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

@Glitterfarti what about buying diet Fanta and full fat and just swopping them? I know ed team don't like that but we do it with coke as if not ds would drink coke zero he's mainly on water and milk, occasionally a glass of orange juice so we really didn't want to lose those couple of extra calories. Every little counts at the minute! We've had a peaceful calm breakfast eaten with minimal pressure, I feel like I'm on edge.........

Struggling with DD17 independence. She has gone out now, she ate half her brunch (bagel, egg and bacon) and asked that I wrap it to take out, she will eat later (🤔). I do feel that we are slipping, and at the same time I am mentally stuck at the refeeding stage of three meals and three snacks with full supervision which we are not at, and although we are in the maintenance stage I can’t let go - we have no safety net - no weighing or obs and with her age we don’t have the threat of pulling her from college like we did two years ago. Mentally she seems OK but I think she puts on a front. I am exhausted. DS13 eats twice as much as her. What can you do when they are 17, she is so defiant and saying college is a prerequisite of eating she would walk out.

Nomore no idea but we're in the same boat.

Dd remains v up and down with how much she eats. She generally does really well with dinner but I think that's because she's usually v hungry by then as she's not eaten enough all day.

She also won't help herself to anything 'extra' which worries me as to get through life you need to be able to respond to hunger queues.

@Girliefriendlikespuppies yes, DD can come in from college probably hungry and eat a snack independently, then reduces how much she eats for dinner. I see it as never eating beyond the ‘target’ she has in her head, substituting one eaten item for another. Even when she says she is hungry I sometimes wonder if that is for my benefit.

Could I ask about your dd, did/does she have AN and bulemia? I know they can drift from one to the other but feel CAMHS are ignoring the bulemia part.
DD started of with long history of binging, then purging followed by true AN. Recovering now but worried she could start binging& purging

@Temporarymember it is a huge worry. Some teens will just switch methods if one isn't working or they are very restricted say by being monitored or controlled, some accept this, some fight back very strongly. My dd is about 18 months-2 years in and definitely in a recovery but early stage, she is also technically an adult, so we are more limited in what is appropriate levels of supervision and also practically what can be done- obviously when she was younger, I did try to supervise her but she would stay up til 2 or 3 am til I had to sleep and then do it. In the end, we went for a 'least worst' solution rather than an ideal one.

I agree CAHMS tend to have a one size fits all model, they aren't very good with bulimia (which tends to worsen through feeding techniques) and they don't know much about lots of ARFID disorders, again which are often based around extreme stress/food aversions and again don't always respond in typical AN ways.

I don't know the solution, other than to be very honest with them about what is working, what the fears are (that one way blocked will set off another) and get them to address the bulimia/purging fears directly. A lot of supposedly recovered AN teens joggle along with bulimia into their twenties and thirties, so my daughter tells me (she follows a couple of recovering people online for inspiration) and unfortunately this pathway is often easier to hide, especially as they become adults and so are not really within your eyes/control most of the time. Plus often bulimics are not as alarmingly thin so don't set off the alarm bells even though their health risks in terms of heart, electrolyte issues, muscle loss and so forth are really profound (plus perforations etc).

@Temporarymember I mean to say, in all that waffle, just see if either you or your dd can bring up the purging/bingeing risks. Often eating a lot due to increased cals/ending restrictions can trigger this again, so I think being super honest about your worries is the way forward, with her and them.

Thank you Blinkityblonk. DD never confided much in me so FBT was a nogoer.
I tried to bring it up with her and camhs when I thought she was binging but both denied it. Camhs don't see it as a problems if she eats a lot....
She is off to uni next year so can only hope for the best. But good to read your post.

We are not having a good weekend.
Friday night got a take away pizza, he devoured 6 pieces. Saturday day he was bright and more energetic said he felt good, but refused to eat. Finally got him to eat a few chips and Kiev but that was it.
Took him to the shop to try and tempt him, he wanted Dr Pepper zero (prefers the taste) agreed a to peanut butter Kit Kat chunky, but then refused to eat it. Hes slowed down in his movements, I know he doesn’t have the energy.

