teen eating issues support thread

[myrtleWilson]

Hello,
would anyone be interested in joining a thread to support each other as we support teens with eating disorders @MNHQ - I'm tagging you in as am conscious of triggering issues and wanted your ok/ground rules to such a thread..

Happy to share our story with DD if others would feel it is helpful...

I don't know myrtle 🤷‍♀️ it does seem to have coincided with the ED so I suppose it must be connected. Tbh though because of the sensory issues she has she's never been that great at recognising if she's too cold. Glad your dd made some progress with the soup,in a way you want the anorexia to show itself, you can't slay the beast unless you can see it!

We've also had a minor win with stopping the bench press ups on our evening walk, I told dd they had to stop and if she did them again she would lose her phone for 24 hours and lo and behold she stopped straight away! I sometimes wonder if she wants me to be more strict, she's probably been wanting to stop the bench press ups for ages but the ED wouldn't let her!!

She also asked if she had to have her evening snack as she's eaten loads today. My response was straight out of EMs book, 'yes you absolutely have to have your snack, it's exactly what you need.' She trotted straight off to the cupboard to get it, dare I hope we're slowly getting there??

Girliefriend, fantastic to read that your dd is responding to your approach - I think on some level it's very comforting to just be told what to do and do it This worked for dd1, who actually really liked having a meal plan and knowing exactly what she was eating and when

Unfortunately it's not the case with dd2 I've just had the worst evening trying to get her to drink a glass of peach juice It ended up with her literally throwing herself on to her bedroom floor - something she used to do as a toddler all the time, but much more frightening now she is fully grown, albeit fragile

It was her punishing herself for drinking the juice - and, more pertinently, for having put on weight this week

We've got an ED service appointment tomorrow, so I hope it will be helpful

Day I would absolutely be That Parent, and keep being it - don't ever feel awkward about fighting for your dd

Hello everyone, sorry that you all have had such a difficult week.

the cold thing is about burning more calories/punishing themselves. I turned the heating up at all times (cost a fortune) because i wasn't going to have anorexia lose precious calories that way. Then i heated the car and provided blankets everywhere.

If your child will have a smoothie that is an excellent way to add in extra calories unseen - gold-top milk, double cream, sugar etc. And it has a low 'footprint' so helps with the manageability (feast website has a recipe book full of suggestions).

I really think Day (and anyone else struggling) you should go on the FEAST around the dinner table website - the support there is amazing and there is a 30 day carer course available. Eva Musby is often on the forum too.

Also Beat will offer a parent mentor to support you as you care for your child with ED. Really worth it as this disease is so nasty it will destroy you if you aren't careful. We paid for a session with Eva Musby which was not cheap but she was brilliant and really helped us.

My daughter was an inpatient for a couple of weeks as an emergency and i was so grateful at the time. I could not manage to look after her anymore. They gave her a tour of the eating disorders unit and she hated it so much she managed to stay out of it. But it was a long and difficult slog.

My main secret weapon was hot chocolate with cream and sugar mixed in and also adding cream/butter to everything possible. I also gave some omega 3 capsules as i felt that would help restore brain function - salmon 1-2 times a week would work if your child won't take the capsules.

I took away all choice - it seemed to stress my child out so much and we are only slowly bringing back any choice (such as flavour of yoghurt).

Keep going everyone because they will get better but we have to really fight the ED on all levels, which is exhausting. I think they are back to toddler level - constant supervision, all meals precise and on-time, constant hatred towards us.

Day there's something called Cyclical vomiting syndrome, I don't know a lot about it but wondered if that might fit what's happening with your dd? When I was a teenager I went through a phase of being very anxious and throwing up a lot. The only thing that helped was eating ironically, it was a bit like morning sickness in that respect!

Are they doing the small but frequent approach to feeding?

Grey how is your dd doing now? Yy to taking away choice, it just causes so much stress. I will occasionally let dd choose between a flavour but even that can cause stress sometimes!

It is 100% like having a toddler again, I realised this morning she had hidden some jam from her toast in tissues! I need eyes in the back of my head 😳

I've never got through as much butter and double cream as I have in the last couple of months, it goes into pretty much everything. I realised I could add butter to her baked beans the other day and she wouldn't notice!

I always have the house quite warm as I hate the cold but she will lie to my face about putting a jumper on! She managed to sneak off this morning to take the dog out, I asked her if she had a jumper on 'yes mum' but before I could check she's gone out the door!! Of course she didn't have one 😕

hello
I am worried about putting too much info on here in case DD reads it. Girlie she is much improved on where she was. She went down very fast and very hard and we really fought to get her up. we are at target weight now and things are so much better. She needed help with everything - washing, eating, dressing. we couldn't leave her alone for 1 second because of what she might do.

