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.

Your DS sounds very similar to my DD. She didn't engage at all with the FBT method of demanding food to be eaten, keeping her out of the kitchen etc. Also no hope in leaving it up to her of course- she started eating nothing. We eventually got to a point where an inpatient unit was inevitable, when she started eating bit by bit. Very slowly but surely she has increased her intake to a point where she's no longer losing weight. I'm hoping we'll see some weight gain soon. Sometimes unfortunately autism makes treatment much more difficult, I suppose it depends on the individual. I really hope some help is offered for your DS soon which might help spark some motivation in him.

@WoodenTrain yes it’s a lengthy assessment. With ours it was just DD & I who attended as DH was overseas. They took her BP, HR, height & weight initially. Then a nurse and I think a psych spoke to us together - lots of questions. Then they spoke to DD alone and me alone. I’d kept a food diary which they photocopied. They then had a meeting without us, which took a good 20-30 mins. Then back to the both of us where they told us their thoughts and next steps. We were there around 2hrs. Take something to do whilst they’re in their meeting. Good luck!!

That is us too. DD is likely autistic, demand avoidant. Pushing food causes huge violent outbursts. FTB is just not working. she has certain foods she eats and school is extremely important to her. so she is eating to stay at a weight where she can attend school full time. She was inpatient last Summer as she was so ill and needed physical stabilisation but we are stuck. Psychiatrist and ED clinic that she is very treatment resistant. They link a lot of the issues to her probable autism but as her WFH is hovering around the 90% mark, not much else is offered in terms of support. We have been going like that for almost 1 year now with little progress. it's soul destroying. She is such a great kid and could do so many things but her world shrank to this tiny little prison that the AN is and she just cannot get out of there (and don't get me started on the affect on our family).

@greydoor @Girliefriendlikespuppies @lyriccat @WoodenTrain

Thanks all. Dd had a good nights rest and felt better this morning. Still need to check uniform fits for next term and buy more day to day clothes so that will be a challenge.
physically feeling really rough today so hoping I get some sleep tonight as I was awake most of the night so only managed a couple of hours sleep. The lack of sleep obviously doesn’t help the situation. Think might start dinner prep early so that’s one less thing to worry about.

We are back from the assessment. It was long! DS stopped engaging halfway through and curled up into ball. He wouldn’t speak to them alone. I thought he was very brave though, he was very honest and told them things I wasn’t aware of such as body checking, having a set calorie limit for each day (500 calories) and feeling a failure when he exceeds that limit but having a sense of achievement when he eats less. He told them his goal weight was 44kg.

He was 43.7kg when they weighed him today which I work out to be 72% wfh. He’s lost 3kg over the last three and a bit weeks. They might work out his wfh different though as they measured him a cm shorter than the GP. They did BP and pulse sitting and standing and that was all fine except they said he was a bit dehydrated. The gave him a glass of water but he didn’t drink it.

At the end they asked him what he hoped to get out the assessment, he said ‘nothing’ as he was only there because I told him to be. It’s clear he has no intention of following any re-feeding plan.

They didn’t give us any feedback. They said they will either phone us later today or early next week with the next steps. I hope it’s today. He will weigh even less next week.

@Cantfindthewordsddstruggling are you struggling to sleep due to the worry of it all? I can’t sleep either, I just feel so anxious.

@WoodenTrain my sleep has always not been the best and then I managed to get into a good routine just before the shit hit the fan with the eating disorder and SH. It’s now the worst it’s ever been!
DH also snores really loudly and I struggle to sleep with the noise of it even if he’s in the next room. After years of persuasion he’s agreed to go the GP to get referred for a sleep study.
So for me it’s a combination of the stress of it all and DH’s snoring. If I fall asleep in front of the tv even for 15 mins I really struggle to get any sleep for the night. Wish I could just check into a hotel for a night to escape. The local Travelodge is looking increasingly appealing although I’d be tempted to go somewhere with a pool just to relax.( not sure I’d even be able to)

Wooden did you hear back from them? I wonder if they're considering admission/section?

Ultimately this will happen if he doesn't follow the plan and start regaining the weight.

My dd also curled up in a ball and wouldn't engage in the initial assessment 😢 when we got home from the assessment she wouldn't get out of the car for hours either.

