Support thread 10 for parents of young people with an eating disorder

[Lottsbiffandsmudge]

Hi guys
Here is our new thread. I will add a link to it in Thread 9

@Girliefriendlikespuppies I hope you’re wrong about your DD losing weight - we are in the same position, I don’t think she eats enough during the day at college nor at work at the weekend. I think DH buries his head in the sand, says she doesn’t look like she has lost weight (she wears baggy clothes - how can he tell?). I am considering taking her to the doctors to have her observations done, may say to DD that it is her two year anniversary check up since diagnosis as she will kick off if she believes I instigated the weigh in.
Hope the exercise isn’t a problem, DD does some activities but is ‘thankfully’ quite lazy.

@Girliefriendlikespuppies good your mum can move in while you are away but sorry you have that stress in the back of your mind.
@Eyelashesoffire I try to plan just me and the younger sibling(13) time as much as I can(we are baking this afternoon). I also reinforce that I am here to talk about all her feelings but she is v v angry w her sister and I'm guessing feels conflicted about that so finds it hard to open up. I have let her know that i understand it must be hard to have all the attention on her AN sister (or at least that's what it feels like. I would prefer her to be angry w me because I want them to be close but that is not going to happen just now. I just hope in time our family relationships will heal again. I have a brilliant gf who if we have had an awful week will take DD13 and make a fuss of her(she's like an auntie to her) Being in our home can feel v uncomfortable for her so it's a chance to escape

Hi everyone. Sorry for not updating or replying. We saw the doctor two weeks ago, he said she was healthy and wasn’t concerned….I wasn’t convinced but gave her the benefit of the doubt and she said she would eat more.

Things haven’t improved, I took her to A&E this morning as desperately needed help, She had bloods taken, ECG (which was 50) and was borderline being admitted to be put on bed rest and feeding. Consultant spoke to her and told her she is at medium risk of death if she doesn’t start eating. And will be admitted unless she makes immediate changes to her food intake. Follow up is via the GP. She is at home now and said she won’t always be vegetarian and wanted to do it as a challenge 😞. I am exhausted mentally and have cried so much today for her. Just devastated that it has got so far out of control.

I don’t know what 2moro will bring, if I thought praying would help her I would give that ago. ED team, Cahms and GP have all been notified. No idea when anyone will be in touch to offer help and support. There wasn’t anyone in the mental health team at the hospital today to speak to us.

Dinner I can't believe they let you take her home!! If her intake is that low she must be at risk of refeeding syndrome? She needs refeeding in hospital.

Have they given you a meal plan? And has she eaten since being home?

I honestly think you need to go back and insist she's admitted.

That's shocking they said she's medium risk of dying and let you walk out the door with her 😢

I was shocked, but not sure if they used the scare tactic with her? If they did then it has had a positive affect. She has eaten breakfast lunch and a snack in between, and has been to the supermarket with me.

Cahms have called they are assessing her on Wednesday. they said they will handle all referrals from now, and apologised for not getting in touch yesterday.

@Dinnerisburnt, so sorry you’re in this position. The risk factors have probably come from the MEED guidelines (on Royal College of Psychiatrists website) where there are a number of criteria that rank the person as red, amber or green. My DD is amber too, so I can empathise. Great that she’s eaten a bit more today, hopefully onwards and upwards!

How old is she dinner? You probably shouldn't be taking her to a supermarket tbh, part of FBT is taking them completely away from food so the involvement they have is when it's put in front of them and they're told to eat it.

That's good she's eaten today though, don't be afraid to take her back to a&e if she starts refusing again.

16, I took her with me as she likes to come and helps choose the fruit and vegetables and reminds me if she needs toiletries etc. Sometimes at the weekend she doesn’t leave the house all day so it’s an outing for her and gets her away from sitting on her phone. This is all so new, I don’t know what she should and shouldn’t be doing.

Hey @Dinnerisburnt, just wanted to send you a hug. It's really overwhelming at the start of this when you're trying to understand what to do and how to help. It's a daunting thing to have to deal with, but your dd won't be able to easily change, most of the work will come from you.

