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...

lougle - the image of your DD, cast in hand climbing backwards up a slide in roller boots is precious!

girlie we don't eat with DD - she doesn't like it. We have tried a couple of times and that way meltdown lies. (Plus we have to direct each forkful from plate to mouth and when not directing we have to talk constantly as a distraction so in reality nothing would get eaten...)

Re meal plans - we have stuck to calories - my life now consists of weighing nectarines as I slice them to get to the magic 100gm (44 calories right there)

Congrats on the gain lotts - I agree the flip switching nature of ED is something I still can't get my head around..

DD has been extra dizzy and falling over more recently - we have upped her liquids so not sure if its dehydration or she's in calorie deficit after a 45 minute walk (we add in extra calories for any walk)... We've got obs tomorrow so guess we'll see what that postural drop says...

In addition to obs (first thing), we also have IHT at home, then family therapy in the afternoon and then meal support for dinner. Tomorrow is officially renamed CAHMSDAY in our house..

CAMHSDAY obviously rather than CAHMS -whatever that may be

Busy day for you tomorrow @myrtleWilson. DD1 was a little pocket rocket back in the day. Nothing stopped her. Still doesn't really, just expressed differently.

My favourite quote from today: "Mum, who seriously cares about the hospital's stupid eating plan? That place doesn't control us anymore!!" Ummm... Well actually, they still do, DD1.

Today we're sitting at 1696 calories. I've been very conflicted about the meal plan. On the one hand, I'm getting calories in and DD1 doesn't have an appreciation of calories as many children her age do. On the other hand, I've been told they're aiming for 1500 calories and I'm exceeding it. I'm feeling bad because DD1 says she's stuffed and she is struggling with it. However, if I was following the hospital guide instead of calories, I would give the pudding after lunch/dinner and all the snacks without a thought, because I wouldn't know I was exceeding the calorie goal of the plan. But if DD1 did know about calories, she might be rightly angry that she's feeling stuffed because I'm adding 200 calories to an already difficult challenge. I'm not adding them deliberately, it's just the way the meals have gone, but if I was sticking to the calories, I'd have let her skip evening snack. However, then I'd not have followed the plan!

DH, who is a very uncomplicated chap, has said that he would continue as I am on the basis that a) we'll probably be asked to move to 2000 calories at some point anyway and b) we should see them as 'banked' calories because the likelihood is that DD1 is going to stop playing ball very soon.

DD1 has just come through and told me that she hates the eating plan, that they're expecting far too much of her and she doesn't understand it, no matter how much we explain. She said that she just wants to go back to eating how she was, just like everyone else, and not be on a strict eating plan. But she knows that she has to because otherwise she will have to sleep at the hospital and she is terrified of that place.

I feel awful

Honestly Lougle you're doing brilliantly, you absolutely have nothing to feel bad about!! Your dd is just feeling uncomfortable as it's more food than she's used to but that is only temporary and will even out. I agree with your dh that banking the extra calories is an excellent idea.

Myrtle hope tomorrow goes okay, do they keep an eye on your dds bloods and do the occasional ecg as well?

I've had quite a nice, relaxed evening with dd and completely bottled out of the conversation I was planning on having with her about the eating plan!! I am such a conflict avoider 😕

Sounds like everyone has their hands full at the moment.

I’m glad DD is out of hospital Lougle. In some ways I found it easier because I could leave the conflict there and be more ‘me’ at home, but it’s just wrong not to have them with us.

I’m confused by the eating plans and the calories. DD seems to be eating loads, but I don’t think it’s sustainable once she goes back to school.

She’s on 3 meals and 4 snacks a day, plus one choc bar. I don’t hide/add anything to meals, so no cream/butter/milk. Her dietician has been off sick for a month so we did the plan with DDs keyworker and added to it ourselves - I suppose I need to go through it and try to work out calories. She eats yoghurt like it’s going out of fashion (4 a day) and twice a day adds a pile of cucumber and cherry tomatoes to a meal to bulk it out. She is steadily putting on weight though, which is great.

