Support thread 16 for parents and carers of young people with an eating disorder

[Mummyoflittledragon]

The old thread is almost full. I hope no one minds me starting a new one…

Thank you everyone. I have told them he's attending so fingers crossed we can get him there.

@0tterinthesea
I know someone, whose dd is about 3 hours from her parents. She was well on the way to recovering, but by no means recovered. She was motivated and fully accepted her diagnosis. By the end of the first year, she had made really good progress.

The universities are well versed at dealing with MH issues if our young
people will engage. Issues come when, people, like my dd, who feel unwilling or unable to engage. So my advice would be to get your dd to take every opportunity she can, engage with services and let them know she’s there and if she’s invited to an induction day for people with disabilities to attend and so forth.

@littlebabycheeses99 Fingers crossed for tomorrow. Are you attending with your dh as well? We did with dd.

@Tops16
How are you and your dd holding up? I hope the transition to adults isn’t too hard.

@Mummyoflittledragon yes both of us hoping to attend with DS

@Mummyoflittledragon feels a bit like an impossible time ahead. Ideally she will go to the community adult services and not inpatient. I am hoping a different angle will help. She wants to recover desperately but doesn’t want to restore weight.

Good luck @littlebabycheeses99

@Tops16
Bless her. It’s great your dd wants to recover, even if right now there is a big disconnect between desire and what she needs to do to get there. Have they said yet what they can put in place for her?

Maybe there’s some inspiration in the Jenny Langley / BEAT / Charlie Waller workshops to nudge her along. Idk if you’ve done anything from there. I haven’t done BEAT, but it sounds similar. There seems to be such a lot of stuff I could use if my dd were more receptive and less demand avoidant.

Otter in the sea.
My dad is starting third year.

Make sure you have applied for DSA, they can provide a mentor, not health care professional but someone she can talk to know a weekly basis.
Google redcan eating disorders, they are a charity they can provide councilors who are more familiar with ED. Uni refused as ED are too specialised, for NHS ED she needed to be worse...
It took over a year for her to get help though.

Feasted have special section about going to uni.

This is such good advice and I hadn’t thought of lots of these things yet. Meal planning should work as we do that at home and yes she gets PIP. She is just transitioning to adults now as she is just 18. Her therapist at previous service has been wonderful so I’m nervous about that but she came to the meeting with us and it did go well, I’m hopeful and maybe she could be transferred to services in sep 27. I know enough about this illness now to know that it doesn’t just go away.
But please have hope, a year and a half ago she was being fed with a tube and now she has just been on holiday with friends and did so well in A levels despite missing a lot of school, she is back doing her hobbies and has a part time job too.

Thank you. She does engage with everything now and hasn’t missed one therapy appointment. She still carries a lot of shame and secrecy about her illness so I am unsure if she would attend a day like that though it would be useful. I will definitely contact the uni. It is just such a long way away if she’s struggling

Really useful thank you, will look at Feast

I've posted some links that were sent to me a few years ago. It's on the other thread with "useful resources"

Thanks @Anothersetback. Great info. Would love my dd to engage with some of that stuff!

Well we've had our meeting with CAMHS and the Eating Disorder team and from our perspective it didn't go well at all...

DS spent 2 hours there whilst DH and I waited - we then expected to go in and be given some guidance and also the chance to give our thoughts on everything.

But when they came out, they seemed surprised that DH and I wanted to chat, and then only allowed us a short time to say anything. But they absolutely would not discuss anything whatsoever. DS had told them explicitly not to talk to us we think.

So we don't know about what we should be feeding him, how we should be dealing with college, if we need to be careful about refeeding syndrome, what we do if he carries on eating so little and purging... literally nothing. All they could say was 'we have eyes on him now'.

Is this normal for an appointment for a 17 year old? I mean he can't cook himself anything (autistic probably), he has no idea about nutrition, he's already been severely anaemic. Are we just expected to stand by and just let him feed himself whatever he wants? and then collapse probably...

Gah, I'm so frustrated and so upset. He was visibly smirking when he came out.

He hates us, he hates us 'controlling' him - and this feels like he's playing a bit of a game - and a very dangerous one at that.

