Support thread (8)for parents of young people with an eating disorder

[myrtleWilson]

Welcome to anyone who is a parent/carer of a young person who has (or suspects may have) an eating disorder.

We're experts by experience and will share our insight - but obviously we're not medically endorsed, we celebrate all our small wins and provide a space for relief from the intensity of supporting a young person whether pre teen, teen or young adult with any eating disorder

Thank you for your replies I called the surgery dr called me back within the hour. He said he nearly has enough info for referral to CAMHS already but wants her to come to surgery on Friday for weigh in and height check and BP and a chat to the gp. He’s also said she needs blood tests which I’ve booked in but they aren’t for two weeks. I think he thought it was good as she has started her periods but she’s only started at Easter and that’s around the time this all started (when she went back to school after the holidays) I think she will get referred on Friday well I hope so. I did make her have some pasta for lunch she ate half a bowl and she’s had some soup for dinner just now as she’s got running later and said she can’t go unless she has something else she won’t have the energy. I didn’t realise you are meant to force them to eat three meals I thought you could make it worse ie they then go and make themselves sick but obviously I don’t have any idea of what I’m doing!

@Whippetlovely it's a steep learning curve. I think it's fair to say that none of us had any idea at the start of our journey. This thread will be your lifeline. I hope it goes well on Friday. Push for what you want and go armed with all the referrals, tests etc that you'll find on here are useful.

Whippet well done on taking those first steps, food has to be non negotiable and yes you have to force them to eat. Start having a look at some Eva Musby stuff on YouTube and order the book, shes brilliant especially for younger sufferers.

There quite often is an initial backlash to insisting on three meals and three snacks as the ED will come out fighting, your dd may display behaviours you've never seen before and it can be very scary.

The food still needs to go in 🤷‍♀️ you will learn to separate the ED from your dd as they become like two very separate beings.

If you think there's a risk she might make herself sick you strictly supervise after food and do not allow any visits to the toilet for at least an hour after eating.

Welcome @Whippetlovely - it sounds like you've got a decent GP on board which is a great step forward. Your Dd can be blind weighed if that's easier for her.

apologies if I'm repeating others but have a look at Eva Musby for some insight into how to manage EDs - my feeling was that her approach was a good fit for younger ones like your Dd. It is a huge amount to get your head around but the very positive news is that intervening as soon as possible coupled with her younger age can be a good combo for getting off the ED path.

Do ask away - we've all been at your stage and there will usually be someone with sound advice or experience

Whippet, I agree, watch her carefully. It took me 6 months to realise dd had started purging. Add another 3 months waiting to see camhs

Hi everyone, just trying to catch up on all the messages.

girlie, I do worry that working will become harder once at home. I will give it a go. Worse case I will try to get signed off but hoping to avoid it.

DD is still an inpatient but sticking to the hospital meal plan for now and some weekly weight gain of around 500 gramm (I am so new to this, I don't actually know if this is any good but it's a gain, so I take it). We are also allowed some time home to build up eating at home. But I think her meal plan does need increasing further before leaving hospital as I don't think we can manage the increments at home. But if things keep moving into the right direction, we have her hopefully back home sooner rather than later.

Really sorry you found yourself here too, whippet. Definitely the right thing to go to GP. Camhs actually rejected our referral but the local eating disorder team accepted straight away and we were seen within a week of being referred. DD is 12 and does a lot of sport too. We started with family based therapy 6 months ago but things derailed and now we are inpatient. The eating and googling you describe sounds very much like DD. DD started to restrict further recently which caused her puls and body temp to drop. I called 111 who send us an ambulance and DD was admitted a few weeks ago. All a very steep learning curve.

whippet Eva Musby also has a YouTube channel with loads of useful video. Might be worth a look.

NAN that sounds all very hard.

I hope your DD will manage the concert and more importantly, will be able to thoroughly enjoy it!

I think if DD will be able to leave soon, we might start online learning and school said they would send a tutor round for some lessons. How did your DC manage to keep up with school work that way? School is incredibly eager to support her learning which (even though overbearing at some point) I suppose is a good thing moving forward. She is really keen to start school work herself...

@Curlyhairedassasin DD went into school for half days - with lunch at home. As her weight increased she graduated to mornings with lunch at school and then home. By reintroducing school gradually it motivated her and whilst she demanded more activities, the ED nurse was very strict working with the school until eventually all school time and PE was re-established once DD was weight restored.

Her meals and snacks were observed at school - that helped with her recovery.

DD could not adapt to online learning whilst recovering (she couldn't cope during the pandemic without face to face teaching) so that did not work for her.

