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

[Curlyhairedassasin]

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

@Curlyhairedassasin am so sorry - you sound utterly exhausted, am sorry no one has stepped up to give you and your Dd the support you need. I think Nan’s suggested phraseology is a good one - I’d add on a question to them ‘do you acknowledge I am telling you I can’t keep her safe?’ “What is your suggestion after I’ve told you I can’t keep her safe?” So it pushes accountability around solution finding back on to them.

@Curlyhairedassasin @myrtleWilson Good suggestion from Myrtle there. My friend who gave me the advice (and works in a related field) also suggested I ask for the name of the responsible clinician who recommends that she be sent home after I had said it wasn't safe for her "in case the worst happens". I am so sorry this is happening to you. I wouldn't wish this disease on my worst enemy.

@Curlyhairedassasin if she has a plan for how she would do it then my understanding is that they have to take it much more seriously. And emphasise that you cannot keep her safe at home. I’m so sorry this is happening to you and your DD.

I was about to send you a post about PRUs but it might not be the right time. There was a guy talking about them on the radio this morning, saying that they take a person centered approach. Sounds like they do a lot of therapy with the kids and help them to find themselves, particularly important for kids with anxiety who are in constant fight or flight mode. They say that all the kids there have unmet needs or trauma of some sort and they work really hard with the kids to get them back to mainstream education as soon as possible. What really stood out for me was the kindness they show the kids and their willingness to understand - something that mainstream aren’t equipped to do.
Ultimately, anorexia is not about the food so therapy is really what your DD needs to understand herself and find better coping mechanisms.

@Shanghai101 we have been referred to a Pru and hope she gets in. We liked the place when we looked around.

@Curlyhairedassasin
I am sorry you are going through this. I don’t have the experience to know what to say. But I just wanted to send love. ❤️

@Curlyhairedassasin From my experience (not with DD, but elsewhere), you need to be explicit about risk.

you may even need to sit in A&E or call the police. Just keep saying the really hard things “this isn’t safe”, “there is too much risk”, “she is going to die and you need to recognise that”.

I’m sorry this is happening.

Sending hope @Curlyhairedassasin

@Curlyhairedassasin
FREE SESSION
New Maudsley autism and eating disorders session - Thursday October 17th 1.30pm - 4pm

Email: [email protected]

I’ve just walked out. I don’t know what to do. My partner is in the house working so DD isn’t alone. I’ve left my daughter with her lunch in front of her, after an hour of her refusing to eat. I’m sitting round the corner in the car crying. I’m so angry and scared and sad.

Day three of FBT. I feel like a failure.

@JoyousCyanCat You are not a failure. At one point (at DH's insistence because I could not stop sobbing and he thought I was going to tip over into depression) I checked into a local hotel for two days before putting on my big girl pants and coming home. FBT was the hardest thing I have ever done. I would strongly recommend you and DP both make sure you have breaks. We took it on turns for supervising snacks and had one complete day each off at the weekend. Take all the support you can get. Is there a friend you can go for a drink with this evening? Hang on in there. You can do this.

Definitely not a failure @JoyousCyanCat - fbt is extremely tough. Great advice from Nan, do whatever you can to keep you going. My DH and I would quite often have to swap during meals or snacks because one of us would just get to the end of what we could do. I would frequently have the urge to get in my car, and drive and drive to get away. Try to take one meal at a time, calories in is the only goal, and those calories all help to heal.

Oh JoyousCat, I’m so sorry. It is heartbreaking. I know how you feel but you are not a failure. This is a terrible illness. @Girliefriendlikespuppies is a pro on FBT and I have heard her recommend Eva Musby videos to those starting FBT. She has lots of useful phrases you can use along the lines of “trust me, this is what you need” etc
I would also recommend that you listen to Dr Laura Hills TEDTalk on eating disorders. In it she plays an audio of what it sounds like to our children when we ask them to eat. When my daughter was well on the way to recovery I played it for her and asked her if it was accurate and she said it was. It helped me to remain calm and patient once I understood that she wasn’t just being difficult for the sake of being difficult- so to speak. Not eating wasn’t a choice per se.

And I second Nan’s advice to tag team if your husband can manage it. It took a while for mine to get that this wasn’t a choice for her but once he did he has been a great support and is actually probably better at it now than me because he gives her more autonomy.

