Teen Eating Disorders support thread 3

[Girliefriendlikespuppies]

Thought I better get a new thread going!

Please come and join us if your teen is struggling with an Eating Disorder. We are a kind, supportive bunch of parents looking to support each other through the dark days of caring for a teen with an ED.

Good evening. I have felt really comforted reading your posts. We are all right in the thick of it aren't we. I'm sorry you are here too. Hoping day 2 with Olanzapine Makes a difference tomorrow. I'd say the manic thoughts are our worst enemy. She is fraught at the moment and disgusted with herself for eating so much today (only 1700 so far, with the supper snack battle still to come). But I'm telling dh it's a massive win compared to 800 for everyday before yesterday. Dd3 (11) was amazing at dinner. She told her big sister she would eat three more bites if she would too. I can't even contemplate the impact on dd2 (14) and dd3 (11) right now. We have been honest that their big sister needs supper. I took them to a local fun fair for a fun hour earlier as a treat. They are brilliant little sisters.
Hope your days are ending well today. I'm sure we are all exhausted!!! I'm an empty shell!

I'm quite overwhelmed at the moment. Can't quite take it all in.
On previous post I meant we are being honest with younger girls about support for dd1. Not 'supper' which just sounded odd!
How often should I weigh dd1? We have another zoom with the clinic Thursday evening. Perhaps then (we weighed her Monday at 10am)

@sm701 weekly weighing is the norm. It can be v stressful for the sufferer (and carer!) and as weight can fluctuate day by day it’s best to not look too much. We weigh at home blind (i cover the display so Dd can’t see the reading) at the same time and day every week- which is the same day we have our ED meeting. I weigh her first thing after a wee in pjs and then what’s app our KW
If you are going to hav weekly meetings and they are likely to be on the same day you could do something similar.

And I sympathise with the sibling issue. I have 2 sons as well (17 and 15) and they have been impacted... it is easier now but at the start and for several months they were witness to the meltdowns (which were often violent and frequently hysterical with suicide threats) DS2 was particularly upset as they have always been close with Dd and he is trying to juggle GCSE uncertainty as well. Now things are calmer and they are re establishing their relationships with her which is nice to see.
Beat has some good resources for siblings which might be useful. I think the key is that they have someone to talk to about any worries. I have to say I def feel I have neglected them a bit (helped by the fact they are becoming increasingly independent anyway) but I try to check in with them and let them know I am here if they need me. My mum has been great with them and school are also in the loop. I think it’s worth speaking to their schools to let them know what is going on (even in only general terms) if you haven’t already.
I do beat myself up about the impact on them but then my eldest had serious mental health issues at the same age as Dd is now and had all my attention for over a year and Ds2 was physically v ill as a baby and young child so I guess it all evens out! But it is tough and you can end up feeling a failure on many fronts if you are not careful. It’s important to take care of you too..
The funfair sounds brilliant!

@sm701 have you got a young carers project in your area? DDs 2&3 have just been invited onto their programme. The worker shared this blob tree, which they look at each meeting. They decide which blob they are and why - it's really interesting to see how different people see the same picture.

Yes we weigh once a week at the same time and in the same clothes and then email the clinic. Our scales seem to differ from the clinic ones but they're reasonably consistent for us and digital so give a good idea of vague progress.

2.2kg Lougle!

We're debating Olazapine. It was mentioned very early on in passing but they've not brought it up since. She's not depressed (which I understand they use sertraline for), in fact she's pretty upbeat (manic even) and not generally anxious except when it's time to eat. So it might help or increase her appetite. Just weighing up that against the side effects. Frankly I'd happily dose her up if it helped even a little.

We're also vowing to go to restaurants now we're able. She's much more relaxed about eating food that's not cooked by me and has no idea how incredibly calorific it is generally is, hence why it tastes better. We went shopping yesterday and she happily had a massive burrito with cheese, rice, guacamole etc that must have had tonnes of calories.

