Should I tell my daughter to forget about GCSEs and focus on recovery from her eating disorder?

[BengalGal]

Hello
We are not from the Uk and have one child who went through GCSEs and another about to. This DD, 15, has had an eating disorder for the last 18 months I only recently learned about. Apparently she skips both breakfast and lunch and then makes herself throw up any snacks or dinner. The purging part is only the last couple of months. I’m trying to get her seen at a clinic for children with eating disorders but now that she has been more honest about how little she is eating I wonder if the most important thing would be to get her into residential or daily care. I suppose the experts will eventually tell me what they think she needs but usually the treatment is daily if not residential and it’s about an hour from her school. There are much closer places almost next door to her school but we don’t live in that county and can’t access them. My plan was to do maybe weekly counseling til after the exams and then do the intense part. But would I be unreasonable to go for the daily or residential options now and forget about GCSEs? I know you can’t take them later but there must be some option for people who are too ill to take them?

Health first. Please dm me if you want info on support groups and ED school information

It may be worth checking with the 6th form colleges exactly what their entry requirements are.
I know a young person who was in a similar position to your DD and was able to sit and do well in 6 GCSE subjects which was enough to gain entry to 6th form college.
By dropping some of the other subjects, it relieved some of the academic pressure on her but allowed her to have the structure and focus of study which was very important to her.

It’s such a personal situation and it’s difficult to strike the right balance. When you’re in the midst of exams and all the expectations that go with them, it can be hard to see that delaying them may be better in the long run.
I hope you get the right support for your DD and yourself.

Sorry I missed she was purging. This is an emergency it’s incredibly dangerous, this website is excellent www.mirror-mirror.org/purging-disorder.htm
She needs immediate medical attention, bloods, hearts etc. Counselling won’t help yet, food will but she needs medical attention in case her electrolytes are out of whack.

Forget school, take her to A&E, or doctor tomorrow you must supervise her bathroom visits to prevent purging. Most clinics won’t admit until they’re in a really bad way (which can happen rapidly) most treatment is done from home by family. Seriously forget school this is urgent.

I've worked in eating disorders, it will entirely depend where in the country you are and what the bed situation is like - I said 13.5 because that is the situation in most of the South at the moment. Children's services might be better but they are just as badly funded. To be honest though, I would be very surprised if anywhere in the NHS would take her as residential with a normal BMI. It's nonsense because people can be mentally very unwell with a normal BMI but it's the way the system works because of shortages.
Once she is into eating disorders care they will be able to give you lots of advice and help through therapists, dietician, psychiatrist. Ask their advice on school, but I'd suggest not making any decisions to pull out before you see them - it might be the promise of college in September is the motivation she needs.

I have experience of this. My daughter was purging and not eating at school - I found out because her friends told her tutor. In the end it was not as bad as I had feared, she got help from CAMHS and I was lucky enough to be able to go on a Carer's course there. You need to PUSH for that CAMHS referral asap, chase your doctor. Maybe even see another doctor in the practice - a younger woman for example who gets it (which is what I ended up doing). My daughter ended up getting counselling, did not need residential care and was discharged, took all her GCSEs. I can recommend a book: Skills-based Caring for a Loved One with an Eating Disorder, The New Maudsley Method which is the book they recommended at CAMHS. PM me if you want to ask anything.

I did take her to the GP almost a week ago and bloods were taken. They were normal. I don’t know what they checked but she has another appointment in a week. She will absolutely refuse to let me monitor her bathroom visits though I just tried. I don’t really know how to stop her. I have been distracting her long enough for the food to get largely digested. I don’t think she is a binger except maybe sweets and fruit. She just went from eating very little for 16 months to adding purging to the mix. Once six months ago for a week and now for the last six weeks. Since telling me she said she is purging less but still daily. It’s this aspect of it that makes me think if inpatient or daily treatment was offered she should have it.

Unfortunately labs can be ok, then they're not. It can be very rapid. Its also true that they don't come out of inpatient treatment cured unfortunately.

It's good that she is telling you. My daughter initially denied it when I was called into school the first time. Easier said than done but try to stop her going to the bathroom after eating (which it sounds like you are doing). Watch her - key signs watery eyes, flushed face. Give her small portions so she doesn't feel like she's eaten too much. I'm not sure that you would be offered inpatient care based on what you've said - the ones having that are seriously in a bad way (as I saw). How is she functioning at school? Have you been into school to see Pastoral Care? This is alarmingly common with high achieving girls who put themselves under pressure. The school will be aware of this.

I did tell the nurses at her school but no one else there at her request. They told me of a psychologist that has helped other girls but she’s got no space for my DD and a long waiting list.

She says she’s not vomited today and I believe her. But it’s the first day in six weeks she has not. I think she might be more anorexic than bulimic because she’s not someone that binges and only recently started purging but was skipping two or more meals a day for 16 months before adding purging. Except one week six months ago. She says she has only vomited at school twice so maybe if she can eat lunches again that will be a good thing. She’s agreed to start having breakfast and there will be no opportunity to vomit afterwards. Onwards and upwards!

