Teen Eating Disorders Thread 4

[SoTiredNeedHoliday]

Starting a new thread, no 3 is full

Hi all, we have missed our final meeting with the ED clinic as the bloody phone didn't remind us and we were all having lunch (AND it's my birthday today). Have not covered myself in glory there.

Does anyone have a link to the algorithm for height to weight ratio? Looks like we are on our own now.
Current HTW is 85.67 for info, and I desperately want to get her to 90 by September when she goes back to school - no idea if this is realistic?

DBE

[quote NCTDN]@ItRainedForever is that a private service?
It's good (I'm a way) to hear of others who have a child who doesn't sit still. Unlike the typical lethargy that appears to be one of the symptoms, dd is at her most wound up when doing nothing. [/quote]
No, we're lucky that the Maudsley is our local NHS ED service, so I did a self-referral there. Had to wait six weeks for the appointment, but at least things are moving along now.

The restlessness first appeared as her weight fell, then was less when she was at her lowest but ramped up again when we started refeeding. I think it is a really common feature of the illness, actually, from what I've read. The doctor today said No Exercise until after he's seen her ECG results so I've got medical backing to keep her in and sitting down for the moment.

Hello especially to those that are new. I was left reeling by the diagnosis although when we were given it although in retrospect it was all so obvious.

Someone asked how we came to find the clinic we're going to. We asked our CAMHS therapist and she said that another patient had gone there with good results. Absolute all credit to our CAMHS team, they've been really accommodating about us using a private service. They've put DD into sort of abeyance - we're not going for appointments there over the summer but they haven't discharged her so we can come back if necessary. Apparently this isn't typical.

Anyway back to the clinic, I don't they're doing anything particularly unusual or innovative, they're just throwing a lot at her (she's exhausted): nutritionist, art therapist, mindfulness, anxiety reduction, a psychiatrist, group therapy. I just hope something clicks. It's three days a week (11-4 ish) and sometimes I feel the best thing is that she's having two snacks and lunch that I don't have to watch her eat. She's coming to the end of her two-week assessment tomorrow and we're going in to discuss next steps.

Wow, that's quite intense @Valleyofthedollymix. I'm sure it must do something to help? I don't think DD1 would cope with that sort of thing.

DD1 has got her ADOS for ASD on 3/08, a 2 hour ARFID assessment on 1/09 and her 3Di for ASD on 3/09. So I'm hoping that by the time she returns to school we'll know whether she has ASD and what sort of eating disorder she has. I think she was a little unusual in that because she was so poorly when she was diagnosed, the psych went straight for antidepressants and then the antipsychotic, with the refeeding plan and the nuts and bolts of why she was so thin was seen as a bit irrelevant. Now that she's weight restored, they're looking at what to do with her, which is tricky because of her learning difficulties.

Today has been a bad food day. Cheerios for breakfast, morning snack at lunch time, no lunch, no afternoon snack. She's just feeling so poorly with her period that it completely knocks off her appetite.

I emailed the Psychiatrist yesterday and we're going to try ½mg morning and 1mg at night for the Olanzapine.

@DarkBlueEyes that sounds achievable I think. Just looking at DD’s WFH chart and she was 89.72% on 14/06 and 94.93 on 19/07 so she has managed 5% increase in 5 weeks. She is completely compliant though so that obviously has a bearing.

Valley your CAMH’s team sound refreshingly accommodating and flexible. It really is a postcode lottery isn’t it? Your private clinic sounds amazing. And yes I think having someone else in charge of some of the meals during the day must give you a certain sense of freedom! Now that it’s all he school holidays and DD is here I feel like the only interaction I have with her is me bringing her something to eat! It’s so tedious. 🙄

@DarkBlueEyes I agree with @Rollergirl11. DD1 was 84.88% on 30/4 and 90% on 20/5, so 3 weeks. But that was 3kg in weight, so she was putting on 1kg per week at that stage.

Hi all. We had a crisis tonight and I don’t know where to go from here. My daughter who’s 15 has slowly lost weight during her year with the CAMHS ED service. She is likely to be diagnosed with ASD soon and rigidly will not allow me to feed her. She needs absolute autonomy.
I told CAMHS today that I would try again to be the one who feeds her. This caused her to cut herself multiple times all up her arms ( a shock to me as she is new to cutting). She refused her steak and chips and got herself some Weetabix so actually would ha eaten way better if I’d left her to it.
How can I take charge if she puts her life in danger and totally refuses to eat? I will contact CAMHS tomorrow for emergency support. Although she’s not in the red zone yet, I feel she might need hospital support. I’m attaching her weight chart for the year. I’d be interested in your thoughts. I’m desperate for help.

Chart at

@Lunificent Sorry you had a difficult evening, that must have been distressing for you. It’s very difficult and I don’t have any answers unfortunately. If I push DS too far he will bang his head, I back off but then he gets to not eat. I don’t know the answer. ASD definitely complicates matters.

Stressful evening here too as DS3 (ASD and ADHD) escaped and we lost him. Fortunately DS2 and some of his friends managed to find him in nearby woodlands. But he was quite distressed.

@NelleBee I’m sorry to read about your son. I’m glad he was found.
Have you been able to take control of your son’s eating at all? Just not sure, with daughter’s rigidity that I’m going to come close to that.

@Lunificent my DD is ASD with a PDA profile (pathological demand avoidance). I'm in the very early stages of getting help, she has only just been assessed. But the nurse did say that the approach would need to be a little different due to the ASD

He suggested a choice of 2 things. So you choose the 2 things, but her control is in picking which one. This matches with general advice for PDA.

I've found she'll scream at me etc but then eventually pick one.

Thanks @Mogtheanxiouscat. I’m not sure my DD could let go of any control at all yet. I feel like I’m expected to break her. I do t know how long that would take and what damage she’d do to herself and me in the meantime.