I had a phone consultation with his CAMHS doctor this morning which was good. She said his physical health needs to be properly investigated especially as it will be impacting his mental health. She issued it’s a bit chicken and egg the way mental and physical health impact each other. She also said his low iron could contribute to his lack of appetite (which then in turn compounds the lack of iron). He can’t see the dietitian as the CAMHS dietitian is now only allowed to see ED patients and that’s not service he is in. But she is hoping when the paediatrician sees him physically (rather than phone consultations) that the paediatrician can refer him to a dietitian. Then as luck would have it the Paediatricians secretary phoned this afternoon and said there has been a cancellation so he can have an appointment tomorrow rather than the one we had in May! So I’m really hoping when we go tomorrow and they actually look at him they will be able to see how unwell he is because to me he doesn’t look healthy at all.

Great step forward @NelleBee!!

I take my hat off to all you mums juggling other children's needs as well as your child with an ED. I'm exhausted managing one dd, I can't imagine juggling anymore!

Lougle that weight gain is amazing, you should be so proud of yourself. That's great they're starting to talk about school and slowly getting back to normal.

We've had a normal up and down day, dd had an orthodontist appointment at lunchtime which put our usual routine out a bit. Dd then had a strop about her afternoon snack 🙄

We had a nice evening watching a film and took the dog out on a walk of dds choice, all going well until dd made a really uncalled for comment that upset me 😕 not sure why she seems to want to sabotage our walks atm.

Anyway I had a zoom chat with the ED psychiatrist this afternoon, nothing new recommended really. Encouraged me to try and push dd out of her comfort zone re food choices and suggested her ocd behaviours are more autism related than ED related. I did point out that the ocd stuff started at exactly the same time as the ED so in my mind they go hand in hand....

Feeling pretty fed up with it all, just seems never ending.

I'm sorry to hear that @Girliefriendlikespuppies, it is so exhausting and does feel relentless.

Being horrible to your mother is a sign of great trust - she knows you'll always love her however mean she is and it means you've made her feel secure in your love. I've always noticed that the children in large families (5+ children) are always vying for their parents' affections and much nicer to them as a consequence, putting endless adoring stuff on SM etc. Which sounds quite nice but actually it's because if you're one of 8 siblings, it must feel like the love is more conditional, that you're a bit more expendable.

Thanks valley the psychiatrist Ystd did point out that some of dds behaviour is likely normal teenage hormone driven! It's hard to know sometimes what's ED driven and what's not.

She's been good this morning, helped me empty the shed (no minor feat 😳) and will help me take all the crap we cleared out to the dump in a min.

I suppose other teen parents worry about sex, drug taking, bullying etc I doubt many get through the teen years completely unscathed!!

@Girliefriendlikespuppies sorry you're getting the brunt of it. If it helps, all 3 of my DDs (12-15) say horrible comments at times that cut me to the core, despite being nice girls.

We went to the beach today for DD3's birthday treat. DD1 did well, although she asked for her wheelchair half way through. It wasn't easy to get her to eat at the beach, but I had got her up early and given her breakfast, then I gave her a snack on the way to the beach. She then had snacks afterwards in the car.

Yeah I think some days my resilience to dds hurtful comments are better than others. She is a good girl generally, caring and kind but I think the combination of lockdown + ED + hormones has bought out another side to her!!

I'm glad you had a nice day Lougle and happy birthday to dd3 😊

Dds been pretty grumpy again today, she just seems quite angry generally. I'm wondering if she's either getting pissed off with the ED or the ED is feeling under threat and kicking off. Or she's just hangry!!

She did well with dinner though, a decent plate of red pesto pasta with extra olive oil and cheese on top with garlic bread. Pudding was a massive bowl of rice pudding with extra double cream. The fact she ate so well makes me think she was really hungry which I think is a good sign....

Yes, I think the teen years are the most difficult!

Appointment with the paediatrician didn’t go as well as I hoped as I hadn’t realised but it wasn’t the paediatrician it was a consultant cardiologist who the regular paediatrician had referred him too. On the plus side he had an echocardiogram and his heart is all good. On the downside he wasn’t interested at all in his eating or weight and said he didn’t think his tachycardia is related to his weight which is apparently fine. Their scales made him 2kg heavier, so 42kg, and they put his height at 164cm (the GP measured him as 163cm and 40kg, I measured him as 165cm and 40kg). The GP is giving him iron tablets which is good.