For young people the best evidence based treatment is called family based treatment (FBT). There are three phases to the work:

Phase 1: weight and nutrition restoration. Parents take over all control of cooking and feeding - the young person is not involved in choosing, cooking or plating food. They must eat all of what is given to them. This can be a very hard task indeed, and the person usually resists this. Parents are encouraged to see the eating disorder as a separate part of the person, so when they are very upset or angry to make sense of this as the eating disorder fighting back, not your dd. During phase 1 the person also learns to cope with 'fear foods'. Medical help is often needed in this phase as if the person has been eating very few calories per day, initially they are at risk of 'refeeding syndrome' because the electrolytes in their body become unbalanced when they start to eat more. After the risk of this has passed, the person eats 3 meals and 3 snacks every day, with increasing calories, as well as a lot of fat especially animal fat. This helps a malnourished brain recover, and can take a long time, at least one year but likely more.

Phase 2: once weight is restored (and will probably need to be higher than an initial target set) the person and their family gradually change the balance of power in terms of food and eating. The young person slowly takes over control of some parts of their daily menu. The goal is for them to choose foods that will help them to maintain, or probably gain weight (young people need to continue to gain weight until early 20s).

Phase 3: might involve psychological therapies to help undertake and treat any underlying issues which contributed to the development of the eating disorder.

Actually I realise I don't know what phase 3 is, I've been so focussed myself on phase 1!!

If you haven't already got Eva musby's book that is a very good place to start, and she also has lots of short ish YouTube videos. BEAT is a charity who have lots of info and run parents groups - we did the 'developing dolphins' group recently which was really useful.

And this group of people here are amazingly supportive and knowledgable. I know I'd be in a much worse place without everyone here, so do use us as a resource / sounding board.

@Eyelashesoffire my ds is about that age too. I've tried to be as honest as possible - told him that his sister's brain has a part which is poorly, and this part is bullying her to not eat. I've said it doesn't make sense, but his sister can't help how she is behaving at the moment. I've said it won't always be like this, and she will get better, but at the moment it is very hard. I've said that this is what families do - they look after each other when one of us is sick or not doing well, and everyone needs help at one time or another. Then whenever there is a particularly shouty day I make sure to check in with him and just acknowledge that he's probably feeling upset, tell him I'm feeling the same. Last week we talked about how to make sure he has things which make him feel good in his life - sports clubs and friends and hobbies at home.

It's super hard, I feel like I'm clinging on with my fingernails to keep everyone ok, and failing miserably with quite a lot. He seems to respond well to just a completely honest conversation about how hard it is.

We have had a grim weekend, although with one little ray of sun - my dd got her period after not having one since late spring! I'm trying to hang onto that as a positive about her body recovering, although her mental health is very low just now...

@greydoor

thank you so much. Overwhelmed is exactly where I am at.

i have ordered the book you have recommended.

I have just dropped her into school for a few hours, she has eaten this morning and has taken the lunch I made her. Just need to keep her going till we get to Wednesday. She has been studying in her bedroom yesterday and today so I think it’s important for her to go to class and get away from me!

@greydoor thanks so much for your reply, and such brilliant news your DD's period has come back. I remember feeling so happy when that happened for us, definitely a 'green shoot'.

I've realised no-one has ever sat us down and explained FBT in detail. We're definitely not tackling any fear foods, though she cut out so many things before the ED, I'm not sure where we'd start!

I tend to keep to the bare basics when talking to DS - DD is ill and you don't have to do anything, leave it to the adults. He's so sweet, if there's a last piece of something he knows she'll eat, he'll leave it for her. I could probably explain a bit more to him.

I struggle between what is a fear food and what DD actually does not like to eat - what are the obvious fear foods than sufferers avoid? I am always wary of enabling the ED or accepting that DD does not like certain foods. We have been in this for a few years now and I can't honestly remember what she didn't eat pre-illness, she was never a fussy eater as a child. What is typical for a sufferer to avoid?

I'm not entirely sure but my son avoids chocolate, biscuits and anything pudding related. They were all his favourites prior to becoming ill, he said the feeling is worse with those foods. We are introducing some, not all. The dietician said due to his age and the strong feelings he'll be experiencing to take it more slowly, I have noticed him looking longingly at cake he's so tempted to eat it, goes as if he's going to and backs down.