I don't know what to say about the vomiting - have you tried eating the same amount as your daughter Day? that might give you an idea of whether it is too much for a normal person. At the beginning their stomachs need stretching back to normal and that can be sore so again - hot water bottles, distractions (we watched the good place straight after every meal).

And lots of craft like paint by numbers sets, jigsaws, magazines (not fashion or cooking ones obviously but walking magazines, dog magazines, etc)
However we are at target now and although i am still on high alert, the house is much calmer and we don't need to constantly watch her.
She hugs us, tells us she loves us and enjoys her school and friends again. It is like a different child.
Things are not perfect, and i am wary about jinxing everything, but we are in a much, much better place than a year ago.

The meals can seem massive but (as i say) have a look at the feast site for ways to reduce the size of meals without reducing calories.

Butter in baked beans is a new one to me but brilliant.

I make a lot of the snacks because then they can't be calorie counted by ED. And, if you can afford them, cliff bars are great!

oh day, it must be so hard for you at the moment.
i would give her whatever you are planning on feeding her 'normally'. so maybe a chilli? (with baked potato or rice if she can manage it) will a lot of beef mince? or mash potatoes and sausages? shepherds pie?
what do they give her at the hospital? that might work well if she is used to it. be aware she will complain it 'doesn't take like the hospital though'.
we haven't managed pasta yet really. it's on the list of 'fear foods'.

greylady, so glad to hear that your dd is on the right road

And butter in baked beans - what a genius idea! Thank you

Dd has been given the go-ahead to go back to school part time - the suggestion is 2-3 half days, so she's looking at her timetable to see which mornings have her favourite lessons She has been doing well since her epic meltdown the other night - I think tiredness was implicated in that tbh as we had been for a family day out - drive, lunch and a boat trip All gentle, non-exercis-y things to do, but it seemed to really take it out of her and she slept all the way home in the car

grey - I know that/imagine that you can't probably ever totally relax into the pre anorexia world but it is so good to hear that your DD is on the right road - obviously primarily for you and her, but selfishly it gives me hope that there is a way out.

theyseeher am so pleased that DD is able to go back to school and I hope that re-opening up of worlds continues to progress.

day - does your DD have any particular fear foods (or rules) as that dominates meal planning for us - so no sauce, no mixing of foods, and then a whole list of fear foods. I'd be tempted to go with something that you know she has recently been able to eat. I hope it goes well.

We had observations & family therapy today. Weight down again (1.3kg) but blood pressure, pulse, etc all okay. Only had a postural drop of two which is unheard of for DD.

In therapy they're putting in place 1-1 enhanced motivational support for DD and mealtime support coming out to the house. DD is up for the former, less keen on the latter but we're meeting with the meal support person to see how it would work.

Given DD's age we also had to start the conversation about the transition to adults team - they reassured us in many respects and it does seem to be quite joined up here and they are keen to make a smooth transition. Still a bit OMG about that transition mind.

Also, we need to make some decisions about school/A-levels/University applications/whether we ditch this year and start again next... @Bluebuddha10 I think you mentioned you restarted year 13? Would you mind me asking you a couple of questions?

As ever I think it depends... we found the first one quite odd, but have then taken to emailing the EDT at CAMHS any particular updates/issues that we want to share with them/discuss.

I think it is supposed to be a place where in part the family hear the voice of the patient - but quite often DD has found it difficult to speak so we've 'taken over'. Our sessions have improved over the weeks - we have obs right before therapy so there is always the sword of Damocles hanging over us about hospital re-admission which has been an issue..

If it's anything like ours, you'll get told constantly to buy (yet another) book

But so far it's just been gathering in front of the laptop and discussing what dd has eaten, how easy or difficult it was to get her to eat it, and generally talking through feelings around food, exercise etc Dd hates it and finds it cringey, but I think it is helping things sink in

If nothing else, it's helpful for her to hear the same stuff I'm always saying, but from an expert

Yeah our experience of family therapy has been patchy, fortnightly zoom meetings with dd and me joining in at the end. It has been helpful in getting dd to talk a bit about some of her darker thoughts though.

Glad the butter in the beans was helpful 😁 I also make porridge and custard with extra sugar and double cream 😬 apparently chia seeds are calorie heavy for their weight so I add them to flapjacks, smoothies are basically blitzed fruit and double cream 😬

Frustratingly though she's not really put a lot of weight on yet....

