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.

Thank you all for your supportive comments, I shall take the maintain as a win!
He’s only eaten a sandwich and a piece of fish today. Feels like an impossible task to get three meals and three snacks a day into him. And the more I try the less he wants to eat, talking him about needing to eat seems to make him distressed and less likely to eat.

@NelleBee it's like tug of war. Right now, you might feel that he's tugging every time you mention food. Right now, you might think you haven't got it in you to tug harder when he does that. But one day, you'll feel so fed up with the situation that you'll think 'stuff it' and you'll tug so hard that he can't help but comply.

Two days ago DD1 was refusing main meals. Today I thought 'stuff it' and when she refused dinner because she was too tired, I said 'that's difficult, sweetheart. But you can sleep once you've eaten dinner.' Then I told her about the scene from Ghost, where Patrick Swayze starts singing 'I am Henry the Eighth I am...', then I said 'so open up, or I'll start singing!' We managed 3000 calories in the end.

@Stilllivinginazoo I cannot imagine sending my child to school knowing they would not eat until they got home... that is not safe and reason enough not to go back full time IMO.
Similarly with the exercise the calories need to be enough to make it viable.
I am not an expert in IBS but maybe the dietician will have some good ideas? Is eating 8 times a day to help alleviate those symptoms?
You really have a tough situation and whatever her weight if she is losing over the 4 weeks that is a flag for an eating disorder even if atypical and you should be offered proper help.
@NelleBee it’s a fine line between ‘talking about eating’ and ‘talking to get them to eat’. I tried really hard (once I had got clued up on treating ED) to not have conversations about logical or rational reasons for eating as it was pointless and made DD defensive and even more difficult. As @lougle said so well above I just said things like ‘I can see this is really hard but please eat’ and ‘another mouthful please’ and ‘food is not negotiable’ etc etc until I was blue in the face. With weight gain it gets easier
@lougle 3000 cals is amazing!

lougle they ask to speak to her and she nodded and I was asked to leave
Her WFH was ok when you kindly checked it for me before

@Stilliving ×8 smll meals a day! Not sure how they expect you to do that if DD were in school? There simply wouldn't be the windows to eat often enough, assuming of course she was compliant with that idea. ( and it doesn't sound like she wld be...). Have tge ED team indicsted to you whst they feel might be a diagnosis here - eg ARFID? Have you asked them? Losing almost a kg in 2 wks should be making them pay attention. That obviously can't continue. What is her current wfh do you know? Have they discussed an anti depressant wirh you? It sounds as though shes really struggling with her mood/motivation in addition to the eating..? Cld you press for a discussion with the psychiatrist about that?

@SoTiredNeedHoliday have you managed to spk to anyone yet re helpful meds? DD refused to take anything when she was only 11/12 y.o - she was v poorly like your DD and couldn't possibly make a reasoned decision about it because a) she was too young and b) at such a low wfh her ED gave her irrational and paranoid ideas about it, like it would suddenly take her ED thoughts away, which scared her because she said she didn't want to get better and she "loved" her ED. Once things became ctitical again and she was being tube fed in hosp she did finally start ariprazole and the difference was remarkable - within days sge was much calmer, within a week or two she was managing a few mouthfuls of food ( from none - fortisip drinks had basically kept her alive) and within a month or so, full meals. So if you can press for discussion on this asap I really would, it may be a gamechanger.

@Girliefriendlikespuppies hope weigh-in and the assessment went ok? Do you have to wait long to hear the upshot?

Our 2nd post discharge Camhs thus morn *( face 2 face). We gained 0.9kg this wk which is obv great thiugh Im v puzzled how it was only 0.1kg last wk. Had expected less this wk as resistance to sitting and insistence on walks has been edging up again. Her KW semi suggested we look to decreasing her plan as ages hit 95% but I stressed how her activity levels will be increasing so dropping anything too early is a risky strategy as reintroducing "extra" again ( as DD wld see it..) wld be v difficult. DD gave me big daggers at that point but has said surprisingly little about it since - probably because she's been to play footie with DH. Later on may be a different story.....

I'd be deeply unhappy if they asked to speak to my child without me, but then I have two with SN. I've always said to my Dd's "if you want to speak to someone on your own, you can. But if they ask to speak to you alone and you don't want to, you have to tell them." It's the one time DD2 will speak up. She stands up straight and tall, looks them right in the eye and says "I'd like my Mum to come with me, please." But it's clear that it's not a request

@Roolet12 well done on the gains. I haven't figured out weight gain at all. 2 weeks ago, we had averaged 2300 calories -gain 2kg. This week we had averaged 2600 calories -gain 1.2kg. But I guess her weight was 2kg higher, so she had more calories just for maintenance.

