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

Valley that's really unfortunate your dd was unwell 😕 I dread any sort of stomach bug as like you said every but if weight is so hard gained. I really think you'd find the weight would go on with lots of hidden calories which I know you had mixed feelings about. I honestly don't think we would have made any progress without adding a lot of extras to everything 😕

If she'll eat porridge that's a good one to get a lot into, recently worked out my dds porridge works out at about 750 calories 😳

Other 'healthy' foods that are accepted by dd but pack in calories are soups (lots of added butter and double cream), scrambled eggs (made with duck eggs, butter and cream), fish pie - there's tons you can add to that!! Smoothies are another good one.

Nelle I think the issue with standing generally is that lots of anorexics think they'll burn more calories standing up rather than sitting down...

Lots I totally get your frustration, is your dh quite into 'fitness' generally? Do you think he struggles to ever see it as a bad thing? I know my mum really finds this aspect of the illness hard, she's always encouraged dd to do a lot of exercise running, tennis etc as felt it would help her self esteem. When dd first started on this journey my mum thought it was great that dd was doing all this exercise 🤦‍♀️ She does get it now but feels really sad about it as it was 'their thing'

Lougle that's great you managed a day away from dd, bet that felt like a mini break!! Is the tachycardia a new thing? What's her resting hr?

Nelle at 77% wfh a lot of kids would be on bedrest, definitely no school etc

Sotired I can't remember what it's called but anorexia literally does something to the brain so the sufferer honestly believes they are fine and completely right and everyone else is wrong. There is a technical name for it, I can remember dd being like this at her lowest weight. She's only just started accepting she does have an ED recently at above 94% wfh. Do you think she needs admission?

She’s on the paediatric ward where her ED team is based. Knows all the nurses well.😬Had first Olanzapine a couple of hours ago, no impact yet. Going back up in a few minutes so will see if she’s sleepy then. It’s the lowest dose.

He is pretty much on bedrest anyway by his own choice (or maybe he just feels unwell out of bed). From Oct 19 to Sep 20 he spent 90% of his time in bed, then he went to his new school from Sep to Dec, then he was at home in bed again until March. He’s been back at school 3 weeks now it’s Easter so he’s back in bed all day. He cried a lot at first as it was too hard to sit all day at school but he doesn’t have to move between classrooms and if he doesn’t want to engage in school work he will curl up and go to sleep.

It’s good I don’t also have the worry of trying to make him rest as that seems hard for you all. Today is not going well as he has refused everything I’ve offered except a cheese sandwich and Doritos. No drinks at all. Apparently he hates the taste of every food the shop sells. He has eventually agreed to a pot noodle and some fruit juice so my husband has gone to the shop.

The suggestion of scrambled eggs is good though, he does like eggs so I’ll get some cream and butter tomorrow. I think he will enjoy that. He used to live porridge too so I might give that another try.

Girliefriendlikespuppies I do think she needs admission, I want her at home but I was equally hoping they would admit her at the physical today but I don't think the nurse is able to do that.

I think she needs refeeding in hospital and also drugs as we are getting nowhere and going backwards fast.
We might just need to present at A&E if this keeps up

NelleBee while you can get food like porridge in I'd be going for it, my DD over the last month has cut out so much from her already restricted diet (she was trying to live on 600 calories )

Lougle do you know what the monitoring is with Olanzapine and how often? Bloods?

@Scr1bblyGum you need prolactin levels, blood lipids and blood glucose.

[quote NelleBee]**@Scr1bblyGum you need prolactin levels, blood lipids and blood glucose.[/quote]
Yes, they prefer it to be fasting, but that's not always helpful with EDs, so they tend to get a bit flexible with it.

@Scr1bblyGum she'll probably be fine on the lowest dose. Is that 2.5mg? DD1 was taking a half tablet and that knocked her out, so now she takes half at night and quarter in the morning. But I can already see the sleepiness is wearing off and she's not eating dinners well, so we may have to adjust again.

