Support thread 13 for parents of young people with an eating disorder

[Curlyhairedassasin]

New thread as the other one is filling up fast....

I have no idea how standard it is. Do you have a different a&e department nearby you could try?

Yes. We’ll try elsewhere next time.

I would take her to A&E if she complains of palpitations or is faint. Psychiatrist told me better safe than sorry. Because they are young they can appear well right up until they become very unwell.

In a bit of a crisis right now. DD's eating has suddenly declined from around 1200 calories a day to this week 500-600 calories a day. She's 18 and won't let me take her to a&e. FEDS discharged us before her birthday and she refused to start with the adult ED service. So no one to email/call. Is there anything I can do??

I would make contact with the ED team and update them on what has been happening since discharge. Her old team should be able to tell you who to contact. Even though she is not willing to engage they should know what is happening and keep you on the radar in case she needs admission.
Someone will have to do obvs, maybe the GP?

@lyriccat I would also start with the old ED team for advice. on 500-600 DD got quickly unwell and needed admission. It just seems to be so much harder once they are under the adult services :( Can you convince her to see the GP at least?

I've emailed our old ED service and still waiting for a reply. No she won't come to the GP unfortunately. She's refused to be weighed since she was discharged from the day unit too. It's devastating knowing she's continued to suffer despite all the help I've tried to provide her.

@lyriccat really sorry. I have no idea what to suggest (mine is much younger so it's different). If she is eating so little she will get unwell at some point. I think you may have to be prepared to call an ambulance if you think she does need to be seen/ is getting too unwell. They will send one. We called an ambulance twice for DD. Once when I wanted to take her to a&e after a period of not eating and she refused and kicked off (999 operator convinced her in the end to get in the car with me - otherwise they would have sent one out) and once when her heart rate dropped and she felt stone cold. She was admitted via ambulance.

@Curlyhairedassasin Thanks for the advice. I've spoken to 111 before with her but haven't considered calling an ambulance if it gets to that point. Was your DD admitted due to lack of food or her vitals? We were in a&e countless times last year but DD was never admitted because her tests were ok. She really needed the re-feeding process to start externally though, rather than me prompting her at home.

We were admitted as her vitals were so low (so low, she needed an HDU admission). Ambulance checked heart rate, temp, blood pressure and did an ECG (they carried a mobile one) and decided on the basis of that that she needs going in. We had been to a&e before but got sent home. Ultimately, if she is restricting so heavily, she will get very ill. It's not a question of if but when. How has her eating been today?

Hi everyone, shell-shocked newbie here. My DD is 17 and has just been referred to the Maudsley clinic, depending on blood test.
We only realised there was a problem two days ago, so we have moved fast, but have a lot of knowledge to gain (I have read the guidance on 'Beat' and NHS). DD is slim anyway, but was trying to lose weight before a xmas beach holiday, which has resulted in her restricting herself to 500 calories a day, and consuming mostly coffee. Speaking to her, she has no thought that she is hurting herself, and says she feels euphoric and in control. She loves her new collar bones, but considers herself to be obese with a lot of fat still to burn. If she feels she has eaten too much, she goes for a run, or does exercise in her room. Her breath smells of pear drops all the time, which can't be a good thing.

So my question is, what do I do between now and her first appt? Whenever that will be. I managed to cajole her into eating a avocado for lunch yesterday, and miso soup with an egg last night, but she refuses anything I suggest for breakfast. Thanks in advance 🙏

Sorry you find yourself here, it’s a horrible situation to be in but you’ll find lots of advice and support here.
You’ll probably be advised to follow FBT which is tough going. Tabitha Farrar is a good resource for older teens but do check out Eve Musby too for advice on getting your child to eat (I thought it was aimed more at younger teens but some fundamentals still stand)

However, before FBT, has anyone mentioned refeeding syndrome to you? If not, happy to share further info but if all in hand no worries.

do take heart that whilst its a horror show of a journey, there are posters on here who have come out the otherside - including me who was in a very similar state of shock with a 17yr old back in 2020

Hi @TempersFuggit sorry to hear about you DD but there is a lot of hope. You have been referred to the Maudsley which is the best in my opinion. While you wait for your appointment, I would advise buying a copy of Skills Based Caring for a Loved One with an Eating Disorder by Janet Treasure. It has all the information you need to guide your DD back to health but it’s bloody hard. Be prepared for a battle, but one in which you have to stay calm even when your DD is being vile to you. The ED ramps up once you start to take control and get help.
The pear drop smell is ketones I believe and indicated that her body is in starvation.
I think you will be in very safe hands at the Maudsley. Hopefully they will be able to turn things around quickly. She may have been restricting breakfast for a while so that will probably be the hardest to reintroduce. Good luck and remember to look after yourself as well

@Curlyhairedassasin Eating has stayed the same unfortunately. What I don't understand is how DD's body still manages to cope under her extreme weight loss. A year ago she reached 61% wfh and she still wasn't admitted to hospital or an EDU because her vitals were 'okay'. If she gets to that point again how do I know we'll be listened to this time?! I feel so let down by nhs. We can't afford private care.

