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.

Roller the sleepover wasn't this wend, apparently it's in a couple of weeks when the mock exams are over 😕 I would definitely want some communication with the other girls mum to check things like foods been eaten and they've hidden weighing scales away. It's so sad it's come to that but here we are 🤷‍♀️

I've already fallen out with dd this morning as she was annoyed that her Grandad and step grandma are coming over as it means she won't be able to do a long walk 😡 ffs. The selfishness of this illness blows me away, unbelievable.

I have to remind myself that it's the illness, my dd loves her grandad and with out the illness would be really excited to see him 😢

@silkyears - I can tell you no parent ever ends up wishing they'd left it longer to get referred to ED. I kick myself for having been in denial and allowing myself to get fobbed off by the GP, losing a couple of months and a couple of kilos before we were referred to CAMHS. Best of luck and look after yourself.

I'm afraid to say that the threat of the NGT seems to have had the opposite effect on DD than the one we hoped. She now refuses most of the snacks, the yoghurt, the ensure. 'Just put it on the deficit' she says, like it's payments on Klarna. I really hope that the ED clinic meant it when they said after three days, they'd make up the deficit as otherwise it's a meaningless threat. I feel she's gone into a new far worse phase of ED and one that we are powerless against. How do you make someone eat?

We've got an appointment tomorrow at the outpatient meal support place so we'll see what they say.

Girlfriend yep the selfishness and level of self-absorption is off the scale. I hope it was nice seeing the grandparents. I’m sure she didn’t mean it.

Wow Valley, well that threat has kind of backfired hasn’t it? Sorry to hear that. When is the 3 days up and how much of a deficit is there? The ED Facebook die-hard members would have you following your DD round the house for hours on end and shaking her awake at 3am to spoon-feed her yesterday’s porridge. Get that food in by hook or by crook. Not sure I’m buying that quite frankly. 🤔

DD has been a pain today and I’m wearing thin on patience it seems. She’s really anxious about her exam week that starts tomorrow. I get that, I really do. But there is absolutely no pressure coming from us or from the school to even sit them. But no she wants to. School have offered for her to sit them in the learning centre, which she is fully entitled to with her diagnosis. No she doesn’t want to do that either, heavens forbid she accept anything that might make things a little easier for her. No, she just wants to wail and cry about how she can’t concentrate enough to revise and how she’s going to fail the exams. The exams that nobody is pressuring her to even take let alone do well in. It’s like she wants everything to be as shit as it could possibly be. And then bite everyone’s head off and snap and swear at everyone. I’m fed up with it to be honest. Everyone is treading on eggshells, trying to be careful what they say, and it still isn’t good enough.

Really sorry @Valleyofthedollymix the plan is not having the desired effect (yet...). I hope the reality (if cahm follow through) is the scare she needs to move forward.
We've had an ok weekend. Food is being eaten, no tears. First one like that for 5 months. (Don't want to jinx it as still have dinner and supper to go). The change here was just dd wanting to get better all of a sudden . Threat of missing uni admin process in September maybe or even the interest in our (maybe) summer hol or with experience. My money is on the sertraline though. And once she started eaten enough she just felt better.
It has been a very very rough 4-5 months to get here though. Very rough.
Sorry @Rollergirl11 your having tough one. All my kids have exams this week too and tensions are high. I'm expecting it to blow up big time any minute.

Hi everyone, it sounds like tough times for lots of us. @Rollergirl11 that video idea is excellent! @Valleyofthedollymix sorry the ngt threat is making things harder not easier.

DD1 is still struggling. Had breakfast, didn't have morning snack, took one bite of lunch then declared that if she ate it she couldn't eat dinner later. Dinner wasn't terrible. 4 pieces of potato salad. ¾ of a steak. A bowl of raspberry fool. She didn't cope well socially and once we got back she wanted to go to bed at 6.30pm. We've held off for a while because it's too early.

