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...

Scribbly I'm not sure we do family therapy in the same way you do, all we've had is fortnightly zoom sessions with a Camhs bloke. Dd won't speak to him at all if I'm in the room so I tend to leave them to it. I suspect she moans a lot about how 'controlling' I am 🙄

I reckon the Camhs team are really used to hearing it all so hopefully take it with a pinch of salt.

If it's any consolation, DD1 told the dietician that she takes Jaffa cakes to school, sometimes has cake for breakfast, that I don't let her have a glass of milk, that she would eat 'loads' but Mum stops her....all lies. I felt absolutely ridiculous, saying 'that's not true... You're not allowed Jaffa cakes at school.... No..... No I don't....'

I'm not sure who the dietician believed!!

Ha Lougle that is exactly the sort of thing my dd would say, she'd say 'I'd eat loads if my mum left me alone' 🙄 yeah right.

Had an okay ish day, dd was very sneaky around snacks and lunch, think she was somehow putting food up her sleeves or into pockets 😕 little bugger. She has just eaten a decent dinner and pudding though.

scr1bbly - our family therapy was always after weekly observations so DD's mood/input was shaped by what had happened at weigh in and much postural drop checks were needed. But generally, DD spoke more over time. She 'presents' as much more genial, younger and compliant in those meetings - she's deferring to authority figures.

I know I shouldn't say it but I do doff my cap to the ingenuity of these young folk - the stories they create, the elaborate ruses and subterfuge - in another context I'd be laughing.

Quick question - the airflow mattress came today and won't work because it is a single and DDs bed is a double divan (the mattress particularly doesn't work on divans). They're going to have a rethink but posited having a hospital bed ordered but this seems excessive and would turn DD's room from her 'own space' to something clinical.

Does anyone have any bright ideas as to how we could fashion an alternative solution - her pain is in her back, her hips feel like they're ripping when she rolls over move/and the inside of her knees hurt. I was wondering about those pregnancy cushions in a v-shape for her knees but can't think what to do about back/hips. I could wrap her in bubble wrap every night but I think that would induce sweat related weight loss which whilst may be on DD's wish list, most definitely isn't on mine....

Myrtle pressure relieving equipment is somewhat my forte, I'm not sure your dd would find an air mattress that comfortable tbh, has she tried one before? What mattress has she got at the moment? Pm me if you'd rather.

Could you try a memory foam topper? Is she a side sleeper or back/front sleeper?

DD1 wouldn't eat dinner at all today. She started with 'I've got stuff in my mind' and 'i watched something about murder....' it turns out that she watched an animated story episode on YouTube. So I've taken her tablet and gone through YouTube telling it not to recommend so many channels. I've also told her that from now on she isn't having electronics in her bedroom. She was outraged. Yelling, screaming, hitting things, saying we hate her, etc.

Then she said it wasn't about that at all, and she didn't eat because of all the different textures.

Then it wasn't really about that, it was all the coronavirus stuff.

It's like she'll say anything... perhaps it's a combination of it all.

Lougle I've had 'it's the coronavirus stuff' as a reason for not eating too

Dd was doing brilliantly the last couple of days - or so I thought, until dh saw her exercising in her bedroom as he drove up the road

Sigh

Lougle they literally will say anything to get out of eating, if they think one reason isn't strong enough they'll keep going until they find something that works. I just ignore all attempts at conversation or excuses now and use the broken record technique 'you need to eat this food now/this is exactly the right amount of food/we can discuss xyz after you've eaten your food'

I found out tonight that there's been an incident with dd and my mum, dd kicked out her leg towards her in frustration (they were both sat on the sofa) and caught my mums phone which landed on the floor. My mum was understandably upset and I think dd shocked herself, it's like she really is still a toddler sometimes. Dd has apologised and I think it's all okay now but I do worry that dd has such crap emotional regulation.

Yy that is exactly it, the crap emotional regulation. It makes them so bloody unreasonable.

Dh has had an op yesterday so I ended up doing 4 car journeys alongside trying to pull off some semblance of order single handedly and running up and downstairs for Dh. Dealing with AN on top is stretching my limits.

Another question re starting to eat. The meal support gets her to start and then distracts. Dd just point blank refuses with us to even start if mind set. How do you get them to start even a nibble?

Yesterday not good. Dd went shopping and was supposed to come back for lunch. She brought back a poke bowl which I let her have thinking she could load up later. She didn’t play ball and refused tea as it had cream in it. I suggested having meds before but she refused. Got some spaghetti hoops into her( I know I pandered, blame it on panic and pre Christmas frenzy) but she refused the pudding.

Re Christmas, what are your plans? Don’t really want full blown melt down so are you going to let things go over the actual Christmas dinner or insist on gravy etc?

We’re kind of hanging on in there. She has drastically reduced but not plummeted to the ridiculous levels of before. I think she’s trying bless her but she must be losing a lot of weight. I’m going to chase GP today, suspect CAMHs have forgot to request the weekly obs which they suggested as have heard nothing.Don’t want to leave it too long. Aside from wanting to keep a check on things it also might help her see that she is risking undoing all the good she has done.

It’s such a fast moving bloody rollercoaster.

Sorry that was me Scribbly🙄

Hope you get the bed sorted Myrtle.

I'm going to try and keep the Christmas Day routine pretty much the same as every other day, I'm not expecting too much sadly 😕

Dd has started dashing off to the loo after breakfast, I don't think she's being sick but possibly holding her drink in her mouth to spit it out 🙁

It feels like dd is getting worse rather than better tbh, I think being off school doesn't help and it doesn't look like she'll be going back for a while thanks to covid.