DD1 is doing ok. We had i2i today, but they've started dropping into conversation 'when we leave you....'. I'm ready - too many appointments.

Great gain Roo it worries me how quickly some professionals want to start cutting back, I'd be really annoyed if anyone suggested that to me in front of dd.

Dds assessment seemed to go okay Ystd, dd said it was a lot of quite random questions. I've not had any feedback yet....

Dds been with my mum today who said she was okay, ate her lunch without too much trouble. We had fish n chips for dinner and she did well with that.

I think she is doing well calorie wise but the problem is it's so restricted in terms of when she'll eat. She will eat breakfast, lunch and dinner with a small afternoon snack but there's no chance she'll eat any food outside of these times 😕 it just means you can't ever be spontaneous, everything has to be preplanned to ensure enough calories go in.

I'm assuming that will get easier with time??

Lil zoo has admitted the doctor pulled her chin up as she was looking at her lap and said look at me then they try to convince her to have some water but she didn't want any.shes very shy and not good at speaking up so just said nothing and turned head away from the fingers pulling her chin up.im NOT happy about this.she would never say do not touch me and I'm very upset for her.she has very tight boundaries of personal space and won't even hug family etc

@Stilliving I'm really shocked they did that. That is an invasion of DD's space. If it made her feel uncomfortable, which by the sounds of it, it did, you should feed that back to the clinician. Last thing you need is her not feeling that she can attend appt's.

@Girliefriendlikespuppies hope you don't need to wait too long for feedback.
DD is exactly the same re rigidity. Everything is done to plan, no off roading. X3 meals and x3 snacks within certsin windows. The only time v recently she deviated from that was going to a friend's garden where she said she'd had 6 frazzles ( so probably about 2). We'd agreed beforehand that she'd tell me what she had and I'd adjust the next snack accordingly. When it came to it though, ED reneged & wasn't having any of it - refused the top up snack completely so I pointed out she'd blown my trust a bit on that one. In future she'll have to have her snack beforehand..a real shame as desperately want some flexibility /normality around things like that, for her. I guess she's just not ready though.

@Lougle yeh, weight gain is so damned unpredictable. Can work your socks off going for it and achieve v little or feel like youve failed and come up trumps. As you say, it's not linear but our last 2 week pattern makes NO sense! I don't calc cals for each meal but while she was doing extebded petiods of home leave ftom IP we were fairly consistently hitting 0.4-0.6kg wkly. So 0.1 and 0.9 kg on the same plan is really odd.

I'm quite shocked by that zoo, especially at the moment with covid they certainly shouldn't be touching your dd. I had weight loss induced IBS as a teen, the only thing I can remember helping me was taking time off school/college and being able to eat what I felt like with no pressure.

I definitely wasn't anorexic though, I had anxiety first which made it hard to eat and not eating then made the anxiety worse. Not eating also properly messed my stomach up which added to my anxiety around leaving the house or eating when out.

I had no desire to be thin or starve myself and wanted to gain weight as knew I was too thin so very different to my dd. I know there's some debate over eating disorders vs disordered eating but I would say my dd has an ED while I has DE!!

Interestingly the treatment really is the same as with weight gain my anxiety lessened and my stomach (whilst it still has its moments 🙄) is fine.

zoo - am really shocked by that - invasion of space/autonomy. Really think you should make a reference to it (if you're up for that of course)

Am so glad we've dropped weigh ins - the anxiety around them was palpable and never knew which way they were going to go...

DD is off to adults this afternoon. Motivation around recovery has dropped a bit - but more positively she is aware of that drop & we've talked about what to do to bring it back up. We think the vomiting was probably a mixture of anxiety and over consumption of water - presumably to literally drown out her hunger cues.

We're upping the challenges too as DD says she knows she's been shying away from them so off to book an afternoon tea in a nice hotel in the next couple of weeks - double challenge really, carbs & cakes plus eating outside the home....

Also going to reflect back on a couple of exercises DD did with CAMHS - one was creating a mind map on what "healthy" meant (physically and mentally) every few weeks we try to look at them again with a view to ticking off how many more 'healthy' states she has gained since she first did it.

Another one I borrowed from twitter - DD wrote her name in middle of a sheet of paper and had a line coming off it saying 'anorexia' and then we filled the rest of the page with everything else DD is - the idea being to give her a visual prompt that anorexia although looming large at times is only ever a small part of her and we can squish it further... happy to share a redacted photo if anyone wanted to adapt/do with their DC...