Thanks @Shanghai101 and @myrtleWilson I am very happy to hear that we might have a good outcome, it all feels very surreal and hellish at the moment.

Your point about refeeding, does that mean that we shouldn't try to get her to eat more? My hopes are for three teeny nutritious snack throughout the day, rather than just coffee and pepsi max. She currently feels she's doing intermittent fasting with five hundred calories, but doing it every day.

I'm currently driving her everywhere to stop her burning up too many calories, and making sure she is wearing lots of layers to keep her warm. Its so hard to sense so much need, but not be able to give it.

@TempersFuggitI am not sure how they clinically decide who is at risk of refeeding syndrome and who is not. My DD was an inpatient for refeeding and had initially daily bloods to check certain electrolytes levels due to refeeding syndrome risk You mentioned pending blood test results. I would image the tests is to check these sort of things. You should know more once you have the results.

Thank you @Curlyhairedassasin

@TempersFuggit i think that she is at risk of refeeding syndrome if she has been restricting for a period of time and is undernourished. You will need to start refeeding under medical supervision. My DD needed daily blood tests once refeeding started in earnest. She had weekly bloods prior to that.
Could you speak to whoever referred you and get advice on what to do while you wait for an appointment with the Maudsley. Refeeding syndrome is very serious.
Longer term you need to help her find something that she wants more than the ED, more than the new found collarbone. That’s the tricky bit but is key. There’s a good chance that she won’t be fit to fly if she doesn’t increase her intake so maybe that could be a motivator. Whatever it it that motivates her, it will have to be a short term goal. Friends, school, dance class etc have all been things that I have read on here that have worked for others.

Your DD prob has body dysmorphia if she considers herself fat. My DD suffers from it and needs occupational therapy as part of her recovery plan.
@lyriccat please talk to your Dd’s team. They need to reassure you that they are doing sufficient monitoring to catch her in time. Does she have weekly monitoring?

Hi @TempersFuggit soery you've had to find us.

It's worth knowing that anorexia is caused by weight loss and genetics so your dd will have always been susceptible to anorexia she just needed weight loss to kick start it.

The denial and body dysmorphia are common as is the exercise compulsion.

Does she go to college? Drive? See friends?

In order for you to take back control of the eating you have to have leverage, there needs to be something she wants more than starving herself.

At this point I would be saying she's too ill for anything other than bed/sofa rest. No college, no seeing friends, no holidays.

The coffee and Pepsi max have to stop as the caffeine will cause her heart more issues.

Getting her through this will be traumatic (I won't lie) but it is possible to come out the other side. FBT has a good recovery record so start prepping for that.

I agree with the others that refeeding is a risk so any calorie increase has to be done gradually with bloods monitored closely.

Thanks for your post @Girliefriendlikespuppies . I do have leverage, as I could say that she isn't well enough to go away over Christmas, but I can't use it until we've had the referral is that right? How do I get her bloods monitored and avoid refeeding syndrome? I feel like every second counts as she starves herself, and I don't know what to do first. How long can you live on 500 calories a day.
Does the referral to the Maudsley mean that she will get help for the dysmorphia too?
Gawd, it's a bloddy nightmare isn't it.

Hi @TempersFuggit. I am so sorry your dd is going through this. 500 calories or less than 500 calories seems to be a really common number so I do wonder if there is something genetic about this. I can only tell you what I’ve read online about refeeding syndrome and how I got my dd to eat more.

The programmes I have read about range in how they approach increasing calories over time, some faster to increase calories than others. Not only does this reduce the risk of refeeding syndrome, it also reduces the risk of stomach discomfort, where the stomach and intestines have quite a workout and get stretched too quickly, which causes a lot of discomfort. Eating too much in one go can also lead very rarely to the stomach being unable to empty, which is a medical emergency.

It is unlikely that you would be unable to get your dd to eat a lot more all in one go without being taught how to do it or forcing complete compliance. Anorexia is based on rules. My dd had a rule of not eating til 8pm and only one meal. Your dd’s rule is intermittent fasting.

At first, I focused solely on increasing dd’s intake by an imperceptible level. This was possible because I made her food and took it to her. She would only eat carrot sticks and hummus with grapes. I weighed the sticks used the same pot every day to put them in and every day I gave her a couple more sticks and more sticks meant more hummus. Over time, I discovered tricks to get her to eat more hummus such as not giving her an almost full pot as she would stop at the end of the pot, whereas if I gave her a half full pot she would open a new one and in the end was eating more than a whole pot in one sitting without realising.

I also went for the most calorific hummus I could find and bought that. Circa once a week she would eat tortilla chips and sour cream and chive dip. This meant she was eating about 1000 calories that day, sometimes more and I bought the most calorific one I could find.