DD missed a lot of school and whilst her teachers said they caught up the missed work with her, it has become apparent in her mocks and GCSE's that this is not the case. Although DD would have been overwhelmed if all the missed work was put on her then, it is a balance.

DD's brain was / is not still functioning as it was pre ED, she suffers from brain fog, lack of concentration and memory loss - this still affects her and they say it takes 6 - 24 months after weight restoration for the brain to 'heal'.

Take all the help that the school can offer - they sound better equipped than my DD's school.

@D1ANA22
Thank you. That is so insightful. I think I still don't fully understand/appreciate the potential effect of Dd's anorexia on her cognitive function. She only stopped school about 3 weeks ago just before things fell of a cliff edge and she was a top set student until that point and at least for us, no obvious cognitive impact. But I keep reading on here that the ED had a really significant impact on so many to learn... I think these things are only really starting to sink in for me.

I do wonder of being a top set student is a factor of ED sufferers. DD was the same. Luckily for her, her time on bed rest coincided with Covid teaching so everything was online. Her cognitive function didn't seem to be affected, but I do think that being such a perfectionist in all areas of her life contributed to her downfall.

Hi not a good day today she’s refused to eat a pasta salad so I put half in a bowl to at least know she’s ate something ate a couple of mouths now refusing more.
I want to sit here and make her eat it but I don’t know what else to do other than enchorage her. I have a younger child who is waiting to go out and play as well so doesn’t seem fair on him to be sat in all day waiting for her to eat , but I know she needs to eat. It’s making me quite tearful r today. I am worried about when she goes back to school. What did you do? Pick them up give them lunch and take them back to work? Or just make sure they eat dinner at home? Friday seems a long way away today , she said no one’s told me that she is meant to eat three times a day so I think until a professional tells her she doesn’t believe it.

Dd wouldn't listen to me. When professionals told her she listened. So yea I can see why Friday seems a long time off.
Have you tried distraction - tv, radio, playing a game - at the same time as eating?

Sorry I meant take them back to school after lunch and if so how did this work with work as I don’t wfh and also not entitled to lunch breaks as work school hours. Maybe other thinking things just worried once she gets back to a school as I can’t keep an eye on it

whippet if she is eating that little and her weight is dropping, she may have to stop school until her weight is restored. The GP/ED clinic will guide you.

How many calories is she eating a day? Do you know her weight and height?

We were told if DD is eating less than 500 cal per day for a couple of days to go to a&e. The food restrictions can affect the electrolyte household and that can impact the heart and cause a (dangerously) low puls and heart rhythm issues (hence the need for an ECG). might be worth to feel her puls too. DD was admitted with 35-38 puls but I think anything under 45 bpm needs checking out urgently. 2 days before her admission we went to a&e due to restricting food and ECG and heart rate were still ok. physically, things can escalate very quickly. DD was eating around 800 cal per day when she went to hospital.

I spoke to school re lunchtime supervision and it turned out, DD was told to eat in the SEN room ad staff are there but nobody supervised so we found out only after she was admitted to hospital that she had not eaten anything for lunch. When she is ready to go back, I have to raise lunch and snack support with school. she needs watching over like a hawk.

whippet I would probably speak to school to see what meal support they can put in place. our school is super eager to help now things have escalated. I think some schools are just better than others but that would probably be my first port of call. At the very least, you will know if/how much she has eaten which is also good to know (as I said, we stupidly assumed DD ate all her lunch and that made us somehow less worried. how naive we were).

Whippet she has to eat 6 times a day, 3 meals and 3 snacks with no longer than 2-3 hours between food. Have you got a rough idea of how many calories she's getting? I'd be tempted to take her to a&e, the EDSUK fb page has good a&e resources in their files which tell you what to ask for.

Like curly said the heart can be affected with any calorie deficit.

Otherwise you can say things like 'I'm your mum I know exactly how much food you need, trust me, you have to eat this food'

'Once you've eaten this food then we can watch a film/do an activity you like'

'This is exactly the right amount of food and you need to eat it, pick up your fork and start eating now please'

I've always known the right amount of food to give you, trust me, you need to eat this food now'

These are all Eva Musby stock phrases and can be repeated over and over again to almost any protest from your child. The idea is that they trust you more than the ED and you give them permission to eat while the ED denies them.

Avoid foods that might feel easier like salads or fruit as unfortunately that just enables the ED and they need every mouthful to count calorie wise.

