Teen Eating Disorders - Thread 6

[myrtleWilson]

Hello everyone, and welcome to anyone looking at these threads for the first time..

Here is a link to thread 5 www.mumsnet.com/Talk/eating_disorders/4360801-Teen-Eating-Disorders-Thread-5

We've seen such an increase in young people facing eating disorders and these threads are testament to that.

With that in mind, we thought we'd try to include at the start of each thread some resources that have helped us along the way to date. No one resource will be a panacea but hopefully this list will be a useful starting off point for any newcomers and a reflection for others. It is our first go at sharing a list of resources on a thread so it won't be perfect!

www.beateatingdisorders.org.uk

anorexiafamily.com/?v=79cba1185463

www.youtube.com/evamusby

www.youtube.com/channel/UCa7G1P5WQopVMc9qTSP_lgA

www.orri-uk.com

www.nhs.uk/mental-health/feelings-symptoms-behaviours/behaviours/eating-disorders/overview/

www.stgeorges.nhs.uk/wp-content/uploads/2019/01/Junior-MARSIPAN-Risk-Assessment-Framework.pdf

Nan I wouldn't be happy on them discharging your dd unless you are confident that she will eat 3 plus 3 at home. I also wouldn't be happy about that plan on only readmitting if she's physically compromised.

Have you had much contact from the ED service, what support are they going to offer on discharge?

Dark I'm sorry things are so hard again, this illness pushes you to the limit. Please look after yourself, you've done so well to get your dd this far, you're an amazing mum (as are we all!)

Roller what a lovely update, I'm so glad your dd is doing better. My dd has prom this year as well, I haven't started to think about dresses yet!

It's my dds 16th bday tomorrow, I can't really believe it. How is my baby 16?!

@girliefriend - I'm very, very nervous about discharge given she turned down her first meal post removal of the tube. It wasn't really helpful also that the consultant said that about only coming back in if physically compromised. DD of course heard that as she wouldn't have to come in 'for a long time' if she refused food at home. She says she 'knows' that the ED will want to regain control because she's lost so much control in hospital . I do know that therapy is only going to happen once weight restored. And I worry that we might go round and round with "discharge - food refusal - weight loss - readmittance". Though I might be catastrophising....

I hate to say it but I don't think you are Nan 🙁** are you on the fb group? They will be able to give you some good advice on discharge planning etc.

Sorry to hear some people are finding it tough.
Dark it's been ages since you've sounded so down. You're doing a fabulous job It gets to us all.

@NanFlanders id be amazed if alder hey send her home this weekend. It sounds far too early especially if she's resisting eating. I'd do everything in my power to keep her in.

@butterandcheese was the dietitian an ED specialist? DD saw a general dietitian who was really lovely but didn't realise the extent of the problem for months.

What a lovely update roller
I’ve no advice for others so sending best wishes.

I'm asking for someone else.

15 yo female is 5'5" and 7 stone.
Is this 82% wfh?

8 stone 7 would be about 50th centile.

She is already under CAHMS and I think that's the route she needs to continue with if she needs ED support?

Thank you

@TheOrigRights

I'm asking for someone else.

15 yo female is 5'5" and 7 stone.
Is this 82% wfh?

8 stone 7 would be about 50th centile.

She is already under CAHMS and I think that's the route she needs to continue with if she needs ED support?

Thank you

She probably needs to be under an ED specific team as they can advice on FBT and keep an eye on the physical side of things.

It's dds 16th birthday today! She loved all her presents this morning and even told me she loves me 🥰

I'm a little bit worried that her period seems to have disappeared, she's definitely not pregnant (!) and from what I can see her weight seems about the same. No obvious restriction in what she is eating.... it's not beyond the realm of possibility that she's not eating that much at school though obviously.

Does the worry ever end?! It was just after her 14th birthday that dd started restricting food 😕

Thank you puppies.

I suppose my question is how my sister (that's who I'm asking for) asks for that support and is it needed at that weight?

Via the current CAHMS support, or go back to her GP?

My sister said my niece was weighed and told she was OK, but I'm not sure where that was - CAHMS I think. She is aware that early intervention is key.

I hope I don't come across as callous here, but my niece has a history of copy cat behaviours - just enough to trigger intervention and attention. She's completely open about how little she's eating, how she wants to be hospitalised...pushing and pushing my sister.

Obviously that's a big concern in itself, but the treatment would be different...UNLESS she continues with the unhealthy eat behaviours and spirals down. Hence the early intervention.

@TheOrigRights

Thank you puppies.

I suppose my question is how my sister (that's who I'm asking for) asks for that support and is it needed at that weight?

Via the current CAHMS support, or go back to her GP?

My sister said my niece was weighed and told she was OK, but I'm not sure where that was - CAHMS I think. She is aware that early intervention is key.

