi @EDjustdiagnosed I agree with the others that 1800 calories is nowhere near enough so I’m not surprised she’s loosing on that. An average teen needs around 2500-3000 calories a day and one recovering from anorexia 3000 needs to be the minimum. If also think you need to get her to 100% wfh as 90% is still a lower weight than she should be.

ime the brain takes a really long time to recover, years potentially but I saw a marked improvement once my dd got to 100% wfh and was eating decent amounts.

Have you asked the school what support they can offer?

@EDjustdiagnosed Sorry you are back here. My DD was diagnosed with autism while she was ill. Honestly autism is so common in girls with AN. It also has implications for treatment - classic FBT needs to be adapted. My DD has found a diagnosis very liberating - she is now doing well, eating well and undertaking an autism internship in the Civil Service prior to starting at uni in October. I would really push for it, if I were you.

@EDjustdiagnosed my DD13 was diagnosed with AN just after her birthday after nearly two years of symptoms. It was suggested that she might be autistic but CAMHs and school don’t think so.

However - we took my other DD15 privately at about the same time and she has received a diagnosis of autism. The therapist has spoken to me about DD13 and recommends we have her professionally assessed as she says both my girls are very high masking and could be (have been) missed by school etc. She said it’s not recognised enough and should be considered for all people who present with Eating Disorder due to such a high correlation especially with AN, so not a bad idea at all.

Thanks everyone.
I’m going to push for an assessment again. DD is keen to understand herself better.

She is definitely not the ‘average’ as she was gaining weight when eating approx 2,300 calories a day. Likewise, she is likely to be fine at 95% wfh according to the ED specialist we spoke to, though we need to get higher so she can naturally fall back a bit.
My aim is to get her back there asap, but this may be too difficult if she continues having a school lunch. School are very good, but won’t supervise or portion her lunch. She tells me what she is eating (and I don’t doubt her - she is incredibly honest always). But she probably can’t judge portion size.

Interesting to know it can take 2 years for the brain to recover once weight is restored. And very depressing. I am imagining having to have lunch with her every day for years - whilst trying to hold down a full time job. How do people do this and work full time?

@EDjustdiagnosed

on the work front: I only work half days. DD was out of school for a long time and now has a placements and it's part time only (until noon). We have regular appointments. There is no way I would manage a full time job with her being in school so little. DD has been ill for almost 3 years and in school very part time for the last 12 months. My eldest DC has complex needs so I have been part time for ages and didn't have to rearrange my work or find a different job. If finances are a concern, have you considered applying for DLA. It nowhere near makes up for the loss of income but it plugs the hole a tiny bit. The only other way I can see this working with FT roles is having a super flexible (ideally remote job). do you have a DH who can share the practical load?

re autism assessment. We were on 5-6 years camhs waiting list but in the end, went down the NHS right to choose route. and got seen and assessed within 9 months. If you struggle to get an assessment via camhs or the waiting lists are long, I could check this out. www.autism.org.uk/advice-and-guidance/topics/diagnosis/before-diagnosis/how-to-request-an-autism-assessment

I’ve had to take three months off work to manage initial refeeding and dietician/FBT appointments. Due to go back soon but no idea how to manage if she can’t be in school full time.

@EDjustdiagnosed I was lucky in that my employer was sympathetic and I was able to be signed off with stress for 4 months - tbf, I was very stressed! Then I worked flexibly, e.g. taking 2 hours to support during lunch, and working into the evening. And getting permission to only come into the office 2 days. To be honest I don't think the initial stages of refeeding can be done alongside full time work, and HCPs need to be upfront about that and provide all the letters needed for employers, DLA/Pip etc. If you have a partner I would strongly suggest that you share some of the flexible working/meal support if that's possible - it's a huge stress for anyone and you will need a break. DH and I used to make sure we had one day a week 'off' each - walking, meeting friends - and separate holidays where one of us took our son away and the other stayed home with DD.

That’s my dilemma. My DD loves school and has managed to miss hardly any throughout all of this because I went in twice a day to feed her for 3 months. She is eating really well now (though completely routine/rigid) but is probably not putting on weight because I think her school lunch is too light.
Did you get fbt straight away through the NHS @Glitterfarti or did you have to pay for it privately?

@EDjustdiagnosed we had to fight for two years to get a diagnosis for DD - she was repeatedly triaged and discharged from ED services despite low weight because she was ‘stable’ and wouldn’t talk about it. During that time she saw GP and a Community Dietician, Paediatrician wouldn’t even see her because everyone said it was AN. Once we got the diagnosis FBT and ED Dietician started within two weeks, Dietician was weekly and FBT a bit sporadic but is roughly every 2 weeks.

We have (prior to diagnosis) paid privately for CBT but she wouldn’t talk about food/body shape/weight etc. We really struggled to find private ED services for children in our area.

Hi there. We are 3 weeks in from diagnosis. My daughter has Atypical Anorexia and Bulimia. This is because she is not underweight due to her build (14 with 32E chest and muscly frame) but lost a significant amount of weight over a short period of time. No periods since December and a very high heart rate and low BP. We are currently following FBT and it is a disaster so far. School refusal, low level violence, depression, suicidal talk. They have taken away her activities which were the thing that bought her joy, horse riding and rowing, so she sees no point in engaging.
My husband works abroad so I'm managing it in person alone, although he is very supportive. I have two other sons who are finding home life horrid. They are being brilliant but just don't want to be here which I don't blame them at all. Eldest is off to uni next week which is good as I have found him crying in his room a few times struggling with how my daughter speaks to me.
She says she is hungry but hates herself if she eats. She blames school so won't go. She screams at me all day and says I don't understand. She says what the point in life. Home isn't her safe space riding is, so if she can't go then whats the point.
I'm reading through all the threads and I know this is for the long haul but it's so overwhelming. Life is on hold as I they just expect everything to be put aside. I'm barely managing to work or engage with my other kids.

