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Teen Eating Issues/Disorders Support Thread 2

999 replies

myrtleWilson · 17/02/2021 21:22

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

OP posts:
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9
Lougle · 01/03/2021 09:51

I'm hearing you all. My fight was won with the smoothie, but now trying to get her to do the smallest amount of school work is unbelievably hard. I'm not sure she's capable.

Roolet12 · 01/03/2021 11:18

Wow I'm great at losing my posts!
@Ohmybabygirl im glad ensure plus were there to support you yesterday. That's so important when the sit is so delicate. As otgers have said, I imagine/hope they're really on the ball with your DDs ob's given her current intake? Our DD was v ill in Nov as restriction got to low levels ( wfh 70ish) so I took obs at home with our own bp monitor. Do you use one? Although something else to potentially fret about we cld at least track any signif changes in her pulse & bp esp. She went from being bradycardic ( bp & pulse really low) to tachycardic pretty much overnight which was a sign her heart was struggling & she was admitted to the ED unit the following day. Don't mean to be alarmist but just something to watch for maybe..
Fear foods will gradually get easier I'm sure, once your DD puts on some weight and her brain is functioning more. We still have quite a few - but now wfh is up the resistance to trying them is less.
@Girliefriendlikespuppies ouch! Bet you really needed that too...hope her finger is on the mend soon.
@myrtleWilson god yes, a good day now is certainly worlds apart from pre-A.N. Not being punched or spat at before a meal during home visits is my current markerSad. Are you any further on with olanzapine decision ...??
@Lougle your consultant certainly didn't mince words! Scary stuff. Thank god for IP units when all else fails. Although the prospect terrified me ours saved our DD when we were no longer a match for her E.D. The super rigid structure of the unit def lessened her anxiety around eating and came as a relief to her. Just praying we can keep her on that road when she's fully discharged in a few weeks.

Girliefriendlikespuppies · 01/03/2021 12:26

Well attempted morning snack which didn't go great, dd screamed 'I hate you' and threw her phone at me (it missed and landed on the sofa luckily) She's now upstairs and I'm surprised the door is still on the hinges as she slammed it so hard 😳

I hate this illness so much 😩

Worriedaboutitall · 01/03/2021 12:32

@Ohmybabygirl you must be terrified, I have no good advice but the posters on here are knowledgeable and a great support.

I got a phonecall this morning to say dd's prescription of pediasure has been stopped because the dietician has not seen her for 12 months.. no shit!! I'm furious waiting for a call back from the dietician. I've had one phonecall from them in 12 months due to covid and now this!

Lougle · 01/03/2021 12:50

Glad she missed Girlie it really does suck.

@Worriedaboutitall that sounds familiar. My Botox treatment was halted due to Covid, then they booked me in for treatment again. But then I had a phone call to say that it had been too long since treatment so I needed reassessment!! Well....you stopped the treatment...

Worriedaboutitall · 01/03/2021 15:37

It's so frustrating @Lougle, I've spent all day going in circles with the dietician, they aren't the right service for dd but CAMHS dismissed my concerns so where do I turn?

Checked with them and she weight 28kg in March 2020, so 1 year to gain 3kg but also 7cm in height, WITH 400 calories per day in pediasure. Dietician said oh she's not losing weight then?! On what planet is that normal weight gain for a child going through puberty and on calorie supplements?? Is it me, am I mad? It's starting to feel like it.

Lougle · 01/03/2021 15:50

@Worriedaboutitall I'm going to be a bit controversial here, but I think, after reading the Facebook group EDS UK, thinking about DD1's Consultant letter, looking at the fact that I don't even know when DD1's next appointment is, despite them telling me that she'd be seen weekly, that actually there is no treatment.

All the EDS do on a practical level is monitor the physical health to ensure that it is safe to remain in the community. Perhaps antidepressant or antipsychotic drugs to assist with the feelings. The rest? It's up to us.