It seems there is an area between anorexic and bulimic an "eating disorder" - which is where my daughter fitted in. Not purging all the time, just mostly when she felt she had eaten "bad" foods (like a cookie / burger, for example). My daughter did not binge at all. I would honestly contact pastoral care at her school, privately even if she does not want you to. Just so they are aware - although I would think the nurse may have already done so. Again, private message me if you want to.

But I suppose if she did miss exams those offers wouldn’t hold.

Have a chat to the colleges. It could be that they will say they will take her anyway, because of her situation, and that would be a huge pressure off her.

My heart goes out to you OP, I can't imagine how distressing this must be for you. To find out that your daughter was struggling with this and you didn't know is hard enough, but to know the situation is ongoing and to feel powerless to stop it . . . that's terrible.

I can understand that your urge would be to throw everything you have at this and get your daughter the best possible treatment right now. That's commendable. However, inpatient treatment isn't always the magic bullet people hope it will be.

First of all, if the ED sufferer doesn't proactively want recovery, there's only so much good it will. They will monitor her for the duration of her stay there, get her weight back up, and try their level best to help her - but there's a good chance she will simply lapse back into her old habits once released.

Second, there's a danger she'll learn bad habits from other patients in a residential setting, and will cling more fiercely to the disorder as a way of life. I don't want to scare you but it's not at all uncommon for an anorexic to become a purger after time spent around bulimia sufferers in treatment, for instance, or for a purger to graduate to abuse of laxatives. If there is any chance your daughter might use treatment as a "training ground" in this way, I would be very hesitant about sending her anywhere.

Thirdly, it's much harder for a person to recover when they feel their eating disorder defines them or has become a part of their personality. Pulling your daughter out of school and sending her to specialist residential care very much risks giving her this impression. Your daughter should absolutely remain under the close care of a GP, and seek outpatient counselling or group therapy immediately.

However, I agree with the posters recommending you retain some semblance of normality in her life. It will help her recovery if she has a clear sense of who she is and what her life could be without the disease, and if she knows that she has your love and support regardless. (Teenagers are delicate, emotionally speaking, and there is a risk she would interpret being sent away as you wanting to be rid of her or passing her problems onto someone else.)
There is a usually an underlying cause with eating disorders far beyond simple exam stress or a desire to be thin. You need to try and puzzle out what is driving your daughter to feel such a need for control, and help her find healthier coping mechanisms. Her behaviour is scary, but it's just a manifestation of a much deeper pain, which will find another outlet if it isn't addressed.

There is a forum for parents of sufferers trying to treat them at home. Around the Dinner Table, I think it's called. You may find it helps to read their stories and get some tips on how to handle this.

If residential treatment is necessary, then it's necessary, but please don't think it's your daughter's only hope for recovery. Being surrounded by love in a place she feels safe is a fantastic first step

Best wishes. You (both) can do this

It's perfectly reasonable. You might need to adjust your expectations of NHS care for eating disorders though - with a normal BMI she won't be being seen daily or being an inpatient, she'll have an appointment every few months with the doctor and maybe once every week or two with a psychologist. Talk to the school, they will have been thorough this before.

You don’t need a bmi below under 13 to access inpatient treatment.....

The exam thing is tricky. If you force her to not do them, that could be counterproductive. If she pushes through to do them, it’s likely that her health could worsen in the runup to exams, and if her results are lower than expected this will have big consequences for her self image and maybe make things worse. Would taking some subjects this year, and the rest later be an option?

My d was diagnosed just after her GCSEs, it took a long time to get her to even come to the GP. She ended up taking a year out of education before she did her A levels to focus on her health. She did go to school a little during this time but it was prearranged that she would be restarting year 12 with the next cohort. During this year she attended a day programme in London for a while, but once she was discharged from there she relapsed, and ended up as an inpatient a long way from home for 5 months. She stepped back into school with the next cohort and is now a first year medical student at a top university. I am still watchful of what she’s eating, but it was a traumatic time and I probably won’t ever fully relax. She’s mostly ok but does have an occasional wobble, she talks openly about it immediately which is a huge change.

The first step really is getting her properly assessed by a psychiatrist who has specialist knowledge of eating disorders as sometimes it’s anorexia/bulimia, but sometimes it’s a coping mechanism related to stress, anxiety, or depression.

I did observe that most of the ED patients that we came across in the course of my daughter’s treatment had similar personality traits. Most were high achieving, competitive, controlled perfectionists with low self image.

Yes that fits my daughter. Rumours are that the eating disorder clinic near us is not great but I just learned our insurance can cover a place called the priory. They have a number of centres though I don’t know yet if they treat people under 16. But she will be 16 in early July. The insurance also will cover a psychologist or psychiatrist but the only ones I’ve found so far aren’t taking new patients. She says she often feels suicidal (but no plans or actions) so there may be underlying depression. My father suffered from SAD but he had such a traumatic childhood it’s not surprising. But maybe she is genetically inclined toward depression. I tried to get her to use a SAD light but she thinks it’s hokey and won’t.

I’m waiting to hear back from the nhs place. They took all her info yesterday.

