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

[Mummyoflittledragon]

New thread. The old one is full…

@Omhaf this sounds like a very difficult situation.
Two things stood out for me. Your DDs have eating disorders. Your GP saying they need to 'want to help themselves' is ridiculous. They and you need professional support. Some sufferers will eventually want to get better but in my experience most will deny even being ill until they collapse or others intervene. The idea that they will suddenly have an epiphany is unfair.
Only eating icecream, and not much of it, for days is very dangerous. Whatever the weight of the sufferer. Weight itself is not the arbiter here. She could be in severe physical distress anyway. If she has been eating less than 500 cals for a number of days I would get her to A & E for physical checks. HR (sitting and then standing), blood pressure , ECG, full blood tests. The fact that she also feels unwell is also setting off alarm bells.
Can you self refer to the ED team in your area? Not sure when you say you have refered to CAHMS if that is an ED service?
Eating disorders have a strong genetic component.

I know quite a lot about special consideration for exams in England. Happy to dm if you'd like. Long story short - yes you can get additional marks but its a max of 5% so for someone who is very ill its not a game changer. However - if you can submit one component eg coursework, and it is above the required % set by the jcq, this can be used to assess the whole qualification. Noone in the future will never know this is how the qualification was obtained

I would second/third Jenny. She is lovely, and is probably the only one to have given me any hope. I also have one who is considered to not want help. They do want help. They are too ill to make or attend appts. Its very hard to get to someone who understands this is different

I definitely second the recognition of @Mummyoflittledragon for her support. And all the others who have kept me sane on here - it is so appreciated. I am so touched by everyone's support, especially@Pearl97 and her regular check ins with me.

I am doing a Developing Dolphins course through Beat and finding it really helpful. They actually sent us the book linked by mummyoflittledragon when we signed up.

@Weightlossworried I am a true believer that we should help other people whenever we can. You have been so strong and listened to others, even when times have been incredibly tough for you. We are all here to help and support and despite all the issues with social media etc, I’m so glad we have been able to find each other. There is definitely a need for this forum and thread. I can’t wait for the day you’re helping others after your daughter gets better and you can tell them your story and how you were in a dark place, but eventually the sun began to shine xx

Thank you @Weightlossworried. And I totally agree about @Pearl97 amongst others helping to shine a little sprinkle of love and hope, some of whom are yet to join the thread. But they’ll be along when they have the time, I’m sure.

I am really pleased to see the community a little more active at the moment. I need the support too tbh... Even if a fair amount of it is actually giving back, because although my dd is stable, she’s very far from well. And she’s clearly not as well nourished as she was before, because the better her brain works, the nicer she is to me.

This past week, I’ve pulled her once again back from the start of relapse. And it’s so so tricky atm. She’s sitting her A levels. And she relapsed quite badly from the pressure of UCAS application and her mocks, so it’s a really fine line and incredibly tricky to keep her going.

I just wish she’d bloody admit she has a problem. I could feel her at end stages September last year, when she had a brief moment of true happiness - boy related - and then retreated from him. The summer is coming and she’s always happier then. The ED coach and I think she suffers from a bit of SAD.

Hi Shewalks I’d also appreciate any information. I haven’t asked dd’s school if they’ve asked for special consideration. Is it ok if I pm you as well please?

Yes of course❤

Thanks ❤️

That sounds exhausting for both of you. I hope that when the exams are behind her and the sun is shining, you can have some happy times together.

Signing in, thought the other thread had gone quiet 🤦‍♀️😂

Thanks @Weightlossworried xx

And here you are @Girliefriendlikespuppies , ready to put us through our paces. Formidable woman… 😁

Hello everyone, I’m new here. I’m starting to become very concerned about my 15 year old DD. She started severely restricting her food about 3 months ago and has now lost around 18kg in that time. Her weight is still just about ok her BMI is around 20.
she now hasn’t eaten anything for about 48h but she is still drinking - at what point should I be taking her to a&e? She says she feels dizzy and tired. Are they likely to do anything given her weight is still in the normal range?

My DD is adamant she doesn’t want to change or try to recover . We saw a psychiatrist at the ED service yesterday who pretty much said there’s nothing much we can do as my daughter doesn’t want to change. It felt like she was suggesting we just need to let the weight drop to a point where it needs medical intervention it until she wants to try and improve. Is that really the Case? Any advice appreciated - it feels like such a dark place.

@10YellowTulips no wisdom but solidarity. Thank you to those of you pointing me to more resources; I’ve had a v intense work week on top of everything else so will look more over the weekend. CAMHs referral is the way in to ED services: heard from them today and they said seeing as sensory issues are likely a big part of this cos she’s ASD they can’t help and to go back to GP and ask for community dietitian referral (already done: waiting). Haven’t seen DD for a couple of days (work) and DH said she ate a bit more yesterday so a glimmer of hope.

I think you can take her to A&E with that little intake , particularly if shes getting physical symptoms now
Sending support

@10YellowTulips take her to a&e now, she sounds seriously ill.

That attitude from the ED team 🤯

@Mummyoflittledragon 🙈😂😂 I’m really not that formidable I promise 😬😂

I agree to take her to A and E or at least tell her that is the next step. This sounds like a lot for you to be dealing with. These ED teams need to learn that they are showing the children that they can’t make them do stuff. It’s madness!

@10YellowTulips
I hope you’ve seen the messages to take your dd to A&E. BMI is less important than how much they’ve lost in what period of time. And how much they’re eating. Not eating for 48 hours is very serious.

As for the attitude of the psychiatrist, it’s mind blowing how CAMHS leave parents. They should be giving a framework for what to do in the case your dd doesn’t eat.

🤔 I wouldn’t go telling anyone that. 😅😂😂

Two different ED services. Refused to take on dd who was purging, but still " normal" weight....
Mummyoflittledragon , is your dd year 12 or year 13? ED at uni is another eye opening experience of health services....

@Anothersetback ED at uni … good or bad? My two are looking at uni and it really scares me from an eating POV ….

Thank you everyone - if she refuses breakfast this morning I will take her.
In terms of what ED services are doing they are just telling me I have to get her to eat and I recently started a course they organised. But I don’t seem manage to convince her - she sits at the table and point blank refuses. ED services have said there’s nothing else they can do and that to take her to a&e when it gets too bad - which looks like the time has come. I just can’t get my head round how rapid the decline has been.

@10YellowTulips
This is already a medical emergency. There is something called the MEEDS checklist created for health professionals. Medical emergency for eating disorders. MEEDS has a traffic light system. Not eating for 24 hours is red on MEEDS. Eating less than 500 calories in a day also red.

Has your dd had anything to drink?! When they don’t eat, they usually don’t drink, or very little, we are talking maybe 20ml or less. She could be very dehydrated by now.

People with ED can go downhill very fast. They can be ok in medical observations one minute and be critical within hours. You just need to go now, even if she’s now eaten.

Tell A&E she’s been losing weight consistently, over 1 kilo a week for the past 3 months (this is also a MEEDS indicator) and she hasn’t eaten for over 48 hours and has had minimal or no fluids (depending on the answer). She will be seen quite urgently I imagine… hopefully.

@10YellowTulips it seems crazy as if you were able to get her to eat you wouldn’t have asked for help.

You need to take her to A&E for her safety. This is definitely an emergency and you definitely need help xx