I’m worrying in advance for the end of lockdown. Right now it’s easy for me to take her to all her appts because school is giving me one day a week working at home so I take our CAMHSDay (good name!) and her teachers have been great about her logging on late etc. When they go back I will have to take her out of school for the weigh-ins and meetings and that will add stress and anxiety on her part (and mine). Plus school have just changed the daily timetable so it’s going to mean missing the same lesson each week (maths)... and of course it’s going to mean questions and comments from classmates which is DDs worst nightmare. God it’s a month away and my heart is racing just thinking about it.

4 snacks?! How do you manage that @exLtEveDallas. And a chocolate bar. Weirdly envious of your feeding aptitude. So glad she's putting on weight.

In answer to the question about eating the same as DD, I am eating mostly what she's having and am surprising myself by not putting on weight when I'm clearly not an underweight teenage girl. But she has the extra snacks I suppose although I have cheese on my rolls and other additional items. I'm trying to drink less alcohol because it's the only thing I can cut out without it being a bad example and I'm hitting the menopause and could do without putting on lots of weight (though of course it would be a small price if it got her weight up).

Yeah I'm jealous as well Eve, it all feels a million miles away from where we're at atm 😕 have shown dd the meal plan and snack list and got a straight out 'no' not sure if it was what she was expecting or not...

I've also told her she won't be going back to school and I'm not going back to work until she's established on the plan, got a 'I don't care' to that.

'I don't care/I don't give a shit' seems to be what I hear the most of these days. It's such a conversation killer ☹️

DD1 yelled and screamed this morning at breakfast. Ate the toast but refused the cereal because she 'doesn't understand why she has to have more than one thing'. So I made her eat a yoghurt and then drink a Fortijuice top up to make up the calories the cereal would have given.

We have seen the EDS Psychiatrist. She wanted to start medication, but was a little torn between an antidepressant (fluoxetine) or an antipsychotic (aripiprazole). In the end she went for the antidepressant. We're starting on a teeny dose (1ml/4mg) and will build up slowly, so no impact expected for a few weeks.

DD1's post breakfast, clothed weight was 39.04kg today. At home, pre breakfast and unclothed, it was 38.2kg.

The Dr said they don't like children to attend school until they are 80% WFH. That's 5kg for DD1, which seems impossible, but baby steps.

Hey,
Her snacks are all yoghurts: one after breakfast, one mid morning, one mid afternoon and one before bed. Her choc bar is after eve meal. The Breakfast, mid morning and mid afternoon yougurts have fruit with them. The morning ones are fat free ‘digestion boost’, the afternoon is a protein one and the bedtime is a muller light. With the fruit I think they are around 100-120 calories each for the morning, 150 for the afternoon and 100 for the evening. I’ve been buying all the weird and wonderful fruits to keep her interested and to add to the calorie intake.

The KW thinks she will have to be weaned off the yoghurts at some point, but as they are the easiest of all the foods I will resist as long as I can.

DD1 has eaten 3 yogurts today. 2 because she didn't eat all of her breakfast and ate hardly any dinner. 1 as a snack. It's a quick and easy 200 calories, which is relatively healthy, so I'm going to take that. The alternative would be to stack up the Fortijuice.

DD1 was given her 15 chips, 4 chicken nuggets and 100g of carrot for dinner. 2 chicken nuggets and 25g of carrots later, she put down her fork and said she couldn't do it.

So that's 2 meals she's not completed today. But in terms of calories, I've got just over 1500 in and snack tonight to go, so that's something. Not sure the dentist would be pleased with her diet though!!

