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

[Mummyoflittledragon]

New thread. The old one is full…

@Shedqueen
I am really sorry. That sounds so tough, not wanting anything enough. The bargaining is literally how I’ve done it with my dd. It often has to be tiny things for quite a big reward. Is this a demand avoidance thing?

@CuppaTandBicky
i hope your dd manages the plan and increments. It’s a pretty robust way of increasing intake. If she can stick with it, she will make good progress.

Hi everyone we had our first gain- 0.8 which is such a massive relief to me! Dd has said that proves she’s able to do it herself (not magic plate way).. but obviously we will have to wait and see. She feels ok about the gain. But said it will be a very different story when she goes over 47kg … she said that will be very hard for her.

That's great news @Raspberrysins and even better news that she is ok about it! Hopefully that fear of going over a specific weight will ease as she recovers.

My DD is like yours @Shedqueen, there is nothing in this world she would choose over staying her current weight unfortunately. Even when she knew our holiday was on the line she was unable to complete the full meal plan.

Quick update from me and a question about family therapy if that’s ok. DD(15) seems to have done well since we started on three meals a day 2 months ago. She has consistently put on weight and has eaten whatever we have given her. We had a check up today and she has lost weight but no one was surprised or worried as she has come back from 3 days of D of E in the hottest weather ever. CAMHS have been seeing her every week but they are happy just to see her once a fortnight from now in conjunction with family therapy.

So my question is - family therapy sounds SO awkward to both DD and me - what does it actually entail?

DD is now 92wfh so has some way to go but is having some signs of periods restarting. We are keeping on keeping on with feeding her. I am still fully anticipating push back at some point…

@Libre2 we did family therapy with CAMHS. My daughter hated it and I’m not sure it was useful. We sat there. CAMHS caseworker who was lovely, me and DH and DD. We chatted about stuff, plans, how things are going… we did all the talking and DD mainly looked at the floor and fiddled with her bracelets. She told me later it was unbearable and she just wanted someone she could talk to on her own. Once we were discharged we got her a private therapist who she sees by herself and that has been great for her. I don’t want to put you off. It was a necessary step in the process on our journey between serious illness and managing it ourselves. But yes it was awkward.

No experience of family therapy @Libre2 but I'm so pleased things are going well for your daughter. Hopefully the fact that she has engaged so well with the meal plan means she'll engage well with therapy

@CuppaTandBicky it will be a lot because they have to gain as well as repair. I find it helpful to say it’s the hospital/ CAMHS’s plan and I just deliver it. Watching TV helps as well as I can’t make sufficient small talk to fill the time!

We’ve been doing Fbt since the very first appointment (I think that’s what it is!) we all go for around an hour and Dd gets weighed etc then we chat through the weeks challenges. It doesn’t feel awkward at all but then my DD has engaged with the nurse / key worker. At times they have said she can meet them on her own too. I think this depends on where you live as to what they offer? We are meeting a nutritionist soon and next week we will have a ‘family meal’ which DOES sound very cringey tbh! We don’t know what to expect with that one.

We had a family meal and it was awkward but useful. Nothing like sitting In front of a two way mirror being observed by a room full of people when you eat to put you off your food!

They did pick up on some useful things though, behaviours we hadn't noticed like crumbling food to get away with not finishing it.

Sorry to hear the situations everyone is in. I have a lot of experience with meal supplements and monitoring from a non ED setting.

Yes, NG tubes can be pulled out and there's nothing that can stop that. In a non ED patient it is extremely easy to put back in again and I used to do it myself; I've been told its very different in ED patients because of the psychological impact. We used to have the feed running all night overnight every night for 12 months. It takes a long time in my experience (or if it is quick, its not many calories). For all these reasons although it is common and routine and non alarming/invasive in other conditions in ED treatment I understand NG feeds are given pretty sparingly.

Supplement drinks are generally absolutely bogging. Try them yourself and you'll understand why noone wants to drink them. After many years we got onto scandishakes which are genuinely ok and have about 600kcal in 240ml so pretty effective. My dc has been taking meal replacements for 13 years

I'm sure you know this @Mummyoflittledragon - BP, sats etc can be easily measured at home, monitors are cheap these days and can be run in someone's sleep. My dc has 24 hour bp monitoring several times a year.

All this has come from non ED experience with a compliant patient who wants to be well. EDs are of course v different and i appreciate this may not help.

@unbuckle
Gosh it sounds like you have a lot going on with your dc. I hope you’re doing ok.

