Teen Eating Issues/Disorders Support Thread 2

[myrtleWilson]

Our first thread is almost full. Here is our second - a place to seek and share advice, to lament and scream with rage and sadness, to celebrate each other's successes as we navigate the choppy waters of supporting our children with eating disorders.

All are very welcome, whether you're at the start of this journey or a more seasoned traveller.

I'll link this thread to the first one and then I thought it may be helpful if on joining this one we did a quick precis of our current situation.

www.mumsnet.com/Talk/eating_disorders/4016379-teen-eating-issues-support-thread?msgid=104736115

Crossed posts @SoTiredNeedHoliday - a persistent inability to recognise that there's a problem is one of the keystones of a diagnosis. We have this with DD - everyone else is much thinner than her, apparently, so why is she the only one being force fed. It does make it such a battle.

I know what you mean about seeming disordered. It's such a huge and all-consuming illness that it's hard to let go of the details and accept the bigger picture.

DD1 had clinic today. 2kg weight gain, which is fantastic. That puts her up to 73.62% WFH from 70.01%. Obs generally ok, but heart rate far too high at 121 sitting/135 standing. After a lot of resistance from DD1, we're changing her meds from olanzapine to respiridone. It's not as sedating and tablets start at 500mcg so we can titrate the dose more easily to suit DD1.

Perhaps the more telling thing was that as we were congratulating DD1 for her hard work, she was starting to ask lots of pointed questions about the timeline for school return and whether she would have her wheelchair, etc. The psychiatrist picked up that DD1 is really worried about returning to school, so there will be lots of work to do with her and school to make it a successful return. She's said 80% phrased return and 85% full return with no PE.

Thats brilliant Lougle - what an achievement. Alongside congratulating DD, give yourself a massive pat on the back too - you deserve it.
Does the respiridone have any appetite impacts?

Sotired - it is exhausting and quite claustrophobic I think. Whilst in some ways being in lockdown has had its benefits, the inability to get a significant change of scenery does have an impact. Giving in to the emotions can help - a cathartic cry can do wonders I think. Is there anything that could make other aspects of non ED life easier? So, when DD wasn't eating with us, DH and I would share cooking duties whilst the other could chill with DD & watch tv/movie. The one on kitchen duty got time away from the ED and could potter whilst the one with DD could relax in a 'happier' moment - all DD's food activity done for the day. For someone else that may not have worked and the answer may have been to have a freezer full of nice ready meals, or it may be to move to supermarket delivery rather than shop or vice versa? I think accepting that in the short term you're not able to reduce the stress of the ED, but thinking about what you could do (or not do) in non ED life may be helpful?

Back from session with CAMHS/Adults - felt very much like we're in safe hands with our new Adults lead. We're going to have weekly sessions over the next month and then review where we think things are going - have we got the tools we need to manage by ourselves for a bit or do we need ongoing support.

@myrtleWilson I'm so glad you're feeling like they have you. Re. Respiridone, the psych seemed to think it would work as well without increasing sedation. But we'll review after 2 days.

Amazing @lougle hope this is the start fo some consistent weight gain for your DD.
@myrtleWilson glad the adult team seems to be good.
@SoTiredNeedHoliday sorry it is so tough for you. I found it totally relentless at the start and it's only a little better now. I am sole cook, meal planner, snack monitor etc for my DD and she trusts no one else incl DH so it feels v claustrophobic. I attend an on line support group (been suspended for Mar but back next Fri) with Beat which has been really helpful. My mum sat with DD whilst I had that 90 mind a week whilst she was on home school. Other than that o tru to see a friend for a short walk at the weekend when DH can have DD for an hour. But I have to say it's full on even with her at school as she is home for lunch (1 hour 20) and with me til bed.