How's everyone doing? I feel we need a check in so I know you're all okay 🤣

We're plodding on, I'm now off work for a week which I'm happy about, not so sure dd feels the same 😉

She's booked to go on a riding hack this afternoon, we've already had a row about increasing the snack to cover the extra energy expenditure 🙄

I'm fairly sure she's lost weight, she's been very scraping calories off anywhere she can and we've been more active with lockdown easing. It always feels like 2 steps forward 3 steps back with this illness 😕

I am off next week too @Girliefriendlikespuppies
I need to get DD some new clothes as she has grown only a cm but her clothes were small before... not sure how it is going to go as it’s the first time buying clothes since she has put weight on and the whole process could be fraught with danger.
She also needs football boots which won’t be an issue!
She is now 94% wfh and doing quite well. We still have massive run ins about exercise and she is still mostly v rigid with her eating but her mood is so much better.
We have another week off here to keep the weight going on before school starts. I am sure it will be harder then, she hardly put weight on in school before Easter and now she is at sport weight gain it is going to be harder still.... but then that is not a worry until next Sunday!
Hope everyone else is ok.
Those exercises sound interesting @myrtleWilson part of my DDs issue is that her identity has got so caught up in sport she needs to try to broaden her interests/ how she feels about herself so she is not totally defined by football. I think at the moment her mind map would just say football and possibly hockey...she wouldn’t write anorexia as she still can’t bring herself to admit to it.
Hope the hack goes well @Girliefriendlikespuppies I’d prob insist on the snack or not take her tbh...

Yeah I will lots it's just the constant battle that's a pain.

I'm having the same worries re clothes, dd has no summer/spring clothes and buying new clothes for her is stressful at the best of times 😕

That's great your dd is doing well though, it's nice to have a little break in the clouds ⛅️

We are okay. My Mum took him for an appointment with the nurse on Thursday for height/weight, BP, blood tests and ECG (The ECG had been requested anyway by the hospital paediatrician as he is under investigation for tachycardia). I asked him how he’d got on at the GP surgery and he said they had told him to keep doing everything the same as he doing now, so I called my Mum who unsurprisingly confirmed that’s not what was said at all. However, the nurse didn’t actually say anything other than to make an appointment to discuss it all with the GP.

I’m a bit worried though as they measured him an inch shorter than he is - easy done as his back is really curved and he is never stood up straight (requires too much effort) but when you put his actual height and BMI into the NHS calculator it says 1st percentile ‘underweight’ but if you put him an inch shorter it says 3rd percentile ‘healthy weight’. I really don’t get that as nothing about him looks healthy. But the GP will look at that calculator and then declare him healthy weight as he’s that sort of GP. I spoke to him last summer when he was on around the 4th percentile and said I was worried and he told me then that he was healthy weight. He had blood tests for another problem and which showed he was low on ferritin and so the GP had said he was healthy weight but needed to eat more meat and just kept repeating at me to give him red meat (which he won’t eat). He does like eggs and broccoli though so I give him those. Anyway that’s a really long way of saying I’m worried the GP will fob me off again. Oh and his BP was 120/81 and didn’t really drop when he stood up.

His CAMHS doctor is calling on Wednesday hopefully she will be more helpful.

@NelleBee that sounds frustrating about the height but just keep hustling - for some kids being a way higher weight would still mean they had issues and the bmi or wfh is only a rough measure.

Are there seven stages of this whole process? DD started on the tearful and anxious one, but has moved onto belligerence. Everything is a fight or negotiation. I've now done enough reading to realise that logic is a waste of time and have persuaded DH the same, so we're just doing the 'I know it's hard for you, but you need to eat this' on repeat.

She expressed enormous surprise when we told her we really didn't enjoy the nagging and the battles. 'So why do you do it?' She really thought it was hard for her, but some enjoyable part of parenting for us.

@Girliefriendlikespuppies hope you won the pre -hack snack battle and that DD enjoyed it ! Hard work always fighting isn't it.. We had DDs first footie match this morn after many many months. She was so excited beforehand but hopping furious afterwards because she was only played for a few v short bursts. So rather predictably we had initial snack refusal, threats to "go backwards", tañtrum etc which eventually subsided and after a bit of a pep talk, the snack was eaten. The coach is lovely but, I think, nervous about her doing too much as he's aware of her background.....tricky one.
@NelleBee i hope DS's ob's are stable once you get tge feedback. Dont be fobbed off by the gp though. I agree that the percentile reading is pretty meaningless when you get down to the lower levels. I cant remember where your DS is wfh wise? Cld you point that out to your gp - certsinly if it's anything below 90% or so that's a reason for him/ her to sit up and listen.