Thanks for all the support! It’s nice to hear

I'm a bit confused at the need to choose? A decent residential or inpatient setting for young people should have some provision for teaching/study space. It's not the same as school, but why not let her have a pop? The setting or school should be able to arrange something. It would be good to keep her focus on her future and away from the disorder.

It's right to take her out for appointments and prioritise her health, but I think there should be a compromise. She may end up needing retakes anyway, but it's understandable she wants to stay at the same stage as her peers.

I'd be careful with inpatient settings tbh. She would meet others with much lower BMIs, and for some young people these places can be counterproductive unless absolutely necessary

Having had a similar eating disorder as a teen - eating issues can sometimes be about control. The eating or not eating or purging is one of the few things your daughter may feel she has control over so she might not be happy about you making the decision on her GCSEs.
I would take professionally advice. Although while her health is the most important thing - as part of her mental health having too much time to think and no structure in your life is not always a good thing. Is it possible for her to take a few GCSEs rather than all of them? If she is not happy with the grades surely she can resist at a later date?

I had anorexia at the time I took my GCSEs. My mother urged me to drop out - however I knew if I dropped out I’d have even less going for me and so ‘less to lose’ in a way. It probably would’ve made me more ill.

I ended up with good results and had to take time out during my A levels to go into hospital. But I was so so glad I had my GCSEs behind me as when coming out of hospital, my results opened doors for me in terms of returning back into education.

I’m not saying GCSEs are more important than health. But I urge you to consider whether dropping out will really do any benefit?

Eating disorders are very complex diseases - they rarely go away just by removing stress. Also as perfectionists, we as sufferers often NEED that drive in life just to stay relatively well.

Thanks for your post. It’s so good to hear other’s experience. I spoke to the school again today. Taking them in august isn’t possible. She’d have to wait a year. But taking them in a hospital is possible and has been done before. I’m having zero luck finding a psychologist or psychiatrist that deals with eating disorders in children. May have to go farther like London. I did learn that our insurance covers daily outpatient and in patient services from a group called the priory, so it’s good to know that is there should she need it. She really wants to take her exams and carry on to sixth form next year. I’m hoping if inpatient or daily care is required we can wait til after her exams.

I’m thrilled she ate breakfast. The school said if I need to monitor lunches I will have to go to the school and do it myself. I’m thinking maybe she can give me photographic evidence of eating lunch. She’s says I should trust her but I don’t trust the ED. And it has taken her on some levels.

I got through it by mentally separating ‘it’ from my daughter, sometimes I didn’t recognise the things that came out of her mouth when she was at her most ill - now she has very little memory of that time.

If London is accessible it might be worth calling the eating disorder team at the Maudsley hospital, they’re in the Michael Rutter building, it’s across the road from Kings College Hospital. I believe that you can self refer to their service, they are seen as pretty much the best. They run an intensive day programme which includes individual, group, and family therapy sessions, and their onsite school are very good at maintaining communication with schools - they try wherever possible to have the young people in school part of the week and at the programme part of the week with the aim of maintaining a normal social life and making their world ‘bigger’ than just them and their ED. Although my d relapsed once discharged by them and still needed inpatient treatment, they got her to the point of wanting her life back. I think her inpatient stay would have been far longer without their involvement - partly because their programme was so tough that she didn’t want to go back!

Thanks hostesstrolley, I’ve heard about Maudsley. But you can’t go there unless you live in South London. We would have to go to a place in Harlow. We are waiting for them to get back to us.

We don’t live in South London. I think you have to live in certain boroughs to be eligible for their CAMHS service, but the day programme (and assessment for this) is a national thing. Hopefully your local services will be decent though - our local service was less than helpful. This is why I pushed for referral to a higher tier or different service, she was yellow with blue extremities and in a very bad way and they just wanted to weigh her (no other obs) once a week and ‘wait and see’

My impression is that generally ED services are improving in terms of knowledge and training, but are underfunded and overstretched and there are massive differences between different regions x

Even at the Michael Rutter centre the therapists vary - one created major problems but we got DC moved to another one who was great so if you can get onto their day programme (and you can self refer to them) then do keep a sharp eye on what is going on.

This sounds very tough and you must be worried sick. However, unless someone is so unwell that they can't function, it's not either/or about getting support for the ED and doing exams.

If your dd wants to do her GCSEs, then she has the motivation to keep herself as well as possible. Going to school, studying etc also provides a routine, focus and goals. It will be great for her self-esteem to complete her GCSEs.

Successful treatment for EDs needs to be the right sort of help, with the right people at the right time. Help being forced on someone that they don't want and aren't ready to take won't help (unless the situation is life threatening of course).

It sounds like you need to lay the situation out to your dd in straightforward terms and let her choose her course of action. It's good that she's seen the GP and you need to encourage her to be as open as possible when she goes again next week. The GP or something like the B-eat website might be a useful source of factual, non-judgemental information about the dangers of purging etc which she may find helpful.

Help her plan what she feels able to eat and when and focus on helping her eating small amounts regularly. Long periods of not eating makes you feel fuller and more uncomfortable when you do eat.

You may also find it useful to speak to someone at Young Minds or B-eat, as you need support for your well-being as well.

Hope that things feel better soon.