We are starting to now threaten that he can’t do anything he wants like concerts he due to go to unless he starts to eat more.

part of me feels he’s now got my attention and he is holding on to it by not eating. Do any of your kids seem to do it because you are giving them all the attention?

ED clinic in the morning so we will see what is said but I know I am going to have to fight!

Hey @Roui sorry to hear it's been tricky. There's a useful ted talk I watched about brain imaging studies which show that the 'pleasure' pathways in the brain of people with ed don't behave the same as those who don't have an ed. So food isn't tempting, and actually the pleasure they might previously have got from anything (food or other things) is much less intense.

For people with an ed, I've been seeing it like there is a kind of switch in the brain, and once this has been switched, it's changed. So the things that previously would have helped don't anymore. I don't think you can tempt someone out of an eating disorder - that's my opinion and others might have a different experience, but I can see that my dd is almost disgusted by food, and so I imagine myself being presented with something truly disgusting (I imagine a pile of poo!!) and trying to feel happy eating it.

I hope the appointment tomorrow goes well. When we realised my dd had an ed she was in a similar place to your ds, she was completely lacking any energy, she was falling asleep all of the time, and freezing cold, even on holiday in a hot place. From what you've said I do think your ds has an ed, and so I hope you can get started turning the tanker around asap xx

Just wanted to say hi to @lazzaroo too. Sorry your dd has been struggling - sounds very much like where we are.

@Glitterfarti - this whole thing is so intense, it's almost like a full time job in itself. I was trying to explain to some friends just how time consuming and draining the whole thing is, and I just couldn't quite get it over!

Hope everyone has had an ok weekend. Dd gained half a kg this week so I feel ok - so interesting to reflect on how a gain makes me feel safe and staying the same really unsettles me...

Hi @Roui AN (which I am personally convinced your DS has) is a biological based illness triggered in genetically predisposed individuals by weight loss. Its irrelevant how the weight loss occurs and why. It's irrelevant that he might have had 'weight to lose'. The fact is his severe and rapid weight loss has triggered an eating disorder and he is now risking his health, and life, by severely restricting calories.
Your DS is being constantly told by the ED not to eat. He is being bullied by the ED because he ate the pizza and so is being told not to eat. So he doesn't eat. He is powerless to resist that voice alone. He needs someone else to do it for him.
He wants that KitKat. Desperately. The ED will not allow him to have it. Often sufferers will go round a supermarket and express interest in foods and then refuse to eat any of them. They WANT to eat them, but CAN'T.
This is why he needs to be removed from all food prep, shopping and decisions. Remove that quandary from him.
You decide on the food, cook it, plate it and 'make' him eat it. By any means possible.
Yes he should not be at concerts. If he wants to he has to eat. You have leverage.
Please do not leave tomorrow's appointment without the provision of ongoing support and regular physical monitoring.
In my view he should be in hospital.

Hello all, apologies for crashing your thread. i have started one but it is quiet and I hoped some of you might be able to help.
I am seeking any suggestions or advice to help my friend, whose DD is restricting to around 200cals per day and has dropped over a stone in the past month. She will try to arrange an urgent GP appointment tomorrow ( she only became aware on Friday, DD has been hiding / binning / skipping food) and wearing baggy clothes to disguise weight loss.
What should she be doing NOW - apart from the GP appointment
what should she do about food / sport (her DD is very active and is still doing all her sports but not eating)
Any advice at all? Or any pointers of websites or organisations to try for advice?
Thanks so much.

@SupportNeededED if she is on 200 cals (I guess you mean 200, and not 2000) she needs to be inpatient in hospital. This is such a small intake, it is life threatening (DD was admitted as an emergency because if all sort of issues caused by 700-800 cals). She needs to take her to a&e where they will do bloods, and an ECG. I would not leave that to an GP appointment, no matter how urgently they can fit her in.

