teen eating issues support thread

[myrtleWilson]

Hello,
would anyone be interested in joining a thread to support each other as we support teens with eating disorders @MNHQ - I'm tagging you in as am conscious of triggering issues and wanted your ok/ground rules to such a thread..

Happy to share our story with DD if others would feel it is helpful...

Oh god I'm so sorry @lougle and @Scr1bblyGum that things are so rubbish for you but good that you're hopefully having the help of professionals.

And sorry @Lottsbiffandsmudge that you have to deal with the exercise on top of the food. Doubly challenging.

And sorry @Girliefriendlikespuppies that you've had to sign off work but it sounds like you were being stretched too thin.

God just sorry for the whole lot of us. It is so hard to manage, it really is.

Am so sorry to read of everyone's difficult times

Lougle - am glad you were admitted although am sorry that homelife has kicked off a bit this morning. My heart breaks at the thought of your DD signing 'home'.... I do hope this is the start of some expedited treatment for you all.

lotts - well done sticking to your guns. Don't worry about beating yourself up about not enforcing it sooner - I think we've all been down that path of realisation about aspects of the ED. We have a rule that we'll enforce that weight is only taken at CAMHS obs. If a GP/nurse says they'd like to do it, we just refuse. Obviously this is in context of DD keeping to eating plan not restricting.

girlie - god the self harm is so distressing - I suppose we're 'lucky' in some way that all the self harm is done in front of us so we know where we're at. That said, we don't allow DD to be alone in her room except for sleeping - if she goes up to shower/change/dye her hair at least one of us sits in/outside her room. That seems a sensible plan re work - DH has been signed off and I'm still working but it is hard as we find we're both needed to be literally side by side with DD for every meal at the moment.

scr1bbly - hope you get sorted soon - have the communications between Camhs/hospital and you improved at all?

eve - it is tragicomic at points isn't it! My DD is the same about calories having to be 'worth' something. She gets freaked out if we present her meal in the form of one or two dishes. So for lunch, normally 350 calories - there is a soup (Amy's French Country) which is 381 calories but if we gave her just that it distresses her so we have to have some soup, a cracker, some fruit, some yoghurt - the rotation of food rather than eating one big thing is a 'rule' of hers.

valley - great news on the gain!!

Still tough here, DD has managed over a month on this plan (1800 calories per day) which is the longest and most she's eaten in months which is really taking its toll on her. Mood is very low and self harming, distress is up. Plus meal times are taking longer. So whilst she's eating the calories it does in many ways feel like we're back to where we were a couple of months ago. Recovery seems like a long way off..

So we have just had a long chat with DD1's new consultant. He suspects ARFID rather than pure Anorexia Nervosa, but said the initial plan is the same regardless.

DD1 will be an inpatient for at least 7 days. He feels she's at high risk of refeeding syndrome, so daily bloods and weight, with QDS obs. Wheelchair if she needs to go anywhere.

Initially a 1000 calorie plan with 6 meals per day. If she can't comply over the next 48 hours, then NG tube, but only with consent/mental health assessment.

Glad to be finally taken seriously.

lougle - am sure you're breathing a sigh of relief - we all are for you as you did seem to be in a limbo. Fingers crossed that the meal plan goes okay and worry about re-feeding recedes.

DD1's new consultant said "So apart from the dietician, who out of all the people you've spoken to is actually paid to look after DD1?" I said "Nobody. Everyone was very nice, but seemed reassured that someone else would deal with it". He said "So you've just been in a whirlpool of distress then."

Which just about sums it up!

Lougle I'm really pleased they are taking it seriously at last but so cross it's taken so long for you to get help!! Not sure if you meant to put your dds name in the post?

I'm feeling very wobbly today, didn't sleep well and it all seems overwhelming tbh 😕

Thanks, so tired I hadn't noticed!!