Food. That's the only treatment. And it's up to us to make sure it goes in. It's the only way. So we have to get missionary about it. There is no point waiting for 'help' because it's all smoke and mirrors.

Worriedaboutitall · 01/03/2021 16:04

I think I know that, deep down. The dieticians favourite phrase is "we (dietician) can't make her eat" well neither can I love, so what next? She keeps under the radar by my sheer determination, cajoling, pleading, sometimes shouting, and supplements. Should I stop it all bar the supplements and let them see how underweight she would be if it weren't for my effort? That seems horrific, I don't think I could, but the result is they think she's just about ok.

Sorry for ranting.

Lougle · 01/03/2021 16:15

I think you'd just be walking down the mountain, then you'd have to climb it all over again Sad I have had the same thoughts.

We need to keep plodding on.

SoTiredNeedHoliday · 01/03/2021 16:38

Lougle I think you're right there is no treatment, just food and we need to keep them eating whatever. It's so difficult but its the only way.
Its 4.30pm and I feel like I've run a marathon just to get breakfast and lunch sorted and 1 snack, still only 60% of the quantity she should be eating though.

Has anyone's child had any positive affects from medication? Did they possibly feel hungry or be able to understand that they need to eat etc?

Girliefriendlikespuppies · 01/03/2021 16:42

Lougle i think you're spot on, there is no magic cure and it's down to us poor buggers to do all the hard work.

You have to be strict/confident/empathetic/willing to put up with abuse/heart ache and hours of worry and sleepless nights.

We all deserve a bloody medal 🏅

Worriedaboutitall · 01/03/2021 16:45

So true about having to redo all the work again, this is bloody thankless isn't it. Flowers for us all.

Lougle · 01/03/2021 16:45

@SoTiredNeedHoliday people generally have good results with aripiprazole and olanzapine, I've heard.

Lottsbiffandsmudge · 01/03/2021 18:00

So true. Community work i]is really parental/ carer work with a bit of physical monitoring, a check in and some meds if you are lucky. And I have a supportive `key worker and psychiatrist.
I remember thinking ahead of my first virtual meeting that it would all get sorted. Err not really...
I have had to learn myself with a bit of support from CAMHS but mostly by using Beat, that FB group, and lots of books....
So tired olanzapine helped my DD to eat and sleep. It’s been very hard slog but she does eat now. The exercise is another matter though.....I have caught her twice today lifting weights or doing sit ups....there were prob more occasions.....

Jojo2347 · 01/03/2021 18:11

Hi I’m new to the group and at the start of our journey with dd12 diagnosed a week before Xmas with AN - admitted on Xmas day and discharged to my care ten days ago.

We have FBT once a week and she has Camhs twice a week. She started bsck at school mornings only this week - she’s 45.6kg. She didn’t purge just restrict.

Just wanted to say hi and look for shared tips info and support x

SoTiredNeedHoliday · 01/03/2021 18:34

Hi Jojo2347 your story sounds like it has been really tricky since Christmas, but it is so uplifting to hear that she is able to go back to school for mornings.
I'm new to all of this and I have found it to be a very steep learning curve. It takes up most of my energy every day now either with worry or with getting DD to eat.

Social media with there photoshopped images and setting unrealistic ideals has so much to answer for.
I found this article, who knows if the figures are totally true, but if even near true why are these women featuring in advertisements, movies, tv magazines etc etc etc.... it's all so unhealthy and sad. BMI
On social media, it seems everyone's always happy & having a great time, perfectly polished in every shot and all terribly 'thin'

Jojo2347 · 01/03/2021 18:55

When I reread my post I realised it sounded so cold ! I just gave a potted history so I could reach out to other parents going through a similar situation. This illness is horrid and cruel robbing my daughter of her life, school, friends and the vital ingredient for life - food. I hate it so much every day is a worry and a struggle and even in good days you worry about his long will this last and will she be forever on a meal plan - will I be for st weighing and measuring and compromising ? Tbh she would have been the last person I would expect to get this awful and cruel illness.