@exLtEveDallas I hear you on the school thing. DD is desperate to go back I am like...err maybe not. I am terrified she will lose the weight she has clawed on since Xmas eve when she was her lowest weight.
I will need to get the school onside. Bring her home for lunch to get cals in her and stop her moving. Then there are the logistics of games and PE never mind getting there in the traffic (I used to drop them off nearly an hour early to beat it but can’t have her unsupervised for that length of time). Never mind the sheer amount of cals it probably uses.
And then there are those girls who got at her for eating a large snack (which was one of her triggers). And her class which she hates. Etc etc.
Arghh
@Lougle it1 sounds like you are getting in the calories. Can’t be easy.
Livid with my DH as he took her for her football session to the field today. Whilst I spent the time doing meal plans, on line shopping,baking and dinner making. He had a meeting which meant he had to cut her session short. So instead of biting that bullet her just left her at the field to finish off....OMG...I have just spent 2 weeks being physically and verbally abused by the `ED to establish a no exercise alone rule....and he has totally undermined it. I have no doubt it will be spat back in my face at some point. So there is me running up to the field to try to minimise the damage, ensure she finished on time and accompany her home. And guess what there is no way she would have finished on time..... as she hadn’t packed up or even stopped the drills with 5 mins to go and it’s a 5 minute walk home.... bloody man...

@Lottsbiffandsmudge I completely understand where you're coming from. DH put margarine on DD1's toastie today 'because the butter hadn't softened' and I went wild - I spend so much time thinking and planning meals then he didn't wait for butter to soften. It sounds so trivial, but it's like your whole week's work is crumbling.

How did your DD respond to you arriving? It's really hard to keep to the requirements of the ED Teams without the children feeling completely pinned down.

She was ok about it luckily as she is always in a good mood after exercise. Not sure how Saturdays litter pick will go tho. I think I will ask DH to accompany her. And take that pain....he only does the football when she is at her best and hardly does any of the meltdowns. Mostly because he is no good at it. I know it is hard for them but I didn’t know what I was doing either but I have read loads, talked to people and taken advice....DH not so much....

I've just completely lost it with DH. I've been in a virtual meeting this evening. DH decided to 'help' by giving DD1 her night time snack. Paid no attention to her plan 'didn't even remember she had one...' and has given her a yoghurt and a chocolate slice. Sounds good on the calorie front, but that's now 4 yoghurts and 3 chocolate slices that she's had today. So she's going to get the message that she can refuse her main meals and eat crap to make up for it, making it even harder for me to get her meals in tomorrow.

DH and the two other girls have been watching a series of films. Last night their film was 3 hours long, finishing late so the girls didn't want to get up this morning. I've just gone down and they're watching another film 'because it's the last one....'. Guess who is going to have to try and get them up tomorrow when DH is at work. Me.

I love him so much but he's not a detail man. He doesn't see that I spend so much energy trying to sort things out and then he just undoes it all with his casual way.

FFS there are some partners of folk on here who really need to step up.... We all mess up occasionally, usually due to the ever changing rules the ED appears to enforce - but that doesn't sound the case for @Lougle or @Lottsbiffandsmudge - sending fortitude your way..

So CAMHSDAY started with a 100g weight gain over two weeks - which is pretty spot on for weight maintenance, a postural drop which we're trying to address through liquids..

And ended with a session with care co-ordinator which said they need to prepare DD now for adults transition as she'll move from 6/7 interventions a week to 1 per 3-4 weeks. So basically interventions being reduced and encouragement for DD to take more of a lead. Basically a fucking cliff edge.

I know Dd should be more independent, but her ED is so loud, so vicious that at the moment she needs constant support all day. I cannot fathom how in 7 weeks we can possibly get her to a mental position where she can take on more of an active role whilst CAMHS are reducing their interventions

Am almost 100% sure come her birthday we'll see a massive relapse into severe restricting and all that comes with that and I just don't know where to go/what to do. I've emailed the private eating disorder service that a PP linked to but am really terrified now. We were led to believe it would be a handover of care, I never thought adults would maintain at the rate CAMHS have done but not this cliff edge.