As youve been remarking about your DD @Lottsbiffandsmudge, I'm starting to see better mood generally in DD now we're 95% and the dips are less severe thank god. I do see weight and mood as so visibly linked.
@myrtlewilson your DD sounds v self aware and good at recognising when she's struggling more or slipping back. That must be a real positive here. Hope her first (?) visit to adults went ok? Posh afternoon tea sounds like quite a nice challenge to take on!

Re puberty/periods etc we had a paed consult yesterday for DDs hormone growth/ status that was set up for us by her IP team. Was frankly pretty pointless - the cons more or less confirmed what we knew - that A.N will have put her hormones "to sleep" while her body prioritised brain/ heart nutrition. So periods/puberty will likely be delayed (hopefully not too much )- but time shld sort things out provided she continues to recover. Although no great revelations, it was useful for DD to hear from a diff authority, the importance of staying on track for bone dev & as the cons put it, " becoming a lady".

Yeah we've been through those phases valley, have you had the 'I hate you' one yet? That's fun 🙄

Dds mood is generally better but mentally she's still very stuck on 'I don't want to gain weight/be fat' mentality which makes increasing food really hard. I find myself getting increasingly frustrated as I'd like one day of not worrying about it!!

She enjoyed the hack, she's had her usual snack and a slightly bigger lunch than usual 😕 so nothing much extra really. On Monday we're going to the beach for the day and I'd really like her to have an ice cream as her snack but not sure it will happen...

She put on her jodhpurs that's she's had for about 4 years and they still fit her fine around the waist which says a lot.

I can’t remember what @Lougle said his wfh was - 78% I think @Roolet12
By my measurements he is 40.3kg and 165cm (mid December 2007 birthday, the nurse measured him as 163cm and 40.8kg.

I wish my son would go riding again. He used to enjoy it and it really helped strengthen his core muscles (which now seem non-existent) but one time the pony he was riding pulled a shoe and suddenly bolted - how he stayed on that horse hanging off its neck was a miracle but he’s not ridden since (that was about 18 months ago). But I think if he would go for a hack it might really lift his mood.

@Girliefriendlikespuppies just saying hi from the frugal thread. Sending you and all the others here positive vibes. No need to pop back I just saw this pop up so thought I would say hello
X

My gosh @Roolet12 we have had almost identical days..... DD played football this am . She was subbed for 25 mins of the match (usually subbed for 10) and she has had a complete emotional collapse saying she isn’t good enough, she has lost all her skill, no one likes her etc etc. It’s supposed to be a fun activity but it is actually making everything worse at the moment. Her coach knows about the ED but I don’t think that was a factor I am sure it was just her turn for a longer subbing! Anyway he is coming round to chat to her tomorrow. He really thinks the world of her so hoping it will help. She is playing with her other team tomorrow so kind of dreading that tbh.
She plays with boys so it’s physically very hard work and although she is up to it now she is a better weight her confidence is trashed.
Blimey this is hard work.
@NelleBee in no ones book is 78% ‘healthy’ with all the behaviours you have going on with your DS...BMI is so dangerous in this situation there has been a lot in the press about scrapping it.

Apologies for jumping in again, I hope that is OK?

If I posted, or PM'ed, DS3's meal plan for the previous day or two would someone be kind enough to have a look, please? His weight has plateaued. I would like to increase the calories without increasing the volume as he is already eating a lot. I have messaged his dietician, but would like others advice too if possible.

EDNC I don't mind having a look.

That sounds tough re the football Roo and lots, I find that everything matters in a much more intense way generally to dd. So something she might have shrugged off previously is now the end of the world. As you said lots I'm guessing it's confidence related.

Nelle he is definitely underweight so don't let your GP fob you off. Funnily enough dd had a similar incident on a horse about 2 years ago and it put her off for ages. I'm glad she's found somewhere local to go back to now as she really loves it. It would be nice to think at some point she would be well enough to help in the stables....

Dd did really well with dinner; rice, lentil Dahl, naan bread and a Poppadom with a massive bowl of rice pudding afterwards. She ate more than me.

She wouldn't eat one square of dairy milk I offered her though 🤯

We're plodding on. Still can't crack evening meal though. 2700 calories today, 3100 calories yesterday.