@SoTiredNeedHoliday I also meant to say the denial thing is very common. I used to get sucked into long convos about the illness or DDs perceived lack of it or my desire or 'make her fat and unfit'. In the end I decided there is no point to the conversation. So I just said things like I can see how hard this is for you but you just have to eat. Or we are going to have to agree to differ and I am in charge and we are not having this convo again etc etc. Slowly as she has gained weight she no longer says this things (or more rarely) she still wont really admit to having AN I dont think the word has ever passed her lips. Ultimately it doesnt matter if they think they are ill or not the treatment is the same. But its v hard. My mantra was validate, shut it down, move on.... often punctuated by rage, despair and violence by DD...

@SoTiredNeedHoliday I find it really helpful to go for a walk with a friend. We literally just take an hour to stride around the village.

On an interesting note, I saw a pair of swans mate yesterday. Our village has swans and every year they raise cygnets. It's very sweet because everyone stops to let them cross the road between ponds. Anyway, we were crossing the bridge and suddenly they were doing their little mating dance. Lady swan swam away triumphantly wagging her tail feathers

Hi everyone

Great weight gain lougle, I hope the respiridone works as well as the olanzipine for your dd.

Valley I think the fb group talk about 'state not weight' as in keep gaining weight until most of the AN thinking has gone.

Lots my dd is at about 93% wfh and I feel like we're going to be stuck here for ages 😕 dd is still miles of being able to eat normally. We will def have to swap tips for the caravan holiday, I'm thinking I'll have to decanter all the double cream we use into the milk cartons!!

Ineed it is so knackering, it's all consuming and emotionally battering. I think try and find some time for self care even if it's just a bath or a meet up with a friend. My D has recently acknowledged she does have an ED but it's made zero difference in her approach to it ☹️

Dd is in a weird mood tonight and has decided to sort the kitchen out, I'm too knackered to argue with her but she's gone through all the cupboards and put things in a slightly more orderly way. Hope this isn't a new OCD thing 😫

Have any of you gained weight while refeeding? I've not got any scales but I know I've put on weight, I put my uniform on Ystd for the first time in a while and it felt so tight 😕

It's all the puddings and high calorie dinners.

Yup,about half a stone tbh I don’t really care....

Girliefriendlikespuppies definitely I eat with her so at my age eating like a teenager it's bound to happen..... All in a very good cause though so I am not fighting it. Actually, we're all eating more as we continually try and encourage DD

Yeah I'm not bothered either and happy to eat lots to encourage dd, it's just annoying as I'm going to have to buy some new clothes!! I reckon about half a stone as well lots and I was about half stone heavier than I should have been anyway 😬

Camhs morning here, just waiting for dds zoom cbt session to start...

Me too, half a stone. I eat with her and have to do so with gusto to encourage her - plus adding the full fat yoghurt to soup, having it with a roll with cheese etc. I seem to eat as much as her, snack more and drink more wine. Somehow DD's issues have flicked a switch in my head and I began to see food as my new best friend and something to be celebrated unequivocally.

This week I'm trying to eat less during the day as that's the only time I can cut back without it being visible. I do so wish I could put the weight on for her - can you imagine being prescribed cinnamon buns?

Mmmm cinnamon buns 😋 I know what you mean valley. I've always been someone who has eaten a lot anyway but up until I turned 35yo ish i never really gained weight. I pointed out to dd that the body is really quite good at maintaining a healthy weight (when you get there) especially when you're young. There seems to be an assumption in dd that she'll eat a couple of extra chocolate biscuits and suddenly balloon in weight

Cbt seemed to go well, I'm pleased dd is getting this as it definitely seems to be helping her reassess her thought processes.

Now waiting for the psychiatrist zoom call which I'll take as dd has gone off to school.

Have also had it confirmed that dds ASC assessments will take place the week after the Easter hols - eek!!

