Support thread 15 for parents of young people with an eating disorder

[Mummyoflittledragon]

New thread. The old one is full…

@Edjustdiagnosed
You asked the question as to whether anyone has been successful in getting extra time on exams due to slower cognition due to anorexia. I can’t answer that one.

What I can tell you is that your dd can be assessed either by the SENCO or by someone externally. They will request evidence from the teachers, which could be tricky if the teachers aren’t getting it. The assessment is called a Form 8 and I paid for this for my dd. I was quoted £225 to go and see the assessor last year. The school SENCO I presume will be able to furnish you details of how to find someone.

Alternatively if your dd is well enough and funds allow, you could get an autism assessment. If your dd meets the criteria, I believe she would qualify for the extra time. I would obviously confirm this with the assessor prior to continuing.

Hello, and thank you for the new thread. This is just an update on the situation with my son, which I described on Thread 14.

We went to the general hospital this morning and he was welcomed on to the ward. He had blood taken and an ECG, and eventually a nasal gastric tube was inserted. However, he had to wait until tomorrow for any liquid food to be given for some reason. He had some soup.

Then, early this evening he texted me telling me that he was on his way home and that he had pulled out the NG tube, swiped some biscuits and a banana from a food trolley, and left the ward. Staff traced him to a shop near the hospital. I am now waiting for him to return.

He could hardly walk this morning and weighed 46 kg. Now he is heading back to the old routine, and I do not think the ED Unit will take him after this escapade.

Thanks @Mummyoflittledragon. School says that a diagnosis wouldn’t automatically give extra time in exams. And we don’t have the funds for private testing anyway. It is definitely about teachers finding evidence - which as you say is tricky. The difference to before is subtle. I’ll ask if they think form 8 is worth completing for her - thanks.

Oh gosh @sum12luv I am so sorry. That is such an enormous worry. The only thing I can say and I hope it doesn’t sound trite is that your ds is spirited and when he finally does decide he wants to recover, he will be a force to be reckoned with.

As for the unit not accepting him back, I imagine at some stage he would be sectioned. But I don’t have experience.

Have you done any of the Jenny Langley / Charlie Wallar trust workshops?

Good luck @EDjustdiagnosed . I hope you get somewhere for your dd. Do be aware there is a threshold for qualifying for extra time and my dd only just made it, which considering her needs is surprising.

@sum12luv The ED unit should have him. They will be better at managing that kind of behaviour. In the general hospital he might need to be in a ward with a locked main door and possibly one- to-one nursing. My daughter pulled the ng tube out. Unpleasant but again common. She was sectioned at that point which could happen if the hospital feel he needs tube feeding and he’s unwilling.

@EDjustdiagnosed i got a supporting letter from CAMHS for extra time in GCSE and again from her caseworker for A Levels. It detailed her diagnosis and its impacts. Also medication. Could her GP help with evidencing the problem for school?

Hi all just joining this thread
We are in the early days (found out last week about the food restriction and have a pending appointment with CAMHS eating disorder team)

Just a quick question. I know there isn't a one size fits all, but is it ever recommended that a child does not attend school? And when did you decide school wasn't do-able.. or to reduce the timetable..

At the moment she is going, teachers are aware of the problem, and no PE... But I spend my day just worrying she's not got enough energy! It's a balance between wanting normality, and what is medically safe.

I am going to ring GP for advice today but kist wanted to ask those who have first hand experience

Others will be along with more advice, we were told no school until 80 percent weight to height and definitely no PE when they went back.

Dd went down to about 76% wfh and never stopped school. Absolutely the right thing for her. Did stop sport.

@CuppaTandBicky it’s really subjective. My dd was too physically weak to attend school full time for a short period of time, so I took her in for crucial lessons as she was year 11 and very close to exams. But the amounts she was eating and drinking (or rather not eating and drinking), she should have been hospitalised for. So she shouldn’t have been at school at all, but I hadn’t grasped how serious it was. She was maybe 85% wfh at the time. But she was never on the skinny side and will not be recovered at 100% wfh. Idk her weight. I would estimate she must be 94% at least and still very mentally unwell.

Thanks for your replies. Yeah I guess there isn't a set answer to this. I've been just assuming she is ok to go because she seems just about ok physically to go.

I think you need to wait for your appointment with the ED team and see what they suggest. I think it is soon? Also it will depend on the practicality of whether you can realistically supervise her eating while she is in school. Bring her home or meet her there? She cannot go for a whole school day without eating.

