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

[Curlyhairedassasin]

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

@WhatsitWiggle our ED team take a dim view of these swapping practices but we are doing things like that whenever possible. DD is demand avoidant too and probably autistic. We struggle hugely with taking control so I manipulate wherever we can. If we would cook for them, we would enrich food too and nobody would bat an eyelid. I'd say, go ahead! We certainly do it.

@JuliusCaesarRomanGeezer I'm sorry life has brought you to this thread too, it's a terrifying place to be watching your child controlled by a negative force.

That's what I was worried about - I read about "sneaking" cream into cheese sauces and so on but she eats such basic food that it would have to be a swop. And she's always been sensitive to foods - she knew instantly when I changed Heinz ketchup to Tesco in a bid to save money! (To be fair, I could taste the difference too, just didn't care).

My dd is exactly the same. Not diagnosed with autism or PDA but treated as though she has these due to her reactions, anxiety and behaviour etc. Sensory issues often go hand in hand with autism and I also have no say in what dd will eat. She eats the same thing pretty much every day. It makes her feel safe. Any changes would have to be very very slow.

I recently did the Jenny Langley course and she talked of a woman, who would only eat tuna in brine so the people caring for her bought a dropper and used that to slowly add minuscule amounts of oil to the tuna. The carer built it up slowly and used this method and the woman’s brain slowly went into recovery as it was receiving much needed fats.

Unfortunately my dd won’t drink any kind of hot chocolate. However, if you are going to do this or add any kind of fats - oil / cream etc the idea would be to do it slowly so that the changes are imperceptible. Your dd perhaps hasn’t noticed the cream cheese as I imagine they taste pretty similar. But the options is a readymade hot chocolate to which you just add water so she’d definitely taste the difference between that and full fat milk. In your case, I would use the dropper method.

@Curlyhairedassasin ah, good to know I'm not the only one desperate enough to try these things - you do what you can, right?

I'll maybe try mixing it up first, like they suggest when changing a cat's food from one brand to another. If the change is gradual enough she might not notice.

@Mummyoflittledragon I contacted Jenny Langley yesterday to see about her webinars! Good to know I'm not totally rogue. DD won't drink cows milk full stop, so i was thinking of replacing/mixing the options with regular cadbury instant which is 112 calories.

I am sorry to read of everyone’s struggles. Things aren’t going so well with dd atm either. She’s very much holding me to ransom and enjoys restricting as she thinks it upsets me. It feels like a child pulling the legs off spiders.

I hope things go well for your dd at the PRU @Curlyhairedassasin

I am so sorry for you and your ds @WoodenTrain. He is the same age and year as my dd poor lad. This feels like medical negligence, especially as you actually don’t know the real state of his health. I really hope something happens for your him soon.

That sounds infuriating @greydoor. You are a lot further along than us but it just goes to show how long things take and how much more of a fight we have on our hands.

@WhatsitWiggle Personally I wouldn’t change brands. Was it you, who said about the ketchup? They know. I implemented greek yoghurt for breakfast (the only thing I ever insisted on) and changed brands from what dd would occasionally eat as the fat content was higher. Silly me. Now dd won’t touch any greek yoghurt now, she just started dumping (as she will only eat breakfast in her room) it so I made things worse. I would just add half a teaspoon of milk in place of the water. Then continue a couple of days then increase in tiny, tiny increments. Edit - good luck with these. Jenny is brill.

The only observations we have done are weight, BP and HR (sitting and standing) every 2-3 weeks. His HR is fast, often around 90, I think that’s because he is anxious. The main concern is always the difference between his sitting and standing BP and HR. He always flags as amber and sometimes red. But every time the ED team have told us to go to the hospital because he’s flagging as red we get sent straight home and told his observations are consistent with someone with low intake. Of course the message that has sent to DS is that he’s fine and healthy as he is.

