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.

Thanks everyone, you have all confirmed my thoughts that she needs to see a psychiatrist. We have her clinic appointment this afternoon so I will broach it then.

@SoTiredNeedHoliday sorry to hear you’re struggling. It is bloody relentless isn’t it?

@Girliefriendlikespuppies she had bloods done at the GP’s 2 weeks ago but I actually haven’t been given the results. She is taking a multi vitamin and I have just started her on Zinc and Biotin.

I didn't know that about hair loss. That will destroy dd.
What's KW?

@NCTDN you can also get extra facial hair (lanugo) as well as hair loss. The loss is due to low protein in the body.

Cosmetically, surely both of these possibilities would be a good reason to eat in today's world.

Along with all the other serious issues an ED causes of course.

Roller ask the ED team for the blood results, they often pick up things that the normal GP wouldn't necessarily see.

Hope your appointment goes okay.

My dds hair just went very thin and lanky looking when she was at her lowest weight, it's just about back to normal now but it's taken a while to get there.

@NCTDN KW = key worker

We took DD3 to a meeting yesterday around 125 miles away and thought we'd make a family day of it, meeting up with their aunt and uncle who live 30 minutes away by train. DD1 did not have a good day. Impulsively trying to take things from a service station display, refusing to drink the milkshake the uncle bought her, trying to steal ice cubes and lemon from my drink, refusing lunch (ate 5 or 6 chips in the end), begging to go home almost as soon as they had arrived. It was dreadful.

She went to school today for performing arts and the teacher said she had to give the whole class a 5 minute break because DD1 wouldn't take a break when she asked her, and in the end she got the whole class to play games just so that DD1 had to sit down. It's going to be a long road to full school attendance.

That sounds v tough @Lougle

Currently outside A&E as Dd vomited blood earlier - she has ongoing stomach/digestion issues from the anorexia. But now shes 18 she's in there by herself 😢

Oh no @myrtleWilson! I hope you get an update soon and that she's ok.

DD1 wouldn't eat dinner tonight. I've told her she isn't having her tablet for the rest of the night, so she's said she'll just go to bed. So I've said she's not having it tomorrow morning either. She then said she'd used the toilet and she was sick 'a bit'. I'm tired of this stuff.

Ahhh Lougle that sounds like it was stressful.

Well we had our clinic meeting and it was as underwhelming as always and DD and I both left feeling deflated and defeated.

I expressed my concerns about DD’s mental state over and over and said that I think she needs to see a psychiatrist. Care coordinator said that she will see the psychiatrist as part of the treatment review but that’s not for another month. She basically implied that the way DD is feeling is normal for this stage in the process and didn’t seem interested in offering any suggestions. She said that her mental state wasn’t impacting on her eating so that was good. DD took that to mean because she isn’t refusing food or throwing things around or being violent that they don’t care how bad she feels.

DD has only put on 500g in 2 weeks. Care-coordinator said that the minimal gain could be down to DD’s return to school and half term last week with a bit more activity but if she only gains a small amount again next week then we will need to make some changes. But then in the next breath, whilst trying to think of ways to lift DD’s mood (in order to get around my request for DD to see a psychiatrist) she suggested trying to see more of her friends outside of school. When DD said that it was tricky because everything revolves around her meals and snacks she said that perhaps DD could be trusted to eat herself when she’s out with her friends in order to help her with her mental state. I nearly hit the roof when she said that!!

Then to top it all off when I asked if they were only planning on providing 8 weeks worth of sessions before they discharge us she reluctantly said yes. I said that how could they contemplate discharging DD if she wasn’t weight restored by then because chances are she still wouldn’t be in a good place mentally. She didn’t give me an adequate answer. I truly don’t know what DD is getting out of these sessions!

And now DD has had a panic attack this evening because she got herself in to a state over the fact that she has her Year 10 mocks in a few weeks and she can’t concentrate enough to revise. She says that she wishes for just 1 day where she doesn’t hate herself and how greedy, fat and disgusting she is. It breaks my heart to hear her talk about herself in this way. And yet it seems that because she isn’t harming herself or others she doesn’t warrant access to a bloody psychiatrist!! I am so angry!!!😡😡🤬

Oh no myrtle, sounds scary! Are you not allowed to accompany her because of Covid restrictions?

