Support thread 12 for parents of young people with an eating disorder

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Suddenly noticed the old thread is almost full and thought I'd make a new one.

DD's self harming is getting worse. moved from some cuts on hand to cuts on arm and both legs. We removed sharp things and school is checking her on arrival but she is working around this by using things like glass pieces she finds o the ground. Just concerned as it started suddenly and is getting worse. Her legs look awful 😞 Anyone has dealt with it and has some practical suggestions? She is not talking what is bothering her and not really engaging ED team. Weight not increasing either. we are have been hovering under the 90% WFH mark for month. She is clearly unhappy and depressed. ADs have been increased again recently but not sure it's working. I just don't know what to do with her anymore.

We we also doing FBT and a form of
CBT-E so I’m interested to hear how they might or might not work together

Cantfindthewordsddstruggling and WaitingForMojo
So I'm not an expert. But as I understand it with FBT it's the parent who takes control of refeeding the child. The ED is seen as separate from the child.
In CBT-E the eating disorder is part of the patient, and encourages the patient, not their parents, to take control. CBT-E treatment procedures involve patients actively in all phases of treatment, with the aim of promoting a feeling of self-control;patients are never asked to do things that they do not agree to.

I also read somewhere when switching from one to the other, it should be a different person. Not only because of the expertise but because it's opposite in many aspects

I've copied and pasted this.
https://jeatdisord.biomedcentral.com/articles/10.1186/s40337-019-0275-x
It was initially developed in Oxford but some Italian Robert Grave adopted it for children.

I’ve worked a lot with cbt and had cbt as part of my own ED treatment many years ago… as an inpatient, so definitely being expected to do things we didn’t want to do. I think the way CBT addresses the distorted thought processes of the ED is extremely useful and so far I can’t see anything that contradicts FBT… so 🤞🤞🤞 the hybrid kind of approach can work!

Btw I don't know why I called the Italian Robert, it's Riccardo Dalle Grave

So have re- read a bit the book by Grave.they mention that if changing from FBT to cbte four main changes are required as they differ widely
1 the therapist needs to change to a different one
2 parents need to change nature of involvement, from controllers/supervisor to helpers. They don't supervise meals, don't pressure them to finish food.

1. Absence of weight gain should not be criticised or "punished" by privileges taken away.

4 change from externalising the ED to ed not being separate from the child.

@Curlyhairedassasin Sorry to hear about your DD self-harming. You said her antidepressants have recently increased? DS started self-harming when his dose of fluoxetine was increased. We took him off the fluoxetine and he hasn’t self-harmed since. Might not be the answer but worth considering it may be that she needs to change medication.

@WoodenTrain - I haven't actually made the link between the increase in dose and the SH. She is on Sertraline. Her mood seems to go down, not up. We see the psychiatrist soon again and I will raise this. Thank you.

Not had the energy lately to post on here but I'm still following everyone's stories. @Curlyhairedassasin I just wanted to say that one of my close friends experienced hugely increased urges to self harm on Sertraline. I've heard of other similar cases, all anecdotal, but worth raising with the psych?

Thanks @GrannyRoberts. Really useful to know. Will definitely raise it.

How are things at your end?

@Curlyhairedassasin honestly don't feel we're much further forward. DD is OK I guess, in the sense that she's sitting at about 100% WFH and has been steady there for a few months...the ED team keep saying how well she's doing but she is just horrible to live with. She's still extremely rigid around her mealplan and it feels like we're going backwards in terms of her mental state. With a transition to high school fast approaching I can't see things getting easier. I have been trying not to post on here too much as I'm just a bit of a miserable mess!
CAMHS are looking at an autism diagnosis for DD which will come as no surprise to me or her and so much about the past year makes sense when viewed through that lens.

@GrannyRoberts Sorry things are still hard. It sounds just like us - we set at just under 90 WFH. Horrible rigid eating, she is so miserable a lot of the time and referral to Cahms re autism has just been done. For us, and wheels came off in the first year of high school but she loves school now and is doing well there Silver linings and all that.

@Curlyhairedassasin sounds as though we're in a very similar place. I'm so exhausted. I hope you're holding up OK. I don't think perimenopause is helping matters and every day I promise myself I will make a GP appt to discuss how I'm feeling but then the next morning I can't face phoning them.

So glad to hear high school is going well for your DD @Curlyhairedassasin

@Cantfindthewordsddstruggling Would you mind giving me your recipe for the ‘heart attack in a bowl’ pasta please?

Hi not Donna, @NotDonna

pasta with a sauce made from pan fried chicken. fried bacon, full fat cooking cream and then a ridiculous amount of cheddar cheese( I’m talking at least 1/2 kilo!) then garnished with grated Parmesan. We also add veg to it like sweetcorn, onion and frozen peas. The only downside is it does not reheat well at all so you need to just quantities well. We also mix the pasta in so it all comes together in the one pot. If we use onion that’s fried off in the pan we’ve cooked the bacon in.