First of all, incredibly well done getting him there. It hopefully means an acknowledgement from him that he has a problem.

I am astonished that they didn't speak to you though. It's one thing him not wanting you involved in his care but I'm struggling to see why they couldn't give you general advice and guidance on how to keep him safe. I have no idea if that's normal for a 17 year old, I hope to god it isn't.

Does he have another appointment scheduled?

Hugs @littlebabycheeses99 , you must be feeling dreadful.

@Weightlossworried thank you. No idea if another appointment is scheduled, they wouldn't tell us a thing.

I had to leave for a bit and go for a cry before DS could see me, because I was so frustrated / angry / sad / worried.

I'm going to have to try and disengage from everything for a bit I think because I can't carry on with this level of stress!

I am so sorry @littlebabycheeses99

Can you read this? I googled what the position is with CAMHS.

Your ds has obviously explicitly refused consent. Remember the smirking is the ED, not him. They therefore cannot share treatment details, session notes or updates.

They can only break this under a high risk situation. Immediate risk of harm eg suicidal intent or if your ds lacks capacity to make his own decisions about his medical treatment due to illness.

You can

• submit a written statement with your observations, history and safety concerns.
• request a triangle of care, so that the team work to establish a basic communication agreement. Eg sharing safety plans, but not therapeutic details
• seek support eg Young minds

From what you’ve said, your ds is sailing pretty close to the wind with the capacity. But they’ve obviously decided he’s Gillick competent. I do wonder if that means they did medical obs and he was ok.

Personally I would wait until tomorrow and give them a call. They won’t be able to give you details. However, they may be able to tell you what their standard protocols are when a young person refuses permission for them to talk to parents. I would go with scenarios. Eg if they thought the young person was at medical risk from what their parents said, do you have a duty of care to take medical observations? And what would be the protocol be if they refused?

So with our dd, we took her to A&E for basic obs through CAMHS (due to her medical condition we did these there). They basically told me that if she refused, they wouldn’t be ok to let her leave. Ergo she would be detained.

I would also ask if there is any way they can offer you any kind of support without breaking protocol.

My DD is 17 and that has not been our experience at all. To be fair she has agreed to us being involved / informed, so I assume that makes a difference, but I agree it doesn't make any sense to not give you any information as hie primary care givers

Well done on getting him there

I would suggest contacting the team directly and asking them what the plan is from here. Surely they can give generic advice, and confirm what the next steps are for him in generally, without breaching his confidence

Edited to add I cross posted with @Mummyoflittledragon 's much more detailed advice!

Thank you @Mummyoflittledragon for your detailed response. Will look at everything when I've calmed down, but I truly appreciate everything you have done for me so far in this horrible journey.

thank you @LurkyLurkyLou I'm glad your DD has allowed you to be involved, it makes the world of difference.

You’re welcome and when I said ‘what the parents said’, I would list the things, that are red on MEED. And state These are my observations and they are red on MEED. Ie less than 500 calories and which days if you have that record, weight loss of at least 1kg a week. Plus the regular or daily? purging.

I would also gather an eating / purging record. CAMHS ask parents for record intake. The gold standard is 3 meals and 3 snacks so for my dd when she was in 3+3 she had school days :

7.45 Breakfast (and detail what was consumed, including what was drunk)
10.45 Morning snack
1.00 Lunch
4.00 Afternoon snack
7.00 Dinner
9.30 Evening snack

So if you do something like this, but it will be very empty. eg
1pm wake up
2pm drink and amount consumed etc (he may be drinking very little)
4pm bread roll
4.15pm purging observed

Idk how much you or your ds are going to be around or how much information you can gather.

I am still logging this daily atm btw. Can’t do it with the holiday. And with dd leaving it won’t happen anymore.

@Tops16 ive pm you but reading what you’ve said, I hope that you will find a different approach in adult services. They are not wedded to FBT & not so bothered about weight on its own. Takes some getting used to.

I’ve noticed that by agreeing a weight not to drop below, she’s been able to slowly rebuild her life to a point where she can face the prospect of restoring weight. It has taken a long time during which she micromanaged her intake but nothing else has made a difference.