Yes, thanks we have everything. I even bought a child-sized cuff for the BP monitor as I thought at the time dd’s arms would be too small for the adult one. But dd would have to comply and be relaxed to get accurate readings. The time we took her to A&E, it was comply or be admitted, because they couldn’t let her go for her own safety. A lovely young nurse came and coo’d all over dd and relaxed her so she did. But I figure that means they were willing to section her.

We aren’t at that stage. The weight loss has been gradual. And dd has now agreed to go back onto meal plan. I know that’s going to be tough to get her to continue to comply. But if she doesn’t, she will have to reimburse us for the holiday or forfeit going. I am aware that she will refuse to reimburse us, so I do have a plan to get the money back another way.

Good luck with meal plan.

The readings on our BP cuff at home were so different to the ones in hospital.

The days are long in hospital and have been thinking... How did people manage this with work and looking after other children?

I can't even begin to plan how I will juggle career and family in this near future period, but then again we have no idea yet what the plan is when she gets home.

I know we aren't anywhere near the point where she can go home yet but just trying to visualise what it'll be like.

They did vaguely mention she would be seen once a week by the ED nurse and told us where that would be, but I'm guessing the home bit will also be quite..... involved... In a setting where both parents work, or single parents who work and there are bills to pay how do people make this work??

Hello everyone - I’m sorry I’ve been awol all week - like someone else said I am still at a point where it’s all too much and I need to take breaks from it.
@CuppaTandBicky I’m sorry to hear you are in hospital. Your DD sounds quite similar to mine. How old is she? I’m also currently really worried about practical aspects like work and finances.

We had another eventful week. At our regular ED appointment we were told we’re being referred to the intensive outpatient service and have an assessment there next week. The intensive service sounds awful and really stressful. We both have to be there the whole day (8am-8pm) and bring in packed food from home. It’s 7 days a week. Apparently we might have to do this for weeks or months. I’m really worried about my job and DD’s education, she’s in Y10 and just about to take her mocks. I think I would probably lose my job if were asked to do this - and it will be really difficult for me to get another one as I’m very specialised and getting older. Not to mention the fact that I like my job. I don’t want to give it up. I’m a single parent and have no family support and my close friends all live far away.
Our supper worked seemed to have zero symphaty - I’m hoping the people who do our assessment will be a bit better and perhaps offer something a bit more palatable.

DD decided she wanted to help and would try and eat so we could avoid the intensive service. She managed two days of normal eating but she had another psychotic breakdown last night and declared she could do it, was disgusted with herself, hitting herself etc. When I talk about my worries about these episodes all I get back from the ED worker is that she needs to eat before anything else can be done.

our private referral hasn’t gone anywhere yet - the insurance seemed to have messed up and referred us to a place that doesn’t have ED supper after all. So back to square one on that and a whole week wasted with no appointment made yet.

Not feeling particularly optimistic at the moment.

I'm so sorry that sounds so stressful!
That's almost like an inpatient stay. Definitely not compatible with holding down a job...or much of a life for you. So sorry you're in that position.

Have they tried your daughter on medication? We aren't at that stage but it's definitely something I'm planning on pursuing if things get difficult with anxiety as the food plan ramps up.

The only thing I can think of (for you and myself!) is to be signed off sick with stress.

I really hope she manages to turn things around so you avoid that plan. Sending lots of love and support.

Gosh @10YellowTulips that sounds so stressful. I understand they can't offer actual therapy until they're closer to weight restoration but it does feel a bit like the process of dealing with the ED causes them a lot of distress and then we the parents are left dealing with it alone. I can't help but wish there was a middle ground and some sort of support to manage their distress.

In terms of work, me and DH are so lucky to both have flexible WFH jobs and understanding bosses. We take it in turns to supervise meals and spend time after meals. It's a lot and even if one of us didn't have that flexibility I think we would have to consider getting signed off. I really feel for parents who don't have that flexibility. Of course there's no amount of flexibility that would allow for the type of intensive outpatient you are potentially looking at. I hope you find a solution. It's so stressful.

Mine was also threatened with months of intensive outpatients and put on enough weight to avoid.

I think most parents of seriously ill kids get signed off, I certainly did with my other DC. GCSEs I would try not to think about, there are always other times and other ways to get qualifications

Yeah my daughter has been worrying about the impact on her GCSEs too but I've said she can just worry about that another time and that theres no hard rule she needs to sit them at the same time as everyone else. Main priority is health.

I totally get the need to step away at times.

