DD17 with AN - hospital needed?

[pinguini78]

Hi, I’m new to this forum and not very internet-savvy in general so apologies if I get the forum etiquette wrong. I’m looking for some advice about my DD. Still awaiting formal diagnosis (have CAMHS psych appt on Friday) but pretty clearly anorexia. Have been trying to do 3 meals a day plus 1 snack (the most we could achieve) because DD is highly motivated to be in school and we said no school without meals. Last couple of weeks it’s been getting more difficult to get through the meals, plus increase in her distress and increase in her attempts to exercise at all hours. Yesterday didn’t eat all meals so we said she couldn’t go to school today - had hours of hysteria overnight, trying to escape out of windows, we were really scared we couldn’t keep her safe so phoned 111 and spoke to MH adviser, but by the time a doctor phoned us back at 3am we’d calmed her enough to sleep. She’s not at school today and distressed - won’t eat, has had some sips of water but barely any, says she won’t eat anything until she can go back to school. She ate some things yesterday but not much. We’re waiting for a call back from duty desk at CAMHS for advice. At what point do you think I should take her to A&E? I’m thinking this evening if we’ve not managed to get her to eat anything and no progress? Thanks in advance :)

Sorry I don't have any advice, just bumping your post in the hope someone more knowledgeable will see it.

2 days with <500cals intake will flag as red on the MEED risk assessment & should be reviewed at A&E for bloods, obs & ECG as there’s a high risk of refeeding syndrome. HTH & hope things feel a bit more settled for you & your daughter soon.

Thank you, that’s really helpful to know and keep in mind for the future. She eventually had some food that day and enough to avoid hospital but things are still precarious so I’m grateful for that info.

I'm not a specialist but I'm curious around why you say no to school if she doesn't eat?
Children with ED can at times use their (lack of) eating as a form of control (often one of the only things they feel they can control). And I wonder if the no school if not eating, exacerbates this?

Send her to school. Punishing her in this way seems really cruel.

I'm absolutely no expert, not even a lay expert in this subject, but being at school will allow her to see what other children eat and drink....might she then be encouraged to copy them to "fit in"

I agree with pp, I would stop saying she can't go to school if she doesn't eat.

Generally, most CAMHS Teams have a weight to height ratio and if kids fall below this threshold, they recommend no school. This is not as punishment, but more to preserve energy and calories for the body to function. I can’t remember what it is off the top of my head, but it may be around 80%. If you are waiting for a CAMHS initial appointment, I would find out if you have a local CAMHS Crisis Team that may be able to provide support and guidance in the meantime. The Crisis Teams are 24/7 and have a psychiatrist. In the meantime, I would try and reduce conflict and stress between you and your daughter and allow her to go to school until you’re told otherwise by professionals. I’d also liaise with school and the pastoral team and see what support they can provide? Could a staff member that she has a good relationship with be with her to provide meal support at lunchtime? Lots of AN kids struggle to eat in front of others, and if that’s the case, could she go a quiet room to eat? Could you go to school at lunchtime and she come out to the car to eat her lunch or safe food? Explore the options, and talk to your daughter about them. Let her know you want her to go to school but you want safeguards in place that she will eat whilst there, and use that as your negotiation tool. She has to meet you half way and for now and until you get a plan in place with professionals, give her as much control as you safely can to get her to eat foods that she is able to do. It will still be a challenge for her, and as hard as it is, provide as much love, care and support as you can. Also, and most importantly, please give yourself some love and care too. All the best. X

If she is motivated by school, is that because she is interested in learning or because she gets to spend time with her friends?

If it is because she wants to learn and do well in exams then watch this video with her "Georgia Ede MD - What is nutritional and metabolic psychiatry #PHC2023".
The title isn't promising but the content is brilliant, it lays out simply what the brain needs to function well in terms of diet, and explains clearly how and why what we eat affects our mental states and the capacity of our brain to function. If she is motivated by doing well academically, this might help her view food differently.

Best of luck.

Sorry you find yourself in this position, there’s a long running series of threads on the ED board about supporting young people with an ED. You’ll get lots of great advice on them (I did!)

Thank you for the replies. Sorry should probably have been clearer in original post - not going to school if not eating was recommended by CAMHS team, she’s already dangerously underweight, periods stopped a while ago etc. On the day that I posted my query she hadn’t even drunk any water for 24hrs (refusing) so would not have been safe to send her. We did get input from the CAMHS duty clinician on the day, who recommended hospital that evening if she didn’t start eating/drinking, but fortunately she did. We are absolutely not using “no school” as a punishment but as a safety measure under advice from professionals. Unfortunately DD is still not accepting that there is any issue or difficulty with her weight or eating, so supporting her is challenging and she is resistant to engaging with or opening up to myself or my husband. We’re just trying to give her plenty of love and support whilst holding firm that she needs to follow a plan for weight restoration. I’ll look at the resources suggested on here - thank you again xx

Are you monitoring her 24 hours a day? I'd have thought it would be easier to burn calories at home than at school, after all they're sat on their bums for most of the day at school.

Tell her eat today and school tomorrow. Does she eat at school?

We are having to do a lot of monitoring and all meals supervised. She was weighed today and now at 80% weight for height so doctor advised any further weight loss next week and they would recommend no school and complete rest at home. She moves around a lot more at school as it’s a big building, changing classrooms etc

Thank you, the original post was from a couple of days ago and she did eventually manage to eat enough to go back to school the next day. But as I replied above, we’re near the threshold now for not going to school. She doesn’t eat at school at all (her best friend has been concerned for months about this) - only has lunch atm because I take it up to the school and supervise her. She actually wouldn’t eat at all if we weren’t giving her food and enforcing it.

