Support thread 15 for parents of young people with an eating disorder

[Mummyoflittledragon]

New thread. The old one is full…

@CuppaTandBicky sending positive thoughts your way. My daughter has had a few stints in general and on the first one she had an NG for a while. They did try everything else first so it really is a last resort. They offer the food then a replacement equivalent. I think the NG decision then lies in continued weight loss and physical obs. It was all handled really well to be fair and she was well supported. Such an awful day watching that happen to your child but seeing the physical obs stabilise was a positive. I really hope she starts eating and avoids it x

Like @Tops16, they will make her have meal replacements if she doesn’t finish everything on the meal
plan

@CuppaTandBicky are you on a children’s ward? It’s a very hard place to be as others are there for an hour or two or a day and then leave. The nurses are kind but they will ask constantly what has been eaten and enforce the meal
replacement drinks.

Are the ED team supervising meals? Are there things on the plan she would usually eat? Please know you can bring things in from home or local restaurants etc. the hospital food isn’t great so that doesn’t help

They will enforce the feeding tube pretty early as she’s been admitted so they are worried about her physiical health. The feeling of doom is overwhelming, but you are now being supported and she will be closely monitored. Thinking of you. Keep posting if you feel you can as I fioubd talking the only way to cope xx

Thankyou so much for your reply.

They haven't really said at what point the NG tube would go in but the ED team are visiting us tomorrow so I guess we will know more then. They've said to follow the meal plan or they've offered special milkshakes of various flavours but she refuses because she knows they're full of calories. I knew she wouldn't eat the meals.

To be honest I'm at the point where the NG tube may be a good thing. Its tiring worrying about her body struggling on so little energy but I'm sure it's not easy to see that though, really dreading it.

I can imagine that she will just take it out to be honest. Do they have ways of preventing that?

This is all new and unexpected!

@CuppaTandBicky
I’m so sorry. But I’m glad you reached out to CAMHS for support. I don’t have personal experience, I had to keep dd out of hospital due to another medical condition as she wouldn’t have coped.

When I talked to the ED coach about in patient care, she said it is very overwhelming for anyone, who is autistic or suspected of being so. The lights and the general environment will be amplified, especially if your dd has any sensory issues, so anything you can do there to reassure your dd.

I hope you’ve managed to get her settled now. I imagine you expected a demand avoidant anxiety response to the meal plan. Poor love.

I’m sure someone will be along in a minute, who has experience of hospital /in patient care. Pearl has. In the meantime, there are a couple of recent threads about in patient care.

As for my dd, I’ve just managed to get her to go back on meal plan this evening by agreeing to pay for her go on holiday with a friend and her family. With dd it always costs money!! It won’t be the sort of food I want her to eat, it’ll mostly be beige foods, but it’s a start. So…I’m just wondering if there is any carrot you can give to your dd to get her onto plan?

As for the holiday, for anyone, who read my earlier posts, this is not the one I talked about upthread. Dd is paying for that as we don’t approve. Dd forced it on us and one of the friends has an eating disorder. The friend is very needy and dd neglects herself to look after the girl. They went on a trip together with school last year and dd came back having not eaten enough, but having looked after the friend extremely well. I didn’t know at the time the friend had ARFID and bulemia btw.

Sending hugs ❤️

They willl make a plan, I think it was about 7 days of continued loss once admitted that it happened. Even when it’s in they encourage the food, then the oral replacement before using the tube. In time they realise it’s going in regardless and the replacement orally or via tube is often more cals than the food. My daughter is driven by numbers / cals so worked this out. Sometimes she was just so distressed then managed half the food and the rest via the tube. They could definitely pull it out, thankfully she didn’t. She found it easier than eating initially as seemed to take the choice away and so quietened the ED almost as it was out of her hands. She had a 121 psyc nurse on the general ward in the end so that helped, some wards maybe do that. She is currently an inpatient T4 and I understand they do NG feeding once a day rather than leave the tube in. Thankfully she has avoided that so far. I presume that’s to stop them pulling it out. Horrible illness. Feel free to message me x

Ahh I see. Yes the once a day thing makes sense.
It is horrible isn't it. Just the worst thing to see them go through.
Thanks so much for your help and information. I hope your daughter is doing as well as can be expected.

The milkshakes are high in calories. There is a juice too but it’s the same, if its the taste some are better than others, my DD preferred the milkshakes to juice. She’s obvs rather none.

I am glad you have th ED team tomorrow. They will work with the hospital staff, but we found they were the boss. The hospital staff did what they said.

it’s a huge shock to most people and definitely not something any of us expected to be our lives. You will be ok though and so will your daughter. Don’t look ahead for now, just one hour at a time. Do you have somewhere you can sleep in her room? Xx

Win win. She eats and you get a holiday!! Good luck. I know what you mean about things costing money. I've promised all sorts!