The first lockdown was what made dd's initial secret diet (which she didn't need anyway as a fit and active size 8) spiral into ED, Girliefriend Being off school and having no index for what was 'normal' by observing her friends meant that she just didn't see how far she was going until it was too late

We're tier 2 at the moment, and in the bottom 5 of LAs for Covid stats, so she is able to have friends round in the garden but I'm dreading the inevitable next lockdown

The dietician phoned today. She's offered to weigh DD1 on Wednesday to see if she's lost weight since November. She pointed out that there's not masses she can do because she can't make DD1 eat.

I agreed with the dietician but also pointed out that although she's 5'4", her sisters (20 months and 3.4 years younger than her) are almost the same height, so DD1 is too short for our family. DH is 5'10" and I'm 5'8". DD2 is on the 75th centile for height and DD3 is almost 91st centile for height, so it should ring alarm bells that DD1 is only 50th centile. Also, her feet haven't grown in a few years. She's a size 3 foot size. DD2 (13) is 5½ pushing 6, and DD3 (11) is size 4.

The dietician did at least sound puzzled when she asked who DD1 was under and I said 'no-one'. I explained that the Consultant discharged as he didn't want to deal with ASD assessment (despite having a special interest in ASD). CAMHS referred to Psicon (ASD assessment centre) and discharged. Paeds in the summer referred to dietician and discharged.

The dietician was going to refer back to DD1's old paediatrician, but I suggested 'fresh eyes' might be wise, as her paediatrician wasn't interested in her. So she's going to email all the paediatricians and see who bites

She said that they may need to admit her for assessment/monitoring/tube feeding if she's refusing to eat. But she has no power to do anything.

She did ask about periods and was pleased to hear that after a break of 2-3 months, DD1 had a period this month.

I don't think DD1 will have dropped her weight drastically - she's not exercising and she's already so light there can't be masses to lose. But my point is that she shouldn't be the weight she is in the first place.

I said to DH that I'm considering not pushing DD1 on food this week, so I can see what she will eat without encouragement/pressure from us. That way I'll be able to give an accurate picture to the dietician.

Am glad that you've got a professional who appears to be on your side now lougle - hope she's a tenacious sort.

girlie that does sound like your DD is getting worse and I think you're probably right re the holding the drink in to spit it out... Thanks for offer re mattresses etc - I'll PM you!

Scr1bbly - sounds like you're having a tough couple of days - hanging in there is pretty much all we can do isn't it but not easy.

theyseeher I hope if we do go into another lockdown it doesn't mean your DD regresses.. Not school related but we now map out the entire day hour by hour from 8am to 10pm so DD has clear sight of what is happening when - works as intensive distraction approach.

DD struggling with re-feeding at the moment - we're on 1500 per day but the anorexia is very loud and is inducing self harm. The paeds ward have a bed for her tonight and we're juggling what to do - in all honesty her home environment is better for her - but if the anorexia is so strong we can't keep her safe here... 2020 has been a hell of a year

@myrtleWilson that's a difficult decision. How would she feel about Christmas in hospital? Would it work to even wait until Boxing Day?

Camhs called back and said there is a bed for her for the next few days as and when/if she needs it. But we've got through dinner tonight - tense, tough but she ate some and had fortisip for the rest. The thought of her waking up on Christmas Day on a hospital ward was really sad - but we've avoided that. I think she'd be amenable to Boxing Day if necessary. The problem is with the re-feeding at 1500 we're reaching a point of calorific intake she's not had for many many months so each meal the anorexia is abusing her, she's so so scared of each meal. But we've got through the hardest one now so am beyond proud of her..

I'm very limited in experience on this, but is there any way of splitting the calories into, say, 6, 250 kcal snacks? Or would that be even worse?

I think you've made the right call re. Christmas Day. No matter how many calories she skipped, it wouldn't change anything in the long run for one day. But she'd remember waking up in hospital on Christmas Day forever.

We've had a really tough day 😕 caught dd holding yogurt in her mouth to spit out, also found snacks she's been ditching 😓 She has swung between angry and anxious all day.

I had bought some treat foods that in previous years dd has loved, I'm putting some in her stocking but decided to not bother with some as well. It annoys me as feels like a win for the ED but I don't want to create more stress for tomorrow.

This ED makes me so fucking angry, it's not fair.

Thinking of you all tomorrow and hope the ED voices are quiet and the calorie intakes are good for all the dds!!

Merry Christmas to you all. I hope your day is peaceful.

One thing I thought was really interesting on the documentary I watched was that one of the doctors said they weren't aiming for full recovery for one of their patients, because she didn't want it/wasn't ready. They were just aiming for a better quality of life.

Today, can you give them a day off from worrying about food. If they don't eat today, it won't make any difference in the long term. It might just give you all a break.

Well we've got through the day but it's not been great food wise for dd, refusing snacks and refused milk and biscuits this evening which is normally a time she'll always eat 😕

She also held food in her mouth for ages and then spat it out in front of me.

Feels like I'm right back to square one tbh.

Aside from food we've had an okay day though!

How's everyone else doing?

Lougle Eva Musby talks about the dangers of waiting for a patient to be motivated to get better, the problem is it might never happen 🙁

I decided to let it go. Felt none of us needed a day of stress.

Dd had 1 x piece of toast and a sparse Christmas dinner plate she served herself, no gravy obviously. Refused all snacks and puddings.

About to try and get a snack into her.

Hey, Merry Christmas this awesome band of parents - you're all superheroes...

We're getting through each day by the skin of our teeth. We had to ring CAMHS emergency line today and that kept DD out of hospital as she was refusing a meal/fortisip - we were all so upset about taking her to hospital with her presents still under the tree. Suspect it may well happen tomorrow, but to be honest am glad we got through Christmas Day at home - that really is a memory to cherish in years to come.