Looking back there were signs but in isolation and without the blessing of hindsight they weren’t enough to make me worried enough to seek help.

It all started with her deciding she wanted a healthier lunchbox. She’s not a pick in her and us very tall for her age. But we adapted her lunchbox (their canteen being refurbdd do no hot food). We chose cereal bars, dried fruit, yoghurt and muesli. She wanted to switch to almond milk. She was still eating breakfast and a full dinner. She also decided to give up chocolate and cake. She loved baking but wouldn’t eat a cake!

This started in mid October. I had no cause for concern she embraced this health kick and all seemed fine.

However, things started to go down hill at the beginning of December as she wanted to have no carbs - didn’t want sandwiches and would eat potatoes of any form at dinner.

She refused to have an advent calendar and i thought that’s taking healthy eating a bit too far when you can’t allow yourself a small big if chocolate every day. Something wasn’t right I know it sounds stupid but she she always loved an advent calendar.

We had a routine appointment and before she went in I went ahead of her to say to the doctor about my concerns - her hands were a strange purply/blue colour. When she saw the GP they talked generally and in conversation they talked about lockdown and was she eating and sleeping ok. And she said she wasn’t eating as much as she wasn’t doing much physical work. They agreed she would have a little often.

After the appointment, we walked home and she told me she lied to the doctor that she simply couldn’t eat a little often. She wasn’t making herself sick and never has but she was hiding food and she had a little devil on her shoulder telling her not to eat.

From that day everything went downhill, it’s like once she had ‘confessed’ she didn’t have to pretend any more and she ate almost nothing and her weight plummeted - this was Christmas week. We got her into the paediatrician and he diagnosed anorexia nervosa and on Xmas day she was admitted to the children’s ward with her weight at below 6 1/2 stone she lost almost a stone in a week she just wouldn’t eat.

She was discharged 10 days ago and whilst she’s not cured she is eating her meal plan and gaining weight slowly.

When I look back all the sign were there I just didn’t put them together. If only I knew then what I know now.

I’ve been blamed by my ex-husband for it and I was just starting a new job - I feel like I’ve been hit by a train! Thankfully the new job has been really supportive and was a 5 minute walk from the hospital - and now she’s home I work from home.

She is able to return to school as I’m In Jersey and schools have been open here since January.

I worry about her returning to school, all the questions and intrigue and I don’t want her to be defined by this illness. Or god forbid bullied or trolled 😔

We cut off tik tok as she said that made things worse with girls posting under the hashtag what little they had eaten that day, dd says that definitely was a catalyst 😔 who knew ?

We have been told because she us young and we caught it early she has a really good chance of beating it x

Lottsbiffandsmudge · 01/03/2021 19:19

Hi @Jojo2347 welcome but sorry you have had to find us! Your experience sounds a bit like ours. My D was 13 in July. She is an elite footballer and lockdown(s) have been tough with the loss of her sport and routines. She started to exercise a lot more and become obsessed with ‘getting behind’. Then she started to reduce her snacks and eat more healthily. It was in the Nov lockdown for us that things went seriously down hill. She was at school and still v active but stopped eating everything except her meals. I knew something was up but everyone kept telling me ‘she eats her meals she will be alright...’ she was in a 1000-1500 cal deficit a day I later found ours as she told me she had been restricting her cals to 1500 but exercising at high levels every day (organised and secretive exercise). I self referred to CAMHS but still wasn’t sure it was an ED so got passed around a bit. Anyway long story short she hit her lowest weight at 35.5kg on Xmas Eve. She is now 41.4kg and 89% wfh. She eats ok but exercise is still a major issue. And we cannot leave her alone at all really. I have caught her twice today doing exercise that is not permitted. She has never been in hospital ( except for fri afternoon for urgent re tests).
Like you I am sick of weighing everything and sticking religiously to a meal plan. There is no flexibility around food at all. I know we are fortunate because she eats but I am struggling to see how we move on from here, hoping a bit more weight and time will allow us to challenge some of her fear foods and the exercise compulsion.
My DD didn’t eat her advent calendar either. It broke my heart a little too.