Can you get your husband to bring you out a cup of tea and listen to some music in the car? I used to listen to murder podcasts but apparently that wasn’t the best coping strategy – according to the family Therapist!!! It did make me feel better though 😊

Solidarity with those finding it particularly hard today. We had some success with FBT last autumn and up to the summer this year - at one point DD even got her period back before her weight sadly dropped again. @JoyousCyanCat I remember, in the early days of FBT, feeling as though every meal was a disaster, especially when I didn't hold it together as I wanted to. But in my experience things do reset. I can't articulate it well, but today doesn't define tomorrow and even when I thought my relationship with DD must be permanently changed, we bounced back. For us, progress wasn't linear - and even when we were heading in the right direction it could be achingly slow. It's so hard but these are early days for you. I second what others have said about FBT being the hardest thing I have done. 'One day at a time' and 'we go again' were good mantras for me

I feel like a bit of a fraud offering advice, though. It seemed we were so close to cracking it with DD: before the summer break there was talk of discharging her from CAMHS this term if she was still doing well. That did make me nervous as, although her weight increased, she was maintaining below her fighting weight and the voices in her head never quietened down. In the end we haven't had the luxury of fretting over discharge as DD went backwards over the summer holidays and is now the lowest weight she has been. It looks as though she may end up at the Arc Day Programme opposite Charing Cross Hospital that is run by the NW London NHS Trust and I wondered if anyone on here has experience of that programme. Grateful for any insights.

DD tried to overdose in Friday. Didn't work but I really don't know how much lower we can sink. Scary thing is that it happened under my watch whilst DD was on suicide watch already. All meds are already locked away but I had the pillbox out in the morning to give her the morning dose and then got distracted with DD1 and DD took it all. It's all my fault really.

We now have a crisis team involved but DD is refusing to speak to anyone. A SW has been assigned to us. She is coming earlynext week. She says she needs to speak to both girls but not to my husband. Anyone any idea what that is about. I am getting a bit paranoid and scared!

@Curlyhairedassasin So sorry to hear this. I hope the SW getting involved is the start of more support for you. We had a social worker assigned after my DD ran away and she really did her best for us - including things like trying to get my son assessed for ADHD, and trying (albeit unsuccessfully) to get post-discharge funding. Don't hold back on telling her what you need - you cannot possibly be on 24/7 suicide watch ad well as caring for your other DD and earning to put a roof over their heads.

@Curlyhairedassasin so sorry to hear that latest update about your dd. My DD’s attempt also happened when both dh and I were at home. It’s so incredibly confronting when you can’t keep them safe at home.
Hopefully the social worker can be of help. Even if dd won’t open up perhaps more support can be in put in place to support you moving forward.

So sorry to hear @Curlyhairedassasin. I pray that the SW can help. Agree with Nan, tell her everything. Sending hope X

thanks all. I feel a bit calmer this evening. She opened up a bit up the crisis team. Will find out next week if she is getting into the PRU. I so hope they say yes. DD also wants to go there. She says she cannot cope at current school much longer. too big, to loud, too crowded, too everything. At least she is talking a bit. I just wish I knew how to help her more.

@Curlyhairedassasin thats good that she opened up to the crisis team. From what I heard about PRUs on that radio show, it really sounds like they could be an important step on the road to recovery. Their slow. person centred approach could be just what she needs. 🙏
As I have learned, eating disorders are not about food. It is not unusual for girls with undiagnosed ASD to struggle in secondary school and with puberty and growing up.

How is everyone today? Hope SW was helpful @Curlyhairedassasin. How are things, @WoodenTrain?

DS had observations done yesterday and has lost weight again, he’s back down to 44.8kg (73% wfh). At his lowest he was 43.5kg back in April. Not sure what the plan is. He won’t engage. I’ve tried to talk to him about increasing his intake, he just gets angry with me.

So sorry to hear that. Can't understand why they aren't acting. Had no-one mentioned sectioning? Thinking of you.

@NanFlanders Thank you, it was ok and not the intrusive visit I was fearing. but not sure how much she can do. We tend to go round in circles. She agreed that the main issues that we have no Camhs input (key worker on long-term sick so they just stopped seeing her months ago), no school support - DD is on a part time timetable as school feel they cannot meet needs. SW said she will see if we can extradite the ASD assessment. 5 years is just too long to wait for us but I doubt she can do much. I am well connected locally and so many families are in crisis because of the huge delays. We aren't the only ones struggling. We discussed school and I will apply for an EHC assessment myself. School is trying to offroll her anyways (or it feels like it atm) so I better take control and sideline them. I have done it for DD1 so I am familiar with the process. Panel is meeting today regarding a temporary PRU placement for DD. We hope do much they will take her. DD wants it too🤞🤞🤞

@WoodenTrain DD is really struggling to engage too. It's so difficult. How do you deal with it! DD used to talk to me in the past but stopped that too.