Just another update. There is a meeting this morning at home between my son, me, a psychiatrist a medical doctor and at least one other person. A place has also been arranged for my son at the ED unit for next Thursday.

I have had conflicting information about the purpose of the meeting. My son's mental health worker told me that the aim was to ensure my son received medical intervention in hospital and there was a strong possibility of Section. He advised me not to let my son know (yesterday) because it could send him into a panic. I spent most of the day playing it cool, while my son told me how much better he felt now he was 'back home'.

Later in the afternoon, my son's other mental health worker/care coordinator rang me to say that a place had been arranged for my son at the ED unit, but they wanted his heart rate to improve before he was admitted. She said they would try to arrange treatment at home because my son obviously finds general hospitals overwhelming. I do not know what support will look like, and certainly cannot imagine my son agreeing to nasal gastric feeding at home.

I am feeling frustrated. I think, if he cannot keep himself safe, then section him and have someone to help him stay on the ward in hospital whilst he receives treatment. If he is well enough to manage to recover a little at home, then what is the point of the ED unit?

I am still trying to 'work' around all the meetings. Fortunately, work is not too busy and is home-based, but it is very hard to stay calm.

Sorry about the rant.

Please feel free to chat on here. This is a lot for you to deal with.

I think maybe in this situation, as hard as it is, you will have to let the professionals do what they think is best. People with ED’s say all sorts of things, and everyone on here has felt torn at some point. It sounds like your son really does need support and an ED clinic may be the best place for him.

I really hope you get some answers today. We are here.

In our case CAMHs took a measured approach. As others have said, they don't recommend it under a certain weight but they seem to acknowledge some kids are better off mentally if they stay in school. I would make sure she has breakfast before she leaves and supervise lunch if you can - that's what we did, met her for lunch.

Our DD is now signed off school but that's because it made her worse not better so CAMHs were happy to support us on that

Hiya, my DS13 is a few weeks into treatment for ED. We've been at day 2 of MFT today. I feel so overwhelmed and ill equipped to cope with it all. He is very controlling and regimented over food and my attempts to wrestle back control are failing miserably. He's trying to eat more but is not gaining weight (I'm supervising his eating and I'm [mostly] confident he's not purging) and he seems defeated by being told to eat more and more when he's not gaining. It's so hard. I'm just saying hi really and wondering if anyone has any advice for this stage? Good luck to us all!! X

I'm not sure what mft is so feel free to ignore this but we've actually involved our DD in meal planning this week on the advice of the CAHMs dietician. Like your son she's very controlling at meal times and trying to take control using 'magic plate theory' didn't work. I compiled a list of snacks and meals and she chose from then. It meant any conflict wasn't at mealtimes.

My understanding is that it can take some time for them to gain weight even eating a lot due to the effects on their metabolism of undereating

Thank you for your reply, I've not heard of magic plate theory so I'll look it up. MfT is multi family therapy, it's 3 days with several families, lots of info on ED yesterday, nutritionist today, not sure what tomorrow is. It's been v intense and he's struggling to engage. He did say tonight he thought he was afraid of eating fat, but he's v cross when I remind him the nutritionist said that someone trying to weight restore needs to eat more than he's eating. Clinician today suggested promethazine to reduce anxiety about mealtimes, does anyone have experience of this? Many thanks x

Gosh that does sound intense. Hopefully the key messages will sink in even if DS isn't fully engaging and you'll find your own rhythm afterwards using those.
We were told the first stage of renourishing was internal, getting the organs what they need, so maybe that's part of what's happening

Welcome, sorry you find yourself here x

Thank you for your reply, wishing you all the best too x

Two psychiatrists and a social worker turned up for the meeting today, so I sort of knew what would happen. My son refused to go into hospital (general hospital), and was sectioned.

I went with him back to the ward he left on Tuesday, and waited until he was given a nasal gastric tube. The medical staff fear 'refeeding' syndrome if my son tried to 'recover' at home. He has a place at an ED clinic on Thursday.

He has a support worker with him on a one to one basis. He seems a little more upbeat now. It has been a long day.

@sum12luv I’m sorry, that’s hard for you both. I still have nightmares about the first time that happened. Hopefully it will be some sort of relief to him that he has no choice but to follow the meal plan. It may take the guilt away and allow a period of more regular nutrition. Take care

@sum12luv
I am so sorry for what you and your ds are going through. I hope in a way it is a relief and that this is the start of the recovery process for your him. I would recommend getting some form of therapy and self care. To be kind and loving to yourself. Talking definitely helps me to offload.