Having said that, she had 2 sausages for dinner, then while I was in another meeting, came to me and said she'd had 2 cheesecakes as a snack! SO she ended the day on 3516 calories :DD

She had a load of bloods done before starting it. Do they do bloods regularly whilst on it? Do you get any other monitoring?

From the BNF:

"Blood lipids and weight should be measured every 3 months for the first year, then yearly.

Patients taking olanzapine should have fasting blood glucose tested at baseline, after one months’ treatment, then every 4–6 months."
(Edited to remove general antipsychotic advice)

DD1 had bloods before starting olanzapine. She has weight and sitting/standing BP and HR weekly.

Oh it’s also very common to get elevated liver enzymes in early treatment but it’s transient so they should probably monitor LFTs too but that’s pretty standard whenever they do bloods.

Oh maybe that’s what is elevated in my DDs bloods. It’s def a liver thing. Still no word from paediatrician....assuming no news is ok news. Talking to gp next week about them anyway.

Yes @Lottsbiffandsmudge aminotransferases (ALT and AST). Ideally they should do a follow up, liver enzymes like to do their own thing so you can never really say what’s going on with just one blood result you need a few to see the trend. (Much of my days are spent looking at blood results)

God lots of us having a really rough ride today..
for @Scr1bblyGum. Really hope things go ok there for your DD & the meds are a help. Let's hope it can galvanise her into feeling she wants to choose recovery over the misery and endless admissions that this illness brings.

@SotiredNeedHoliday lets hope CAMHS delivers and supports you. It sounds as though you're v close to being admitted?. Bit surprised they couldn't send you up to paeds to get checked over at least? Good luck with plans tomorrow anyway...

@Lottsbiffandsmudge sounds a bit like classic hubby stuff. I can relate..mine doesn't see the details that are the crucial thing in all of this because he basically has no involvement in meal plans or tbh, any of it..Good intentions on your DHs part no doubt but i get your frustration. I guess if you can get the calories covered ( no mean feat I know) while DH does his thing with her, it cld be some much needed time for you to recharge a bit. Life with this illness is so utterly draining, you have to snatch those time out moments while you can.

Thanks @Girliefriendlikespuppies for all those useful suggestions for foods. Gosh 750 calorie porridge... I'm impressed. I think I am going to start sticking fats in everything I can get away with, especially now she's banished from the kitchen. She still says she can't trust me because I, horror, put a splash of maple syrup into a smoothie once.

The therapist said they once got a bad bout of norovirus on the inpatient ward, with attendant weight falls. It just goes to prove how they need a cushion of extra weight to guard against these things.

Morning all
Alongside our own collective experience I feel really lucky to have some HCP/tangential posters on here (not that you're expected to diagnose) as having someone with medical/physical insight is really helpful so thank you!

Sorry so many of you are having tough times. I know this sounds trite but remember the old adage of 'you can't pour from an empty cup' - am not suggesting the MN favourite of a spa day but if you can take 30 mins for yourself - read a book, listen to a podcast... small moments to try to replenish your batteries. (I give this suggestion in the knowledge that I ignored it myself!)

Birthday girl had a great day! Minor breakdown over a new piece of clothing that triggered body image distress and the ED saw a door inch open but to her credit DD managed to pull it around very quickly.

She went out to a friend's house on her birthday for a surprise party and again last night - more socialising than she's done in a year. As lockdown eases and more social events become possible (in tandem with her energy levels rising) we're conscious of a 'watch out' moment as anxiety levels about socialisation will creep up and the opportunity for her to believe everyone is looking at her thinking 'how fat she is' and also for DD via the ED to be scrutinising other peoples bodies is high.

DD is being honest about when she is prompted to consider restricting again and has said it would be 'easy' to do that. Eating as she is now (pretty much "all in" recovery mode is very tough) but we've pushed back (and in her v lucid moments she agrees) on the notion that restricting would be easy - it wouldn't, it would be hard to turn away food, especially with hunger cues present, and indeed extreme hunger. Hopefully we can keep up the view that as tough as it is now, to go back would be harder still....

myrtleWilson that sounds pretty positive I am pleased to hear her attitude and that she's being honest and open about things.

