Hello everyone, and welcome to anyone looking at these threads for the first time..
Here is a link to thread 5 www.mumsnet.com/Talk/eating_disorders/4360801-Teen-Eating-Disorders-Thread-5
We've seen such an increase in young people facing eating disorders and these threads are testament to that.
With that in mind, we thought we'd try to include at the start of each thread some resources that have helped us along the way to date. No one resource will be a panacea but hopefully this list will be a useful starting off point for any newcomers and a reflection for others. It is our first go at sharing a list of resources on a thread so it won't be perfect!
//www.beateatingdisorders.org.uk
anorexiafamily.com/?v=79cba1185463
//www.youtube.com/evamusby
//www.youtube.com/channel/UCa7G1P5WQopVMc9qTSP_lgA
//www.orri-uk.com
//www.nhs.uk/mental-health/feelings-symptoms-behaviours/behaviours/eating-disorders/overview/
//www.stgeorges.nhs.uk/wp-content/uploads/2019/01/Junior-MARSIPAN-Risk-Assessment-Framework.pdf
Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.
Eating disorders
Teen Eating Disorders - Thread 6
myrtleWilson · 03/02/2022 23:06
Hi everyone, ive lurked on and off this thread for a while but think it's now time to ask for some support.
My DD turned 18 a couple of months ago. She started with bulimia behaviours almost 3 years ago however we didn't pick up on it until a few months later. Took her to the GP who referred to CAMHS and a specialist ED service for adolescents.
She turned 16 shortly after the referral and being taken on board. We took her to weekly appointments and took on board all of the advice, and her behaviour became extremely volatile around that time, plus she started refusing to go to school. Despite the purging, her bloods always returned within normal limits and her weight wasnt worryingly low. We took part in FBT but due to her age she decided she didn't want to take part in this anymore, and this was taken on board. In the eyes of the NHS she was an adult and we couldn't do anything about it. We were having therapy sessions together via the ED service as our relationship had broken down, and she put a stop to that too.
She started refusing to go to her CAMHS appointments, and was eventually discharged from them which left us with no support at all. We struggled on (I am a single parent and her dad is remarried with other children). After a few months she decided to be rereferred back to CAMHS. Bloods still ok, obs all fine etc.
About 9 months ago she began to restrict her food and the weight dropped off rapidly. I begged CAMHS for more support but all that happened was that I was signposted for MH support for myself, and even ended up with the police at my door to check on my well fair after a particularly tearful call to the service.
At the start of the year she was transferred to adult services. They monitored her weekly for 3 weeks then advised her she needed to be admitted to a specialist unit. Que days of her refusing and then begging her until eventually she admitted she did in fact need the help.
Overjoyed is an understatement. I felt that this would be the answer to our prayers and provide the support she so desperately needed. Bloods ok on admission except for raised amylase. BMI 15.something.
Because of her age we weren't getting proper updates when we phoned the ward, or when we were visiting. They needed her permission for everything and sometimes she'd refuse it. She didn't allow permission for us to present at ward rounds via Teams, so we'd often be in the dark as to her progress and the plan. 3 weeks ago it was decided she could have a 4 day pass...I was gobsmacked! The staff had been able to tell us she wasn't ready for it as she'd been struggling but they felt pressured by her and didn't want to risk her discharging herself. Her consultant was on annual leave so I phoned the registrar and explained that as her mother, who knew her best and had watched her health decline for almost 3 years, she wasn't well enough for this. I was told "As her CLINICIAN i feel she's ready for this pass". This was despite the fact that a home pass wasn't on their agenda until my DD started pushing for it and threatening to discharge herself. (As told to me by the charge nurse).
She got home and basically refused to eat. I wfh so can't always monitor her (bearing in mind I had 5 hours notice of her return home for pass and the nature of my job means I can't just take a day off without sufficient notice). I found food hidden in her room and evidence of vomiting. Called the ward for help after 2 days of this, only to be told that they couldn't help as she was an informal patient (not sectioned). Despite being in there for weeks at that point, her MH capacity hadn't been assessed. However I'd argue that someone who would rather die than gain weight (her words) isn't exactly capable of making certain decisions. When she returned to the ward she'd lost almost a kilo (in 4 days).