Had an interesting conversation with him though on the way to the appointment. He said he isn’t interested in eating food and he doesn’t understand why there is all this fuss over something that is so unimportant to him. I explained that while he may feel eating is unimportant to him it’s actually very important to his health. I told him about Nikki Grahame and explained that actually you can die from not eating. He doesn’t want to die right now so I think that made him think a little. A few minutes later he said that although he is happy with his weight as he is, he is open to the idea of trying to gain some weight and what sort of foods did he need to eat. He then said he was willing to eat eggs and cheese. I do feel progress has been made.

The difficulty I guess with his autism is that he never does anything he isn’t interested in. He lives in his own little world, and food to him is uninteresting and unimportant. All his struggles in life and at school basically come down to the same fundamental issue of him only doing what interests him.

Happy birthday to DD3 @Lougle Nice that you were able to go to beach! It’s lovely weather here but our Easter Holidays appear to be different and mine were all back at school this week.

Oh, I really thought I made a break through with him earlier. Now he is refusing dinner as he feels like he already ate too much today. He didn’t.

Thanks NelleBee that's a real barrier, isn't it? Do you think he would respond to calorie counting? If he could see what the NHS website says he needs, then you could objectively say 'you've only had x calories, so you do need to eat dinner.'

Yes thats a good idea - if I show him how many he needs and we keep track he might realise how little he actually has and want more.

I need to also try getting as many calories in as small a volume as possible as his appetite is so tiny. So I’m looking at foods I can make he might like.

@NelleBee - it must be such a tricky situation... have you tried things like full fat yogurt with chopped nuts / granola and dried fruit (which is also a good source of iron) etc as a snack? Porridge with nut butters can be made quite energy dense too (nuts are a great way of adding in nutrient-dense calories). What other kinds of foods does he like? Other things like clif bars are energy dense which could help...

I'd be cautious talking about calories too much as this may cause some to own problems, I'd focus on getting as much into each mouthful as possible. There's something called Maxijul which I believe you can get in Boots or online which is apparently odourless and tasteless and can be added to anything. I'm thinking about getting some for dd to add to her smoothies and milkshakes.

I've just given dd a smoothie which was a tub of blueberries, half a banana and some frozen mango topped up with double cream and a small splash of juice. It makes me happy to see her drink it!!

Hope everyone else is okay?

DD1 was invited to a youth BBQ today. She went, but we had to bring her home after 10 minutes because she couldn't cope. A shame, but at least she tried. On the plus side, she ate 3300 calories today, so that's all good.

Up and down week here. A few good days and then this morning DH caught DD exercising in her room before everyone was up. He was really annoyed and she had a major meltdown and refused to get up. All the usual throwing stuff, banging the walls, swearing and screaming. Breakfast was therefore late and I had to threaten to cancel her match tomorrow in order to get it started.
She’s been foul all day. My mum was over which was an added stressor. DD was frankly rude to her most of the day. We went on her rest day walk and we were back to being 5 meters behind although she didn’t go at a stupid pace. She has eaten everything except half her supper smoothie which I have said she can have with breakfast before her match tomorrow.
I guess bad days are inevitable but it just doesn’t seem to follow any pattern and I was looking forward to today as I had my Beat support group (which I had to leave early as she wasn’t playing ball with snack) and we had had such a good week together up to that point. We even had a great day clothes shopping for her on Weds. she said then though that she felt ‘spoiled’ and didn’t like the feeling....if you can call a few pairs of trackies and a few sale bits in New `Look ‘spoiled’....
I wonder if the ED was fed up with DD having a good time and decided to kick off. Or it was telling her she didn’t deserve the clothes...
She won’t tell me what triggered today and she is not engaging at all when I try to talk about her illness, feelings or the exercise. She is totally shut down, prob more than she was when she was really physically ill when she would open up.
Anyway onwards we go.
How brave of your Dd to go @lougle and well done on the cal front.

Hello just checking in with you all. We have only managed 2/3 of meal plan each day and no surprise dd has lost another 0.5kg on my watch. Feel such a failure. She couldn't sleep last night for recriminations over a small biscuit in the afternoon. I wonder if 1mg of olanzapine is not enough. The voices are very strong. Me and her dad are really scared. It's worn us both out just sticking to 2/3 meal plan and it's just not good enough.

