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.

Aww girlfriend how lovely- I would've been in bits at that.
What's your situation re work? I'm currently signed off sick but know this isn't a quick fix so what does everyone do?

NCT I was signed off twice, both times for around 6 weeks. It was essential in terms of getting my head straight and focussing on getting the food into dd.

I know some parents have to take much longer and some have to give up work altogether 😕 I think there are some benefits you can claim for being a carer of an ill child.

@Girliefriendlikespuppies well done for the maintain and lovely to hear your DD responded to you.

@Girliefriendlikespuppies it’s safe to say the injury is challenging....had an X-ray today and no obvious break so now of course DD thinks she can just play again...despite the swelling. And pain... anyway I have cancelled her hockey tonight and will make her ice it and sit on her bum as much as possible....she is also home missing games...
Love that your DD shouted that!
My Dd put on 600g over the last 2 weeks....amazingly....so I am slightly slimming the cals down again. And as she is inactive at the mo doing it a bit more too... KW said not to drop the structure so stay with 3 and 3 but cut portions etc down. So I am doing that.
DD only wants to eat when she is hungry....which is code for I won’t eat when I am not hungry but won’t eat anymore when I am. So that’s a flat no....
She was on 2700 cals a day avr last 2 weeks. Slimming it to 2500 a day when active and 2100 a day if not. At least that is the theory.
Also moving to fortnightly weigh ins which is a blessing.

If she's still gaining weight lots I'd go with it, it might be that she's gearing up for a growth spurt. I think your dd is around 13? Which is when most teens gain a bit of extra weight in preparation for going up height wise! I've got a feeling the calorie requirement for an inactive teen is still something like 2500 (I may have that wrong but I'm sure I've seen that somewhere!!)

That's great she's not broken anything though, hopefully rest and ice will do the trick.

Dd came home from school upset ystd, in her DT lesson they've been told the big GCSE project with be nutrition and fitness 😩

Of all the lessons I was worried about bloody DT wasn't one of them.

I'll write an email but I doubt it will make a difference, it's so frustrating. I really feel there should be more awareness in schools about EDs and why these subjects might do more harm than good.

That's frustrating @Girliefriendlikespuppies. I wonder if they could change it?

DD1 was hard work yesterday. She was meant to do tutor time, English and Maths. I heard her tell the teacher she was really tired after tutor time, then she walked over to the fence and told me that she needed to go home. I sent her back to her teacher. Then after English, she appeared at the car - she'd told a teacher she was exhausted and needed to go home, so they let her. Trouble is, we're no further forward with reintegration. If they left it to DD1 she wouldn't go to school, let alone increase her timetable.

Then at lunch she was really angry with me because I wouldn't make pancakes. We walked to a shop and she started punching displays, fridge doors, etc., so I had to restrain her. Such hard work.

Well to join you, the honeymoon period after hospital has ended.
I'm frustrated as despite being in for refeeding, she's no other support due to waiting lists. I'm researching private people/ companies to help with the issues regarding food and anxiety. Does anyone have any recommendations?

@NCTDN its tough isn't it! I found the beat website good, particularly this page search for help by postcode I found a specialist dietician with excellent experience in ED who I can see privately and she's local. There are also psychologists etc on there.

@Lougle I'm so sorry you had such a tough time, I wonder what it is about school that is so anxiety driving for your DD? I forget what year she is in.

Would she tell you or someone how she is feeling about school and what she feels while in school? Does she feel people are looking at her differently? Or is someone perhaps saying the wrong thing?
Or do you think she might be becoming attached to you and being at home?

I'm quite worried that my DD might be doing this at the moment, even though she "hates" me and "I'm ruining her life" she can't stand to be away from me too much.

When she did go back to school I had talked to the school a lot about what wording to have and even that she couldn't be in class with certain pupils as they had previously been too intimidating for DD as they have in the past body shamed her "for looking too good" but of course DD took that as her being ugly etc.....