Well I'm knackered, have spent the whole day cleaning and cooking. Dd has been hard work all day and we had a massive blow up as we went out for a walk and she obviously wanted to walk back a longer way.

I said no so she took off without us and I ended up having to send my dad and stepmum back home while waiting for dd. Was so pissed off with her.

Bearing in mind my dads still recovering from major cardiac surgery and my step mum is registered disabled and we're talking about making the walk 10 mins shorter!!

I told her if I had an illness that made me that selfish I would be doing everything possible to get better.... she got home screaming and crying and calling me every name under the sun.

My poor Dad and stepmum looking on mortified.

Fucking great.

Am so done with this.

Oh @Girliefriendlikespuppies

Oh valley & girlfriend how very horrible for you.
SM how old is your daughter? I think dds biggest driving factor is the thought she cannot go to uni in a year and a bit.

She's 17, she's just finishing year 12 @NCTDN .
Missed most of April and may but somehow kept up with school and still on track. I think a lot of 17 year olds have a wobble, whether it's booze or boys (or EDs). Yes being part of the conversations around uni that have started are a big motivator. She's starting to think about her personal statement etc. Whenever she's wobbling now we just say how it's going to take all summer to get her right health wise for year 13.... thank god it's working right now (but I'm v v worried about what happens as she gets closer to WR and/or her monthly start again).
It's going to be a bumpy road... (and I can't even begin to think about her living half way across country at uni with a relapse...) 😱

Yep sm me too. Trying to convince her that Unis close to here would be just as good but she's having none of it.
If it wasn't for COVID we most definitely would not be in this situation. Their year were worst hit

@sm701 & @NCTDN gosh I don't know how you are coping, I couldn't bear the thought of them going to uni in a year's time. That said you have a year to get them "on track" and kick the ED to a distant memory. Just everything seems to take so long in this illness. Do you think your DD's are doing as well as they would have pre this illness? Would you consider getting them to repeat year 12? It would give you another year to kick the illness.

@Valleyofthedollymix So sorry to hear DD has taken the challenge and seems to want the tube feeding..... Perhaps after they come and do it she won't want it again? We were very lucky that our DD saw a girl getting the tube inserted and fed in the hospital and she was screaming and had to be held down by 4 nurses as she was refusing it. It made our DD quite scared of the tube and she has been relatively compliant since.

@Girliefriendlikespuppies What a family visit that sounds like, hopefully, your family knows it's the illness, not the person that is kicking off so dramatically. Doesn't make it any easier to take though.... sending strength

You're right It's not something I can contemplate right now @SoTiredNeedHoliday , but I want her to have her hat in the ring in case in a years time this is all in the past. Bizarrely she has aced year 12, despite being so poorly (and at times with SI). She's still got an oxbridge chance but I think that would be madness to layer on at this time. But who knows in October?
I personally think she should have a gap year (at home, working locally). But will see where she is august 22. I think having a couple of offers in the bag for uni 22 may be motivating and get her through what may be another bleak covid winter. Who knows. These kids have had the crappiest adolescence ever haven't they.

Really sorry to hear about crappy weekends @Valleyofthedollymix and @Girliefriendlikespuppies . I hope NGT threat starts to work soon.

sm701 we're in similar position- Dd should have finished yr13 but hasn't really attended since September and we off rolled her in Jan. due to timetable she's not able to just resit yr 13 so is starting 6th form again. For us it seems the most secure route for her well-being. Even if she had completed the year I just can't imagine her going off to Uni.

We had a tricky weekend - massive hit to self esteem, anorexia voice v loud about no one liking her because she's too fat.. she held firm on eating but self harmed yesterday morning 😢

Oh @myrtleWilson I'm really sorry to hear that about harming. I'm expecting more bumps in road as DD gets restored too. She's so upset about her body getting bigger already. It's so hard. Really glad you have a sixth firm plan. I think being busy (when ready for it) is a godsend for any MH issue. I'm trying to load up summer to keep DD plodding on.