The following week it was decided she would have a 2 day pass. Again, without any discussion with family. She did eat a little better but then refused to go back. Told again when we called the ward, informal patient so can't help. Eventually, she decided to go back.
5 days ago she decided to discharge herself, and this was allowed. Despite nurses telling me they'd tried all day to convince her not to, that she was making a huge mistake etc etc. She still hadn't had a capacity assessment carried out, so on the absence of this she was allowed to leave.
In the 5 days she's been home she has missed so many meals, hidden food, vomited, went out drinking alcohol and also sacked her social worker because she was putting in support for both households.
The SW had been involved almost since the start due to other reasons (behavioural) so knew our family very well and the entire situation inside our. She specialises in adolescents, however my DD had the power to "sack" her and request an Adult SW instead. We've been told this can take weeks despite an urgent referral.
Basically, I don't know where we go from here. She's under the outpatient adult ED team, however they've said they can only be involved if she is engaging with them. If she doesn't engage then they'll discharge her from their service too, and transfer her to the community MH team. Apparently they're aware of her and will pick up her case immediately.
Tonight she went to her grans for dinner then spent 25 minutes being sick once she returned home. I've been told to let her get on with things. Not to try to force her to eat or stop her being sick. They say she's an adult and it's her own responsibility. But I can't just sit back and watch her decline even further. I have no right to be in appointments. They'll not give me any information without DDs consent, and she's unlikely to give it. I don't know where to turn to for help and support, or how to support DD. I keep thinking I'm going to find her one morning, unresponsive 
She's around the same weight as she was when admitted to hospital and in exactly the same position....restricting, and what she does eat she's vomiting it back up.
I feel utterly helpless
(I haven't read all of the thread, just dipped in and out over a period of time, so forgive me for not offering advice to anyone. I feel like an utter failure as a mum so I doubt anyone would want my advice anyway ).
Thank you both for your kind replies.
I'll have a little look at the suggestions you've made. What's the FB page called?
I emailed her team on Monday and got a long response today covering a lot of my points. I was told that the assessment of her capacity is an ongoing one, and that she is being assessed at every appointment with them. They also explained that because of "clinical reasons" observed as an inpatient, she had been allocated 2 key workers instead of 1 but they said that because of confidentiality they couldn't disclose what I know she's 18 but I can't understand why she's being allowed so much control. I don't mean this as a criticism but she's definitely not NT. I have had 3 different clinicians involved in her care point out their thoughts on this but because of other issues such as previous self harming and now the EDs, she was never fully assessed. The suspicion was Aspergers.
She had spent the week at her dads and meant to come back to my house on Saturday. This was part of our initial plan we had made with her specialist nurse and previous SW. Plan was 2 weeks with me and 2 weeks with him in order to give each family respite. (I have anxiety and also about to be assessed for ADHD, and I really struggle to cope with stressful situations...I just crumble. As for at dads house, her younger siblings who are age 7 and 4 were found to be copying her behaviour by playing games of being sick "just like -dd's name-"
Anyway, she has pushed back against this throughout the week, bombarding me with messages to let her stay at mine. Today she messaged asking if she could come over to see me for a couple of hours then go back to dads later. Her gran dropped her round but only after stopping off at Costa for a huge cup of flavoured coffee and a muffin. Plus a box of fudge. 
Unknown to me at the time. While I was working downstairs she binged the lot and I heard her throwing up. She wouldn't let me in the toilet as it was locked, and she stayed there for almost an hour throwing up She'd basically taken advantage of her gran's caring (but really quite naive) nature, and also me by coming here to vomit as her dad is a bit stricter. I spent about 40 minutes scrubbing the toilet, floor, walls and radiator. She'd also left her toothbrush lying which was covered in vomit. Plus she'd blocked the toilet with a tonne of toilet roll and food I feel at breaking point.
I don't know how others are being managed in the community but she'll be seen once weekly for an hour (in what the call "intensive treatment" 
) and at last week's appointment she was apparently asked to write a letter to her eating disorder. I just feel it's not intensive enough.
Spoke with her dad and she's barely eaten all week. She looked more gaunt when I saw her today. And selfishly, I feel as though my respite has been shattered. My nerves are jangling and I've had to take a few propranolol to settle myself again.
Sorry for the massive rant
To comment on this thread you need to create a Mumsnet account.