Oh God re the partners, that would do my head in! As hard as it is on my own i would find that harder I think!!

Myrtle great re the weight gain but omg at how much less care they're suggesting!!

We've had a weird day really, I showed dd the meal plan and snack sheet and she just laughed and said no way. I asked her about meal planning together ( as apparently this can help when you have an ASD/anorexia mix) and got no response. I've told her she won't be going back to school unless she's following the meal plan and I'm not going back to work until it's being followed and got 'I don't care.'

I suppose I just have to keep going, life is going to get very boring for a while as nothing will be happening unless she eats.

She's actually been a weird fake happy mood, like she's trying to convince me she's totally fine 🙄 her arms are now covered in bruises from her hurting herself ☹️

Hi. I haven't been on the thread since before Christmas, not because dd is suddenly better, but because everything was just too much for weeks and I had to retreat.

Anyway! Update is pretty good - she is 92% of healthy body weight now, although it has been 2 steps forward 1 step back all the way. Lockdown not helping but she can see the light. She had a MH assessment today and they are starting CBT, which they wouldn't do unless they thought she was ED-free enough to profit from it.

She isn't out of the woods - still won't eat lots of things, but you can rely on her eating avocado, peanut butter or drinking a syrupy latte, and it's been enough to get her through (this far).

All our dc are different and what works for one won't for another, but I am wishing very hard that there will be progress for everyone on this thread.

(LtEveDallas I just read your early posts and I was exactly the same, feeling that I cottoned on too late and dd could have died over the summer when I was kidding myself I could deal with it all by myself. It terrifies me to think of it now.)

Hi all sorry I haven’t checked in for a while. Dd left hospital last week and started reducing straight away. I got really upset on the phone to AO as could see us hurtling towards another admission and they have all really rallied round.

We’re going to try handling things slightly differently. AO are going to be really pushing motivation. She has so much to get well for and they’re trying to really push that message arranging volunteering etc. A lot hinges on her keeping well and out of hospital. We’ve noticed meal times are better if we don’t mention or encourage eating( I know complete opposite to EM). When I say better I mean that she stays and has a more positive experience of food ie no swearing or shouting from her. Obviously less is eaten but less fight/ flight and panic.Less heightened. I feel the way dd works the panic has a massive impact so lessening it could help long term.AO will focus on being more pushy. I feel she will feel more in control. Going to draw up a timetable of the meals for the week too.

She is way off what she should be eating but wondering if being lead by her a bit more may help stop the drastic reducing cycle and help towards a very slow improvement more on her terms and more likely to keep her out of hospital which is having a massive impact on her life.

Watch this space though. I’m aware we are just a few days in. I may well be heading butting the wall 2 weeks from now. 😬They moved clinic at hospital forward to today due to the spiralling and I’m v worried she has picked up the last couple of days to keep them happy. Think she is a bit surprised re how CAMHs are in touch with hospital which is no bad thing.I did warn her.

Re husbands I’ve had a few issues with mine re discipline, screen time etc but he has really stepped up with the ED. FT has helped and the fact he is a lot more involved with this than other areas although due to Covid he has had to get more involved with those too as he can wfh and has to oversee home schooling.I think handling this completely together is the way to go. It’s hard when only one can do the appointments but weekly FT, going through the plan, feeding back from every appointment, dealing directly with AO etc is helping us. I do have to remind a few things interestingly re sticking completely to food plan but he is being amazing. It’s interesting as it’s the one area we are 100% together on. Maybe Lougle your dh just needs time to get used to the rigid structure of all this. It’s hard for them to understand when they aren’t at all the appointments and are in the hospital less.

myrtleWilson. I hear you re adult services. My ds is moving on elsewhere within CAMHs and it’s terrifying particularly when you’ve spent so long battling and are only just getting support, need more time etc It adds a whole additional level of stress. I really do think 19/20 would be a better cross over point.