As someone who had anorexia as an adolescent and was hospitalised multiple times, I would 100% never withhold school attendance from my child if they wanted to go. Anecdotally, of the other patients I knew, those of us who still continued school and education outside hospital, even when medically unwell, ultimately recovered better. Having something other than anorexia in your mind and life seemed really important. There were definitely some professionals and parents who thought stopping school to focus on recovery was best, but all it seemed to do was worsen things and enhance the obsessions/fixations.

I have no idea what BMI the 80% ratio you mention is, but even at an extremely low BMI, I still went to school when I felt upto it. In my view, the potential benefits of her burning 100 less calories by not walking around a building are outweighed by the risks that falling further behind her peers will bring.

Thank you, I appreciate your insights. The percentage ratio I mentioned is weight for height ratio, which I think is used for under 18s rather than BMI. We absolutely want to keep her in school as it is better for her mental health and friend support, but equally I don’t think we would be doing appropriate safeguarding if we were sending her to school when she’s too physically unwell to go.

It sounds like though she deteriorated so much more in terms of distress and refusing food and water as a response to not being allowed to attend school, unless I’m reading it wrong. All I can say as someone who reached full recovery after being seriously unwell is thank goodness that was not a treatment approach my parents got on board with. Staying connected to school probably saved my life. It was one area where I had goals and things that weren’t related to my ED. Eventually, those goals became more important than anorexia to me.
I understand your concerns, but assuming she is going to classes and not running laps around the oval, the difference in physical risks is really not significant. If she is unwell enough to require bedrest, I’d expect her to be in an inpatient unit where she is given educational support. Every ED unit I stayed in had a qualified teacher supporting the kids to continue their education. I haven’t been in the ED space for some time now, but I’m horrified that treatment appears to have gone backwards with an unnecessarily punitive approach that ultimately feeds the idea of the ED being the most important part of someone’s life.

Sorry, I shouldn’t have come off so strong! I think I was just so taken aback that in the 2 decades since I was last hospitalised, treatment for eating disorders has actually worsened rather than improved. I probably shouldn’t be surprised, not much has improved in mental health treatment or accessibility over the last couple of decades. I oddly feel fortunate to have had an ED when I did. I hope your DD can stay in school and get the help she needs. It’s an awful awful illness.

Thank you, I’m finding it pretty hard not to feel really defensive on this thread, but I guess that’s because I’m really not used to posting on internet forums and I forget that of course no-one knows you and the full background to the situation! I’m sorry you feel ED treatment has worsened since you had your input and I’m glad you are recovered now. My mother has had anorexia all her life so it’s something I grew up with and am very aware of changes in ED treatment and how hard it is to pick the right path for yourself/your loved one when there are so many seemingly conflicting & changing messages. I’m a clinician in the NHS myself and very involved in evidence-based practice so I know to read up on and critique what we’re being told by CAMHS. Having said that, DD is getting dizziness and a lot of extreme fatigue just now so I’m cautious about trying to keep her in school at all costs because I don’t think it sends the right message about self-care. But it’s a total minefield and I’m just trying to be as informed as I can be and keep DD’s best interests at the heart of decisions.

@pinguini78 my dd was medically advised to leave school because of how ill she was with anorexia. She was off rolled for a year. For her, in addition to the severity of the illness, the school environment exacerbated the anorexia voice. It was an all girls school and lots of chat about dieting etc, Dd had to leave an assembly when the chaplain was talking about who was giving up what for Lent as the voice was screaming at her. Even if it was a supportive environment socially, the anorexia could use it to berate in other ways
School can be a supportive environment but it can change so I think you're right to not take the 'school at all costs' approach.

Thank you, good to know an alternative view too. I hope your DD is doing better these days.

Sounds like you are doing all you can! If she is feeling sick and doesn’t want to go to school that’s different, I didn’t get that sense from your post. I definitely answered from the perspective of someone who was in the same position but really did want to go to school. I was a bit younger though, it becomes trickier when they are 17, as they are almost at that age they can make those decisions for themselves, and it’s obviously harder to seek hospitalisation if they are ambivalent. If she is keen on attending school, maybe it might be something you can leverage outside of food to at least get her being open to accepting some vitamins. I remember my parents being able to leverage my desire to feel well enough at school with agreeing to regular Vitamin B 12 injections, an iron infusion when necessary, and taking a few high quality vitamins…. Although I may have been a bit more malleable being younger.

Sorry to hear about your mother though, it must be awfully scary to think it could be such a long journey. I don’t blame you for wanting to take a very cautious approach right now!

Thank you @4timesthefun those are good points :) she’s super keen on school and is very high achieving but that’s also driven by a lot of unhealthy perfectionism which I think is partially driving the AN. So it’s all a balance and like you say we are just trying to be very cautious and take it a day at a time. We saw the psychiatrist yesterday who prescribed various vitamin supplements amongst other things, as she’s agreed to give those a go so fingers crossed.

*pinguini78 *
as I think you are already recognising, school attendance can be great, but only when positive for your daughter and safe for her.

while I am not dismissing what a previous poster said, I myself missed a lot of school as a teen as I just wasn't well enough to attend due to my ED. I also knew a lot of other teens in the same position at the time. Of the group I kept in touch with, yes, as few have remained quite stuck, but most of us who missed huge chunks of school went on to get university educations and good jobs. There were other routes when we ready and we found a way through. So please don't feel if you daughter does end up taking time off school that it's a disaster.

for me personally, I was also highly perfectionistic and academically driven. In retrospect, taking time away from the environment that fuelled that and fully focusing on recovering was exactly what was needed, but obviously it's different for everyone.

good luck on your journey.