Hi, looking for advice for upcoming CETR please. Dd12 AN and ASD is currently inpatient on general paeds ward - been in 3 weeks and likely there a couple more.
planning for discharge - ED team want to keep her in community and treat at home. We want whatever is going to give her the best chance to make a full recovery so are open to all options . Team are strongly advising against Tier 4 as saying not suitable for a 12 year old with ASD and v limited places anyway.
DD is on the DSR so have frequent meetings and are trying to pin down exactly what our home support package would look like. So far they have said:

• visit from home intervention team 3 times a week. They stay for around an hour and a half and over one meal time (can’t do breakfast or dinner as they work regular 9-5 hours). When pushed for more, they have offered 2 online support sessions to cover the other two days (which I don’t think DD would engage with )
• apply for an EHCP
• referral to social care and have said she should have a social worker but first referral been refused and said to re-refer when nearer discharge.
• support from specialist services around her ASD, e.g specialist ASD key worker from MIND. This is nice but doesn’t address her immediate health needs.

The commissioner who sits on the meetings keeps asking us what we need but we don’t know what’s available and the things we have asked for - art therapy and additional meal support have been turned down .

I have come to the conclusion that the message is you are doing this at home and it’s going to be a long journey as they seem to be offering more support around respite for us as parents and for the other two children etc rather than addressing our DD’s immediate needs. So , does anyone have any suggestions re what we could practically ask for at the CETR or what ideally a home intervention model should look like? TIA x

Little mole** how unwell is your dd (wfh) and how much is she now eating?

Tbh the level of support you're being currently offered sounds more than most of us have had.

What I would suggest is you spend as much time now , while your dd is inpatient, is reading everything you can about FBT. Eva Musby, the Maudsley one etc.

Also start meal prepping for when your dd comes home.

If they can establish 3 plus 3 while your dd is in hospital hopefully the transition home won't be too bad. I would want to see that she is eating the 3 meals and 3 snacks without too much push back before agreeing to have her home though.

Thank you - that’s helpful advice.

she is 71 %wfh - admitted due to very low heart rate and low blood pressure. She had an ng tube but began to eat and complete her meal plan through fear of them using the n.g tube. Hopefully she will still be able to do this once home and the immediate fear of the n.g tube being used is no longer there.

I would definitely want a plan B so what happens if she starts to restrict, when do we go back to hospital etc.

It's good the fear of the ng tube is motivating her to eat.

Have they mentioned medication? For some kids meds can be helpful especially when they start to eat and the feelings of fear and desperation can be overwhelming.

Can you contact the ED team to directly yourself by phone for advice? Or contact BEATS for advice? I imagine your ds still hasn’t been diagnosed and this in itself is so strange and imo warrants a PALS complaint. I raised one for my dd as she hoodwinked the psychiatrist into thinking she was fine and was discharged also without diagnosis, with no onward referral anywhere else (which is pretty unheard of) and was told she didn’t have an eating disorder, which has caused all manner of issues.

I called the CAMHS ED clinic yesterday as things aren’t running so smoothly and I had some really great advice from the nurse I talked to. More advice actually that I / we had for the entirety of the months dd was under the clinic. And she told me my concerns would be added to the complaint, which would be addressed by the end of next week.

If you can get someone helpful on the phone, you may get some good advice as to what to say once you arrive at hospital. Or is there an alternative hospital not too far away?

@Littlemole11 and anyone else whose DC is off school/uni and in the early stages of recovery. My DD found beading (making bracelets etc), crochet and painting really helpful after eating - when the ED thoughts were loudest. She also found writing a journal helped although it did take some time for her to see the value in writing stuff down. We found diaries with illustrations or quotations best - easier than staring at a blank page.

Regarding being sent home by A&E when your child is presenting with anomalies which are consistent with the ED. When we were called by the doctor I would quickly walk ahead and briefly explain to the doctor that telling her everything was “ok or typical for someone with AN” would send the messsge that she was fine. Instead I asked that they be very clear that she was very unwell and needed intervention from ED specialists.

Thanks, yes, that’s what we need , a definite plan B with time scales on. It’s a scary thought her coming home and it getting as bad as it was before but preferable if we can make it work.

She is also much more restricted on movement in hospital. We can try to restrict her movement at home but it is harder with stairs to go up and down and her sisters around to look after as well.

I’m keen for her to stay on the paeds ward until she is gaining weight consistently and is above her pre admission weight - she lost 1 kg very quickly on admission , probably through anxiety and since then has gained a total of 400g over 3 weeks. I would definitely want her to have restored the weight she’s lost on admission and gained more before discharge . I can see an improvement in her mental health just through being nourished regularly but would people agree to try and insist on more weight gain before discharge? TIA

I’m not sure if this is correct or not @Littlemole11 but I was under the impression that they should gain between 500 g to 1 kg per week in hospital with intensive treatment/supervision. And that you can hope for 250 to 500 g per week at home. Of course it’s not linear and some weeks there will be losses, other weeks gains and other weeks no change at all.

