Teen Eating Issues/Disorders Support Thread 2

[myrtleWilson]

Our first thread is almost full. Here is our second - a place to seek and share advice, to lament and scream with rage and sadness, to celebrate each other's successes as we navigate the choppy waters of supporting our children with eating disorders.

All are very welcome, whether you're at the start of this journey or a more seasoned traveller.

I'll link this thread to the first one and then I thought it may be helpful if on joining this one we did a quick precis of our current situation.

www.mumsnet.com/Talk/eating_disorders/4016379-teen-eating-issues-support-thread?msgid=104736115

Lottsbiffandsmudge i can't believe it that the GP took so long to review things and to get them to the specialists. That is really out of order!
I hope that your DD is okay and they will let her go home.

[quote Roolet12]@SoTiredNeedHoliday glad nutritionist experience positive for you & DD. That's great. Ours h as been less so - didn't go a bundle on her..when asked to provide some v basic education around food groups etc and the importance of each, she apparently decided to tell DD that red meat is higher in fat ( DD won't even say the word...calls it the f word) than other meats and that snacks dont have to be "crap food like chocolate". Aasrgh! So she came out highly anxious, muttering about becoming vegetarian and with a reinforced view that her typical fear foods like choc, are indeed "crap"! Really did not appreciate her input, clearly not well versed in anorexic patient mindsets! [/quote]
Roolet12 Can they really be allowed to talk to a patient with an ED like that? I think i'd be speaking up to someone about it....

Talking like that will only cause more food anxiety & specific food fears than helping in any way. I'm sorry it went like that for you both.

@SoTiredNeedHoliday glad the appointment went well.

@rootlet12 how frustrating, I hope this doesn't knock your dd back too much.

@lottsbiffandsmudge I hope you are both home soon, what a day.

@Girliefriendlikespuppies dd does have a long medical history, most things are blamed on her being 12 weeks prem, 0-4 years was very tough - she had severe pneumonia amongst other things which led to being tube fed again and put the nail in the coffin food wise. She has been much more stable for the last few years (fainting/seizures aside) and her weight issue is now the main one. So no actual diagnosis, she was/is "just" a sickly child.

So just to record, today dd is:
11
31kg
5" / 154cm
Under 1st centile for weight
Heart rate 104bpm

I have a telephone app with a GP on Thursday, was told today her regular GP is on indefinite leave so this could be an opportunity for a fresh set of eyes at least.

[quote Lougle]@Worriedaboutitall my DD, too. She's been between 40kg last summer and 37kg at Christmas, with no calorie monitoring. Eating junk. The dietician is assuming that his we're on an eating plan, she'll gain 8kg in 6-7 weeks.... It won't happen.[/quote]
Sorry if I've missed it, how tall is your dd? 8kg in 7 weeks would not be achievable for my dd either!

She's 165cm (5'5"ish).

I want to believe DD1 can put the weight on. But she's so far put on 1.5kg in 3½ weeks. At that rate, I'd think it's more like 18 weeks for that gain.

1.5kg is a good start I hope she continues 🤞

@Lottsbiffandsmudge so sorry to hear about events today....hoping you have been discharged this eve and you're able to smooth things out enough with DD. I'd be feeling v upset too. Seems we always have to be one step ahead in this game. xx

And talking of staying one step ahead.....just collected DD from the IP unit for weekend leave. Here's a little gem given to her by the psychologist!! Aargh! Thank god I saw that before going through her anxiety "homework" with her.

Omg roo 😳** I'm actually speechless.

@Lottsbiffandsmudge unbelievable sloppy management. I'm not surprised you're upset. I'm glad you've got some reassurance that your DD is ok.

@Roolet12 that's crazy!! We're pushing in junk all the way.

Despite a complete refusal to eat breakfast and not having lunch until 3pm (dietician appointment then wheelchair shopping), DD1 managed 1698 calories yesterday, which I was pleased with. Excitingly, she managed a whole chicken kiev, chips and beans for dinner, followed by a dairy milk buttons chocolate dessert. Over half her diet was fat yesterday, so I'm hoping for some good brain repair.

I'll be having words with that psych on Monday!
@Lougle, I'd be pushing it too if I could. Any calories are good calories. That meal sounds like a total success. V positive that your DD isn't refusing certain food groups/foods.
@Lottsbiffandsmudge hoping you're home now and that bloods were ok. Was the renal issue dehydration? ???? Xx

Thanks all back home at 7.30pm and then faced dinner refusal as her dad had cooked it and therefore it could not be trusted.....just highlights to me what a long way we still have to go. She ate it after I showed her the text I had sent to him with detailed cooking and amount instructions....
Then she insisted on her walk. Which after our time in hospital we both needed anyway! Got smoothie and meds in her. V late to bed but at least the food went in
Renal issue not resolved. Urea level is till over normal but lower than the first test. Will catch up with ED team next week on what we do now. She has never restricted her fluids but I will be making sure she drinks more from now on. She Is on meds so maybe that can influence it. Not sure.
Just need to use this weekend to regroup and get her back in her structure, being in there made me realise the reality of having an ED child on a general ward. It was a nightmare. They kept mentioning her weight, wanting to weigh her, wanted to talk about her food etc I had to keep asking them to step away and have these conversations outside of DDs hearing as she does not know weight or cal intake etc.
I feel for all of you who had had admissions to general wards. The food options were woeful. They gave me meal plans for her (all under what she actually eats) and they were so boring and unimaginative... my DD would just have stopped eating....
Hope you all have a good Sat. I need to read the thread again properly....

Glad you're home lots that does sound like a nightmare on the ward. I think my dd would be exactly the same as an inpatient, given how many calories I hide I imagine she would lose loads of weight as well.