I also know how helpful this thread can be, so I’m glad people are posting.

@CuppaTandBicky I totally agree. I remember saying when we were first admitted, how do people do this? Can I leave her so I can go to work. They seemed perplexed as to me even asking! There is no way to work and be in hospital. As you say you have to either ask for time off or go off work stress. Have they said how long you may be in there? I didn’t want to ask them, but then decided I needed to know as I was catastrophing that it would be months and months.

The nurses as often ones that will tell you thing as they hand over to the ED team.

With regards to them it does differ depending on where you live. Home intervention is usually approved so they will come to your house and watch you all have lunch together ‘normally’. It’s usually two of them as they aren’t allowed tk work alone. You will then maybe have to go to clinic to be weighed and have health checks each week. As I say it does vary so you may not have this, it’s just what I’ve seen happen to us and others. You will also maybe go to the clinic to eat.

It all sounds overwhelming but depending on how you feel about hospital, it may be preferable. I’m thinking of you. I remember how daunting hospital was, but how grateful I was for support!

@10YellowTulips I hear you about how can you go to a clinic every day. I do wonder sometimes if it’s a threat as the service is so overstretched they may not have room for you.

I remember it being so hard as if I had a magic wand and didn’t have to work or didn’t have other children, having support from dieticians, GP’s etc etc 7 days a week would have been great as the requirement from me would be so much less and would aid recovery. In practise though, I did have a job etc and I couldn’t just drop everything. I would see how the appointment goes as you do have rights - depending on how poorly your daughter is.

@10YellowTulips
There are very few private practices specialising in ED, that take on under 16s. I spent quite a while looking. If the insurance company will sponsor The Priory, this is one… or at least it was a few years ago. I don’t think they do in patient before 16 either. I forget.

Jenny Langley has a list of coaches and dieticians on the New Maudsley site. Some specify over 18s. Dd’s coach took dd on at 16, so probably some will. But idk if they take insurance.

Dd’s coach offers therapy, but it’s very gentle stuff from scratch. I imagine private practices in general will as there isn’t the time pressure, as long as people can pay.

I agree with @Mummyoflittledragon I had to put the idea of going private to bed. It is crazy expensive, very difficult to source and if the ED team are looking at inpatient care or similar they will often persue this and not allow private care.

Having a coach like @Mummyoflittledragon can be invaluable, but this tends to be when they aren’t at risk it hospital etc.

I dont want to sound dismissive, but I spent a lot of time and energy on looking at private clinics etc when I could have asked more questions to the ED team etc, used the resources I did have better basically.

@10YellowTulips it may be possible to be signed off work. I have had 4mths off last year to support intensive day treatment like you describe and then I went back on amended hours for another few weeks. From a work point of view now she is inpatient I can work without needing to be off as much. I’ve been in my job a long while and thankfully they have been really supportive. Your daughter will possibly be able to claim PIP if over 16 and DLA if under. It’s not a wage but could be helpful. Hopefully at the assessment they offer some guide on what parents usually do.

Morning all, I've been following this page recently and want to thank you all, the comments have been so helpful to me. To introduce myself, I'm currently sat in a general paeds ward with my 12 year old daughter, our 2nd admission since the end of April when we were first able to get seen by the ED team after nagging the GP for referral. Sadly wfh still very low hence need for re-admission, but she's doing really well with sticking to the ever increasing meal plan here so far. Currently confined to the ward however due to low BP and heart rate, would anyone have any idea how long it takes once good eating starts for these to increase? Would be nice to take her off the ward in a wheelchair just for a change of scene but sadly not allowed yet. Thankyou

Morning @ThatSparklyOliveBird I’m glad you have found us.

My daughter was also in hospital on more than one occasion on complete bed rest at times.

How low weight is your daughter and does she have any normal obs when they do them? I would make sure you ask what they all are as sometimes they were higher than others and that gave me scope to ask to go for a walk.

I also found that weekends etc when the hospital was quieter we were allowed to sit in the hospital canteen while I had my lunch or dinner in there. It is definitely worth keep asking, it wasn’t that long until we were allowed to stay close to the ward but go out in the wheelchair. We couldn’t go outside unfortunately, but it was as great to be out! I think for mental health, especially if she is adhering to the meal plan, it’s right to ask to be allowed out. Can you wheel her around the ward? Sounds crazy but it’s a start for her!

I remember how lonely and out of my depth I felt, so please ask questions here. We’re a knowledgable helpful group and we’re here even just to offload to. Please don’t feel alone xxx