Support thread 13 for parents of young people with an eating disorder

[Curlyhairedassasin]

New thread as the other one is filling up fast....

‘Ageing out of the system’ is a very valid concern. We found that once our DC turned 18 she was treated like an adult, even though she suffers from arguably the most serious mental health condition possible, and even more barriers were put in place to her receiving effective care.
I don’t know if this is justified or not, but it always seems to me that it is easier for services to keep parents at arms length And then any shortcomings in care can be blamed on the patient and their lack of engagement/mental clarity. This infuriates me as it is a symptom of AN.
I just can’t understand how anybody working in this field of medicine can leave families in such dire straits. The only explanation I can find is that they, in part, blame us, which of course they would deny. I used to think it was a funding issue, but as time goes on, I’m not so sure. I expect poor management plays a part too.

@Shanghai101 I think things have been so bad for such a long time in terms of access to treatment, therapies or even just assessment that the crap we get offered isn't seen as crap. Giving a shit service isn't seen as a shit service but it has been totally normalised. We saw a camhs worker today and I asked about expediting the Asd assessment as we really need it and are in crisis. And she just shrugged and said a high number of families on the waiting list are in crisis - if we all were to jump queue we would end up back where we started. She was so nonchalant about, it's shocking. I will need to get the ball rolling on RTC for the ASD assessment.

@Shanghai101 this is my fear with DS, he turns 18 at the end of next year. I fear at that point no one will care if he spends the rest of his life in bed not engaging and eating the minimum required to sustain life.

@Curlyhairedassasin DS was managed out of his mainstream in Y7 but I found it worked in our favour as with the school refusing to allow him to attend we got his EHCP and place at a special school without any fight.

@WoodenTrain even though it’s harder when they’re older we can still help them so don’t despair. I keep hearing whispers that children’s services should be extended to age 25, when the brain is fully mature. So 🤞. I’m sure it won’t happen quickly but at least the conversation is starting.
@Curlyhairedassasin message me if you have any questions you want me to put to our local autism support group, particularly around schools. There is a wealth of knowledge on there. I suspect probably on Mumsnet as well although I’ve never looked.

Just read through lots of this thread, my dad is 15, diagnosis of asd and ocd, also looking at adhd and been referred to Ed service for an assessment next week after 2 trips to a and e for self harming and suicide intention. She has met with a psychologist from camhs and they have basically said they don't really know what to do as she is presenting with so many things. I'm exhausted and don't know where to go, which bit to try and tackle as I can't see how we can fight the eating disorder and the contamination ocd. The ocd has been there much longer than the eating but she fights with me over everything so I don't feel she will work with me in any way re food or the ocd

Dd, stupid autocorrect!

@porridgecarver sirry to hear that you DD is struggling too. My only advice is to keep looking for help and not to persist if something isn’t working. Try something new.

i came on this morning to share this story that was on TV last night and on BBC news online this. morning. It’s good that these stories are getting out, hopefully this will spur change.

www.bbc.co.uk/news/articles/c3de9y0y324o

@Shanghai101 what is the title of the article? My phone is acting up so links are not working. Thanks

@Cantfindthewordsddstruggling

Title reads:
'I just want to feel ordinary’ – Is the mental health system failing teens?

Thanks for sharing @Shanghai101. Such a sad story but probably very familiar for many.

@Curlyhairedassasin thanks for the info.The article is utterly heartbreaking.

What happens when FBT doesn’t work? Do we just wait until she’s lost so much weight they hospitalise her because of her physical state?

She’s 88% wfh, was down to 85% last month, started at 104% in April. She’s on a slice of toast a day half the time, the other half of the time she also has about 1/2 of another meal. Hardly any school, hardly any social interaction.

We think she’s autistic, but the assessment hasn’t yet happened. If she doesn’t want to eat, we reel out all of the Eva Musby lines and she either just stonewalls us or becomes aggressive. FBT seemed to work for the first couple of weeks, hence the initial weight gain, but now nothing. We’d have to force feed her to get anything more in than she has already decided she wants.