Definitely not a great place to be with autistic traits but we have managed so far just about. It helps we seem to be here at a quiet time!

Yeah I do have a bed next to her. We are really lucky as it's a lovely ward.
Ah we have only been offered the milkshake so far. I wonder if the juice may be better? She is well aware the shakes are full of calories even though nobody has mentioned that, so it has been left untouched.

I would ask for the juices. They do seem less calorific even if they aren’t, they don’t look creamy etc.

Are you having refeeding bloods taken each day? I suppose if she is refusing food they may not do them daily.

I am so glad you’re together and it’s a nice ward. We were on a nice ward too thank goodness was. It’s still very hard for you though. Please be kind to yourself and go for a coffee etc each day xx

I hope you’re both managing to get some sleep @CuppaTandBicky and that your dd did manage to have something beforehand.

With dd, it’s her going away, not us. But yes, I will have some time for me, which will be nice as she’s all consuming atm. I’m showing up for her every day and she’s not showing up for herself. It’s exhausting.

@Tops16 I hope your dd is doing ok. I think she’s been in there a while

@Mummyoflittledragon thank you, it’s certainly been a pretty horrific 18 months so far. Mentally she is making progress at last, wants to get better. It hasn’t yet looked like any weight gain but she is really trying with the meal plan and pushing through a lot of extreme distress.

@Mummyoflittledragon I am sending you all the support you offer others. I think everyone should use any carrots available to them to help them and their children. Some time apart will be good for you both. You do so much for your DD, you’re amazing.

@CuppaTandBicky I hope you feel supported today. Sleeping in hospital is very hard, I hope it stays quiet in there!

Sending everyone hope that today is a good day. Let the sunshine shine on your face and remember things do get better xx

@Weightlossworried how are you doing? I was just thinking about you xx

Thanks pearl97.

I hope you managed some sleep cupptandbicky and that today is a better day.

I echo what pearl97 says mummyoflittledragon - you are such a support to others.

I had to take a bit of a break from this and my thread. I was feeling too fragile. Things are much the same, I was extremely glad that our latest appointment was in this heatwave as she showed a small weight restoration. She hadn't done anything differently food wise so I know it's more the weather causing it - she knew that too so there was no big reaction to the scales this week. Possibly it sounds daft being relieved by a fake restoration but it meant we didn't have the pain of a lecture from the nurse and the emotional fall out from DD.

We saw the dietician this week who made a few suggestions for more calcium and snacks ideas. DD is more inclined to listen to the dietician than me so that was helpful.

DD also opened up to me about what it feels like for her at the moment and what's stopping her choosing recovery. That was helpful. Albeit that opening up only came after her getting upset because I found a razor in her room and removed it.

@WeightlossworriedI totally get the need to step away sometimes. Please don’t feel you have to reply, we all have a mental load and sometimes hearing from others can be too much for us.

We can never know why there is weight gain and it may continue, I really hope so.
It’s good you know how your daughter is feeling, this is often the hardest part though when they open up - when you really know how deep the issue is. Now you know you can help her more and seek more help for yourself.

You are doing so well, you have support here anytime you need it. Sending hugs and we’re on your shoulder xx

@Mummyoflittledragon has your dd had her physical obs checked recently? If she’s lost weight she should get her bloods, bp, pulse and an ecg checked. I know you didn’t get a good experience with the ED team but this is where they are useful, you could ask to be referred back to them for a review.

I know you like the ED coach however (and I appreciate this is cynical) I’m always wary of private services that have a financial incentive in your dd being unwell.

Has your dd had an autism assessment?

I know the feeling of dangling the carrot, my dd did much better with things to look forward to which also gave me leverage if I didn’t see her coming through on her side of the deal.

My dd flies to Australia tomorrow 😱 I’m hoping she’ll have the time of her life but all the old fears of her not eating enough are also there. She’s well and happy at the moment so I’m hopeful she’ll be okay.

Thank you for your messages of support @Pearl97 and @Weightlossworried @Girliefriendlikespuppies . It means the world to me that there are people, who understand and listening to me. People not in this just don’t.

Unfortunately dd won’t do medical obs, let alone blood tests. She has reflex anoxic seizures. Her heart slows or stops and she then is very unwell for up to 5 days. She can’t eat afterwards and it takes a few days for her appetite to return.

The main trigger is medical settings, really the only place she has them now. So I can’t do that as it will make things worse, push her into full relapse. And she would never risk her driving license for that even if she thought she were ill… and she doesn’t.

I only managed to get BP, pulse and oxygen sats done once through CAMHS and we had to make an appointment to do that at A&E for that. Dd was so emaciated that I was concerned her heart wouldn’t restart if she had a seizure. She didn’t as we took her in on a wheelchair and straight through to the room so the stress was as low as possible. CAMHS hadn’t thought of that one btw, but were quick to set up the appointment when I told them!