@GrannyRoberts I am holding up. Just. I hit a wall earlier this year when it became all too much with both girls. That prompted me to see my GP. I am on HRT since and feeling loads better (crucially, I can sleep again). It's worth making that trip!!!

@Curlyhairedassasin my daughter became actively suicidal when her dose of Sertraline was increased. She became better again once it was decreased.

@Propermadam Thank you. Useful to know. It all escalated with the increased dose and starting to wonder if there is a link. Will definitely discuss next time. Never occured to me that an increase in ADs can do this.

Hi everyone, we are still in limbo, about 88% wfh. Saw CAMHS three weeks ago, still waiting for them to call back with next steps as ED team aren’t interested.

DD largely doing ok, she does full days in school twice a week (lunch supposed to be observed but we’ve had no feedback - she takes a pot noodle/ramen thing in a thermos and some days are better than others).

At home she seems to do ok - she often says she’s not hungry but generally will eat about half of what we give her. Yesterday she skipped breakfast then had two chipolatas in a bit of French bread and a handful of Doritos for lunch. I took her horse riding (trying to still do something nice once a week) and she had to stop because she came over waxy and faint.

I don’t know what to think - I can see why they’re saying it’s not ED because her food refusal isn’t all the time, but she is looking like she’s eating and leaving quite a lot, and having these funny turns. Do we just let her get on with it and see if she crashes or do I keep pushing for help?

@Glitterfarti I'm always so frustrated for you when I hear how you've been let down by camhs. When I met with Eva musby a few weeks ago she passed on some names of fbt therapists who work privately, and we were wondering whether to see one of them every month or so to try and guide us. Don't know if that would ever be an option for you? It sounds like you probably aren't going to get what your dd needs from camhs unless they have a change of heart.

We have been offered fbt without the weighing from camhs (because the weekly open weighing felt like the wrong thing for us to do just now). We've got our first appointment in a few weeks and I'm in two minds about whether it's going to be helpful or not. I'm worried about them saying she doesn't have an ed too, as on the face of it I could sort of believe she doesn't - she eats what we give her without much argument. She never eats anything outside of this though, will still discard food if she can, and has started to ask for baggy clothes for school instead of the leggings she has worn for the past year or so. Her mood is terrible, she's been off school more over the last few weeks because of how anxious she has been. She is not anywhere near recovery as far as I can see.

I'm struggling again, I'm going to get signed off for a couple of weeks from work. I don't really know why I'm struggling, maybe it's the fact I can't see this ever resolving. It's a year since we started to notice the ed signs, although only 9 months since we put it all together and started trying to work on it. It all feels so bloody relentless.

Thanks @greydoor, hope you’re feeling better soon, I’m feeling a bit calmer now I’ve accepted we are on our own and professionals aren’t going to guide us. We’ve been paying for CBT, DD is mentally in a better place than a year ago, and has found a friend to hang out with. She doesn’t eat unless we put the food in front of her and watch while she eats it, we can’t trust her to get herself a snack etc or be on her own for mealtimes - we’re expecting weight to drop again as it gets warmer and we all feel less hungry naturally.

Any advice on how to encourage my 15 yo dd to attend the CAHMS meeting and fill in all of the forms they’ve sent for her? She is adamant she won’t engage at all or go to the meeting. She becomes very angry and uses not eating as a way of controlling me.

@Mummyoflittledragon

My DD was 16 (she is now 17) when we first went to CAMHS, I didn’t give her any choice about filling in the forms or going to appointments. We are firm with her and have repeatedly explained that not eating enough has made her unwell enough to now have to attend appointments that are saving her life. In the early days I would say if she doesn’t go to her appointments she goes back to A&E as doing nothing isn’t an option.

I have found that straight talking has been the easiest way of handling my daughter. She does now speak to her psychiatrist (who doesn’t mince her words either) after months of shrugging her shoulders and saying I dunno to every question. We have just ‘celebrated’ 6 months of treatment.

Good luck and be strong and kind.

Thanks @Dinnerisburnt I am so glad your dd is engaging and getting there. My dd uses not eating as a form of punishment to what she perceives as any form of trying to control her and digs her heels in further. Being firm therefore doesn’t work for her. Her form teacher admitted to her that telling her what to do ensures she won’t cooperate. I was a bit shocked tbh but at least others recognise my battle…

Since writing this question we may have had a breakthrough as she wants to go to a smallish music festival very close by, just for the day. Dh and I talked and my take is that anything she wants right now is coming with a proviso and even if she would rather miss out on one activity, she will eventually agree to cooperate for another. So we said yes and told her about the CAHMS appointment and that she could go as long as she engages and fills in the forms. We are hoping that her friend’s parents will also agree. If they don’t, I will talk to dh about him going along too as he can just be on the grounds for the duration…

Once dd starts eating she will be a lot more cooperative. She was over Easter when her friends fed her up but sadly we are now in the situation, where she won’t eat at restaurants and will now just sit and watch her friends eat whilst nursing a Diet Coke. Last night was a good time to talk as she ate high calorie foods Saturday evening and Sunday.