On that intake, she needs to be on complete bed rest, no sport, no school, no nothing. Usually, the treatment is ftb (family based therapy) where family takes control and the patient has 3 snacks and 3 meals per day. However, if someone has been undereating, eating normally can trigger a life threatening re-feeding Syndrome (it is essentially a electrolyte imbalance as the body cannot cope with the sudden increase in food intake). Therefore eating (re-introduction of food) needs to be done as an inpatient as the patient needs daily blood tests to monitor if the body is coping. If she is only a managing 200 cals per day, there is a chance she will be tube fed. It is very very serious. Ask her friend to take her to hospital today.

Thank you so much @Curlyhairedassasin . That is all extremely sobering. She is still managing everything as normal at the moment and though slim, does not look extremely thin. I take it that despite this all your advice still applies?

Sorry to be so dim. This is all new to both of us. Thank you so much.

@SupportNeededED My DD was in school full time, doing some sport and was screaming, kicking and went ballistic when I called the ambulance. She didn't appear unwell on the outside. Ambulance crew tool heart rate, temp and did and ECG and she was bluelighted to hospital and admitted to the HDU. The tricky thing with an ED is that the patient can appear well when it is in fact life threatening. The starving causes electrolyte imbalances which affect the heart rhythm and can result in an cardiac arrest. Anorexia has a death rate of 20%. Many cancers have better statistics. Tell your friend to go to a&e.

there is also BEAT. They have a helpline. not sure if they are open on Sunday but worth a Google.

The problem won't be her weight but the rapid weight loss. it doesn't really matter if she is not 'that' thin at that stage. The effect on the body is similar if she is not eating. Bit gobsmacked that she lost a stone in a month and no help had been sought yet. I think that is extremely irresponsible. It is a massive, massive weightloss for a child (guessing she is a teen?).

She’s 17. Very sporty and very very sensible. Mum is a brilliant mum. Noticed a bit of weight loss but didn’t know till Friday the extent. Her DD wears baggy sports clothes and hoodies so it wasn’t obvious. DD has been taking meals to her room, taking lunch to school, she drives so saying she had eaten on the way home.

She contacted BEAT on the day her DD disclosed this (Friday night). They suggested GP on Monday.

Hi @SupportNeededED no need to apologise, we are here to try help anyone who needs it.
I agree with @Curlyhairedassasin that your friends DD sounds v unwell.
She needs to stop all sport, stay home tomorrow and seek urgent medical help. If GP won't see as a matter of urgency she needs to go to A&E.
Eating less than 500 kcals a day for more than 2 days is a red flag under the MEEDS guidelines ie a risk to life.
She needs full blood tests, an ECG to rule our a long QT phase, BP & HR on sitting and standing and a full weight/ height assessment.
Ideally in hospital. Who can get and crucially interpret the results quickly.
EDs are very sneaky and most of us don't/ didn't realise what was going on. It is hard not to feel guilty but your friend needs to move past this and take action.
And I agree refeeding may be an issue..
My DD was doing punishing runs and hours of training a day with a long QT phase and could have literally dropped down dead of cardiac arrest. She seemed 'fine'. She wasn't.
I'd really recommend A&E

Thank you so much @Lottsbiffandsmudge and @Curlyhairedassasin . I will pass this on to my friend.

Good luck @SupportNeededED your friend will need so much support to help her through this. I can't stress enough how much going to a&e helped my son, I'd seen the gp and was assured waiting 4 weeks was no concern at all if it wasn't for the people in this group I might of not taken him and I dread to think of the consequences. It got us help really quickly and all the right teams. My son was on 500-700 calories a day for a week and a&e were rightly so very concerned.

My question is about therapy. DD17 never engaged with the ED services therapist - it was too early and too raw - she hated the same HCP who was 'forcing' her to eat. We engaged an adolescent focused therapist and for weeks DD simply listened to her talk for an hour on the phone - I felt this was not beneficial. I heard a podcast with Mark and Maddy Austin (the newsreaders daughter who suffered from AN) and she referred to her treatment as occupational therapy - ie learning to live in her environment at home, with a part-time job and with studies (albeit reduced) - and it occurred to me that is what FBT is; although in our case we don't have the same support (Maddy Austin was a day outpatient for a year). Has anyone had a positive experience with therapy - was the therapy for other traits, ie OCD rather than eating disorder?
I always feel like I should be doing more for DD.