My understanding also is that it is quite common for them to lose weight once they start eating again, I think it’s to do with increased metabolism.

We’ve never been able to insist on anything treatment wise. It seems that the system is under such pressure that they are constantly in crisis mode.

We’ve never been able to insist on anything treatment wise. It seems that the system is under such pressure that they are constantly in crisis mode.

I can only second this. What is available in term of 'care' seems to be hugely dictated by the completely limited and underfunded resources available.

We were on s general ward for physical stabilisation and they really only do that. As soon as the DC is physical stable enough to be discharged, it will be back to community care - at least that is our experience. The only option to get longer term inpatient treatment will be via getting a tier 4 bed in an ED unit but there you have thd issue that there just enough beds to meet demand.

Thank you - that’s helpful to know roughly what weight gain we might be hoping for.
yes, that has certainly been our experience so far that you are left until your child is in crisis before receiving any help.
i was (naively perhaps) thinking that as we are currently in hospital we could use that leverage to basically refuse to have her back at home until she has at least regained the weight she lost on admission. It seems crazy otherwise as she will likely just end up back here in a few weeks time ..

Hi all, hope that everyone is ok or at least surviving today.

I have dd currently experiencing ed and ocd around cleanliness.hers is a 3yr struggle with mh....short version is that a regular 14 yr old, covid then Alcohol abuse, extreme Self harm, suicidal phase, depression, mild drug use (weed), lapsed into ed last summer for dramatic 3 months which we turned around with therapy and treatment at home. April-sep 2024 were best she's been since this started. Now it's changed and after 3 week decline we're into ocd about cleanliness. 163.5 cm/s and 40.5 kgs....

My question is about the horrible things that are said by sick kids. Do their words ever stop hurting? Until now it was ok, but I feel like I've hit the point I fought to keep her home and help her get better for all this time. Now I just want to hide from her. How can I stop feeling like this?

Hello, I've come across this thread whilst searching for support for my DD13, who was diagnosed with anorexia at the start of September.

She went from trying to eat less sugar and deciding to take up running- things we supported at the time- to eating one small meal a day by the end of the summer holidays. In hindsight we should have realised what was happening but it all progressed so very quickly.

We took her to the GP, who really listened and after doing obs and bloods (and DD passing out in the surgery) referred her to ED service. From her diagnosis a few days later, she was admitted to hospital for refeeding. She stayed there 6 days and managed to eat most of the meals and snacks.

Since she has come home, we've attempted FBT with the help of the ED clinic. It feels like we are getting nowhere, as she failed to gain any weight, in fact last week she had lost half a kg.

We were initially so relieved to get her eating 3 meals and snacks that we let her have some control, as that seemed to be the only way to get her to eat. She returned to school part time, taking her lunch and she seemed much happier to be back at school, seeing friends and has thrown herself into her schoolwork.

At the last clinic appointment they advised that due to the weight loss we needed to totally take charge of all meals and snacks. Since then all hell has broken loose. She has started refusing meals again, only eating what she feels are 'safe' foods and she won't tolerate any increase to her daily intake.

She won't touch foods with sugar, or tolerate any fruit juices or smoothies. Breakfast is religiously an apple with Greek yoghurt, afternoon snack is only ever an apple. Anything else we give her is ignored or tipped away.

We've tried being empathetic and compassionate, but this doesn't work with her and just gets her more angry. She's never really been able to talk to us and open up about stuff, she's very introverted and just won't let anybody in. She does have friends but says she feels she can't talk to them or be herself around them. She can't bear physical contact and won't let us give her a cuddle or even put an arm around her. She feels like she is so alone. She also self harmed last year and managed to stop, but since the ED I think it has started again.

She's currently sitting outside on the trampoline, after missing out on going to watch the fireworks with the rest of the family as she didn't eat any dinner. She wanted to make a sandwich instead, but we insisted she eat the burger. She's also now going to have to miss seeing her friend tomorrow, even that isn't incentive enough for her to eat.