Lougle it sounds like your DD is having a bout of not cooperating. Do you think she was really sick or do you think she was trying to get a reaction out of you?

Roller that all sounds really shit, it seems like a complete postcode lottery in terms of what support you get 😡 are school being supportive?

Myrtle that doesn't sound good 😕 are you 100% sure she hasn't been purging?

Lougle, me to mate. It's so shit and very wearing.

Gosh it sounds like people are having some tough days at the minute. I do think like pp that it's a lottery for care depending on where you live.
Where is everyone based? I'm in the north west.

@Rollergirl11

Oh no myrtle, sounds scary! Are you not allowed to accompany her because of Covid restrictions?

Lougle it sounds like your DD is having a bout of not cooperating. Do you think she was really sick or do you think she was trying to get a reaction out of you?

I'm really not sure. She has been saying she feels unwell for a few days. I'm just fed up of it all. She holds me hostage to buying chocolate croissants every day - won't eat cereal/toast, won't eat the volume needed even if she did, and I have 2 other girls to get to their drop off point before 8 am. Then she whines and moans about going to school for 1½ hours - never mind the fact that it's muggins here sitting in the car park. Then if I say anything she says 'Well I didn't ask you to force me to eat/force me to go to that stupid place...' as if I have choices.

roller - I know how frustrated you must feel - I hope you can find a route for some psych support for your DD.

We're home - 4 1/2 hours at A&E - all okay, bloods were good (its been months since we've had bloods done!) I don't think she was purging - it isn't really her 'thing' although I obviously can't rule it out 100%... She was pretty freaked out initially by the blood and I would have thought in that scenario she'd be honest (but I've been proven wrong before)

Anyway, we'll chat over tomorrow - her first question on coming out of A&E was "whats for dinner" - so here we are at midnight making cheesy pasta.....

Sorry everyone is having such a tough time. @Rollergirl11 I would complain formally to the head of the ED team copying in your CCG who are paying for these 'services'-. Your DD is being denied access to appropriate care in my opinion. It is not the care coordinators job to decide if your DD is suitable for meds only a psychiatrist can do that. Explain that a months wait is not tolerable and that you need the input now to avoid jeopardising the progress your daughter has made. Lay it on thick. Experience has shown you have to shout loud and be a pain in the arse to get the right care.

Glad your DD is ok @myrtleWilson and great news she wanted to eat! It shows how far she has come.
@Lougle that trip sounds v stressful.
In our news it looks like DD may have broken her foot or severely damaged it. A girl landed on it during her last Arsenal session a week last Thurs but typically for am exercise compulsive DD carried on with her full program and didnt say anything and then we were v active on holiday. Now she can hardly run...and she has her final trial next Tues. She has worked so hard to get wr (put on 500g on holiday!) And has a lot of fun sport lined up and now it looks like she will be laid up... she is already panicking about getting unfit and losing her football skills.
She played last night but it was v painful and is now swollen again so minor injuries clinic tomorrow for an cray to find out the extent of it. DS1 tilled his ankle at hickey last eve as well. Which wierdly has helped DD. He is also distraught. Both in middle of exam week.
God I have had enough. Seeing ED KW today so can chat about cal levels if she cant move..... whole new ball game for me... it sounds so trivial compared to what some of you are dealing with but it feels like one thing after another...

Rolled his ankle at hockey....

@myrtleWilson glad she is ok.
@Lottsbiffandsmudge what %wfh was your daughter allowed to do sport again?

We've got a weight check later but it will be after lunch so hard to compare exactly to last time.

@Rollergirl11 I agree with Lots I would formally complain as I don't think you are getting the right care either. Your DD was saying she felt it would be better not to wake up that's surely enough to get her in to see a psych. On the exams would it be possible to have her excused from them as she will not do her best, there is no way that she can and arrange to sit them at an alternate date in October or November perhaps or they look at what she has done already and use that data instead?

