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

@lougle we had good results with olanzapine. And quite quickly too.
Good meeting with ED team KW today (me only DD no longer attends). She has advised that we tackle the extra exercise esp as it is happening at school and she is concerned that if the ED gets away with it too long it will quickly escalate. So this is the standing, running up stairs multiple times as she has ‘forgotten styff’ walking others to their classrooms before her own, going the long way round etc.
So I have to put my big girl pants on. DH not fully on board and i don’t want to tie it up with the weigh in today (we do it blind) so will prob tackle tomorrow as she will be in a good mood about football club.
KW has likened us trying to break an exercise compulsion with keeping permitted exercise gong to an alcoholic trying to give up booze whilst allowed 4 units a day.....
I get that but they were the ones who didn’t advise we went cold turkey on it when she was first diagnosed....
Anyway I am with you @Valleyofthedollymix on having to have a difficult conversation and then stick to my guns.... it’s v tough every time. But I recognise it needs doing.....

Oh good luck, @Lottsbiffandsmudge!

I'm willing to try the olanzapine. She starts with a half-dose tonight (1.25mg), then a half-dose twice daily, or if it's too tiring for her, a full dose at night.

Thanks @lougle my DD started on 2.5mg olanzapine in eve and first day or two it made her v sleepy and groggy in the morning. It was the first good nights sleep a]she had had in ages. The day time grogginess wore off quite quickly but her sleep is still loads better.
Soon after we upped it to 5mg as the beneficial effects were waning. She has it all at night to avoid the groggy day but we split it 2.5mg and 6pm with dinner and 2.5mg at 8pm. This helps make for a more chilled evening. I am not sure we could have got through without it...

Did her appetite increase?

DD1 was telling the psychiatrist and nurse that she didn't want to survive and why couldn't they just give up on her.

That's really sad your dd was saying that Lougle 😕 I hope the olanzapine helps.

Lots that is exactly what it's like for your dd, it's mind boggling they didn't completely clamp down on the exercise to start with.

Valley I reckon even if you did hide calories you wouldn't see a massive jump in weight gain, one of the things I've learnt since dd became ill is just how much you have to eat to gain weight when you're a teen!! Dd has hidden calories in everything and is maintaining, without them she would definitely be loosing weight week on week.

I survived my first day back at work, wasn't really feeling the love for it but it was fine.

I'm glad your first day back wasn't terrible, girlie.

We've had a slight breakthrough with school. They sent a draft EHCP review document through that hadn't been updated since DD1's struggles in the summer. It was just really generic - no mention of what she was struggling with.

On Sunday I emailed the school a long email saying that I was really uncomfortable with a document that was so far adrift from DD1's perception and that she has been telling us she's struggling for so long, it was about time they listened. I got a 'we can talk on x date' reply.

Today, the teacher phoned to cancel our review telephone call tomorrow, because they've decided they need to really sit around as a whole team and work out what DD1 needs and how to achieve it.

I told her that I was really grateful, but to hang fire because I doubt she'll be back this academic year and her needs will probably change 100 times between now and her return.

It feels like they're finally realising that her complex needs are complex everywhere!

lougle I really hope the olanzapine works for DD and am pleased that belatedly the school are recognising her needs. You are an absolute hero, you really are.

girlie yay for surviving first day back. I've taken this week off work - I realised I was burning out and not doing anyone any favours. Two days of leave done and I've not once opened my emails - GO ME!

lotts I hope your conversation tomorrow goes as well as it can do -keeping everything crossed for you

valley I know secret calories work for some but they wouldn't have worked for us. What is DD eating/not eating - can we help at all?

The guilt about eating is kicking in hard here, I suppose the "good take" from that is that the anorexia feels very much under the cosh... DD had a bad evening but still managed to eat supper of a mini apple crumble and custard so am hoping she's trusting us more than the illness. We've only got a few weeks of CAMHS left now so will be pushing about the "watch outs" for this stage of the illness...

Sending love and hope to anyone lurking & reading

Lotts good luck with the talk today
Lougle schools are either great or crap IME with EHCPs.hope they finally pull it together for you.lil zoo sister has expression and hearing your child say they these things is heartbreaking.big hugs
Girlie glad day one at work went ok for you

She ate breakfast! Started olanzapine last night. I had to wash and dress her this morning - zonked. She moaned about breakfast and asked for a brownie, but when I said that she needed a proper breakfast, she accepted a bowl of Coco-Pops. I added 25ml double cream to the milk.

Hey all,

@Lougle sounds like the relevant people are ( finally..) being responsive. Hope DDs first dose of olanzapine went ok. May just make her more sedated - our DD was pretty knockes out on 2.5mg split dose (but was v low weight initially) - has improved with weight gain, now on maintenance 1.25mg each morn, and that's manageable. Def think it helps stimulate appetite which cld really help your DD.
@lotts the exercise thing has def been one of the most difficult aspects of DDs illness to manage. Everythjng you say rings true - extra steps at every opportunity- DD didn't sit down to eat for over a year. An OT may be able to help with tackling that - is DD seeing one through CAMHS at all? Good luck broaching it today.