Sorry that this is so long, just feel so helpless and that I'm not even sure we are doing the right thing trying to stick to FBT. It feels like this is going in the wrong direction and she won't be able to go back to school next week or see her friends, all things which help her to mentally recover and help her to be more willing to eat. She feels that we are controlling everything and have taken everything she cares about away and now she has no incentive to eat. There is so much hatred and anger towards us right now. It feels like our family is falling apart and her younger siblings are suffering too.

I'm sorry that you are all going through this as well, it is such an awful, horrible illness.

Hi icy sorry you've had to find us.

FBT does work but you have to be like steel in your resolve that they will eat what you give them.

Life stops until they eat so if that means no friends or school so be it as you are fighting to save their life.

You need to completely take control so no more apples, everything you give her needs to be absolutely packed with calories and the fats her brain needs to recover.

You have to accept it will be hell, but what you're seeing is the anorexia who will hate you for trying to save your dd. Good you want the anorexia to hate you! You are anorexias worst nightmare as you are not afraid of it and you know exactly what is needed to get rid of it forever.

Base a meal plan around what you know your dd likes and what you can cram calories in so for example porridge for breakfast can be made with double cream which can be 800 cals.

Snacks could be flapjack 400cals

Remain calm and impassive when she kicks off

'I'm sorry this is so hard but you have to eat this now'

'Trust me this is exactly what you need'

'Pick up your fork and have one mouthful... '

'I know exactly what you need'

'Once you've eaten this we can watch a film/do crafts/play a game'

FBT absolutely does work but you have to find an inner resolve and confidence that you don't even know you have.

Icy a lot of parents found to get their kids eating initially meds were helpful, olanzipine is one of the main ones as it quietens the ED voice and makes them more hungry.

Hi @IcySloth sorry you've had to find yourself here. As girlfriend says, it takes a lot of resolve to get them to eat. It's good that you have the support of the clinic, but they may disagree with some approaches that we have found useful - the main one being 'hiding' calories in food. I used to focus on small meals with maximum calorie density, so milkshakes that were half a glass but easily 800 cals, porridge with double cream, full fat Greek yogurt with double cream whisked in. Making sure there are lots of animal fats in every meal, it's really useful for brain recovery. I read a parent comment on a Facebook page "if you have to drive through hell, drive fast", and I really took this to heart. This goes against what we were (eventually) told by camhs, so you might need to think about how you want to do things in this respect. Weight restoration is just one part of recovery, but our experience has been that this had to come first.

Your dd sounds really like mine, and anorexia made her so much more distant from us. There were a good few months that she would scream that she hated me and wished I was dead. It was horrible, but as she gained weight she has really changed. We are having a bit of a blip at the moment, but even so she skipped up the stairs to bed tonight telling me she loved me. So don't be disheartened by how hard things can seem at first. It takes a while but things can be turned around.

Sorry to ask but how do you make anyone eat? I can't force feed my dd. She refuses to eat and I've tried all the straight neutral info, food is fuel, not enough fuel leads to tiredness, dizziness, mood swings, extra hair growth, lack of circulation etc etc
I've cut off phone, tv, etc and still no food was eaten. I've been to a&e and said this is starvation diet - minimal intake of approx 500 cals a day. I've just been told to keep going. But how?

Ultimately if you can't make them eat at home they need inpatient support. Some of the parents on here have hit that wall and despite doing everything they can it's just not enough.

For some kids they need sectioning and admitting to an ED unit to start making recovery.

I think in your situation I would very much push for that to happen as much as it would break my heart.

@SimSam my daughter and I share the characteristic of being strong willed and stubborn. I basically said that she WOULD eat all food presented to her, it would be 3 meals and 3 snacks every day. She could sit on the sofa with food and watch tv, and we let it take as long as it took. If she tried to get up we would not allow her to leave the room. If she tried to discard food I told her I'd bring her double. I told her that if we were still sitting at 3am that wouldn't bother me, I'd still be there with the food, and she would eat it, along with everything else that had become due during the time.

This was interspersed with lots of encouragement and care. I told her I loved her and would not allow her to continue to be ill. The only way out of this nightmare was to eat her way out.

There was a lot of shouting and screaming in those days. My neighbours could hear a lot of it.