As for refeeding syndrome, the more conservative programme I have read no more than 20% increased intake at a time and not to increase by more than every 3 days. If your dd were an inpatient they would do that a lot faster but will be monitoring and potentially administering supplements. I can’t find that link. But there’s this one 200-300 calories every 3-5 days. https://www.osmosis.org/answers/refeeding-syndrome

I would buy the book published by New Maudsley Skills based learning for carers https://www.amazon.co.uk/Skills-based-Caring-Loved-Eating-Disorder/dp/1138826634/ref=sr_1_2?crid=2GVL4KT2X3DZY&dib=eyJ2IjoiMSJ9.-0rmYJiLLn5-LH6mc42_33-zpvsZdCy9VlBkxxZUijeDrXOCDyskPOXwKozmH33NxQCrZgqmJHcpQlsPXOfdUkcypBhzZ_msX83TWZ5jFXIf0nm9VnnARpeqwZd9rfuR6iwoCyyhQmhDIEjZElvwtOqL1RNZrLQ49hwvcdGagWlJtEzLJm4Vu4qV0PfmlEywWQuM7P-I6tJZZdR670Eqy_exXP9UeH0pANk92TWAstI.3I633F3TEV5DGUWABLLPT2ZVvboRokI28la1NvEnW-w&dib_tag=se&keywords=Skills+based+learning+eating&nsdOptOutParam=true&qid=1732946599&s=books&sprefix=skills+based+learning+eating%2Cstripbooks%2C85&sr=1-2. You can also contact Jenny Langley. she is fab. And worked with others to write the new maudsley guidelines. https://newmaudsleycarers-kent.co.uk/carer-workshop-dates/. Idk if she has any workshops as she’s going to do something else shortly for 3 months after Christmas. She does one offs and has carer support groups. If you email her she will let you know what she has coming up. She has one off workshops next week as I’m attending one.

Jenny works for the Charlie Waller trust. They do the courses. I’ve done the one with Catherine O’Dea Hughes. https://www.charliewaller.org/what-we-offer/eating-disorder-workshops-for-parents-and-carers She’s doing an intensive starting on Friday. Last I heard there are still places.

Wishing you all the best.

I believe 500 cals is the baseline that the body needs to stay alive I.e just to perform basic metabolism. So if she stayed in bed all day she would use 500 cals. Therefore, if she is not on bed rest she is using more calories than she is consuming and non essential functions will be switched off e.g. periods. Her brain will suffer and her comprehension may be impaired. Over an extended period, she will lose bone density and this may be irreversible. Please ask about supplements.
it’s all very scary but there is hope. And once you have an ED team they take some of the worry from you. If possible, try to tag team mealtimes with someone else but make sure that they are informed and reinforcing your messages. Even getting a break at one or two mealtimes at the weekends will do you the world of good and will help prevent carer burnout.
For a few months it will seem that all you do is eat as snacks and mealtimes can run in to each other. If possible, try to do something distracting in between e.g. play games, art, craft (making jewellery with tiny beads is popular now). This is needed to distract from the bad thoughts. Dr Laura Hill’s Ted Talk, Eating Disorders from the Inside Out, explains this brilliantly. She shows you what someone with AN ‘hears’ when eating. She says that we need to reframe food as medicine as the sufferer will feel worse when at a healthy weight (converse to other illnesses where you feel better with treatment).
From memory, my DD was given thiamine tablets to take for a week or so prior to starting refeeding in day patients. We started with 3 snacks and 3 meals at home but we couldn’t get her to eat enough. While she was at home we had weekly bloods. Once she started in the day unit she had daily bloods. The relief of knowing someone else was keeping her safe was immense.
it must be one of the hardest jobs in the world to work in an eating disorders unit, particularly if you are the dietitian.

Has she had the basic health checks done? Bloods, ecg, pulse, BP etc? If not I'd suggest driving her to a&e and getting all of those done asap.

It's possible your dd could be seriously ill and you wouldn't know without the above checks.

You can absolutely explain to your dd that from now on you are taking control of what she eats as she has made herself seriously ill.

Her life as she currently knows it stops until she is eating and recovering.

You have to be that ultra strict mother, her recovery depends on you taking full control of what she eats and she will hate you for it.

From now on she eats 3 (small to start with) meals and snacks a day. You decide what she eats, you prepare it, plate it up and put it in front of her with the expectation she eats it.

You base this on what you know she likes and what she needs.

However you need to know that she is medically stable and as pp have said she may need the refeeding to start in hospital so they can closely monitor for her refeeding syndrome.

I

Thanks for the pep talk @Girliefriendlikespuppies , and the link to the training @Mummyoflittledragon I have booked us on.
I feel a bit more empowered now thanks to this board - much appreciated.
Can I just confirm, that I can walk into a&e and get this done? Is there anything I need to say?

@TempersFuggit
I have not done this myself with my dd. I should have done so. However, I would arrive at triage, explain your dd has been eating 500 calories or less for the past x number of weeks and because she is wanting to exercise heavily and always freezing cold, you are worried she may be seriously ill.

They will do the basic medical observations at the very least, hopefully bloods if she consents. Without these it wouldn’t be safe to allow her to go home. As she is over 16, she will have to consent to being there and for you to advocate for her. I imagine you know this already.

If you haven’t already done so, make as many notes as you are able about when this started, her weight before she started to restrict, if there has been a gradual reduction, when she started on 500 calories. You may find that it started a lot longer ago than you thought. The first thing for my dd was dropping lunch at school. I now know stopping lunch is a high factor in developing an ED.