@Nomoreplease23 I have the same problem wondering what she genuinely doesn't like. She's got quite a lot of sensory issues which complicates things. She turned pescetarian at age 9/10. She then slowly phased out savoury dairy, also milk, yoghurt, eggs, prawns, veggie sausages, quorn. Mostly protein. This was all before the ED. But she will eat surprising food - mostly dessert food (just like my mum weirdly). It's very hard to predict what she'll eat.

It is overwhelming in the early days/weeks and a steep learning curve!

Generally speaking the care giver does all the food planning, food shopping, food preparation and makes all the food related decisions.

I used to try taking dd to a supermarket but it massively increased her anxiety and she would try and physically stop me putting foods like biscuits in the basket. You have to completely take over and although the sufferer might kick off initially they will actually be relieved that those choices have been taken away from them.

I'm not sure that's the most authoritative account of FBT, but learning is my coping style. I am about half way through reading the FBT manual as well as ones for other therapeutic approaches and trying to read literature about evidence. Clearly this stuff is not meant for parents though, and although I realise I'm not the intended audience, the way eating disorders are written about is quite brutal... so it's slow ish progress as it's quite upsetting.

We are not doing fear foods either, partly because all I can cope with in terms of sheer headspace at the moment is refeeding, and we are not yet open to the Ed team so don't have any access to an expert to help us think about it. She is so utterly furious with me at the moment too, I don't think I could really explore what is a fear food for her, so I think we will leave it for the moment. My dd is sticking quite rigidly to a few options for breakfast, snacks and lunch, and I'm kind of just allowing that at the moment. We have a lot of variety at dinner, and most of her food is high calorie / fat - she has a mini pot of Haagen dasz for evening snack every day, and I'm happy to stick with that as it has so many calories in it I don't want to have to find those calories elsewhere...

She said it helps her know what to expect, and I can understand that. I suspect she may be autistic, and so I can understand that having predictability helps, but I'm kind of also aware we might need start switching things up so she doesn't get stuck. I suspect cake, biscuits - sociable 'pleasure' food will be the kind of things she struggles with most, choosing a pizza or burger over a salad will be a hard bit of work for us when we get there.

I have just given her a milkshake which is at least 800 calories for her snack...

@greydoor are you on a waiting list for the ED team? It sounds to me that you are doing an amazing job. A milkshake of 800 calories sounds incredible!

I am wondering if DD is autistic, or at least neurodivergent in some way. She was showing lots of signs of OCD type behaviours before the ED. As a child I would have said she was 'quirky' with very intense interests, she mostly arranged / organised things for play, she has never understood sarcasm. She wasn't difficult to parent but I'm very similar to her, so I feel like it was all within my comfort zone. No-one in my family has an actual diagnosis but there's a few that are definitely not neurotypical. I'm not sure if it would be enough for a diagnosis but her differences have definitely affected her life. I'm still trying to get my head round it all, I work with autistic children with very high support needs and she is nothing like them.

@Eyelashesoffire yes, we've been on the w/l since start sept. We are probably doing ok in this part, I like cooking and am not too bad at loading in fat and calories.

I suspect we are quite a nd family, dd definitely had some sensory food issues ever since weaning, some foods were just too unpleasant in terms of texture to tolerate, and she complained about auditory sensitivity at school and other clubs and things. She struggles socially, but I think she probably masks just enough for things not to be too obvious. Very much how I am too!

Her mental health is very low though, and so I'm really hoping we get to the top of the list soon so we can try and help her with that somehow. Tbh even some support for me will probably help quite a lot, my own mh is taking the brunt of this all...

It seems like a postcode lottery with waiting lists. My friend waited 9 months and we didn't wait at all. We waited longer for the GP appointment than to see CAMHS. I hope it's not too much longer for you. I've found CAMHS very supportive so far thank goodness. I can empathize with MH taking a beating, I've just referred myself to IAPT. Not sure what they'll provide but I've got to be proactive, my DH has been great with appointments but realistically it's me shopping and meal planning. It's a heavy load with no end in sight.

DD has just asked about a 5 day french trip next year, I'm not sure how she thinks she can go!! She is eating the meal plan now and we're back up to 92 WFH but there's no way we can start paying money towards a 5 day trip, it's nearly £1000! If she has a setback and we lose the money....

Hi… really need some advice please (might be long! sorry!)