@lougle that weight gain is incredible!! Long may it continue....
We had DS on respiridone for a short time when he was ill. It was probably a teeny dose as he was v little but it certainly helped to calm him down and pretty sure it helped with appetite too. Good luck with the swap. ..
@sotired i find just trying to snatch 10 mins of yoga ( i use youtube "breakfast / bedtime yoga with Adrienne" ) good for an instant bit of destress. Think the deep breathing part of it really calms the system down if you're super stressed. Maybe helps sleep a little bit too. @@#

So because nobody is available from DDs core team all this week ( 'I'm fuming) we're doing ob's with a SW this pm. Really coukd've done with some support from her KW to back me up with planning school reintegration. DD resistant to increasing time in school as her anxiety about lots of things there- is understandably really strong. As it stands only managing until 12.05pm then home all day with me. Trued to tackle idea of lunch there but she's v shut down about it.

@Girliefriendlikespuppies glad cbt helping with thoughts. Guess your DD is that much older..? Wish there was some therapy accessible to DD to help address them. Considering a psych for her as CAMHS tends to write her off for indiv therapy of any kind.
Hope the ASC screening is helpful. Have you always had an inkling that DD is on the spectrum?

Roo dd is 15yo although I would say emotionally more at about 13yo level, she's always been young for her age which is goes with ASC.

Have considered autism since she was around 10yo, she was diagnosed with sensory processing issues around 7yo and that explained a lot of her issues. However as she got older I was aware that it didn't really explain why she had so many friendship difficulties and other problems.

It's taken 5 years of knocking on doors, asking for assessments, paying for private assessments and generally keeping on it to get to this point!! If she doesn't get a diagnosis at the end I will scream 😱 although I just spoke to the ED psychiatrist and she told me not to worry Dd definitely ticked all the ASC boxes!!

So psychiatrist appointment went okay, she said dd is now almost 94% wfh and was happy with her progress. We talked about the meltdown in town about eating out and she said that's something we need to practice over the next couple of weeks...

What's everyone doing about Easter? Are you going to buy an Easter Egg in the hope they'll eat it?!

Hi everyone.just caught up with thread and brains funked out all I wanted to reply to...

Lil zoo has had bad IBS pain since yesterday,bloated and miserable.she loathes feeling full and bloating sensation freaks her out,plus keeps looking at her tummy protruding out
She shocked me by asking for a sandwich as we passed co op on way to school yesterday.she chose a BLT on fibre rich bread(only one with no dairy.i did wonder if the bread might set off IBS,esp whilst she insists on having hummus,lots veg and pitta in the evening)
When I picked her up we strolled around local nature reserve we have to cross to get home as was nice out in the sunshine.was a slow walk and longest conversation we have had in ages.she said ate half sandwich,then put rest in bin as was full (checking I wasn't mad,I was proud she tried tbh)
Today we filled in RCADs etc for ED assessment tom.she furtively his hers,asking lots questions about what questions ment.i did have a look once she had gone as she is very very private/won't talk feelings etc.i had to hazard a guess a lot my answers based on body language etc.upset me how her answers reflect a sad empty girl who worries so much what others think of heralthough she's ok weight wise at mo,her mind is definitely not ok and it's made me feel pretty crappy I've not been able to "get in" to comfort her

Easter? God I don’t know. It’s a double whammy here because DDs birthday is in the week as well. She has designed a fabulous cake that she wants me to bake and decorate - but I’ll eat my hat if she has more than a tiny slice. All I kept thinking when she was giving me instructions was how I was going to be spending my time making this bloody cake...for the neighbours.

I suppose I will buy an egg. And it will sit on the cupboard alongside the Advent Calendar I’m not allowed to throw away. Mocking me.

@exLtEveDallas

Terrible eve here. Football club was ‘awful’. There was no teacher just a footballl club coach and the boys all mucked around and she did ‘nothing’.... so I had a total dinner refusal. That hasn’t happened for months, in fact she has never refused dinner before. Breakfast, snacks but not dinner.....
I finally got it in her at 7.30pm and now she is massively behind so I feel a smoothie battle coming on too...
She cannot take any changes to her exercise plan or sessions she considers not hard enough.
It is times like this that I release how far from being well she is. When everything goes to plan it is easy to think I have this cracked. And then something completely normal happens like teenage boys mucking around and the world ends and the ED is as strong as it was in the beginning.
Oh well I need to keep on fighting I guess. It’s such a long road....
I bought Easter eggs for all mine today. Choc orange one for DD. She won’t eat it. But if I don’t get her one it’s like saying it’s ok to not have one... I think....god knows if that’s the right decision. She didn’t eat her advent cal or choc money at Xmas. So I am not sure this will fare much better.
@Stilllivinginazoo my DDs answers to those, questionnaires broke my heart tbh...