This is so familiar and it's incredibly hard.

It sounds like she is talking to you about how she is feeling so you are doing well. And great she acknowledges she is hungry.

I take my daughter for drives when she feels terrible. But when it's really bad - and she wont do anything I suggest - being present and listening does help. So much listening.

With the violence. It's so hard. I would recommend walk away and say- 'I wont be here for that'. But i go back quickly as she doesnt like being alone when it's so hard.

Remember it is the illness Not her. It gives me some emotional distance.

Other people will have more experience but I just wanted to respond as I know how hard and issolating it iS.

For us, the first 5 weeks were the worse.
Controversal, but we did let our DD do some activities for her mental health. Im sure each case is different.

@gumps sound similar to my DD. Anorexia, suicidal, violent (DD can get quite wild - I try to lock myself into the bathroom until she calms down). FTB did not work well for her (she has autism and it's sometimes not that efficient for those on the spectrum). We are three years in and only slowly things are getting better. Looking back, probably the worse thing for DD was being in mainstream. DD was eventually referred to a PRU and now has a permanent place in alternative provision through an EHCP. Do you think it would be worth exploring alternative provision or a temporary place in a PRU?

How much is she managing food wise at the moment?

It's an incredibly hard illness for the whole family. Is there any way your DH can be at home more? You won't be able to carry the load long-term on your own. Do you have a support network? Do you have a supportive and flexible employer?

Do you get any support from Camhs for her MH needs? We are under the ED service but we are also having regular therapy with Camhs. Has medication been discussed. My DD is on antidepressants and on olanzapine (antipsychotic drug to help with the intense anxiety around food). Its not a magic bullet but loads of things in combination help.

Hi @Gumps , sending solidarity. It’s great that she can communicate how she feels and that she is hungry. Unfortunately you have to shoulder that burden for her - it can be easier on them to believe ‘Mum made me eat that’ so it wasn’t their weakness and they don’t need to feel so guilty. Use riding as leverage - your body needs to be able to physically cope, when you are strong enough you will go again etc. Hang in there!

Hi all. Sorry to hear of those that are struggling. DD has been up and down. Currently very down and refusing to eat. School pressure is building up and she is struggling to cope with it. It's so hard. Don't know how to help when she just point blank refuses to eat.

@gumps my DD also loves riding and we stopped it for a couple of weeks. It was the first activity that returned as soon as she committed to a meal plan. I had to argue with the doctor that I thought it was a good idea for her mental health - it was definitely the right decision for us. Every other activity took a lot longer to return, but we never really lost the riding.

Is there anyone on here who has managed to get school to supervise lunches?

Yes, we were very fortunate that my son’s form tutor supervised snack and lunch for me. I think she saw me deteriorating with the travel backwards and forwards and offered. We started with snack and built up to lunch. I gave school pictures of what should be eaten and an expectation or they had to ring me to collect, no resistance when she pushed for more and looking back I think she saved me from crumbling

hello @Gumps- welcome and sorry you're part of this club. We are now just over two years from diagnosis, and although my dd is not fully recovered, life is so so much easier than it was in the early weeks and months.

my dd was very underweight so we did stop activities for quite a while, limited to one short walk per day. Nothing really brought her any joy so I don't think keeping activities would have made a difference. My dd was also very low in mood, would go upstairs after each meal or snack and lie in her bed and wail because of how guilty she felt. It was so heartbreaking, nothing really comforted her, I would often be lying next to her weeping too. She became very sneaky, found lots of ways to hide or discard food, and even watching her closely I missed things, I probably wouldn't have trusted anyone at school to support her for lunch, although she was off for several months and then only back for half days for several more. She would say she wished she was dead, and we did go through a short phase of hiding sharp things and medication. She directed much of her bad feelings to me, and would frequently say she wished I would die, and more upsettingly she would sometimes say she wished she could stand and watch me die. Grim.

The bad phase was probably about 6 weeks, and another 3-4 months of slightly less frantic distress. But as she regained health she did improve in mood and I could see she was physically improving.

they are so unwell at the beginning their brains just don't work properly, I used to remind myself she was literally terrified of eating. I'd imagine how I'd feel if someone told me I needed to eat a pile of spiders mixed with 💩 6 times a day.

its hard going on the whole family. We have two other kids although a bit younger than yours. One of them was very distressed by how my dd was behaving to me, and I tried really hard to spend some time each day with him one to one, like out with the dog. Their relationship hasn't really improved yet, but I think it will.

i burned out from trying to work and support my dd. I had a couple of periods of being signed off for 2 weeks, and worked from home so I could be there. My dh was around although works long hours. After about 8-9 months I had another couple of weeks signed off and realised I couldn't do it all, so I applied for a career break. It helped me to recover, and also be more patient with dd.

we are in a better place now, at the start I couldn't see it ever improving but they definitely can and do improve.

@Iknowdino how old is your daughter? Is she at school? My daughter has that low wfh