The appointment was a turning point though as I think dd realised it wasn't just me saying there's a problem, there was a whole team of people saying there was as well.

I would strongly advise blind weighing your Ds, especially as he has a fixed number in his head which he will have to go over by a lot.

My sleep is terrible at the best of times these days, I think part of that is peri menopause now though.

@Girliefriendlikespuppies re sleep. I wasn't sleeping at all anymore. I started HRT and sleep again like a baby. Made a huge difference. Just thought I'd mention it.

Yes, they called and said I needed to take him to hospital for further assessment as he was flagging as red on the MEED checklist. It wasn’t too bad as were sent straight to the children and young persons assessment ward where we were in a quiet bay with a bed rather than A&E which looked hellish! At midnight they said he was medically stable enough and we could go home.

While we were at the hospital the ED team dropped off meal plans and a prescription for forceval and thiamine. He’s starting on 1200 calories and they’ve said not to move up a plan until they check his bloods again. They’ve phoned twice today to check how is getting on, they are phoning again tomorrow and then coming out to see him Monday.

They didn’t give a diagnosis as they he is complex and they want to do an extended assessment.

He’s managed ok with the meal plan so far, it was sold to him as this will stop you losing weight you won’t gain on this but the priority is stop losing. He was ok with not losing more weight but has said he’s not doing a plan that’ll make him gain. But I guess we cross that bridge when we get to it.

He didn’t eat the full breakfast as he was supposed to have some milk and fruit juice with toast but he just had toast and water. Did manage to get him to have the juice with his mid morning snack. Lunch went well. He’s said he’s not having supper, he’s drawing a line at that. But then he later said he will have the milk he missed at breakfast for supper. It’s a start I guess

Can I ask how you physically do blind weighs? Do you ask your DC to step on backwards and not look or what?

So pleased you’re getting some support and a strategy @WoodenTrain Hang in there! You’re doing so well. It’s hard forcing them and there’s always a deal with them. Did he end up eating dinner in the end or just the bfast milk?

Glad you're getting some support @WoodenTrain. It sounds like a good start, hope things continue ok.

@NotDonna we do blind weights. So I keep my scales in the boot of my car, reversed against the garage so they can't be retrieved by dd. I have taped a big flap of card over the display. Dh and I do it together, we call her to the bathroom and say we'd like her to step on the scale, I then ask her to look at dh, and he tells me when she is looking at him, and then I lift the flap and look at the weight. Scales then go back in the car. We weight at different times of the day and different days to avoid her influencing it, and we don't give her any warning.

@WoodenTrain Really glad the ED appointment initiated some action. I hope your son continues to progress with the meal plan.

We've been struggling this week. DD somehow caught Covid a few days ago so after making a lot of progress recently calories-wise, we're back to under 1000 a day. Not as little as before but not nearly enough. She complains her throat is too sore to eat any more. I've suggested custard, ice cream, even fortisip but she says anything sweet makes her feel sick. She's had soup of course but even 3 times a day wouldn't be enough calories. Any other ideas..?

That’s really tricky @lyriccat regarding Covid, sorry to hear that. When I had Covid in February I remember everything tasted horrible. I’m not sure what to suggest, the only thing I found tolerable was sucking sour sweets!

DS did eat dinner in the end after first saying he couldn’t. He was then supposed to have toast or cereal with milk for supper but he ended up eating a biscuit and milk.
After he went to bed he text me to say he doesn’t think he can manage the meal plan anymore. I basically said it’s that or hospital and you hated the hospital (he said yesterday was the worst day of his life). He said no he’s fine as he is and he’s a long way off needing hospital.

Fingers crossed he continues with the plan tomorrow

@lyriccat agh that’s bloody annoying! Does gargling with aspirin help at all? Could you add cream and powdered milk to the soups and torn up bread? Or orzo - that rice shaped pasta and/or lentils? I’ve a good Oreo milkshake recipe that Everyman cinemas very kindly gave me! I’ll dig it out, incase that’s an option.
This booklet may have some ideas too…
‘Making the most of every bite’ Hoping she recovers quickly and get back on track!