@Lougle things appear to be moving for you and your DD finally hope it continues.
@myrtleWilson I wish I had just insisted on DD not being weighed. And you are right I need to be strict.
Had CAHMS zoom call. DD as uncommunicative as usual. Often feel like i am the only one speaking. Dietician backed me up on accompanying her to exercise and to meet her friend etc and I think we have agreed to up the dose of her meds. She has been hideous since.
Hugs to you @Girliefriendlikespuppies

Another Mum on the ward has just suggested the EDSUK Facebook site - do any of you use it?

'Whirlpool of distress' - your consultant is poetic as well as kind @lougle. Really hope he can be a constant.

Our dietician's appointment has been cancelled with no replacement or explanation. Sigh. I've got her email (not ever met her) so I think I might just dump all my questions on a message since I don't know when we're going to meet.

That's a bit rubbish @Valleyofthedollymix

I've just joined that fb group Lougle its very good actually, seems supportive and good advice. A lot of the parents mention olazapine as being a useful drug for EDs, does anyone have any experience with it? How did day one of the refeeding go?

Valley that's rubbish, we've been let down by various members of the ED team and it's so hard when you're desperate for help.

that sucks valley - message dump ahoy I say.

girlie DD is on promethazine for her anxiety which I think is similar to olazapine. It was working well in combo with the fluxotene but we've got a meds review tomorrow to discuss upping the flux as her mood is so low, the depression is really strong at the moment. Hopefully if we can adjust the promethazine/flux combo will give her a boost..

We have first contact with the EDS team tomorrow. The lady who is coming just deals with referrals, so she won't be 'our person'. She sounded nice though.

Myrtle my dd does well on Promethazine in hospital. Refuses to take it at home.🤔

Really glad I belted here after work and an appointment with AO having arranged time off work for the next few days. Dd is being foul.

Great news Lougle am pleased wheels are in motion..

Scr1bbly - how interesting, why does DD refuse to take it at home? Is it an 'authority figure' thing?

@lougle that's the FB group I joined recently. It has been very helpful for advice and I only really lurk...

My suspicion is It helps her eat. She says it does nothing.In hospital it stops her from being tubed as it stops the vomiting from anxiety. Doesn’t vomit at home so I guess no incentive to take it.

DD1 is in floods of tears. Keeps signing home (she reverts to signing when she's upset) and saying she's terrified of this place. So hard.

oh lougle am so sorry your DD is so distressed. If it helps my DD settled into a hospital rhythm after a day or so (she is NT so it may not be a helpful read across). Is she in a position to expand why/what part she's terrified of - i.e. things being 'done' to her, new people every day, no space etc?

I think it's being away from family and the coronavirus thing.

Hospitals are particularly scary places at the moment with everyone masked up with PPE. It's a visual reminder of the threat of Coronavirus and children have absorbed the message that it's a terrifying killer (when fortunately it's not for them).

Off to the meet the therapist at the ED clinic this morning and to have an official weigh-in, so it will be useful to compare our scales. Hopefully I can get a chance to find out what's happening with our dietician appointment at the same time. I've no idea what form the therapy is going to take - with me or without.

Hope the weigh in goes well, @Valleyofthedollymix

DD1 was weighed this morning - 38.1kg up from 37.3 kg on Monday. She ate well for breakfast (Coco Pops, toast and a glass of milk). My DF said that "perhaps I should have let her have as much cereal as she wanted at home" (we encourage them to weigh the amount on the box, because they were pouring huge bowlfuls then leaving it when it was too much). I pointed out the the cereal she had at hospital was a 30g single portion box. DF is only trying to help but the implication that I've contributed to her weight loss is a bit of a sting.

I've just looked up the healthy weight for her height and it's 50.5 kg, so she's 12kg away.

It might be knowing she can’t escape eating. That really upsets my dd. She also finds the tubing with her sensory issues really distressing. All intertwined. My dd vomits with the anxiety. Never does it at home.

We had a good session with the EDS nurse. She thinks atypical AN/ARFID crossover.

DD1 is eating quite well, which the Consultant thinks might change once she gets familiar with the environment. However, she's already showing signs of refeeding syndrome (magnesium and phosphate have dropped, by are just clinging on to the bottom of normal range), so they're going to supplement with potassium, phosphate and magnesium. DD1's face was a picture.