Jojo2347 · 01/03/2021 20:04

It’s truly awful this illness and now the care is us ‘experts’ muddling along ! Going from empathy to pure anger that I have to take myself off to the shed for a ciggy my stress buster! I’ve gone from the odd one to a packet every 3/4 days not so bad but I’m not proud of it x I worry about the future - whether one day we will ever return to some kind of normal 😔 whether we will be able to go holiday when we are allowed to travel again? It’s so cruel that they have fear foods - my daughter loves cooking and baking but won’t eat anything she makes - I’ve tried not more baking until you can eat something you’ve made to allowing her the pleasure of baking again.

I say the wrong thing - I’m worried about what I say so as not to become Ed’s friend or sometimes making the dress around eating worse.

I’m fed up of ready meals, and supermarket soups because she likes they are weighed and measured 😔

It’s like a minefield - some days you reach the other side and sometimes you get one or both legs blown off 😔

I should be thankful she eats the three meals and three snacks - albeit still restricted to foods she is comfortable with. And that she now has cereal with whole milk rather almond milk. She had made massive progress but still within the confines of her comfort zone.

I hate it - these poor kids - the lockdown lost 😔

Worriedaboutitall · 01/03/2021 20:18

It happened so quickly for you both, it must have totally blind sided you Sad

Roolet12 · 01/03/2021 20:25

The advent calendar thing is so sad. Nor did my DD - she'd just look on longingly while her siblings scoffed theirs. Sad
@Jojo2347 hi and sorry too that you're here. Sou ds like things have veen really tough. This illness certainly is the pits. Positive though that your DD is managing a school morning. Does she enjoy school?If so will hopefully help to keep her on track if she values being there. We struggle badly with our DD and school- missed most of yr 7 being ill so very behind, plus struggles academically anyway. Hoping to reintegrate her more successfully third time around once she's home from inpatient tx. Banning tik tok sounds sounds smart. I'd love to but it'd be like cutting off a limb - any tips on how you did it?? DD even managed to smuggle phone on to her ward and make vids - staff weren't at all impressed Angry.
Someone asked about meds/olanzapine? - helped DD when she was struggling with really awful episodes of anger/ distress, calmed her down. Too much did zombify her though but def helpful - possibly stimulates appetite as well?
Sertraline ( 25mg) hasn't done a massive amount i dont think - prescribed for low mood which has improved but so does increased weight so jury out on that one.

Jojo2347 · 01/03/2021 20:32

Yup the right completely whipped from under our feet x

Eva musby’s book has been very helpful x

Jojo2347 · 01/03/2021 20:50

It was dd that drove the tik Tok thing - I was blissfully unaware 😔 I looked at her history and all very innocuous no searching ana sites etc and tik tok they are all in that - I thought it was harmless. We have a wifi hub so it’s in the banned sites and she was only allowed her phone with supervision on the ward x she doesn’t like school but likes it for seeing her friends, tbh she struggled on year 7 with adjusting from primary - she grew about 6 inches in a year and got her period towards the end of year 6 which she always struggled coming to terms with. We haven’t been given any advice on meds so this is a first - I have a friend who is bipolar on olanzapine and jury out on that one - I just wonder where this all headed and whether we ell encourage her to renew her relationship with food x

Girliefriendlikespuppies · 01/03/2021 21:08

Hi and welcome Jojo your story sounds really familiar, my dds was very similar. This definitely sums up life atm;

It’s like a minefield - some days you reach the other side and sometimes you get one or both legs blown off 😔

We've got weight check at 9am tomorrow, great start to the day...

Lougle · 01/03/2021 21:13

Welcome @Jojo2347. I'm glad things are a little better for you now.