@myrtleWilson That is a huge cliff edge. Is it really necessary?? When I was in hospital last week, I asked what age they take up to and they said that 16-19 they get a choice of child/adults ward, but they will take up until 19 if necessary.

I feel like I've been a bit unfair to DH here. He would likely qualify for an ASD dx himself, and he is amazing and so consistent when something is in his routine. I never even think about bin day, for example, the bins just magically appear at the end of the drive and then reappear behind our gate. Where DH falls down, though, is with new stuff that he hasn't programmed into his calendar. I should know that it will take him a while to catch up, and also that I have had the intensity of hospital, etc., but he hasn't.

Today was another battle for breakfast. DD1 had cereal but refused the toast, then had a complete tantrum when I said we'd have to top up with Fortijuice. She wanted to have a yoghurt instead, but I can see the pattern developing of sacking off the normal food and replacing with yoghurt, so I refused. I said that she had to stick to plan, or have Fortijuice.

Despite 1868 calories yesterday, she's 100g down this morning, but her bowels are finally starting to work so that's probably why.

I spoke to the Pharmacy yesterday and they've ordered her fluoxetine for today. I spoke to the Dr this morning and he's prescribed her next box of Movicol.

Lovely to see you both they and Scribbly you both sound like you have a bit of a grip of things which is great to hear.

Interesting what you're saying about E-M and doing the opposite Scribbly!! I think that's possibly going to work better for my dd, the more I can let her be in charge and not put her pressure on her to eat the better I think. That obviously has to be within certain safety parameters though 😕

Lougle have they said why they think the meds will help with your dd? They suggested fluoxetine for my dd but I'm not keen on her going on it yet, I am keeping that under review though.

My dd did say she was willing to give the meal planning a go so we will try and agree on that later...

Tomorrow is meal plan day, wish me luck!!

Lougle are you weighing her every day? Our therapist says do it just once a week (and hide the scales the rest of the time). That fits in with my experience of trying to lose weight - too much daily fluctuations based on clothes, time, water retention etc. But ignore me if this not helpful, I am so early on in this. And I don't do calories either - don't know whether this is a policy based on some sort of reasoning or my own desire not to have to log them.

Theyseeher that sounds so positive re. weight. And good tip re the lattes. I bet they're a ton of calories. Any other things that helped?

Scr1bbly I find the less we mention food the better. I let her go on her phone, eat in front of the tv, fiddle with slime - the opposite of mindful eating. I think positive motivation is good too as it will work better in the long term.

Ps sorry about the CAMHS stress Myrtle.

@Girliefriendlikespuppies DD1 is very anxious about a lot of things and a bit paranoid, too. She was saying that she had thoughts of self-harm, etc. It's hard to know how sincere all those thoughts are because she's not NT, but regardless, they signal deep unhappiness. As she's been like that for a long time now, the psych thought it was worth trying it.

@Valleyofthedollymix I think we will change to weekly weigh. I was using daily weighing to help DD, with the notion of "Let's see what your brilliant eating is doing on the scales" because she isn't like typical teens who don't want to put on weight. She gets excited if her weight has gone up. But when it doesn't go up it leads to frustration.

I spoke to the dietician about calories Vs servings. Because the diet plan was so vague (1½ spoons of....) I found it difficult to know that I was definitely getting enough food into her. I'm much better with numbers. They also prefer calories, but use spoons to try and make it easier for parents. DD1 doesn't have any part in my calorie counting. I just use MFP to log her food.

Hmm re having a grip on things. All went tits up today. Got 15 mins early for clinic and dd incredibly heightened and worried about appointment before we even left the house. Legged it out of car park when we got there after ranting at me. Lovely nurse came out to look for her. Wasn’t far but it was mortifying. We had a 800g loss too.FT emailed to say that their clinic will be changing. Suspect that means we’ve had our lot re sessions or the times will be changing ie in work day.😩

And so another day on the ED rollercoaster ends.Will be drinking buckets of this tonight.