What do you guys think, if camhs doesn't call to admit DD today should I just take her to A&E? We're getting nowhere and she's eating very little. Today shes had 100 mills supplement (150 calories) and refused snack and says she won't eat lunch. WFH approx 70 /71%

sotired - I don't know how it works in your area but for us I think when we went to A&E we did it via the GP so the GP could alert paeds A&E we were coming in - is that possible for you?

Sotired personally I'd take her in with a copy of the marsipan sheet for kids, I think Lougle linked to it up thread. If nothing else it might help get the message through to your dd that she is seriously ill.

That's great your dd had a good bday myrtle and it sounds like she's still on the right track. Is she eating freely now or are you still giving her the food? I feel like I'll be feeding dd until she's 30!!

Dd nicked some Haribou out of my bag!!!!😱😭😀
Also wanted a mallow bar I had. Only reason I said no was because I didn’t want to ruin the hospital meal plan. It was so lovely seeing her want food.

Hi everyone. I'm just so tired. Full on day yesterday, interviewing for a school (governor). Then a full governing body meeting. So Non-stop 11-8.30, then I couldn't sleep last night.

Today I've spent most of the day getting Power of Attorney forms sorted and labelled ready for signing tomorrow. There are so many points to sign and they all have to be signed in order, or the whole thing gets rejected and your £82 is gone. What a swizz.

The psychiatrist phoned today. I told her that DD1 is doing ok, but formal meal times (lunch, dinner) are tricky and she often refuses. So we've agreed a new regime of 0.625mgs olanzapine and 12mg fluoxetine in the morning, 0.625mgs olanzapine at 15.30, then 1.25mg olanzapine at night. I managed to get 2200 calories in before dinner, but she had fallen asleep by dinner time (must be the new addition of olanzapine) and so only ate 2 tiny burgers and 2 cheese slices. 2500 calories in overall, though.

We don't see the psychiatrist next week as she's on leave, but she's informed her colleagues of DD1 so that when we see the nurse there is a doctor available to tweak her meds if necessary.

DD1's teacher dropped by with a present from her class and an easter egg. They all have special needs and they had each written her a note of encouragement. They were seriously lovely. In between each note was a little activity -either a wordsearch, a little puzzle in an envelope, a maze, etc., and then there were pictures of the new school rabbits with little speech bubbles telling DD1 how much they were looking forward to meet her. They really had put a lot of effort into it.

@Lougle how lovely of your DDs classmates.

I’ve had a mixed day. After him only eating a cheese sandwich and half a pot noodle yesterday he said he was hungry this morning and had a cheese and ham sandwich. But then that filled him up for the rest of the day. He did eat some curry that his brother made this afternoon.

I spoke to the GP who said it’s not really a GP issue and I should be speaking to CAMHS but he did agree to do bloods, ecg, and blood pressure next week. I am seriously starting to think going to A&E would be the best option, I’ll see how he goes as if I make too much fuss it might make him worse.

It’s the anniversary of brothers death so I’m a bit down about that I guess. Then some one stole money out my bank account! I have a banking app and it alerts me to all transactions so I saw it happen and froze my card immediately then transferred all my money into our joint account. They tried another 5 transactions since. It’s with the fraud people now. I don’t know how it happened but I’m super worried now.

Oh @NelleBee I'm sorry to hear about your brother's death. Has it been very long? Try not to worry about your bank account -someone cloned DH's card and went on a £2000 shopping spree, but we got it all back. I do think you are going to have to go to A&E at some point, tbh.

DD1 had fallen asleep again after dinner, so I got DH to wake her up long enough to get her evening dose of olanzapine in and then she's gone back to sleep.

@Lougle it’s been 3 years. It was Easter then too. He had a seizure so it was very sudden and unexpected. I’m glad you got your money back! I didn’t lose much (less than £100) it seems like they were doing test transactions of small amounts. I’m hoping DS will go to sleep soon he kept us up until 4am last night.

How is everyone else?

@NelleBee three years is no time at all. A dear man in our church died 5 years ago of a seizure and I still get a shock every time his wife posts on the anniversary.