@myrtleWilson keep bashing it. Sounds like ED is squirming. Hope today is positive. @@myrtleWilson

Off to DDs discharge CPA meeting this morn. Final discharge just been set for Friday.......nervous and relieved. It's been a long haul here. As long as we can up the support for her at school - her nemesis - we have a fighting chance.

@Lougle breakast...result!!! Well done.

@Roolet12 good luck!

Aaaargh. The psych blurted out her weight which she has chosen not to be told over her 4 month stay. It's increased by 9kg from 26.1kg to 35.3kg. Couldn't quite believe it. We'll find out the impact later. If this sets us back...

@Roolet12 that's unbelievable! You must be angry?

What WFH is your DD now? That sounds like a very low weight, still, but DD1 is 5'5" so maybe that's why it seems so low to me.

Well, DD1 was exhausted today, but after having Coco-pops for breakfast, she came to be at 10 am, saying 'I'm starving, can I have 2 brownies and a packet of pom bears for snack?'

She tried to use the Xbox earlier, but said her eyes weren't working. I wonder if she was feeling woozy from the olanzapine this morning. I've come back from having my Covid vaccination and DH says she's fast asleep. I'm not going to wake her. She can have something to eat later.

@Lougle yes ....I was pretty speechless but tried not to appear phased by it as didn't want DD to see my reaction. I had to leave her at the unit straight afterwards but will be speaking to nursing team to see if that was planned - I can't believe it would have been, esp after discussions I've had with her primary nurse about how we (and CAMHS) might potentially deal with it after discharge! I can only assume he ( majorly) screwed up and forgot she was being weighed blind. The only thing in our favour is her poor grasp of numbers ( suspected dyscalculia) so praying she can't remember her admission weight. If she does... I'll find out this eve..
She is now 93% wfh up from 69% in Nov. She's only about 1.43m.....

Brilliant your DD asked for brownies!! I used to have a little business making them before DD became ill. Still waiting for her to be able to have one again...
Expect it will be the olanz zonking her. Mine used to go out like a light in the car when first on it...zzzz.

@Roolet12 hope it doesn't cause a setback, but on the other hand 9kg in 4 months is pretty much ideal, isn't it (we were told that .5kg a week is vg)?

@myrtleWilson that's so sweet of you to offer wisdom. She's really into healthy food and I've now discovered that it's hard to put on weight if you eat healthily with home cooked food, who knew? Even when I'm matching her plus drinking alcohol I'm not putting much weight on either and I'm a menopausal woman. She has cereal, fruit and toast x 2 for breakfast, a muesli bar mid morning, whatever there is at school for lunch and I'm guessing no pudding (she'd have a yoghurt at home), an apple with peanut butter on getting home, a reasonable portion of something cooked by me for supper and then an English muffin with milk at bedtime.

What's missing is butter on the toast/muffin (she has a thin layer peanut butter or cream cheese) and a dessert at school. But I can't think where else I can shove in the calories. She won't have smoothies but I guess I could insist she have one as one of her snacks.

Of my gosh @roolet12 how disgraceful esp from someone so involved in her care! When DD was in assessment for her heart recently the pead blurted her weight out. Luckily his accent was think and DD didnt hear it. I hope there is not too much fall out
@lougle it will be the drugs. I had a hard time waking my DD the first couple of days although that was the first morning breakfast was not a major issue for us so that also rings true. It will prob wear off a bit as she adjusts we then had to up the dose
Well I have had a bad day. I got up this morning with an awful head and DD1 was hideous in his usual 17 year old selfish teen way and I just started crying at the breakfast table. And I just couldn't stop. I cried all the way on the school run and home- not wailing banshee crying but steady tears

I am not sure what got into me. Then I tried calling the GP again to arrange more blood tests and got the usual call at 8am tomorrow to be put on the call back list. I am sure you all understand how impossible it is to call at 8am with an ED child...I cried down the phone. They didn't budge.
So I have got to try to do that tomorrow.
They have not acknowledged either my complaint on 1st Mar or my follow up chaser letter on 9th Mar and so I have escalated it to nhs england.
Then one of our guinea pigs may have cysts and need to be put down. The death of her other guinea pig was one of DDs triggers for the Ed. And the vet made me feel like a terrible owner for not bringing her sooner.
And now I need to have that conversation with DD. Sorry for the rant but I feel like it is all on top of me today

How everyone else is ok.

Oh @Lottsbiffandsmudge have a very unmumsnetty hug. Teenagers are vile at times.

lotts rant away,what a wretched day.teens are a separate species and can be utterly vile sometimes
Roolet words fail me...