@sm701 @SoTiredNeedHoliday dd need that focus of university. We've talked her out of Oxford as I think the pressure would have been too immense- luckily the course she wants to do isn't that great there.
She's back at college today for the first time. I've got to trust that she will eat - made it v clear that if I'm not convinced she won't be allowed to go.

@NCTDN its so scary though as at 18 you have legal no say in where they go or what they do.

@SoTiredNeedHoliday it can also work in your favour... when DD had to attend A&E a couple of weeks ago as she was 18 she had to go to adults, we weren't allowed with her. She is adamant she doesn't want to be admitted onto an adult ward so that does help in motivation.. (silver linings and all that!)

I'm pissed off because the eating support today has been moved to Teams and apparently there's a waiting list for the service where the deficit leads to the NGT. Which I completely understand, but why then did the nurse very firmly tell her on Friday that if she had a deficit after three days she'd get tubed.

This effing deficit concept has just made things so much worse and they've just confirmed her belief that they had no intention of following through with the threat.

We've just had an hour over her snack with her saying she wouldn't eat it unless I could guarantee she could go to school tomorrow and I said I could only guarantee that if she didn't eat it, she wouldn't be able to go. She said she could risk a 'lose-lose' situation i.e. eating it but not going to school.

Sympathy to those whose children are in y12. DS is in y12 and we've given him absolutely no support/pushing with his university ideas because we've been so embroiled in this.

PS what happens if you turn up at A&E with a non eating child anyway?

@Valleyofthedollymix generally we've been triaged first - blood pressure, pulse, temp, sats, then sent to paeds. They monitor, try to persuade them to eat/drink (last time I took DD1 a nurse had made chocolate brownies for her colleagues, so they gave a couple to DD1 with some diarolyte). Sometimes take blood tests.

If the child is completely refusing to eat they may admit. If they can get them eating/drinking they send them home.

We had a bad experience with A&E , first triage the nurse asked 'why aren't you eating'. I couldn't decide whether to laugh or cry. Then they did lots of obs and blood tests and decided she wasn't ill enough for a medical admission (yet) but could only do one under MH. They confirmed no ED beds in south of England and only option an adult MH bed. (She's 17) It was a very bleak few hours. I couldn't face thought of her on adult MH ward so managed to get her home (at this point DD wanted to be admitted and gade given up).
But... might it have helped DD in her turn around a week of so later?? Maybe....

Valley when i took DD they did obs, blood tests and ECG. They admitted her based on her low heart rate and the fact that she’d been restricting below 500 calories.

I’d be inclined to take her Valley if only as an exercise to show your DD that you mean business.

What an absolute joke with the NGT waiting list. As you say all that has done is shown your DD that they don’t follow through.

Myrtle sorry to hear that your DD self-harmed. Hoping it’s just a blip seeing as you said previously she was doing really well.

Yes @myrtleWilson so sorry about the self-harming, I meant to write that later. It's awful how we can never let up.

So we had a Teams with the therapist and the nurse before the meal support and they seem keen for her to go to school given how few weeks there are left and how just sitting at home is going to make her think about food. But she has to do the 3 meals and the 3 snacks or she doesn't go in the next day. And we're going to have to go into supervise both the snack and the lunch, marvellous (school is 25 mins away). And we don't know until the last sip of Ensure whether she's going in the next day or not.

The meal support was good though, but it would have been useful six months ago. Mistakes in the things we're saying (i.e. we shouldn't say 'well done'), letting her play with her food, letting her shred it, not taking big enough bites etc. I completely get that FBT is the most effective treatment, but it seems to involve emailing a meal plan and then letting entirely untrained parents get on with it. I wish we'd had a few meal support sessions earlier.

I know that the NHS stretched. It's that classic thing with the NHS that we don't feel we can be demanding, but perhaps sometimes we should be as these faults become endemic.