Breakfast was 'interesting' I have started preempting dds dash to the kitchen to chuck her smoothie and remnants of porridge down the sink. I literally blocked the sink, she managed another mouthful of smoothie although held it in her mouth for ages. The holding food/drink in her mouth stresses me out as I dread to think what's happening to her teeth (she has full braces).

She Is leaving around two spoonfuls of porridge in her bowl but given that she gets double the amount of porridge she thinks she gets and it's made with 90% double cream that's probably not too bad.

She didn't drink her milk last night so I was pissed off about that, she also told me to fuck off for breathing 🤨🙄 I took the dog out by myself for 20 mins peace and quiet.

Rootlet that is shocking. How can that be helpful??

Lougle I actually thought 'ooh Chicken Kiev' that's great.

Lotts - has your dd had high urea before? It is up everytime dd has bloods done, they then check her for dehydration and she's had 2 kidney scans but nothing ever comes of it.. bit similar to you yesterday.

Off topic but similar to the insensitive drs on here, dd was having nightmares last night because her orthodontist keeps talking in detail about her needing jaw surgery for her underdeveloped bottom jaw and what that involves. I've told him not to go into it in front of her and now it's playing on her mind. I keep thinking how the hell will she eat after?!

@Girliefriendlikespuppies Breakfast was 'interesting' I have started preempting dds dash to the kitchen to chuck her smoothie and remnants of porridge down the sink. I literally blocked the sink, she managed another mouthful of smoothie although held it in her mouth for ages. The holding food/drink in her mouth stresses me out as I dread to think what's happening to her teeth (she has full braces).

I hear you. We only have one bin in the house because of this and I sit between dd and it at mealtimes. We moved recently and now have a downstairs bathroom that she disappears to, I know she's holding food and spitting it out too.

@Lottsbiffandsmudge glad you guys made it home. I'm sure renal issue will resolve if you can nudge her fluids up a bit. Good she's not restricting those. Really hope today goes more smoothly...xx
The dad trust issue unfortunately rings true here as well. DD has not once accepted a meal or snack he has prepared since she became ill - also sats she doesn't trust him. That was broken apparently when he measured a fortisip by 5ml over a year ago. She shuts him out massively which is a nightmare - makes for a v heavy load. ( & some arguments to boot)
And general wards...they aren't suitable environments for E.D patients. Like you, can vividly recall the gaggle of docs/nurses discussing DD.'s weight and progress 2 feet away from her as though she wasn't there. And the HCA loudly announcing in front of her, " we only have full fat milk on the ward, is that ok?". Aaaargh.

Well my day continues to go well, dd has just said everything is my fault (she's heavily into blame at the moment 'it's not my fault/it's your fault' etc.) That she wishes I would just leave her, she wants to be ill and definitely doesn't want to recover 😕

She has said that she was bullied and called fat (that was also my fault as I obviously made her fat) before the ED. I've no idea if that's true as she's never been over weight but kids are cruel so who knows.

I think because I'm clamping down on how much food gets eaten and pushing snacks this is the backlash, great 😕

sounds like it girlie - we know the ED looks for any opportunity to wrestle back control if it feels it slipping away even by a whisker...

Girliefriendlikespuppies itis so hard to hear comments like that from your children especially as you are trying 100% to do the absolute best for in every possible way.

Just take heart in that she doesn't mean it and everyone (especially kids) take out their frustrations on the ones they most trust, the ones that provide unconditional love.

Sending kind thoughts

Really sorry to hear about the troubles, especially poor @Lottsbiffandsmudge and the hospital and renal stuff (I have a virtual soft spot for Lotts junior because I love girl footballers - it's the synthetic socks and shin pads).

@Lougle I think 8kg in 7 weeks would be impossible. Our therapist said they were very pleased with our average of 400g per week because slow and steady is much more sustainable (like when one's trying to lose weight).

@Worriedaboutitall your dd's stats sound not dissimilar to mine at the beginning of this. She's 165.5cm and weighed 40kg (under 1st centile) on 11/1. Good thing is that just 3kg later and she's on the 3rd centile so small improvements make a big difference. In six weeks of good eating, lots of dairy etc, she's completely transformed. She looks so much better, is cheerful, her period has returned etc. I suppose it shouldn't be surprising as she's gained 7.5% of her body weight (I'd notice if I put on or lost the equivalent, which for me would be 5kg).

Stay strong @Girliefriendlikespuppies, keep doing what you're doing. Her E.D will obviously be uncomfortable with the pushing but you know you're doing what she needs you to do for her. And at some level she'll be feeling more secure and rescued from it. Yes, the comments hurt like hell sometimes - I frequently have a sob in the bog! - but you know they're just a shield for the E.D. Still bloody hard though i know. Xx

While I'm on - how do those of you that do family therapy find it?

Glad you think it's impossible too!

DD1 didn't eat much of lunch about ⅕ so I offered to make her a smoothie instead, which she reluctantly agreed to. 3 strawberries, 5 raspberries and 132ml cream She drank it though, so that's a win.

Meant to say @Valley i really agree with the observstion about small kg changes, potentially biggish behavioural. Since DD has put on her last 2 kg ( about 0.5 wkly), the diff in ability to eg engage with siblings more and laugh occasionally has been marked. Really think for each person there's a wfh threshold where below that, things rapidly head South...around 80-85% for us.

Nice one @Lougle. You're making up the cals and that's what counts..if she's more comfortable with liquid or smooth food I think that's pretty common isn't it?. DD was stuck in a 90% fortisip phase for months and refused most solid food which of course wasn't ideal but kept her afloat at least ( until a new med helped break the pattern). She still opts for softer foods guven the choice..