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...

Day - I hope DD has had a better day and that the sickness has stopped? In terms of the care (or lack thereof) you've received from the EDT - is there a manager or similar you could ask to meet with (even if via zoom etc) and set out your concerns. I know as a service they are ridiculously underfunded and so stretched (even more so in Covid-era) but it seems to me that your concerns are not just about the service but about the way in which they are engaging with you - not respecting your concerns etc...

In terms of family therapy and your question - I think I'm probably the wrong person to answer as we only official came under CAMHS after discharge so all of our therapy has been post discharge.

Girlie - I hope DD is okay - the death of a pet can be upsetting even without all the other stuff and I guess depending on the trigger for the ED, the sense of loss of control which DD may experience about the death could be a worry.

Theyseeher - I too sometimes wonder how on earth on some days I manage to put on clothes the right way round - pandemic, eating disorder, work in charity sector. I did end up sobbing last night though...

We've had an eventful night... we've long suspected that DD has not been drinking her fortisip, but tonight we were able to 'prove' it and spoke to her about it... Well, what a can of worms that opened.....

It turns out that even during hospital admissions DD wasn't drinking her fortisip (she'd somehow hold it in her mouth and then spit it out in the sink) plus she would exercise in the hospital toilet (she was on bedrest so we would wheel her in the chair to the toilet and wait outside - still oblivious) and whilst we know she's not been eating her meals, we thought she had been doing okay with snacks. Turns out she's been storing part of her snacks up her sleeves and then disposing of them. This has all happened whilst we've been in the room....

DD has wanted to tell us but has been so fearful how the anorexia would react - she (the anorexia - DD calls her a she) is a vile bully and says the meanest things to DD and I think DD was hopeful that hiding the food etc was doing what "SHE" said to do which was 'better' than what SHE may say if DD wasn't hiding the food....

Christ this illness is despicable and evil...

Anyway, we're emailing CAMHS tomorrow as obviously all their interaction and plans have been based on half knowledge (to be fair to CAMHS because we only joined them after her first hospital stay - they have little data to go on and so I don't think they could have spotted anything from an observations point of view that would have led them to suspect that DD/we weren't telling the whole story..

Onwards I guess, but bloody hell it is hard

Don't beat yourself up day - it does sound like you've been let down by camhs and with regards to hospital- it is the right place for your DD at the moment- I agree with you though that it is an exhausting process for parents so make sure you are looking after yourself

Bloody hell day that all sounds really stressful, I think you would do better to post on the FEAST forum 'around the dinner table' as will reach more parents with kids with ED. I hate to say it but I reckon if all else fails they might put a PEG in (a tube that goes straight into the stomach) 😕 that would be a total last resort though.

I reckon you should complain about everything you said on here re Camhs via PALS. They have let your dd down, that said I'm not sure it would have avoided where you are now, sometimes hospital admission is needed and your dd sounds so poorly bless her.

Myrtle that's good your dd told you what's been happening with snacks, will you be able to supervise her to stop her hiding food/going to the bathroom after eating?

Dds not done too badly today, ate most of what I gave her without too much fuss. We had a small stress about stopping at a cafe but I'd taken her snack with us which she had, refused a drink though.

Sending love and solidarity to you all 💐

I really hope you get some good, consistent care for your dd soon, DayB1Day - it's so discouraging when nobody really seems to know your dc history despite your having given it to numerous people over and over

Myrtle it's great that your dd was able to be honest with you about the snacks I hope it's helped her to overcome her difficulties with them now

I'm daring to feel a bit hopeful today - a good gain at the weight clinic, decent obs and YPEDS seem to think we're doing OK

I'm very conscious, though, of having felt optimistic several times in the recent past, only to have my hopes dashed, so keeping it low-key for now

I found out a new-to-me anorexia fact - the reason dd was going to the loo every five minutes over the summer was not (as I'd feared) bulimia or laxative-related Her bladder wasn't functioning properly because all the protective fat around it had gone! Now that she's put on a bit of weight, the frequent loo visits are no more

Day - I imagine your DD is feeling exhausted amidst everything else - how is she with you and your DH?

girlie - I said the other day to Dh that its like having a toddler again insofar as you have to pack a bag for all eventualities. We had similar the other day - DD's mid morning snack was soreen bar and a hot chocolate - we were out but had calculated calorie match with a drive through costa/starbucks hot choc... All fine but the drive thru was soooo busy and they got our order wrong and added cream to the hot chocolate which meant it was a no-go....

We were always supervising/watching/in the same room as DD when she's been eating but she's somehow still managed to hide things up her sleeve so now we're in a 'eating with sleeves rolled up' regime.. DD said the anorexia is quieter at the moment. We think it is recalibrating on how to pull DD back in now that she's told us whats happening. It really is heartbreaking and terrifying hearing DD talk about how the anorexia occupies her body/brain

TheyseeherRowling - am so pleased you've had a good day - I know positives can be dashed but I do think you need to bank the positive days in case you need to draw upon them in the future...

Plus thank you for sharing that new anorexia fact - it is amazing how quickly we are having to learn a whole new language in lots of ways isn't it.

Hope other posters on the thread who've not been around recently are doing okay - sending love to all!

Myrtle I thought the same re having a toddler again! I'm back to clock watching to feed/drink on a schedule and having to plan food ahead.