It's hard to know really. She said today that she already 'felt amber' (traffic light emotion scale) because of the thought of going to school. She said that she was worried about being bullied. I asked who was bullying her and she said 'all my haters'. I asked who her 'haters' are, and she said 'Everyone. I don't have any friends at all really.' But they all call out to her when she arrives and ask when she'll be back full time.

thats the same as what DD says but everyone is so happy to see her. All it takes is a slightly trigger comment or someone looking the wrong way and its just too much to cope with.
Even someone saying you look good or you don't look sick is enough. Its a minefield

The anxiety of others disapproval is so tough... no words of wisdom I am afraid. DS1 struggles with this a lot. And comparing himself to others. There aren’t any easy answers.... I tend to say that if he thinks everyone is thinking about him he has an over inflated sense of his own importance as actually probably no one is thinking of him.... iyswim...
So after DDs X-ray yesterday which didn’t show up anything major the GP has called and said the radiologists report suggests the suspicion of a callus in the 2nd meta tarsal...ie it’s a healing fracture.
Pardon the French but ‘shit’....
Waiting for a call from the fracture clinic which GP has requested urgently to discuss timescales.
But I cannot imagine we will get the green light for her final Arsenal trial on Tuesday. So now I have to see what they say. Seriously she cannot catch a break. (No pun intended).
Up to now we have managed 3 days with no activity and she is still eating. If we are faced with a few weeks it is going to be testing in the extreme. Big girl pants. I am not telling her until after school (she is home for lunch) as she has a Spanish exam this afternoon ooon....

Hello, I’ve spent quite a while reading posts on this thread as we’ve just discovered that my DD(15) has an ED. She has been restricting her food for the last 3ish months, she has cut out breakfast, lunch and all snacks and only eating dinner. I’m not sure if she’s lost any weight (though she definitely isn’t eating enough) as she hasn’t been weighed for several years.

She has had a telephone consultation with the GP who has sent a form for her to complete and eligibility criteria for referral to the local Family Eating disorder team. We haven’t heard back from the GP yet, but I’m not sure she will be eligible as we can’t track any weight loss. I’m actually quite cross the GP has told her to figure out herself if she’s eligible for referral! Her BMI is fine, but I’m a bit confused about the wfh calculation and how to measure this.

I’ve also been in touch with our local mental health self referrals team but they said to go to the GP first.

I really want to stop things getting any worse (I suspect I may be completely delusional here!) but I don’t know what to do and where to turn for help.

I’ve found a private teen eating disorder counsellor and have booked in an initial session for DD. She won’t (or can’t) speak to me or DH about the ED so I’m hoping this will help her.

My DD seems a lot happier since we know about her ED and I think is relieved that we’re getting help for her. I don’t think things are helped by her finishing her GCSEs and having nothing to do now until September.

Sorry for the lengthy post! Any suggestions on where we can go for more help and information? I just don’t know what I can be doing at home to help her. Should I be making eat three meals a day? I’m not sure how to actually do this as she just refuses to eat (or lies and says she already has).

lougle NCTDN lotts - so sorry for your stressful times at the moment.

girlie What a lovely moment re the goodnights - you're right sometimes when you/we most need it we get a glimmer of our DC hidden underneath the suffocating ED and what a boost it gives us.
Re DT topic - do write to the school. I agree with you on the need for more thoughtfulness in schools around messaging on food, health, nutrition and fitness. As part of her discharge from CAMHS my DD wrote a letter to Matt Hancock, Nadine Dorries, the George guy who is Boris's mental health and young people lead, our MP setting out her views about the need for better and targeted information about ED's including the need for joined up thinking in schools. None of them have replied mind but was very proud of her for doing it...

@SilkyEars welcome to the thread but of course we're sorry you've had to find yourself here. lougle is super generous on working out wfh calculations so I'm sure she'll help out with that query. In terms of where else to go - there are sites like BEAT, and Eva Musby which are useful starting points. Some of the posters on here are also on a Facebook group (I forget the name of it sorry!)

Be prepared to be a very loud persistent voice for your DD. Have you read on here about re-feeding syndrome? If not, we can talk you through it - but given your DD's severe restrictions, you'll definitely need bloods done to check her bio-chemistry isn't out of whack. Eating too much following restriction can be very dangerous.

Again, welcome and please do ask away - we've all been where you are now...

@myrtleWilson Thank you so much, it feels better to know there are lots of others, very sadly, in the same boat. I have read a bit about refeeding syndrome, and think I need to push for the GP to see DD.