@Roui How did you get on with the ED team? Hope it was useful

We went at 8am this morning more bloods, ecg, BP and HR and weight.

He has lost 1kg in a week. HR flying up to 130 when he stands. ECG apparently has improved. He’s still cold and tired.
He cried having his bloods as he was so fed up. He has eaten well today. I have managed to get him to drink smoothies, have a McDonald’s cheese and bacon flat bread and a bit of banana and peanut butter on toast.

Just got off the phone to two nurses one of them did the assessment.
They are still saying he doesn’t have an ED.
They are saying he’s physically stable.
Tried to still stick to the narrative that he’s just worried about the future and that is why he is not eating.
Told me to keep feeding him little and often.

I pretty much lost my shit, asked them what exactly it takes for them to diagnose and eating disorder?? Him to collapse and die??

I told them they left me with no decent advice on how to deal with this and said come back in three weeks, for a nutrition session and then we can discharge him. Everything I know I have had to learn myself and that I had trusted them as the professionals but now feel that they had completely invalidated what he is going through.

They are saying they are sticking with the plan. Feels like they are ganging up now and making me feel like I am being a difficult parent when I am just trying to fight for him to get the right care before it’s too late.

I have literally been left to get on with it now. I’m so angry and frustrated with them. They are saying it will make him worse to have him in the service. Same bullshit all secondary mental health services spout. I do this for a job, and I am tired of battling against a broken system.

@Roui i am so sorry it sounds as though your DS’s illness isn’t being taken seriously 😒. Is there any way to get help privately?

My friends DD has had the GP appointment. She has been referred to the ED service at CAMHS as an urgent referral. She weighs 7st 7 at 5ft5 so has lost, my friend thinks, around a stone and a half. This puts her at just above 85% weight for height.

My friend doesn’t know how to deal with her DD, who seems to have completely changed personality. Her DD is so angry with her. It’s totally out of character for her DD who she has always has a fantastic relationship with. The DD wanted to go into the appointment alone but DFriend was worried that she would downplay it so went in with her. (She offered to go in just at the end to speak to the doctor but DD said if she was going to do that then she might as well go in for the whole thing)

Appointment wasn’t great - GP gave DD a grilling and she clammed up.

Referral might be three weeks. They have private clinics nearby - should she try one of those? Or are we in A and E territory? I think DD will refuse to go.

Roui I'm sorry they're not taking you seriously, I imagine it is because he's not technically underweight and that's what they're basing everything on 😕 tbh regardless of what they've said the treatment for anorexia is FBT which you can do yourself at home.

I would start taking control of your ds's food, plate up and give him the three meals and three snacks a day and use whatever leverage you can.

Supportneeded yy your friend needs to take her to a&e, that's a shocking weight loss and she could die if she doesn't start a refeeding plan under medical supervision. Your friend needs to start reading everything she can on FBT (family based treatment) the Eva Musby book is a good starting place. The personality transplant is sadly v v normal as the ED comes out fighting once it's been exposed.

Your friend will learn how to tell the ED behaviours from her actual dd.

Nan if you're lurking I was wondering how your dd is getting on?

@Roui this is so shocking. Do you have blood results and BP/ HR info? I link here the MEEDS guidelines. Download the College Report. JScroll to page 31..this lists the red flags for risk to life. You can assess how many of those he fulfils. Focus on the BP and HR stuff and his severe restricting. At the top of the table it says having 1 or more red flag should mean the patient is high risk..note 34 (bottom of page 31) specifically says those with a higher BMI should be assessed on other medical criteria and weight loss strategies. NOT their BMI
If he has any one of those red flags from the results from today go to A&E. Take th3 guidelines and fight for help for him.
@Girliefriendlikespuppies is right that you can do FBT without outside help but you need to rule out refeeding syndrome..are you convinced the people you saw today have ruled that out?

https://www.rcpsych.ac.uk/improving-care/campaigning-for-better-mental-health-policy/college-reports/2022-college-reports/cr233