I hope I don't come across as callous here, but my niece has a history of copy cat behaviours - just enough to trigger intervention and attention. She's completely open about how little she's eating, how she wants to be hospitalised...pushing and pushing my sister.

Obviously that's a big concern in itself, but the treatment would be different...UNLESS she continues with the unhealthy eat behaviours and spirals down. Hence the early intervention.

It is a low weight and low wfh. Your sister would need to speak to the GP in the first instance, get physical obs checked including bloods, ecg , pulse and bp and ask for her dd to be referred. How much does she eat roughly in a day?

Is there any chance she could be autistic? Eating disorders are very common in autistic teen girls and the copy cat behaviours sounds a bit like my dd (who I believe is autistic despite being told she's borderline by Camhs 🙄)

Your sister will also need to start reading up on family based treatment (FBT) she could join the EDSUK fb page which has done useful files to get her started.

Thanks again puppies.
I should have said...yes, she has a diagnosis of autism, PDA to be precise, though I'm not entirely sure. I know the PDA diagnosis happened a few years ago, but whether that's now changed I'm not sure.
I am not experienced in autism spectrum disorders.

My niece had a CAHMS appt yesterday which apparently went very well, so my sister is really hoping she will engage before things spiral.

I had one period when I was 14 (my first ever) and another one almost a year later at 15, followed by a regular cycle kicking in at 16. My eating definitely played a part in that, but I was at a girls' boarding school and it didn't seem that uncommon for periods to go AWOL for long stretches. I remember the school nurse having to reassure a few worried girls about that. It's worth getting your DD checked out to be on the safe side, but it might be that she would have a very erratic cycle even without the ED history.

Just want to say a massive thank you to you all! You’ve really helped rescue my DD. With all your help and advice, previous posts regarding your own DC, everything has been incredibly informative and eye opening; making me appreciate the nuances and the hold an ED can have.
DD has finished the ‘extended’ 2 week review today and the clinic has decided she doesn’t have an ED. 🎉 She was 78% wfh but with 3+3 etc has gone up to 83%. She’s putting in a lot of effort and is determined to gain so that she can return to her sports. I do think that she came close to an ED taking hold and thoughts becoming distorted. But due to your help and those on FB I think it’s been stopped in it’s tracks.
We’ll be watching though, continuing 3+3 etc and being very vigilant so it doesn’t try to sneak in. I wish you all and your DCs the absolute best xx

That's a really lovely heartening post @Complexneeds! Best wishes to you and your dd

@ComplexNeeds that’s excellent that she’s done so well. What do you think you will do ref the meds going forward?

Hi everyone, I’ve struggled to keep up with the thread lately. Things have been really busy here and I think the past few months are also catching up with my DS who is 12. He’s struggling too at the moment and seems to be constantly falling out with his friends and basically aggressive and constantly ready to fight! It’s exhausting to be honest.

I wondered if I could ask for some advice though. Dd is doing reasonably well. She’s grown a cm, is 87% wfh and back at school full time. She had a good gain the first week back at school but has basically stayed the same since. She’s around 48.8kg. Her mood is generally good but there are down days too. This week she ate a big bowl of porridge with strawberry jam for breakfast and this was the first time she’s not had weetabix for months!! Small steps but progress all the same.

The problem I have and I’m worried about but not sure if I should be worried is that two of her best friends have now also have developed eating disorders. One now sees the same Ed nurse weekly as my daughter. Should I be worried, should I do anything or just leave things be?

I’ve heard that sufferers can almost compete to be the thinnest, most poorly. Any advice would be gratefully received. Thanks x

[quote Rollergirl11]@ComplexNeeds that’s excellent that she’s done so well. What do you think you will do ref the meds going forward?[/quote]
@Rollergirl11 the clinic recommended she stays off methylphenidate until weight restored but that could be months as she’s currently 83%. I do agree that weight is the priority and not her adhd. But she gets very overwhelmed and more likely to have meltdowns without meds - they were surprised by this and that the meds helped, they also said a few other things that makes me think they don’t know anything about adhd. But, we intend to keep her off them for the time being. It’ll be difficult as without them she’s more anxious, defiant, forgetful, disorganised so I feel I have to constantly nag about every tiny thing. To stay off until weight restored could take ages as she’s only 83%. And with sports back on this means even more calories and more prompting (nagging).
Also with sports back on Im fearful the impetus to gain weight will wane. She’s got her carrot now; it’s no longer something she needs to work towards. Albeit she knows it can be taken away.
Anyway, no meds over half term and then first few weeks back at school. I also want her meds free back at school as the packed lunches, snacks & late dinners could raise logistical issues and if she’s not eating I want to be sure it’s her/logistics and not the meds confusing the situation. I’m also wondering once she’s weight restored how this with effect her adhd. Surely a nourished brain will help. It’s very much suck it snd see. But I’m hoping we can go med free for as long as possible. If it’s not possible then we’ll look at a split low dose regimen (5mg after bfast + 5mg after lunch) and failing that non-stimulants.