She’s self harming and is just so sad.

I don’t know how to move things on for her.

@JoyousCyanCat I understand your desperation but please don’t force feed her. All I can suggest is that if she consumes less than 500 calories per day then you drive her to A&E. it’s not an A&E matter and they will likely send you home but they will do her obvs first and may give her a drip. Make sure that you speak to the doctor privately first though so that they don’t say anything that will give your DD the message that her obvs are ‘normal for someone with anorexia’ which she will interpret as ‘normal’.
Other than that I can only suggest going private if that is a possibility or finding a good private ED psychiatrist who may be able to refer you to NHS services more quickly.
if you think she has autism then you need to take a much gentler approach. Please reach out to the Charlie Weller trust who may have some tips for you. You have to work with your DD although I appreciate that may be impossible if she won’t work with you. We needed intensive day treatment for things to turn around. She ate for them in a way that she would never have done for us and they managed to get eating reestablished. Not everyone can turn it around at home

@JoyousCyanCatWe ended up as an emergency admission as she got so ill. FTB just doesn't work for us.

She is now eating her own modified version of the mealplan. It's not enough to weight restore but enough to maintain weight at a level she can function daily without the risk of readmission. I always describe her eating as 'functioning anorexic'. Huge MH issues too, loads of self harm and suicidal. Likely autistic too (awaiting assessment). Often, FTB doesn't work that well for those on the spectrum. I have no practical advice. We are stuck at around 85-88 % WFH. It's not too far off where she naturally sat, hence her body is coping. ED team cannot get her to increase her intake. But since she is not in physical danger, nobody seen overly concerned. We are currently focussing more on her MH (recent suicide attempt, self harm etc).

Guess I just want to say you are not alone. But I don't have the solution either. We are totally stuck :( FTB just causes aggression and violence and does not result in eating.

To clarify, when I say it’s not an A&E matter, I mean that that is what they will tell you- but given how quickly things can go downhill, I think that you are perfectly justified to take her there. Especially as there is nowhere else to turn to. And your DD needs to realise just how serious it is.

@JoyousCyanCat when was your dd last weighed? I'm just thinking when my dc hit 90ish% wfh we had such a fight to continue with the meal plan I'm sure others here mentioned the extinction burst which can happen around 90-95% and the ed is at its loudest wanting to fight back. I maybe way off but it's just a thought. It's so soul destroying when they won't eat and they'd rather be on bed rest and not socialise- keep trying, I know it won't feel like it but your words are getting through ❤️

We’re already with a private psychiatrist and multidisciplinary team after the NHS let us down so badly. They’re referring back to the NHS CAMHS ED team in case she needs day hospital or to be an inpatient.

We went to A&E on Friday to say it had been 5 days of less than 500 calories an day and that the last 48 hours had been less than 100 cals a day. The Dr checked her over and said she was fine. I asked what to do if she carried on at 100 cals, whether I should bring her in the next day. He said she’s be fine until we’re next at the clinic, which is tomorrow.

She’s weighed blind every week, so next time is tomorrow.

Will they admit to day hospital if she’s ok physically, but not recovering weight or getting usual cognition back?

They say they need to restore their weight, but we can’t support her to do that, I don’t think.

Ahh @JoyousCyanCat I'm so sorry I think I'm way off. I hate this shitty illness and what it does to children and their families. We're still plodding on after a loss over half term, so I'm afraid I don't have anything helpful to add to pp.

@JoyousCyanCat
Eva Musby didn’t work for my dd either. Dd became sarcastic and nasty and the techniques made things even more difficult with dd completely digging her heels in. She is likely autistic with PDA.

ShanghaiCat mentioned the Charlie Waller trust. These are the carer courses currently on offer. www.charliewaller.org/what-we-offer/eating-disorder-workshops-for-parents-and-carers The approach is very gentle and different from Eva Musby and it is working for us with my dd as she simply cannot handle being told what to do. In fact, telling my dd what to do makes her do the exact opposite.