As for if I think she is at risk, no I honestly don’t. But thanks for giving me a bit of a reality check. Although she’s lost weight, it’s not loads. This isn’t full on relapse iyswim.

As for the coach, I totally get what you’re saying. Trust me when I say she’s very dedicated. I’ve met enough charlatans in my time and wasted enough money on idiots, not in the ED world, but elsewhere to know the questions I want answering. She’s very dedicated to dd, as she is with all her clients, and spends way too much time researching things and putting stuff together. She’s highly experienced and qualified and specialises in ND, worked in the Priory ED as a MH nurse for about 20 years, in patient care.

And yes, dd has had the assessments for both autism and ADHD. We did those privately as the setting had to be very specific (someone’s house) and we will be giving dd the results once she’s finished her A levels. And the coach wants dh and I to be tested for both now through right to choose. She thinks both dh and I are ND. I agree.

I need to organise that still. I’m buggered right now. A lot going on.

Edit - I forgot to say, I hope your dd has a wonderful time In Australia. How exciting for her !

Wow that sounds tricky for you @Mummyoflittledragon as if this journey wasn’t hard enough !

we have our weekly weigh in today and everyone is feeling anxious. Dd is trying to be positive. She has only had one week off school and seems to think things might go back to normal next week! We’ve realised the EM approach doesn’t work perhaps due to ND that we’ve always suspected. So instead I watch what she prepares and eats. She does let us cook dinner though. It’s like a routine she’s a bit set to. I was recommended a new book called ‘how to save your own life’ (especially for ED and autism). DD has started to read it and said it’s relatable.

our camhs team say that anxiety increases in the kitchen but for some reason my DD is the opposite.

I hope the weigh in goes well today @Raspberrysins The anxiety beforehand is awful isn't it? It's good that she's feeling positive though.

I'm glad you found something that worked for you. The 'Magic plate' approach didn't work for us either. While DD still isn't eating enough things at meal and snack times are a lot calmer now we have our weekly meal plan that we agree together.

@Tops16
Apologies, I forgot to respond. I’m sorry you’re both finding this so tough. I cannot imagine how difficult being in a unit for that long must be. It is, however, a blessing that your dd wants to recover. Hopefully she can build on that.

Idk now things work. Has she been allowed any home visits?

@Raspberrysins

It will be great news if your dd can keep going to school! I hope it all goes ok. Interesting what you said about the kitchen. Dd is likewise relaxed flitting around the kitchen getting food for herself.

The seizures are an added issue. And the anxiety of having them contributed to her overall anxiety, which made her more susceptible to getting ED. And the seizures are why I had to keep her out of hospital.

Luckily I didn’t know how serious things were at the time. She basically stopped eating… after an incident at A&E btw… She had a seizure in the waiting room in A&E and a doctor told her she should have grown out of the seizures. He’s wrong btw, it’s just the NHS for some reason won’t reclassify them. So going to A&E again (even though I now know I should have taken her) was unthinkable tbh.

Dd was already fully in ED btw and had already dropped a considerable amount of weight, eating 800/1000 calories a day. But after the seizure she ate about 1200 calories total over 13 days, and almost stopped fluids, as they do… eg she had to ‘save up space’ to be able to go out for lunch for my birthday and refused to eat the day before. Then ate about 200 calories at the restaurant, nothing for the rest of the day, nothing the day after etc.

It’s a shame dd was in A&E with dh, not me. I would gone ballistic! Unfortunately he took second shift in the waiting room with her, and I’d already gone home to bed.

@CuppaTandBicky i hope you and your daughter have a better day. My daughter refused to eat for 5 days and was ng fed when she continued to lose weight in hospital (under section). Wasn’t where anyone would want to be but she stabilised and that allowed us all to make a plan for next steps. I’ve seen patients eating because they realise there’s no choice as we won’t let them starve and slowly rebuild their eating. Mine has eventually realised that and maintains her weight now just enough to keep out of hospital. Not good but better than previously.

@Mummyoflittledragon I’ve never had any success bargaining with the ED. Yet to find anything she wants enough. However, many people do so I hope the promise of a nice holiday is helpful. I’d pay a lot to see my daughter on holiday and having fun

Thanks I have a feeling we may end up at the "just enough to avoid hospital" kind of level. The eating plan at the moment is quite manageable, not massive portions, because of the refeeding risk I think. They have mentioned it will change and she keeps asking me about that but I keep saying not to think about that for now!! One battle at a time.

@CuppaTandBicky it’s good you have a plan. I would suggest when you feel able that you meet with the ED team alone and ask them what the meal plan will be going forward. I was taken aside by a doctor and shown the plan. They said they wanted to warn me as it ramps up quite a lot and is non negotiable so they wanted me to be aware. I would say see how you feel. I found it overwhelming and I already felt totally out of my depth!

I think I'll be the same. Even this interim "small" plan is a huge difference from before. I honestly cannot even begin to imagine what it'll be like when it increases.