Today we went to a friends for lunch and I took dds lunch with us as it's easier than dd freaking at someone else preparing her food. I'm not sure I'm giving her enough food though 😕

Typically at the moment dd is having;

Breakfast- x 2 bits of thick cut toast with butter and jam with a small glass of milk or a smoothie.

Snack - banana

Lunch - tuna mayo sandwich, bag of mini cheddars, small yogurt and a carton of smoothie.

Snack - cereal bar or small piece of cake

Dinner- normal dinner ie tonight was fish, chips and peas.
Pudding - sticky toffee pudding and cream

Snack - milk and 3 biscuits.

She won't drink anything other than water, milk or smoothie, so no sweet drinks. She also won't eat at any other times than the set times 😕 She will also always leave something on her plate ie the crusts of the sandwich or the ends of the chips.

Does that sound about right? I'm not very good at calorie counting but reckon it is around 2000 calories even with her leaving some. I'm in no doubt she also holds drinks in her mouth and has snuck food up her sleeves on occasion.

My plan this week is to have a movie night and instead of pudding offer tortilla chips and dips.... will see how that goes down (crisps/tortillas have been a major fear food.)

Girliefriend, I would love my dd to eat that well

I'm still struggling to get her to eat puddings, or meaningfully calorific snacks I've been congratulating myself on getting her to eat snacks at all tbh

Today she ate

Breakfast - muesli with yogurt, dried fruits, nuts

Mid morning - banana with peanut butter (weird, but she likes it)

Lunch - mixed salads ie couscous, mixed beans, hummus She promised she'd have some breadsticks with it but then didn't

Afternoon - hot chocolate and half a piece of cake

Dinner - veggie 'meatballs' in marinara sauce with chips

Evening - brioche slice with jam

She claims she had a handful of chocolate raisins too, but I didn't witness this

I'd rather she had a yogurt after dinner and a biscuit after lunch or something but this is an ongoing project

Having said that, she did put on a pound this week, so we're not going backwards, at least

Shame your dd won't go for the milky drinks, though - flavoured lattes and hot chocolates are often the way to sneak calories into my dd these days

They that's interesting to see your meal plan as well, the problem I have is if I added something else in ie a hot chocolate she would want something else removed or reduced. She used to love hot chocolate so I will have to try at some point, likewise with cups of tea.

She eats the dinner and pudding as quickly as possible, literally stuffs it down. As soon as dinner is eaten she wants pudding, I've told her not to ask until I've finished my last mouthful of dinner as it puts me on edge! I think she just wants it over and down with.

She's meeting friends in town tomorrow and tells me they're all going for a Macdonalds 😕 she's desperate to go so I'm just praying she will eat something!

Day it's so shit for you at the moment, the support you've had has been pathetic. I hope your dd starts to feel better soon.

Hi Day
is the 3 week - the hospital stay? We didn't have a set timescale for our admissions - but both ended up being two weeks. DD had a meal plan for each day - if she didn't complete Meal Plan 1 she stayed on that until she did (complete was food or supplement or tube). I think she had 5 Meal Plans for both stays.

theysee girlie - thanks for sharing those meal plans - is that what is being given and eaten? Hope the McDonald's trip goes ok!

Yes and no to eating. She always needed supplement and was tube fed on her second stay. She wasn't sick but it turns out she was exercising in the toilet (she was supposed to be on bed rest). We weren't officially under the EDT during first admission (she was hospitalised by camhs during her initial assessment meeting) but we did have some EDT input. In second admission DD had her motivational therapy sessions and we saw the EDT consultant too. One of the things we stressed between first and second admissions was that DD needed therapeutic support whilst in hospital as otherwise the admission would purely about physical health and that was setting DD to fail as lack of therapeutic support would mean she'd bounce back into hospital not long after every discharge. But I think challenges we faced were more due to logistics rather than stonewalling/no communication which seems to be what you're experiencing...

Myrtle that's what's being given and around 95% of it gets eaten.

We went up b&m today and she spent ages in the sweet aisle choosing sweets to give her friends for Christmas. I felt so sad that she could pick out sweets for her friends but not herself. I told her to pick some sweets she could have on Halloween and it caused her so much anguish 🙁 she did eventually choose a small packet after some stress.

God I hate this joy sucking, parasitic, evil illness.

Day I wouldn't worry about what they think, you are your dds advocate and its your job to try and get the best support you can for her. They should feel some responsibility for why things went wrong before so that's good you bought it up!

My dd enjoyed her trip into town with her friends, she tells me she had a MacDs so I hope that is true. She came home freezing though, she is a bugger for not wearing enough clothes and I think deliberately allows herself to get cold.

Am glad there were some positives from the meeting Day and don't be thinking of yourself as a pain in the arse - as girlie said - you're there to be her advocate....

girlie - I remember earlier up thread you said something about your daughter deliberately allowing herself to get cold - is that a self punishment/denial thing do you know?

As ever we've had up and down days - but today we had a minor success in that Dd ate almost a whole can of vegetable soup for her lunch - not had that much content at lunch in a long time. It is as ever netted off against the next to nothingness she eats during the rest of the day but 3/4 of a can is a jump up from about 1/8 of a pitta which is where we have been... lets hope theres no retribution from the anorexia...