Support thread 14 for parents of young people with an eating disorder

[Curlyhairedassasin]

New thread as old one is filling up

@TheaBrandt1that's great news. How far are you into the weight regain? We are still only at 80% wfh but we are doing a little trip away to see if a bigger family holiday will work. Does your DD count calories still?

@HarryPotterCupboard hi sorry you’ve had to find this thread.

It’s really tricky to navigate the early conversations especially if your ds hasn’t come to you directly. Can you broach the issue by saying things like ‘I’ve noticed you seem more anxious around food recently’ and see where that takes you?

Ideally he needs to see a Dr as purging can be very dangerous and put electrolytes out of synch quite quickly.

Has he lost any weight?

Hi @Girliefriendlikespuppies , thanks for the quick reply, no he's not lost any weight yet as far as I can tell. He's all muscle though anyway. It's very strange as he's really into fitness and understanding electrolytes etc so maybe doesn't understand the damage as yet. Thank you I will try to talk to him tonight. I just don't know if I need to call in Cahms already. I had a good read of the BEAT website which has some helpful tips about talking too. Feeling so lost already!?

@HarryPotterCupboard hopefully you can use his sport as an incentive to get him back on track. I would be tempted to book an appointment with a good private ED psychiatrist as a first port of call. GPs in general are not sufficiently knowledgeable and it may take too long for a CAMHS appt. The psychiatrist can explain to him the dangers of purging and why it is essential for him to stop purging if he wishes to keep training. It will be hard but the key is to keep his world from shrinking, he needs motivation to beat the eating disorder.
The treatment for all eating disorders is the same regardless of whether it is restriction or binging/purging et cetera. Motivation is key and it sounds like his weights will provide that motivation. You are right in wanting to catch this early and turn it around before it becomes entrenched.
As @TheaBrandt1 said Eva Musby has some great tips and FBT works for many. Unless he is neurodivergent then you have a good chance of turning this around successfully - it becomes harder when autism is in the mix and there is greater rigidity of thought/inability to think flexibly or difficulty to self reflect.

HarryPotterCupboard , I'm dipping in and out of these thread, but I saw your DC had issues with binging and purging. And healthy weight oh and also very sporty.

This was my daughter on and off for about three years. Till purging became so frequent she lost a lot of weight.

Yes to seeking help asap.
However I felt camhs was only getting into action when she had lost weight. In fact she got discharged twice before. I know the advice was 3 meals and 3 snacks but she already did that from before her purging started, so was useless advice.

Also, get your DC checked by the dentist . First visit DD needed about 10 fillings! They can prescribe some high fluoride tooth paste. Make sure he doesn't brush too soon after purging as more likely to do damage. Just rinsing with water.

It’s so individual. We were quite hard on Dd and explained if she didn’t eat she could forget her GCSE’s and social life. The psychiatrist said the same to her backing us up. I even said your choice if you don’t eat you cannot go to the post gcse festival you have looked forward to for years. The desire for her life to continue turned out to be stronger than the anorexia - so far 🤞.

I’ve just dipped quickly into the thread. Am very preoccupied atm with dd and my health. Jenny Langley from Charlie Waller trust / New Maudsley (ED clinic) is doing a binge / purge session on weds 23rd July 6-8.30pm. I would recommend contacting her. [email protected] to book a place.
Sending love to you all xx

Please help me. My Dd has been in slow decline over the last few months. Terrible year, transitioned to high school, all broke down, diagnosed autistic. Her eating has been slowly reducing. Has admitted she has been purging. We have finally got a referral to ED team but it’s over a week away and I don’t know if we can last. She has eaten 350 calories yesterday and today which has been a real battle, and I just don’t know what to do. She has lost 4kg since April, 1kg of that in the last week. I am so scared.

@fridayatlast take her to A&E if she’s eaten that little. She will have some checks and , if nothing else, it might bring the ED appointment forward. I hope she will agree to go and you get some help.

if she won’t go because she says she’s fine, perhaps call GP or NHS direct if out of hours? I found my DD would take advice from outside the family.

Agree with Shedqueen. Sometimes a ‘higher authority’ can get through to them in a way that we cannot. This is a very dangerous phase of the illness and she needs to be monitored closely and regular feeding re-established. If she has been eating very little for a period of time then she is at risk of refeeding syndrome and will need careful monitoring and her bloods checked regularly.
Don’t hesitate to take her to A&E. She is young and as such may seem like she is ok but in reality may be in a lot trouble physically. Things can go downhill very quickly so in your situation I would want the reassurance of physical obvs at A&E.

Thanks for your replies. I’ve told her we’re going to A&E if she doesn’t eat more today. We have a physical examination appointment on Tuesday with our GP. She has eaten a little breakfast but every time she eats we have a major panic attack style meltdown. My son is just out of hospital after major spinal surgery and she has just plummeted while I’ve been in hospital with him. Really feels hard to cope or know how to help her. I really appreciate your replies, we will see how this morning goes …

Hi @fridayatlastsorry you’re here. What I didn’t know at the beginning of this awful illness is the distress after a meal/snack even drinks in our case is normal, it’s because you’re going against the ‘anorexia voice’ it can be very loud after a meal and the risk of self harm is high (not to scare you, just so you are aware) it becomes loud as it wants to stop the young person from eating again but you keep going offer reassurance as you know this is hard but it’s the right thing to help your dd get her life back. Anything that’s a good distraction, we played games, got outside with the dog he couldn’t walk far in those early days and it was more or less bed rest but the process of being responsible/caring for the dog and a short wander round the street could do wonders for his mood.
I hope today has gone better, there is so much advice here and there is never a silly question

It might be easier for her to eat with a distraction - my DD is on a meal plan and managing quite well when she’s on the sofa watching her phone if it’s something she can eat with her hands. She’s doing much worse if she feels observed (we had a meal out in public which was a disaster), and sat up at the table seems worse than on the sofa with the tv on.