This approach coaches, supports and guides the ED sufferer and encourages them to eat through collaborative therapeutic techniques employed by counsellors and therapists. The workshops teaches this language and techniques to us as carers. We are also working with a very experienced ED coach, who has a specialist interest of working with people with autism. Without her guidance, I wouldn’t have been able to get dd to eat.

Jenny Langley works with the Charlie Waller trust and was involved in the inception of the New Maudsley guidelines for dealing with Eating Disorders. Jenny runs a series of workshops and one off workshops. She has a session this evening on meal planning from 6-8.30 pm if you see this message and have time to join, presuming there is space. She is also running a session on Wednesday morning on self harm and Autism on Friday morning. These all compliment the Charlie Waller workshops. Jenny wrote the material for the workshops. Jenny’s email and number are at the top of this web page. If you reach out to her she will usually respond very quickly. https://newmaudsleycarers-kent.co.uk/carer-workshop-dates/

I have also done the workshop with Catherine from Charlie Waller and it was great. She offers an intensive 5 part course and her next one is Friday 6th to Sunday 8th.

The book using this approach. https://www.amazon.co.uk/Skills-based-Caring-Loved-Eating-Disorder-dp-1138826634/dp/1138826634/ref=dp_ob_image_bk

If you would like the details of the ED coach we are using please let me know and I can PM them. Dd was eating less than 500 calories when we started with her and now dd is regaining weight very slowly.

Will they admit to day hospital if she’s ok physically, but not recovering weight or getting usual cognition back?

in my experience, you will only be admitted if physically very unwell. It's all so overstretched, if she is physically well, you won't get an admission.

RE a&e, if she is not picking up her eating and you have the slightest hunch she isn't well, take her back. I went to a&s with DD on a Sat last year. Got sent home as bloods and ECG fine. we saw ED team on Monday, basic checks were fine there as well. By the evening, just a few hours later, her heart rate had dropped to 35 BPM, she was stone cold (temp was just 35). I rang 111 for advice. They sent an ambulance who did an ECG (abnormal) and she was admitted to the high dependency unit as things had escalated that fast. Not trying to scare you but with EDs, things can change very quickly. Don't assume you are safe for the next few days just the recent a&e visit didn't flag anything up. She sounds very unwell by the sound of it and unless she increases her intake, will need to be admitted. There is also the risk of reversing syndrome. Has this been discussed?

@JoyousCyanCat I really feel for you as this is very much our experience. By the time DD had deteriorated sufficiently to be considered for NHS admission we were beside ourselves with worry and had paid for private day treatment. Their approach was as Mummy describes above and we saw immediate improvement and she was out of danger in a relatively short space of time and sticking to a meal plan although not sufficient to fully weight restore. She’s in outpatients now and continuing her recovery at a slow pace, which is what the psychologists said is all she can cope with. It’s frustrating but we have to go at her pace, obviously with recovery always in mind

Do you all have things to measure blood oxygen/pulse etc. at home? I don’t feel confident that I’d notice if things took a downturn.

Oxygen is something they don't look at when it comes to EDs. Puls/heart rate is easy to do yourself (just count the pulse) as is temperature. We have a blood pressure monitor but it didn't register DD's when she was unwell as it was too low. No idea if the puls and blood pressure can be also high (I am sure some people here had DC with the opposite to DD's low figures). Ultimately, if you think she needs to get seen, get her seen. ECG and bloods can only be done at hospital. We were always told to take her to a&e if the heart rate drops under 40.

Great. Thanks.

They didn’t do bloods or ECG for my daughter, just temperature, blood pressure and listened to her heart.

I tried showing the MEED thing but they just brushed it off and said they didn’t use it.

Do I need to be more assertive if we have to go again? How do I force the issue?