Hi: delurking a moment to say hello. @Mummyoflittledragon has really helped me elsewhere re one of my DDs (different user name). I have twin DDs who are 16 and ASD. One has been out of school since Y9 due to CFS (due to very restricted diet) but the dietician and GP have said probs ARFID but nothing we can do until she wants to help herself (and to be fair she does eat regularly just not much and only 5 things); other DD used to be a better eater than her twin, if restricted, but is currently off school/ unable to function because she feels so terrible and basically is eating nothing but ice cream and not much of that. Excluded easy/obvious medical stuff (blood test) and on GP advice have referred to CAMHS (because there’s nothing we can do until she wants to help herself) but she isn’t “underweight” (yet). It’s exhausting. It’s so hard to know how to navigate every day and every mealtime; one of them is in an ok holding pattern if sub-optimal but the other I am really worried about. (I also have a DS with restricted eating but he’s now at uni and cooking himself one dish with meat and veg in it and eating every day and gaining weight so less worried about him.) My dad was likely ARFID and my mum had moments of weight-obsessed weird eating; I’m normally ok with food but honestly managing everyone else’s not eating is HARD.

@sum12luv what a difficult and exhausting day that would have been. Hopefully the section will give your DS some relief from his ED voice. And he will be made physically safe at least. Having the ED unit lined up is also good news. Hold onto the fact that this is life saving treatment. Use the break from having to think about making him eat to try to restore some of your reserves. So you can be ready when he does come home. Take some time for you.
@MeowBerry usually weight gain does not happen straight away. And I would not recommend your DS knows his weight anyway. Blind weighing weekly is a better option. When starting meal plans the first thing is to halt losses, restore depleted organs (not brain sadly) and then start to add weight. Stopping further losses is a win.
The control thing is recommended as it removes the ED voice from the planning conversation, it also can give the sufferer an 'out' with their ED voice. If you allow the AN control it will pick the lower calorie option always (albeit my DD didnt actually know enough about cals and had some misconceptions around this so didnt actually always pick the lowest cal option, but it was what she percieved as the safest option).
Try to poss move the emphasis at mealtimes from gaining weight to getting stronger. Or safer.
So such phrases as ' I can see this is hard for you, but this is what you need to eat to get stronger' or 'I am sorry this is hard for you, but I know this is what you need to eat to keep safe' or words to that effect.

Hi @Omhaf. I am so glad I could help you, if only a little. This stance of only being able to do something, when someone wants to help themselves is so unfair. It’s because there aren’t the resources there to help people, who are unable (often due to ND/anxiety) to engage in the process, which is why CAMHS were so useless with my dd (she signed herself off 2 years ago as soon as she was 16). They are apparently better elsewhere, but not everywhere.

Idk if I mentioned this before, but have you heard of Jenny Langley and the Charlie Waller trust? Jenny’s ds was hospitalised with ED over 20 years ago. Since then, she has been working in ED services and although not formally trained, she has been instrumental in developing the New Maudsley techniques for parents.

Dates of the 5 part sessions written by Jenny: https://charliewaller.org/mental-health-training-support/parents-and-carers/eating-disorder-workshops

Have a look at the New Maudsley website, Jenny co-authored a book and wrote a training manual. Much of the manual is on this website. Jenny’s email is at the top. She runs a monthly carer’s meeting as well as a range of a series of topic based sessions. Eg meal planning, teen brain, autism etc. https://newmaudsleycarers-kent.co.uk/the-new-maudsley-method-training-manual/ Drop her an email if you want to be added to her mailing list.

This is the book. Rather expensive atm, even the second hand ones. Idk if you can find it second hand on eBay… https://www.amazon.co.uk/Skills-based-Caring-Loved-Eating-Disorder/dp/1138826634/ref=asc_df_1138826634?mcid=d49fa45694ef334fa411f9a64317ca07&th=1&psc=1&tag=googshopuk-21&linkCode=df0&hvadid=697216353069&hvpos=&hvnetw=g&hvrand=12299822947961829445&hvpone=&hvptwo=&hvqmt=&hvdev=c&hvdvcmdl=&hvlocint=&hvlocphy=9192927&hvtargid=pla-493162423421&psc=1&hvocijid=12299822947961829445-1138826634-&hvexpln=0&gad_source=1

Anyway, a lot of what she says in the book is in the training manual. And that’s online. If you do want to use the services, I would recommend you familiarise yourself with what she does first. And do the 5 part sessions as they will allow you to access the topical stuff better.

And thank you for your post. That was a much needed moment of recognition.