@Lunificent my Dd was a severe scratcher and head banger - her forehead was perpetually bloodied. We found in the heat of the moment ringing CAMHS crisis line usually helped - having a different voice speaking with DD worked. As her self harming grew we had the crisis team ring us daily over Christmas. Outside of the heat of the moment, CAMHs put in "Intensive Home Treatment' for 3x1hr visits per week. They worked with DD on crisis plans, distractions and took her out for coffee etc. Initially we couldn't see the value - it seemed aimed at much younger children (Dd was 17/18) but as their relationship with DD grew their interventions became better targeted.
Do you have anything like that available near you - don't be afraid to keep pushing back and saying you need more support

Should say the IHT team were separate to the ED team so needed some coordination from our care coordinator but it worked as a multi disciplinary approach (Individual and FBT/IHT/dietician/home visits at meal times for meal support) . Could you ask for meal support too?

@myrtlewilson - that’s really helpful. I didn’t know I could ask for home support. Will ask for that when I ring today. I woke up feeling so worried and alone in this. Hopefully will get some support today.

@myrtleWilson - do CAMHS have a crisis line at night?

@Valleyofthedollymix glad to hear your DD is going well at the clinic! Hopefully, it is exactly what she needs to push her forward in her recovery. So lucky that NHS have let you have this as a period of absence and not discharged her. Our Camhs team tried to do this for DD whilst she is at her intensive private clinic, but the heads of the trust said no so they have just discharged her now.

Our DD is doing well therapy is intensive and brings out so much that is difficult for her to deal with but she's eating and happier than I have seen her in a long long time. Still a way to go though as the ED has such strength!

Hello to all the new people, I have to catch up on the threads and will be back later.

Yes - the CAMHS line is 24/7. I don't know how your DD 'behaves' when she's in the grip but for our DD she would almost physically change - her eyes would go a much darker, almost shark like colour. Afterwards we described it as her Dark Willow phase for the Buffy fans out there!. This was her "red" crisis zone - violent, almost hallucinating etc. She could go from 'green' to 'red' in the blink of an eye and having someone else on the end of a phone in 'red' really helped. Sometimes us just saying we were calling CAMHS was enough to help her find a little step down from 'crimson' to slightly less dark red etc.

Home based meal support from our experience was offered in a 'she's almost turning 18 so we need to throw everything we've got at her' which was great and I understand why its not offered earlier on because it is more intensive & therefore uses up a stretched resource. However, it did help us in getting some tricks and approaches - if it had been offered earlier in a more proactive way it may have helped us not get into the cycle we did.....

Please feel free to fire any questions! If it helps - my DD is now 5 months into recovery so there is a way out of this - if you look back at the previous threads I never thought we'd get to where we have, I say this to reassure there is hope..

Luni I'm sorry things are so difficult, that sounds awful. I think re the self harm the die hard FBTers would say remove absolutely everything she could cut herself with, lock away all knives etc and keep insisting. Easier said than done though, my dd also headbanged and tried tourniqueting her arm one night. It is so distressing to see your child hurting themselves.

Has your dd got a meal plan or will she 'negotiate' a meal plan that you're both happy with? Ideally following 3 plus 3? It would still allow her some autonomy and you would be able to supervise. Would a snack box work? She is allowed to choose her own snack?

DD met the clinical psychologist yesterday. Her weight to height ratio is 77%. We have arranged for weekly observations with the practice nurse, first one this after. We have lots of reading from the therapist and have started family based treatment.
She’s cooperating but it’s causing her a lot of distress and feelings of guilt.
I’m feeling completely overwhelmed and fearful/exhausted and so scared for my daughter. Ok trying not to let these negative feelings creep in but gosh it’s hard. How do you guys manage your own feelings and fears?
Thanks x

Betty it's really hard, I think I cried more in the first few months of FBT than in the whole of the rest of my adult life!! The general advice is to keep a calm and in control exterior in front of your dd (fake it even if you don't feel it) and let the tears flow freely away from her. If you have family and friends who can support you then nows the time to use them. If you can access private counselling for yourself then that might be helpful and if you feel completely overwhelmed speak to your GP as meds might help.

We've been discharged from the ED clinic - basically our fault sadly. We missed yesterday's online appointment - our phone reminder didn't work, it was my birthday and we were having lunch, we just forgot. The other appointment we didn't miss but got caught out by the time difference and the iphone automatically adjusting for it (I had no idea it would do that so we were an hour late dialling in and of course they'd given up by that point).

"The family did not attend the final appointment today and as this was the second unattended appointment in the last 3 we have discharged X. Nevertheless written information has been sent to Mr & Mrs Xto help them continue to support X with her recovery ." edited by MNHQ at OP's request

I have mixed feelings to be honest - I did not find the one on one sessions at ALL helpful and basically we all felt like sh*t afterwards. I feel embarrassed at my poor timekeeping/stupidity though and would rather not have been discharged for those reasons. At least I won't have someone judging me and finding me wanting once a week I suppose.

DD is so far away from being well it's just ridiculous, but we have blotted our copybook with CAMHS I suppose and that is that. She's currently 85% WFT and is adamant she doesn't want to weigh any more. I just can't see an end to all this.

If anyone has any wise words I'd be grateful for them. I feel like such an idiot.

@Valleyofthedollymix where is the private clinic you are going to please?

Anyone else do you have any suggestions as to somewhere in Surrey - close to Elmbridge/Kingston upon Thames/Esher/Cobham?

Thanks

@SoTiredNeedHoliday is your dd in a residential place?

I have reported my message above as I see I have stupidly left her name in at one point. I hope this will be changed or deleted.

Honestly I shouldn't be let out alone, I'm so rubbish.