@SilkyEars I agree you need to get your DD a full check up to make sure she isn’t in danger of refeeding syndrome.
If she has cut out all meals except dinner she will have lost weight! And in any event her weight/ BMI and wfh are irrelevant it is the behaviours that matter. Has she been restricting below 500 cals? If so take her to A&E with MARSIPAN guidelines an’d get her checked there urgently, I would link them but I am rubbish with links..if you google it they should come up.
In terms of help I am sorry to say it is a case of getting yourself clued up on treating an ED at home. A FEDs team are likely to offer a weekly appointment (on line or in person) when they will ask how the week has gone and not much more. They may provide a meal plan. Then it is all down to FBT (family based treatment) which basically means getting food into them.
Once her bloods etc are cleared I would just start because waiting for help just delays matters.
I would start be removing her from the kitchen, taking away any control of food, and getting 3 meals and 3 snacks in a day. If she has been heavily restricting you could start quite low c 1200 cals a day and gradually increase. But the aim is to get weight on them until the AN backs down.
This sounds so easy in theory. It’s shit tough in practice. You will face meltdowns, hysteria possibly violence. Watch for secret exercise, purging, self harm. Be v v vigilant and do not assume your once trustworthy Dd is that way now. The ED is not trustworthy. The Ed does not want your daughter to get better, you have to help her do that by being stronger than that voice.
The FB group Myrtle mentions is EDSUK it is a great group,with brilliant support and lots of helpful files which go into all this in more detail.
If she has only been restricting for 3 months that is good as the quicker you reverse it the easier recovery is. That’s why I would not wait.
Good luck and please stay around and we can help if we can (not professing to be an expert btw but I have read a lot and talked to a lot of folk!)

@SilkyEars so sorry to hear this. I know exactly where you are coming from. Dd is a year older and all this started when her GCSEs were cancelled and she had lots of time stuck at home. I never noticed any weight loss until it was suddenly very apparent as she is extremely slender anyway.
I'm a relative newbie - only been on here less than a month- but the support has been fantastic. Thank you everyone.

@ Lottsbiffandsmudge Thank you, I really appreciate your help, I’ve spent the day reading about EDs, crying and feeling helpless. I just need to get a plan of action in place now.

Silky I echo what lots has said, do you work ? You may need to think about taking some time off as initially refeeding is a full time job.

I would sit your dd down and tell her as from tomorrow you will be taking full control of all her meals, you expect her to eat 3 meals and 3 snacks a day. Use whatever leverage you can (phone/seeing friends etc) If she eats dinner cram as many calories in as possible, everything needs butter and double cream in it!

It is a f**king nightmare I won't lie but essentially food is medicine and you have to be the one to administer it. Expect screaming, swearing, violence as once challenged the ED kicks off big time. Try and separate your dd from the ED who is basically holding her hostage.

I agree she needs to see a Dr for basic obs - bloods, pulse, bp and ecg are the minimum they should do.

@SilkyEars I spent nearly all my time in the early days feeling like that with a healthy dose of guilt on top. For me taking control helped to reduce the feelings of panic although they are still there.
If it’s a help my DD is now 2 stone heavier than her low point on Xmas eve. She went down to 5 at 8 and is now 7st 8. The difference in her mental state is like night and day,
Just take the first step. And keep taking them. Recognise you will not get it right all the time. Separate the Ed from your daughter, understand that she is in there trying to get better but the ED has her hostage.
Today despite all my DDs current difficulties with her injury (which for an exercise compulsive/ sport mad person is mega hard) and the grief over her dead guinea pig my DDs best friends mum said that her best friend had got home ‘buzzing’ as my DD had asked for couple of her friends crisps at break time and eaten some skittles that were offered to her.
Such small victories feel enormous and will happen to you too.

Thanks again. I do work, and feeling guilty that I’ve been so busy with work that I haven’t noticed this happening to my daughter. So sad that there are so many of us on this journey with our children, but I am feeling a bit more positive talking to you.

@SilkyEars sorry you're joining us. If you want to PM me your DD's weight, height and date of birth, I'll tell you her weight for height, but as others say, the rate of weight loss is also important, even if she is not actually underweight.

I've just weighed DD1 (forgot to do it on Thursday) and she's up to 51.8kg now (93.94% WFH). That's 4½ months since admission, with 14.5kg gained.

That's great news @Lougle . My DD has turned huge corner since setraline kicked in and is finally gaining (2kg in two weeks). And I saw a smile!!! First one in months.
Dear @SilkyEars I'm sorry you too find yourself here. It's a terrible time of worry but the support here is a amazing.
I've been to hell and back it feels like in last four months, but signs of recovery are finally here. Never give up hope. You will be everything your child needs and find strength you never knew you had. X