@fridayatlast How did the GP's appointment go? Hang on in there until the ED team this week - hopefully you should start getting more support then.

Hi @NanFlanderswe ended up at A&E on Monday and had bloods, ECG etc. they talked about admitting her but finally let us come home. We’ve just this morning seen the ED team and have left with prescriptions for Olanzapine and antidepressants. Along with an eating plan. It’s going to be an interesting week. She’s already freaking out about the foods on the list and says she doesn’t want to take the meds as she doesn’t want to feel better ☹️

@fridayatlast Hope the meds work their magic - do keep an eye on your DD though - mine used to pretend to take the meds then hide them. When my DD started to recover and made the decision to take ADs herself though, they were an absolute game changer. Good luck with the meal plan.

Thanks xx How on earth can she go from nothing to three meals and three snacks a day? She’s terrified ☹️

So sorry @fridayatlast, it is terrifying and soul destroying but you can do it. Read back over these threads. They are full of hope. X

Use distraction, TV, games like bananagrams, pictures of favourite beach, getting back to sport/dance/drama/clubs, beads to make jewellery etc. Be gentle and reassuring and don’t lose it in front if her. Let someone else take over. Her anxiety is already sky high.

Watch Eva Musby for tips on what to say. Even the tone you use is important.
watch Dr Laura Hills Ted Talk - Eating Disorders from the inside out.

Have they mentioned refeeding syndrome - if she has been heavily restricting? Ask them if they haven’t mentioned it as it is very serious.

@fridayatlast If you cannot make her eat, she needs to be admitted. Bit gobsmacked that they let you go home in your situation with her food refusal. ADs will take 4-6 weeks to kick in. and won't help anytime soon. Olanzapine is much quicker but it's not a magic bullet. DD was put on olanzapine during her first admission and refused to take it initially (she had googled and found it causes weight gain - which I think it can if it's used in my higher doses when it's taken for psychiatric disorders). if she cannot eat, she needs admission. Sometimes, you just cannot turn it around alone at home.

If she agrees to take the meds, make sure she really swallows them and doesn't shut pretend take them.

@fridayatlast sending very best wishes. It is hard to start a meal plan and she will be terrified.

Just try to keep calm if possible and the distraction suggestions above are excellent. The ED Service probably said a time to persevere for meals and snacks? For us it was 30 /15 minutes and then to take it away. I remind myself that I can’t make her eat, i just try to support her and hopefully don’t make it worse. If she doesn’t manage to follow the meal plan, tell the EDS and back to A&E if she is eating very little or at the weekend.

My daughter often says she doesn’t want to get better. I find it upsetting but it is the illness talking. Currently we have said that she needs to take her medication if she is going to be at home. (We agreed this course of action with the psychiatrist last time she in hospital). Getting a suitable dose of ADs has been really effective at helping her anxiety but it’s not quick.

Hi all. DD was finally discharged yesterday after two weeks on a general medical ward. She had the feeding tube removed after a week and has been following the meal plans provided since she was admitted. She's now on Fluoxetine and Melatonin too, which we're hoping will have an impact. We're all nervous about being back home again, but so far she is trying really hard to stay on track. I wanted to ask if anyone else here has had experience of services 'gatekeeping' ED diagnoses? We had a full review with the CAMHS specialist ED team today (2.5 hours) where we went through everything, and DD was very open and honest about her thoughts, feelings and behaviours around food and body image. It was really hard for her (and us) but it felt important in order to get the right diagnosis and support plan. At the end of the meeting we were told DD doesn't have an eating disorder and she will be transferred back to generic CAMHS for CBT for anxiety, low mood, emetophobia and OCD. We were all in shock after everything that has happened, and DD burst into tears. She said she feels like they're telling her what she's going through isn't real and she now thinks she has to try harder as she's clearly 'not thin enough' to qualify for specialist help. It's really hard to know what to do from here, and I'm feeling pretty despondent and hopeless too.

tha sounds odd given that she has been in hospital so recently. Sometimes the eating disorder isn’t the main diagnosis but, given her reaction, that sounds unlikely. Can you ask for a review? I haven’t done this exactly but i have complained to the head of services in the past.

i can understand that you will feel hopeless.,Given her recent hospital admission, it seems reasonable to ask for an explanation. If it’s CAMHS, you can ask to see the caseworkers without her if necessary to argue it out if necessary. Whatever the diagnosis, her treatment will be more effective if you understand the rationale and can support it fully. They also need to know that hat she’s saying and respond to that.

Others may have better advice as we had good support in CAMHS and a relatively straightforward diagnosis. it didn’t work and adult services have been a s*show but that’s a different matter.

@PermanentlyExhaustedPigeon80 I can't believe what I've just read. Two weeks NG feeling and she doesn't have an ED???? This link explains what you need to do to get a second opinion: Mental health assessments - NHS https://share.google/BRcO3BDKYz32XUmP1 look

And yes, I have heard of extreme reluctance to diagnose. My DD was in hospital with a girl who was persistently denied an AN diagnosis because she ate chips (in small amounts) - though every symptom screamed AN and she ended up NG fed.

@PermanentlyExhaustedPigeon80that’s disgusting tbh, I’d immediately complain via PALs and ask for a second opinion.

Gas lighting by the ED teams isn’t unheard of but in your DDs case it seems very extreme!