I don’t know what she weighs , we don’t really weigh in this house. I have scales though but if dig them out and weigh her won’t that give her something else to obsess about?. So I don’t know how the dr is going to determine how much weight she’s lost, they took weight at school a few months ago I imagine that would be on her NHS file? She ate that half bowl of salad I reiterated I’m only doing this for her own food making her eat but she got upset and cried and went into bed. After a chat we went to the arcade needed some normality and to get out of house. Her dad has been more strict and told her if she doesn’t eat the dinner he will take her to the hospital. She was watching me like a hawk cooking the spaghetti. She refused to have the bolognaise in it ,but when she went out I sneaked some mature cheese in and mixed it with the sauce. She has done quite well eating that tonight to my relief but she’s gone upstairs to bed now she’s not very happy about it. Is there an app where I could work out calories on?

whippet I use myfitnesspal to track her food intake occasionally but a simple Google will also give you a good idea how much she is taking in.

DD cannot know her weight. She gets weighted blind at the clinic and now at hospital too (i.e. with the back to the scales) and we do not tell her the weight. She doesn't cope knowing (but it is not the same for everyone with anorexia, some are better with the knowledge). If you think it's better for her not to know, ask the GP to blind weigh her and not to mention the weight when you see them.

@Whippetlovely at this stage it is important to keep your DD out of the kitchen whilst you prepare and plate food, otherwise the argument can start there and then and can slow / stop meal time. There is a method called 'magic plate' - whereby the plated up food appears on the table and then your DD is called to sit and eat - she has no involvement with the preparation or portion size - the food is presented and she has to eat it. You now have to be stern, you are not fighting your DD but the voice in her head - try to separate the two but know that there will be push back - tears, tantrums and maybe violence - your DD is scared to eat and so will sulk or lash out.

The anxiety after eating is common. DD took long baths. But persist with getting the food in and these behaviours will fall off and change, it is a proven process but it is not quick.

We had a tough day. Hospital are saying her weight gain is too little given that she is on the final hospital meal plan and still on bed rest They recon she just had a really good metabolism so the final plan (which was the endgame in DD's mind) needs to increase now. She got really upset today and had a major meltdown (including flying objects on the ward 😞). Will see if she eats it tomorrow but I cannot see it happening. I hope she will come round to it in the next few days though. If she manages that, we will be looking at a discharge. if!

Whippet** your dd needs to be firmly kept out of the kitchen, any involvement will increase her anxiety. Your dh sounds like he's on the right track tbh, don't be afraid to upset her - it's not your dd you're upsetting but the ED iyswim and the ED would like to kill your dd ultimately, so it's good you're upsetting it!!

You can be empathetic but firm 'I'm so sorry this is hard for you but you have to eat'

'I can see you're upset but you have to eat this food now and then we can play a game/watch a film etc'

Their reactions come from a severe case of fight or flight due to the fact they've programmed their brains to be afraid of food. Humans are very susceptible to this as we're hard wired to train ourselves to be afraid of things we avoid.

The only way through is to expose her to her fear over and over again. That combined with feeding her brain/weight gain is what leads to recovery.

@Curlyhairedassasin My DD was off school pretty much the whole of Year 11, but with the help of school posting work on Google Classroom, online revision videos and being allowed to join classroom by video, kept up well and did very well in her GCSEs, which she sat at home, with an invigilator sent from school. Do get a letter from the hospital or community team though for her exam board to get her extra time and consideration - they mentioned her extreme fatigue, intrusive thoughts and depression and the fact that she had missed so much school. For my DD school was a protective factor - I think the only reason she stayed out of hospital for three months because she was determined to do her GCSEs. Sadly she has now lost all interest in A-levels and won't interact with school, but I know that for Hadley Freeman and Hope Virgo, staying in education was a critical factor.

Does having a diagnosis for autism help with recovery from anorexia? DD displays many traits; social anxiety, immaturity, gender questioning, fixations and impulsive actions - in your experience is a diagnosis helpful? DD is 17.

@Nomoreplease23 Autism is really common among anorexic teens - I think I read 25%. You might find though that your ED service is reluctant to refer as the symptoms of starvation are very similar to autism. However, my DD felt she had always had autistic traits and wrote an essay for the service about how she felt she had always had these traits, and was referred to the pathway. DD hasn't had an assessment yet, but things are in train (has passed triage, school has been contacted etc.) and she says she feels relieved that people are taking her seriously as she thinks the pressure of 'masking' was a key reason for her distress, which she managed by restricting food. If one of your DD's autism traits is sensory issues around food, the hospital should be able to adapt the meal plan for her.