@Shedqueen thank you so much for your reply, also send a reply. I think if she can get her section lifted and into the community that maybe a change in approach like you describe will be helpful, we absolutely need a different angle.

@littlebabycheeses99 I'm so sorry to read that you are still so unsupported.

My daughter agreed to me being present at her appointments so at least I knew what obs they did and what the plan was going forward.

I agree with @Mummyoflittledragon’s advice. I would email whoever he saw today and ensure they have all the information. If your DS is anything like my DD was then he will have told them that he is fine and mum is catastrophising. I would imagine by emailing them with the extent of his weight loss and his purging etc you are making them
accountable.

You could ask CAMHS if they have an ED support group for carers that you could join. Even better if it is facilitated by one of the staff as you will find out how the service works.

Good luck @littlebabycheeses99, at least he has taken the first step and attended the appt.

Thank you @Mummyoflittledragon I had not heard about twice exceptional previously but it does sound a lot like her. Really useful info.
my DD is diagnosed ADHD and has strong rejection sensitivity. She’s not autistic but does have a few traits - she’s been screened a few times.

we’re going away this weekend so wish us luck - I hope she continues to eat in an unfamiliar setting.ahe had a completely paddy after her FY-AN yesterday because they said things she didn’t want to hear and refused to do her observed meal in clinic and doesn’t want to go back there today either. At least she ate well at home in the evening - I was worried this was going to be it.

@littlebabycheeses99 I’m so sorry your appointment did not go as you hoped. I agree with all the advice about emailing detailed info to the service. Also perhaps it’s worth contacting BEAT or FEAST to ask if they have specific advice for this situation.

I hope nobody minds me posting for some help staying calm. We're just back from an appointment where DD was weighed. As usual they insisted on showing her and she'd restored about 1.5kg. She is absolutely beside herself. I could hear her sobbing before she got in the room. She says she hates us and never wants to speak to us again. She's never going to eat again.

She was wound up before she got in there as they were running late again so she initially refused to go in. In hindsight I wonder if she suspected this would happen.

We've offered to spend the day with her, distracting her but she's too angry and upset with us.

I'm terrified she's going to do something stupid. DH has checked her room to make sure there's nothing in there she can hurt herself with but still. I'm also terrified she will follow through on her threat not to eat and we'll bounce from weight restoration to hospital.

Any calming words would be much appreciated.

Wow @Weightlossworried. I’m so upset for you. I presume this isn’t the male nurse you don’t get on with? Just remember your dd bounces back really quickly and has always been fine. She has threatened all of this before. These are the demons. Her black and white thinking.

The weight gain is a fantastic achievement. And maybe in a week, when things have settled, you could have a chat with her about how you’re going to proceed with all of this.

I am wondering if deep down she has a compulsion to know her weight gain, because she wants to gain, but it’s too overwhelming for her. Just let her know the power is in her hands. And you will support her if she wants to blind weigh. And maybe have another little break from being weighed again.

@10YellowTulips
I hope things go well this weekend. We are also away this weekend with dd for a family meet up. Dd is back very late tonight. Bed then off again.

How things go with eating at the clinic yesterday? I hope your dd managed better. Did you see the TED talk I posted on the resources thread, which explains why it’s easier to eat in the evenings. Albeit this is not a good strategy as it can lead to binging and guilt.

@littlebabycheeses99
How did it go at school yesterday? Did you manage to contact CAMHS?

Thank you @Mummyoflittledragon It was the female nurse we've been seeing, she is absolutely against blind weighing. The frustrating thing is DD had said she wanted to be blind weighed earlier in the week but that if she was asked in the appointment she wouldn't be able to stick to it. I relayed that but it made no difference. They've been weighing her less and doing checks like measuring her upper arm instead. The nurse clocked she'd added 0.5cm so she could have just not weighed her so that frustrates me too.

I know you're right and she's bounced back before. I'm actually going to push for them to stop weighing her altogether for the foreseeable. She is now only 200g under the weight she was pre eating disorder. I don't know if they'd consider that weight restored though. Clearly she's still very unwell mentally anyway.