Support thread 9 (!) for parents of young people with an eating disorder

[Girliefriendlikespuppies]

Thought I better start a new thread, can't believe we're on to thread 9 😳

Hope all the regulars find it!

@Hennups13 Can you do a self referral? Camhs where we are is also a massive (years) wait, but the eating disorder team is a separate part of it. I did a self referral and we were seen and taken on within the week. I know it's different in different areas, but I was told they weren't allowed to hang about when it was food related.

@Hennups13 I agree with swatty * *see if you can self refer to the ED part of CAMHS in your area. Sometimes it's not part of CAHMS.
If not back to the GP to get them to refer.
TBH I would rock up at A&E. That may force the issue and she'll get properly checked out if you force the issue.
Use this link https://www.rcpsych.ac.uk/improving-care/campaigning-for-better-mental-health-policy/college-reports/2022-college-reports/cr233

Click on Annexe 1 and see page 27 for what A and E should check . They should also arrange a psychiatric review

Sorry page 29

She needs checking out ASAP in my opinion. Thinks can go south dangerously quickly.

Hen I'd take her to a&e and ask for all physical checks and the ED checklist (I've forgotten the name of the form)

I agree with the others you need the ED side of Camhs, they should see all new referrals within three weeks.

Regarding turning 18, we're facing that in a few months. There is talk of a handover to adult services, but they don't take them on until 6 weeks after they turn 18. So there will be 6 weeks with nothing for someone only just out of hospital. Hand washing seems to be the norm. And if she then refuses to engage ...

I self referred as well and had a phone call within a couple of days and assessment and physical obs soon followed. I was quite surprised how fast it all happened.

I wouldn't hesitate to take her to A&E Hennups13. You shouldn't be left to deal with this alone.

Delurking.

@Hennups13, school nurse may also be able to refer you to the ED service. Our nurse could have referred DD (and I wish I had taken her up on the offer as we would have been seen 7/10 days earlier by the EDS). Our school nurse said she just needed details of the weight loss and her current weight. Agree with others above - this is urgent when she is losing weight each week - A&E may be the best call.

@Hennups13 I think the checklist @Girliefriendlikespuppies refers to is the MEEDS checklist. You can't afford to wait for CAMHS. Where are you based in the country? You could check online if you can self-refer.

7 months (with continued weight loss) before treatment here....
Saw on BBC website today how lockdown increased ED...

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She won’t even drink the shake now. Currently sitting sobbing in the car. Tried to get her to the car to take to hospital but she won’t come. I can’t physically move her and I’m on my own. Drove off round the block. Now sitting outside house. I can’t go in. I can’t go back to my life. It’s too much

@Hennups13 is there a friend you can call just to get you some support right now? who will come and give you a hug? It's a nightmare, reach out.

Sorry to hear this Hennups. Thinking of you both

Hennups Call 111. They might send an ambulance. If no joy with 111 just call the ambulance yourself. Your dd is at risk of becoming very poorly and needs to be checked over and possibly admitted for feeding. It is sounding very much like anorexia and it is fighting you.

I'm so sorry you're going through this.

Hen** ring 111 or 999, you can do this.

Is there anyone you can call to help manhandle her into the car?

The fact she's not taking the shake is further confirmation to me that this has nothing to do with her swallow but everything to do with a fear of food.

You both need help and support, given her young age I think hospital is the best starting place.

@Hennups13 so sorry this is happening to you. Please call 111 or 999. She's seriously ill and needs seeing ASAP. Let us know how you get on

Sending hugs @Hennups13. As others have said, do call 111.

I had one of those middle of the night stomach drops when I checked my phone (I shouldn't do that) and there was a message from dd saying she wanted a cereal bar for breakfast. I managed to get back to sleep after a couple of hours tossing and turning and talking to her in my head.

I gave her the usual overnight oats and said dad has finished the cereal bars (I've hidden them) and she said 'OK' and has eaten. Maybe after a sleep the voices quietened? Or maybe she'll attempt to restrict something else today.

My head is always on such high alert for kickbacks. I don't think I'll ever relax.

Thinking of you Hennups13

@Hennups13 we took our DD to A&E - she hated it but it kick started the process of recovery. DD needed our strength against the ED that was tormenting her then.

@BagpussSaggyOldClothCat snap - I question everything like a game of chess, knowing DD (the ED) is trying to take advantage to make the wrong food decision when it has chance. The school holidays are causing me a lot of stress, the freedom to eat her lunch independently - as others have said she is probably eating lunch but not enough (at school a lunch and a pudding were usual). I am so tired of it all - and this will lead into college when I have to trust her eating decisions there as well.

Should I discuss my concerns with her - she tends to shut down and be dismissive with me or should I just persevere and hope that the breakfasts and dinners are making up the calories. If I had the comfort of DD being weighed at least I would know that we weren't on a weight drop spiral, but she won't step on the scales in the house now - it would have to be the doctors, is that feasible if a 16 year old doesn't want to attend the GP?

Nomore I'm not sure it is feasible without causing a backlash/triggering a set back.

It's so hard and I'm in exactly the same position and I don't know what the answer is.

Hen thinking of you, hope you're okay.

Nomore & Girlie

Same here. Talking is hard as she's very defensive of what she eats. She will generally just walk off. Very occasionally, generally if we're away from the house (which isn't often), I can start a rational conversation with her but it's like she suddenly realises what's happening and cuts the conversation off and puts her walls back up. It's frustrating.

I think she needs to be somewhere. She's not ill enough to be an inpatient but she needs to be with professionals on a regular basis that she can develop a positive relationship with so they can get to the bottom of her issues. Camhs appointments for us now are just obs, a very brief chat and out the door as dd will not engage. I'm not a professional. Being empathetic and biting my tongue all the time is draining the life out of me.

I can't get her better on my own, that is evident so what am I supposed to do?

@BagpussSaggyOldClothCat I have the same feelings and our CAMH meetings were the same - actually DD refused to attend them so the school nurse took the OBS. The chats at CAMH were actually unhelpful.

DH has spent 18 months reading, investigating and printing - in my mind we are in Phase II of FBT (although CAMH have discharged DD as weight restored) - where DD should be able to do some things independently and at 16 she is forcing this autonomy, when all I can think of is her smaller / uneaten meals when not with her family. The only way to monitor this is to ask her what she has eaten and she is then hostile.

I am at the stage when I feel that I can't get her better on my own, and DD will have to get herself better. Pushing the food was manageable when she was younger, but now her age and independence makes it a struggle to do this - I fear that the weight DD restored going through the horrendous refeeding Phase I will be lost and we end up back there again.

Feels like we are at an ambiguous stage, her physical appearance belies the still-raging battle in her head .

@Girliefriendlikespuppies could I ask what you include in your DD's college packed lunches - I'm wary that DD will get 'bored' and wonder what variety can be included, how they can be mixed up.

I've just committed a cardinal sin 😞 DD ordered herself a strappy top and some shorts. Paraded herself in the kitchen and said she wasn't sure about the shorts and might need a different size (smaller). But she liked the top. While I was not jumping for joy she said "I don't feel like you like the top" and I replied I did, she just looked really little 😞😞😞 She's stormed off and probably not gonna wear anything other than pyjamas all summer. How do I get past this one? I was just shocked to see her limbs.