Our Nurse specialist wrote a letter to the school explaining that DD can't focus properly due to her weight and that if she were to sit an exam it would lead to more anxiety as DD knows she isn't her normal self. The results would also not be reflective of her ability and therefore possibly a detriment to her.
The nurse also has had two zoom calls with the school explaining how to help Ellie and what support is good support etc. So my DD is doing no exams this year as she has enough she's anxious about already. As do we all....

DD has been terrible for the last 4 days. So negative, I can't get her dressed, shes been refusing meals here and there. It's overwhelming that's for sure.

@NCTDN when lockdown lifted for sport and DD could go back she was around 93% wfh

We're having a torrid time too. Just come back from sitting on a dusty war memorial round the corner from school in a total standoff with DD about eating her sandwich. She claims she'd already eaten one at school. I just didn't know what to do, plus the clock was ticking on me getting to the dentist on time and avoiding paying a £100 late cancellation charge. I did that thing you do with toddlers of cycling through threats, bribes, blocks. Was utterly futile.

She's really kicking off and constantly telling us that she can't 'give in' to us again and why don't we ever 'give in' (I'm bloody constantly giving in, if I didn't she'd be weight restored by now).

@ItRainedForever sorry that you're here. Please don't beat yourself up - there were so many warning signs with DD but I was in denial. When I said this to the paediatrician, she said every parent feels like this.

@Rollergirl11 we didn't have to push for meds, they were brought up as an option early on and when she plateaued they made an appointment with the psychiatrist who seemed pretty prescription happy. Mind you, they seemed to have made little difference.

@Valleyofthedollymix it's so tough when there are time pressures....that's why lockdown was easier.. no where to go or be....
Its v like having a toddler all over again but with hormones...and they dont ever go to bed to give you a break....
In all seriousness tho I say to my DD that I never give up (or let up as she calls it) because she is worth saving from this hideous illness. And that if I give up this time the ED will have more power and I ain't giving it that.... I am hoping this eventually filters thru and she stops hating me...she may never. .. but I'd rather she hated me and be well than the alternative. It is such a drudge tho day on day out ....

It's all really hard. We stopped DD1 from having her tablet as promised last night. She went straight to bed, as she said she would, so we said 'fine, but you're also not having it before school tomorrow then.' This morning, after visiting Mum and Dad, we came home. An hour later I went to her room to take her to school and she'd gone to sleep again.

At school she was quite unsettled. She went to the pastoral lead and said she couldn't understand two words the science teacher used. I asked her later what she'd been learning and she said 'circuits'. I asked what the tricky words were and she said 'pallyalale I think...' Obviously parallel and series, I think, but poor girl can't even say them let alone get the concept of circuit types.

@Rollergirl11 we were also offered meds straight away though dd refused them. I'd push- you know her better than any professional.

Lots I'm sure you've said at some point your worst nightmare was dd injuring herself 😬 I personally would keep the food exactly the same. For me it would be an opportunity to challenge some of those thoughts around exercise and food (easier said than done though!)

Valley I think I'd be tempted to take your dd out of school for a bit and go totally back to basics, once she is eating 3 meals and 3 snacks that are high calorie consistently then think about school (again easier said than done 😬) I agree with lots don't back down, on the fb page one of the mums said she persisted for 23hours in getting her dd to eat something 😳 now I know I would have (and have done previously) cracked after a couple of hours but it did make me think!!

Well dd had her weight check, she has maintained 57kgs, I got myself into an anxious wreck before hand as was convinced she would have lost. I am relieved and also more determined to keep going with tons of high calorie food.

So tonights dinner was salmon in a rich cheese sauce wrapped in puff pastry with chips and veg. Pudding was a large slice of cheesecake with double cream 😋 Dd did well with it and I reckon the meal was around 1400 calories ish.

My big news is that when dd went to bed I shouted up 'goodnight I love you' which I do every evening and tonight for the first time in well over a year she shouted back 'Goodnight I love you to' 😭

Our girls are in there somewhere, they just need us to help them escape the ED nightmare.