Hi Betty that's really hard with your dds friends, have the clinic offered any advice? I'm honestly not sure what the right thing to do would be. I suppose it would depend a bit on where they all are in the scheme of things. If there's any hint of competition to be the most ill or eat the lowest amount I think they'd have to be separated especially at break and lunchtime.

When I was at college my best friend was anorexic, I had very disordered eating and two other friends also had EDs. I think unfortunately EDs are so common in teens it's almost impossible for them to avoid meeting other girls (or boys) that are struggling.

My dd has a friend who is a trans boy and is very under weight. I know dd does find it hard at times as he rarely eats at school 🙁 and his parents seem oblivious to the issue.

Dds period turned up a week or so late, she's normally very regular so it is a bit weird but I'll keep an eye on it. Yesterday she admitted to not eating a snack at school so asked if she'd have to have another one! I was amazed she admitted and asked, the answer was obviously yes!! Felt like a step forward 😊

She's having a bday sleepover tonight and has asked if they can have some alcopop type drinks!

Thanks @Girliefriendlikespuppies they seem to be early stages perhaps whereas dd is more at recovery stage. You’re right it’s probably very difficult to avoid as they are so common particularly as we come out of the pandemic.

I’m worried because the one girl has been my daughters friend since she was very young and has often been quite cruel to her. She’s being cruel now and dd was upset last night.

My dd had a party last month for her birthday and some alchopops were had. She had a great time and I hope your daughter does too. X

Lovely updates from @Rollergirl11 and @ComplexNeeds. How are you doing @NanFlanders - our experience is that hospitals tend to discharge once immediate danger has passed - although in our case that just set us up for a rebound readmission cycle.

Hope everyone's weekends were good and it not good then okay, and if not okay - well done for getting through.

DD is doing okay -she has been massively exhausted so bloods done at GP reveals as expected v v low iron so on an iron push (complicated by fact that previous iron meds had a bad effect on DD's digestion which she is under hospital treatment for - GP was good though and has modified dosage and if no change we'll look at infusion etc).

Other than that she's doing well - her gym sessions are helping her mind/perspective on her body so much - she desires a strong body not a skinny one and she's eating a lot better now. I wouldn't say she's free eating completely as she's focused on protein etc to build back strength but the overall combo of 'well managed food + mental health boost of her PT work" is better than previous stab at recovery which was "free eating + no change of mind set re body perceptions'

Also she's deleted all of her body check photos off her phone - this was a big psychological step for her and am v proud. Obviously, no magic wand has been waved and the anorexia voice is still there but is hopefully being shushed at by more positive voices - we keep our fingers crossed.

A final also, she should be at university now but hey ho Anorexia - however on Saturday she was at work all day then went to her boyfriend's house for the night. OMG I need to get some hobbies for when she does leave home - it was an odd experience realising that soon she'll be absent in the house for most of the time. She's an only child so our cats will be very cosseted when that time comes!

That's a nice update Myrtle and it does sound like your dd is finding ways to move forward. I know what you mean about finding hobbies for when they're out/grown up. Dd was out all day today and I felt a bit lost, I can't even think about a time when she doesn't live here anymore 😢

So dd had a good wend, the bday sleepover went well, they had a Dominoes pizza for dinner and there were lots of pringles and other snacks around. Dd seemed to manage okay, she had two alchopops which I was pleased about (probably the only parent of a teen to say that 🤣) but it felt normal iykwim.

Then she went off with her friends to the local bowling alley for most of the day today. They apparently had a macdonalds for lunch.

Unfortunately ED reared his horrible head this evening and we had a lot of push back over a snack and then refusal of vitamins.

Overall though she's had a good time and managed to do normal teen stuff which has sadly been missing for the last couple of years.

Hi @myrtleWilson /all. Alder Hey decided against discharge on Friday - couldn't eat at home on Thursday, but I understand discharge highly likely today, as (physical) health restored. I can see their point - it's not a psych ward, so I guess it's home or Tier 4. Still nervous though. Eating on home leave over the weekend not 💯,, though did accept Fortisiip alternative.

Hello everyone, I thought I'd come and post an update.
So we've had the appointment with the ED team who have advised 3 meals and 3 snacks. DD is struggling with this, she is eating but not full meals.
We had an appointment with the paediatrician last week, she's put on 2lb.
DD is struggling more with the thoughts, she says she regularly has suicidal thoughts, and she is a frequent self harmer.
We're waiting to hear when her next appointment with CAMHS is, they have said theyll be doing FBT
I love the support on this thread and knowing I can come on here and speak to people who really understand so thank you all x