Oh @Lottsbiffandsmudge what a horrible evening. The exercise compulsion must be so hard to manage. Do you think she needs to increase her olanzapine, or perhaps switch if the compulsion is still so strong? It must be exhausting to feel that exercise needs to be punishing.

It's DD1's first full day of Rispiridone. She's done well, I think. She started on 250mcg last night and 250mcg this morning, but said she didn't sleep too well. She's stopped her melatonin to give a break as it's not working anyway. She's stayed awake all day and she ate dinner well Vs the last few days where she's wanted to go to bed instead of eating dinner.

So tonight I'm increasing the dose to 500mcg at night and 250mcg morning. The Psychiatrist is phoning tomorrow for review.

We had our second I2I visit today. The support worker started a 'zonal mood chart' identifying feelings and behaviours that DD1 displays when she is feeling 'red' (angry, crisis) 'amber' (I'm happy to be near you but don't want you to bug me), 'green' (happy, calm) and 'blue' (sad). They'll work through identifying the behaviours that she displays and feelings she feels, then work out some coping strategies.

Lots not sure if this helps but I would see the fact that your dd didn't do the exercise she wanted, kicked off but you still got her to eat as a massive achievement!!

What was the rationale the ED team gave for not stopping all her exercise? Was it because a deal was made in terms of how much she'd eat vs how much exercise she could do? It does seem a risky strategy if so. Do you think your dd genuinely does enjoy the exercise? I think (although she would never admit it in a million years) my dd was relieved on some level that she wasn't allowed to do all the work outs and running anymore.

I have bought dd an Easter egg as well, am hoping she will have it for 'pudding' one night. We also had no success with the advent calendar or Christmas chocs 😕 so won't hold my breath.

Thanks both. Just laid with her for an hour trying to get her to sleep- not had to do that for at least a month.
She is such a catastrophiser. All she thinks about is the negative. So this club she has done for 3 weeks as a stop gap until her real clubs come back next week and it was supposed to ease her back in to football and bring some enjoyment back to her sport. And the first 2 weeks were great and she loved it. One difficult week and all that is forgotten, she is going to be unfit, she can’t go on, she doesn’t want to be here....all the stuff we had when she was at her worst.
No idea why we weren’t advised to stop all her exercise. In some ways I wish we had. It would have been utter hell but it may have been easier in the long run. But hey we are where we are. I can’t go back so have to move forwards.
I just said to her we can’t alter that session, it’s gone, we have to move on and look forward to the next thing. Her reply was- there is nothing to look forward to.... ouch...
Have thought about upping meds. Will have to see what her KW thinks next week.
The saddest thing is that her disappointment tonight is not really about the sport she loves and not being able to play properly because of some idiotic lads but about not burning enough calories/ having an intense enough work out....which tells me all I need to know about how ill she still is.

lottswhat a rubbish evening you have had.my D's a catastrophe thinker.its exhausting
Dallas
Louglethe chart sounds really helpful.is she as hungry on these meds as the other ones?
Girlie I got lil zoo an egg with intention using it as pudding/snack.she doesn't really eat much chocolate spot may end up being broken into bits and made into a cake/cookie etc.we shall see.it would be weirder to not get her one and the others have one..

We have ED assessment today.another day off school yesterday grey,gut pain,cold,fast pulse and feeling sick.im semi hoping she is like that at physical assessment today.teams meet this morning,physical pm.shes very stressed over the teams as hates not knowing what to expect and I'm not certain of what's to come.
Then once all that's over its parents evening online....