Im thinking of that maxijul @Girliefriendlikespuppies , does dd know you use it? I know long term i need dd to understand what she needs to eat but right now we are in crisis I just need to get her up a few kgs so she doesn't have to be admitted.

I hope you are all able to have a nice weekend.

lotts - we had a similar experience yesterday. DD had been looking forward to something for ages, she had it done yesterday then it all kicked off. I think (and this seems to be coming out in therapy too - more below) it is down to DD not wanting to allow herself to feel certain emotions and the way in which she controls that is via eating. So in that situation, it is the ED kicking in but it is the ED responding to how DD wants it to be - if that makes sense?

Lougle- great effort on calories and 10 minutes is longer than not going at all.

Girlie - your post and description of the smoothie made me smile - am so pleased. I think you asked a little while back what my DD's wfh is... the truth is we don't know. We took a collective decision (and CAMHS) agreed to stop weigh ins about 6 weeks ago. I'd imagine she's about 100% though.

nellebee - don't be too disheartened about a dinner refusal after progress being made (I know it is easier to say that from a distance). As you know I'm a fan of a metaphor/analogy on this thread - I try to think about it as you/us laying Hansel and Gretel style trails to help our DC find their way out. You may lay a trail - like the conversation you had on the way to the appt - and it may hit a dead end but the trail is still there and the DC may circle back to it and find it goes a bit further than the dead end.

We're doing okay....we're now over a week since last self harming episode (although yesterday the urge to do it was very strong) and this morning the scabs on the very prominent scratches on DD's forehead fell off and so her face is all clear & gorgeous and she won't have to sit with her hoodie up to hide it when she goes out tonight!

Eating is going well - still needs reassurance but is picking out challenges from the challenge jar to do each day - this week she's tackled sushi, mixed cereals for breakfast, a chocolate bar amongst others. Last night we revisited tapas night as the last time I made it, it all went downhill. She ate - patatas bravas, chorizo, prawns in garlic/chilli, aubergines in honey, slices of baguette, tortilla, manchego cheese, Serrano ham and had seconds. She was so brave, needed reassurance she wasn't being greedy but she smashed it.

Despite my concerns I shared earlier about leaving CAMHS, in many ways leaving has come at the right time. DD does seem to be making great progress with adult psychologist exploring both the core of her behaviour (emotional disregulation - her fear of feeling sad or too happy) unpicking this, demonstrating the ridiculousness of it - i.e fear of being sad means DD doesn't cry when people die which is 'ok' but the Dr pointed out that this response instead saw her hospitalised three times for her eating disorder, DD did apparently go 'hmm, yeah..' She's only seeing the Dr once a week instead of the multiple CAMHS interventions but it seems to be better targeted at DD. Thats not meant as a criticism of CAMHS but one of my concerns about CAMHS all along has been a sense that interventions are predicated on younger age groups. I do think perhaps there is a need for CAMHS and CAMHS plus - so CAMHS up to say 14/15 and then a CAMHS plus for 15 - 23. I do know this is pie in the sky thinking though in terms of funding

Sorry for massive essay!

@sm701 Crossed posts with you there. Am so sorry - it is gut wrenchingly difficult. I don't know how many times over the past year I've honestly thought 'we/I can't go on' 'we're at breaking point'. It is an unrelentingly hard slog - trying to support a physical fragility caused by a mental illness which means the fragility means nothing to the young person. It took me ages to really get my head around the fact that no amount of 'facts' would make DD want to get better, it also is still taking more time to recognise that the ED is giving DD something that she isn't getting elsewhere - that feels like a massive slap in the face of my parenting but it is true.

I don't know if you've read the previous two threads but I was in your shoes almost exactly when I started thread one and my post this morning is a million miles away from that very first post. Thats not to say we're out of the woods (not by a long shot) but it is meant to try to give some hope - I know I really needed that hope in last summer.

I've had a look through your posts and didn't see it but what support are you getting at the moment and what happens when meal refusals happen at home?