DS is 14. Home Ed but goes to college 3 days a week and loves it.
Problems with food started about a year ago, came and went. But since about September he became worse. Barely eats. Some days he must have no more than 500cals. Other days he eats more but feels so guilty for it.
He will be starving and even cries, but he doesn’t want to eat because he will get fat.

He was in medium clothes now in xs/s. But he has also got a bit taller.

He thinks he is fat, has awful body image just wants to be skinny.

Recently it got so bad he started to feel faint, he’s cold all the time, tired, emotional, pasty looking. He can go to 10pm at night before he will eat and doesn’t drink a lot. I didn’t want to force food on him, but just gently encourage and support him with eating.

We went to GP bloods done and said he had low iron and we should call cahms.
Cahms decided ED team needed to assess him and we went today.

3 hour assessment. He was dehydrated, it took 5 attempts to get his blood. Had all the tests and 2 hours speaking with nurse and dietitian.

They phoned later and said he doesn’t have ED they think he is just anxious because of issues in the past- now completely resolved and he even told them his life is good he just can’t eat.

The have said we have to go back 21st to re do ECG as showing long QT and they will do a nutrition session with him and discharge from service.

Also said I need to make him eat 3 meals and 3 snacks a day. No choice in it, he should eat what I give him.

I feel like they were saying I am the one letting him not eat! (Ex nurse and I now work in MH recovery!) so I know how important it is!

He is upset as he feels like they are saying he’s just anxious about my partner leaving (we have no issues, but I had a difficult marriage to his dad and another relationship that was toxic in the past) he feels they have not listened, they have not validated his feelings or what he is saying is happening with him.

I honestly don’t know how to deal with this now. Any advice would be appreciated.

@Roui Sorry you find yourself here - but welcome to the thread. Very shocked to hear about the proposed discharge from the service. It sounds like anorexia to me - especially the guilt after eating. They are right about the 3 meals plus 3 snacks though - family-based treatment (FBT) is the first line treatment and consists of essentially this: sitting with the patient 6x a day and coaxing them to eat. It is hell, but does work for most. Look at Eve Musby's You Tube channel and books for tips on how to persuade. With his symptoms though, he already sounds very physically sick and I wouldn't be at all happy about waiting 3 weeks for another ECG, given the QT results. As an ex-nurse, can you be checking for bradycardia in the meantime? I think I'd also have a very low threshold for taking him to a&E.

Thanks for the warm welcome @NanFlanders
and the advice.
I’m really frustrated by the situation as from all the nice guidelines I have read, he definitely falls into the AN category.

They said not to worry about the QT which I feel is impossible to not be concerned about.
I might speak to the GP and see if they will re do it before then.

Roui he doesn't sound medically stable at all so it's shocking they let him walk out when medical checks were abnormal. Personally given all you've said I would take him to a&e, ask for the MEEDs checklist to be done and say you're concerned about his heart.

He is definitely anorexic and I'm absolutely incredulous that they are suggesting otherwise when he ticks every single box for anorexia!

That said the treatment is FBT so he does have to eat 3 meals and 3 snacks a day abs he does have to regain all the weight he's lost.

He will become extremely distressed and you have to learn to manage that distress in order to save his life.

Have a look up thread as there's been recent chats about the rules of FBT.

@Roui my god I have heard it all now!
So sorry they have not taken your DS's medical emergency seriously.
I am outraged they let you walk out with an abnormal ECG. A long qt phase is v dangerous.
Did they say when his bloods will be back? Did you get a wfh? Have they given you a meal plan?
Tbh I'd go to A&E. He's cold, tired, lethargic, has lost sugnificant weight, has severely restricted cal intake, is restricting fluid intake and has an abnormal ECG
These are all red flags for being at serious risk.
You can't start FBT without ruling out refeeding syndrome. Drastically upping intake could have serious implications on his electrolytes and I think he may need monitoring whilst he starts a meal plan.

Honestly he has been treated appallingly. Be clearly has AN not anxiety!!!
Please get another medical opinion.

Roui I also think you should get a second opinion. Your DS sounds very unwell and it will be very hard for you to turn this around on your own. You also need to be aware of refeeding syndrome. So sorry that you are going through this but you will find a lot of good information and support on this thread.