My DD loves the Oreo milkshakes at our Everyman cinema (only reason we go is to fill her up) I emailed to ask for the recipe as I couldn’t replicate it at home. They very kindly sent me this.
Oreo milkshake Recipe.
4x Oreos
4x vanilla ice cream scoops
1 teaspoon of Horlicks
4x ice cubes
175ML of milk

I'd make it very clear when they ring how much he has complied with the plan.

Wooden have they mentioned meds at all? Olanzipine can be helpful to get them eating initially as this is when the ED voice will be really shouting at him.

Has he mentioned a voice? My dd had a very definite voice (she said it was male) telling her not to eat, that I was trying to kill her/make her fat etc.

It's sometimes useful for them to know that's fairly normal in anorexia and to learn to try and ignore it.

Lyriccat my dd got covid early on and I wouldn't let her change the plan at all. I just made sure she had plenty of painkillers and softer food in the first couple of days. The cynic in me says your dd is trying it on and using it as an excuse. I used to say to dd that in theory she needs to increase her plan to make up for the extra calories her body needs to recover.

@WoodenTrain its scary how much our dc convince themselves that things are not that serious and that it’s “not that bad” and they are not at risk of hospitalisation. Due to a lack of resources in the health system just because they are not admitted doesn’t mean that they are medically stable. DD only just managed to dodge an admission at the end of last year.

@Girliefriendlikespuppies they’ve not mentioned medication but he is supposed to be on sertraline but he’s stopped taking it. He only actually tried three doses but he said it made him feel really nauseous.

He was on fluoxetine for low mood and anxiety for quite a long time, a couple of years I think. Around September/October time the fluoxetine was increased as his mood become lower and he was more withdrawn but it seemed to make things worse as it was after the dose increase that he started SH. The decision was then made to taper off the fluoxetine and try sertraline instead. Fluoxetine stopped early January, but then DS decided he didn’t want medication and he’d just turned 16 so they said it’s his choice to make. In March he changed his mind and so he was prescribed the sertraline but it made him feel nauseous. I’ve not pushed it as feeling nauseous is not conducive to eating and I rather he do that. We do have a medication review coming up in May

@NotDonna that Oreo milkshake sounds delicious. The Horlicks must be the secret ingredient

@Cantfindthewordsddstruggling Yes, I was surprised he said he thought he was a long way off hospitalisation as no one actually said he was well. He had low BP and pulse and some mildly deranged bloods. It was just decided he was stable enough to start re-feeding at home as long as he has frequent blood tests done and we don’t move up a meal plan until each blood test comes back ok. That’s really not the same as being well 🤦🏻‍♀️

@NotDonna That booklet's very helpful thank you.
I do feel DD is trying it on a bit with the eating. She wouldn't try cereal as I suggested, because of her throat, but later on had a bag of low-calorie crisps which wouldn't have been any softer! She's still in bed now so I'm not sure if breakfast is on the table today. I'll suggest she tries a milkshake later. Hopefully she can have at least more than yesterday.

@WoodenTrain It’s a never ending balancing act isn’t it.

@lyriccat There is no logic with ANA. DD refuses to eat porridge for breakfast with a teaspoon of honey due to the calories in the honey(she sees it as an unnecessary extra ) yet will eat the higher calorie alternative because that contains no extras.

He’s not eaten or drank anything so far today. I felt really hopeful yesterday as he did really well with minimal pushback. He’s just lying in bed refusing to engage. He text me and me told me he didn’t care about the plan he’s not doing it. His brother just went up to try and encourage him to come and have lunch but he just told him to F off.

So sorry I haven’t been back to this thread, I haven’t been able to face reading!

Dd has gone from 78% WFH to 90% with home refeeding. However, when she got to 90% she panicked, refused all food for 2 days, now eating less than half her meal plan.

Camhs have told her that hospital is inevitable if she keeps losing weight. But have said privately to us that the unit won’t admit unless it’s medically necessary, they won’t admit her to prevent deterioration, so we might have to watch her get to the point she was at before (she couldn’t climb stairs without help) before seeing her admitted anyway.

I don’t want her admitted, but I want to see her deteriorate even less. Do we really have to watch her decline and become critically ill, then face a long admission rather than a shorter one now? This seems bonkers but I guess they have plenty of critically ill young people needing the bed?