Dds not had too bad a day, she spent the day with her nan as I was at work but I made up all her snacks and lunch and she apparently ate them fine.

Ah, I am wise to the chia seed trick A good one!

Day I suspect they will not deal with anything other than the ED Dd1 was severely depressed with suicidal thoughts when she stopped eating, but nothing was ever discussed apart from the ED

She is now seeing CAMHS and (fingers crossed) doing much better mood-wise Her ED seems years ago (I think that's a 2020 thing though)

To avoid confusion, I'll just clarify that I have 2 dds -

DD1 (17) is autistic and was signed off by the ED service back in Feb (seems like years ago now) and has eaten well ever since

DD2 (15) is neurotypical, dropped to a very low weight after lockdown and is currently being treated for ED

I guess they'd make an interesting study, as they have presented very differently, and what works for one is useless for the other

Girliefriend, I keep meaning to ask, how is your dad - I hope he is doing better

They thanks for asking he is still in hospital but stable, unfortunately there was a covid case on his ward so the ward is even more shut down than it was. He needs an operation (heart bypass) but this has also been delayed due to covid.

I can't imagine how stressful it must be to go through this twice 💐

Happy Halloween 🎃 hope you all have a good weekend.

Hi everyone
I feel so sad hearing all your news and difficulties with this dreadful illness. I know exactly what its like, how frightening, frustrating, and emotional it is. I think I have experienced every feeling /emotion it's possible to have over the years. Just remember that you all need to look after yourselves, get rest, use support networks etc. You will be no good at helping your children, if you do not look after yourselves first. Not always easy I know, but very important.
My daughter had a thorough check up last week. ECG showed abnormalities with her heart. Blood test showed low in some things but not as bad as they were expecting. They gonna to monitor her repeat ECG and bloods in couple of weeks. We have been in this position many times before, with the heart, she normally gets put on bed rest and wheelchair use only, until she puts on weight and then heart normally recovers. But shes always been an inpatient when that has happened before, so different this time. Not sure shes doing much resting at all. Still concerns about drop in weight and BMI, she going to see a dietician again, but being that its adults, god knows when that will be.
@myrtleWilson happy to answer any questions about anything really.
Stay strong x

@myrtleWilson Regarding the repeat of yr 13 - here goes....
At the beginning of yr 13, my daughter attempted suicide, took a significant overdose. Fortunately i got her to a & e really quickly once I had realised and she had to have treatment for 24 hrs to reverse effects which luckily worked. However, she was extremely ill with the anorexia and too poorly to discharge, ended up being in for 3 months . She says she took the OD because her ED consultant had discovered she had been manipulating her weight (water loading, and sewn weights/ tools from home into her underwear, wearing double layers of clothes which I didnt notice cos she would sneak out of house without me seeing, although I do still feel really stupid for not realising), anyway she felt pushed into a corner I guess.
Clearly 3 months away from college meant she couldn't sit her A Levels the following summer. College knew she had anorexia, they had been providing support around lunches etc, but she didnt want them to know about the OD. Anyway had a few mtgs and decided she should repeat yr 13. She went back to the yr 13 she was already in and finished it with her friends, did all the studying but not the exams and then started it again the following September. It really worked for her. She had already taken one ALevel, so in theory only needed to take another 2. But to get funding for her to repeat yr 13, she had to register for 3. So in the end she got 4 ALevels! It was the best thing for her to repeat, took some of the stress away and allowed us to keep focus and energy into eating and gaining weight. College were really good, very supportive xx

Oh @Bluebuddha10 my heart breaks for what you and your DD have been through - am so so sorry. The news about her ECG must feel like you're on a roller coaster you can't get off. Is she still at home with you - I'd imagine doing bed rest if she's away at University would be difficult to keep up.. Fingers crossed for improved results in the next tests.

The feeling stupid for not realising is exactly how I felt about discovering DD was hiding crisps and snacks up her sleeves - I suspected she was disposing her fortisip but hadn't heard her rustling about, neither did I have any suspicion standing outside the hospital toilet that she was inside exercising...

I think we're going to have a chat with school about options...they've been very supportive to date..

Am also presuming that our CAMHS appointments and our meal support home visit will still go ahead despite new lockdown - CAMHS said they found the therapy didn't really work so well on zoom. Will wait and see what they say.

How is everyone doing?

We had our introductory visit from the eating support worker today - am still not entirely sure how it will work in practice but the aim of it is to help DD break the rules around eating and avoid being caught in the ensuing backlash from the anorexia... DD & DH were impressed (I was on a zoom call so missed the visit unfortunately)