Well lil zoo didn't make it to school today,she was in bad (IBS) pain this morning.had a cereal bar and soy milkshake before I had to go out to an appointment.i got back 11/2 hours later and she's grey.says dizzy and nauseous.cold.i took temp with one those gun things(35.2)pulse was 98 BPM(normal for her is 70 ish)sat with her a while,covered in blanket but open window for a few minutes get bit of air.
Had make decision no school.she isn't seeing stars,more feels like go fall back wards/headrush if moves?
I didn't know what to do so rang the local ed clinic she was referred to for advice

She's to have repeat weight/height/b.p arranged for asap at doctors and they have jiggled her initial appointment there from 21st June to NEXT THURSDAY(she had to go hunt thru the diaries and said expect at least a month's wait,so I was braced for end April,still better than mid June but WOW at the upgrade)
It's made me a bit nervous she's somehow much worse than I thought,I still think I'm going crazy overthinking disordered eating as eating disorder....

Any hoo.here we are.she ate a couple mini wraps and some ham,peppers and tomatoes.looks grey still,but said felt bit better.i think mild anxiety of about get ready for school perhaps with any physical symptoms of not eating /drinking enough in last 24 hrs just was too much today
Grateful she's a complete teen sloth.lays in bed on laptop if isn't requested do anything else,so at least what does eat is used only for necessity.maybe she's too tired?she used to love dancing and climbing at the park etc.hard to tell effects low intake or just hormones if a teenager.

thinking of you and difficult conversation lotts

Sorry she's feeling unwell, @Stilllivinginazoo. It sounds very like DD1. Used to be so hyperactive and now just lies in bed.

Oh lots that does sound like a shit day 💐 I think teens would send a saint to drink at the best of times let alone add an ED into the mix. I'm sorry about the piggy.

Lougle is it okay to be cautiously optimistic that the olanzipine is going to help?! That's great dd was hungry and wanted to eat.

Valley does your dd have a pudding after dinner with the snack in the evening as well? My dds meal plan is for both, the puddings are a good way to get the calories in ie rice pudding, cheesecakes, sponges and cream. From my understanding the animal fats are what's needed for weight gain, if she'll eat a cereal bar could you make flapjack? I make flapjack with oats, butter, sugar, golden syrup and add in seeds and nuts as well. Dd still considers it healthy (!) so doesn't moan too much about eating it. If you want I'm happy to send you a copy of Dds meal plan and snack ideas?

Roo that is literally my worst nightmare 😱 I'd be raging if I was you.

Zoo if your dd doesn't pick up think about an a&e trip to get her bp, pulse and blood sugar checked. That's good they moved the appointment forward.

Well dd has been in a weird mood all day, not sure what's going on 😕 hoping it's not something someone has said at school...

@Stilllivinginazoo sorry DD feeling unwell but glad you're being heard more. Can't believe you were supposed to wait til June. Bloody nuts. Good they can keep an eye on pulse if it's risen quite a bit..DDs followed that pattern- jumped from consistently 50s to consistently 100 + ish just before her admission when wfh was 70ish. I'd echo Girlie and worth a trip to A&E or gp if it continues..
@lotts sorry your day so shitty. I've yet to experience the joys of an older teen but can imagine...prob good for them to see you cry occasionally, we're not bloody robots.

Since collecting DD from IP this eve her mood has def been much more preocuppied than prev days and she said " I've got a worry..." but wouldn't elaborate. Thats basically code for "I'm worrying about getting big" . When I asked if it might be related to sonething that was said in the CPA she shut me down. She then asked me later, what would happen if she lost weight under CAMHS. Was naively hoping it may have passed her by earlier but it clearly hasn't. So, thank you Mr. Psych. Just what we needed on D- day minus 1.

...and meant to say fingers crossed for your little piggy @Lotts.

@Stilllivinginazoo sorry your DD has been feeling unwell. How is she this morning? Glad the appointment has moved forward tho.
@Roolet12 seems you DD did hear. I cannot fathom how so called professionals get it so wrong so often. I really feel.for you. Esp so close to her coming home.
Well I didnt have the conversation. Instead I had an evening of DD kicking off about having to do netball in Games as opposed to staying home and doing her field work.... this was a condition of her doing footal club after school (yest eve) so I am it backing down. Games is after lunch today so I will see if I can get her back. If not I will have to pull club next week. I couldn't face the other convo after hours of that. Altho DH to br fair to him and not knowing what had gone on re Games caughtvher standing watching you tube and decided to get tough. So he told her she needed to stop it unless she wanted other exercise to go and that it is wierd behaviour. She cold shouldered him.but when he went back she was sitting! So small win. Still went up and down stairs about 5 times this am tho...

Sorry for horrendous typos... I am not backing down.
In other news a mum of one of DDs friends who didnt know came to chat through the car window at club pick up as her D had told her my Dd had been ill apparently DD had told her friend. I feel this is a good step. She didnt use the AN word justvsaid she had lost a lot of weight and needed a special diet soni filled friends mum in...and she had AN has a teen so understood a lot of what I was saying.