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Support thread 12 for parents of young people with an eating disorder

994 replies

greydoor · 21/03/2024 15:14

Suddenly noticed the old thread is almost full and thought I'd make a new one.

OP posts:
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11
Rusticanella · 14/08/2024 19:33

Rusticanella · 14/08/2024 19:32

Hi @greydoor

Not bad- we have been getting 1500/1600 calories in- which I know is not enough, but she is eating three meals and snacks.

Yesterday I'm hoping for 2000. I bought her one of those Huel shakes? And she was such a trooper as I could see she was struggling and thought she'd give up- I said I'd try some and my god they were horrible.

I have cooked a Keema type curry, and it has been very easy to get lots of calories in it- double cream etc. Whereas when I cooked the porridge in double cream she found it too much.

I can't say she is eating like a horse, but she is eating, and cooperating to a certain degree. I think I just need to really figure out my recipes. For instance, I thought heavy cream porridge would be a good one, but actually she ended up eating more calories with Crunchy Nut and Jersey Gold Top milk as she would eat more of it.

Thanks for asking @greydoor sorry I sort of ploughed in her and didn't really ask about your children- how is your DD/DS doing now?

*today I'm hoping for 2000

Curlyhairedassasin · 14/08/2024 21:37

We saw the team today. almost 2kg down in 1 month. she is not able to increase the intake otherwise she completely loses it, gets violent. FTB is not working for us at all. We have a week to put on weight otherwise she will be sectioned. But I cannot see this happening as she keeps cutting down. We have so much crap going on already. I am just totally crushed but I also know that it is probably the only way forward. I cannot help her at home. I am struggling so much alone with both DDs and their high (and competing) support needs. H is only half way through his 6 week solo holiday.

If anyone has any tips how to turn this around, hit me. I just don't know what to do. I don't want her admitted. I want her home with me. I love her so much but I have no idea how to help her. I feel like the worst parent ever.

Mummyoflittledragon · 14/08/2024 22:34

I’m so sorry @Curlyhairedassasin. When my dd was really bad, asking her to eat or any kind of forcing her to eat made her so much worse. She used not eating to completely blackmail me into silence. She had and a lesser extend has a desire to punish me by not eating.

I spoke to one of her friend’s mum, who knows dd well and had anorexia herself about this. She said that any and all talk about food would stress dd out loads. She told me to take the food to dd’s room. To say, ‘here is your food, I’d like you to eat it please’ then leave shutting the door. I could trust dd not to throw or hide the food. She’d either eat or not.

From there, I slowly, slowly increased the volume of food. At the time, dd was eating carrot sticks, humous, grapes and the tiniest amounts of cheese once daily. I was weighing everything before and after and I learned ways she’d eat a little more such as not to give a nearly full pot as she’d not go onto the next one whereas a half empty one she would.

Idk if low contact like that would help your dd. It’s contrary to FBT but it worked for dd and she ate increasingly more. I then went onto her eating lunch as a second meal when she could rationalise a tiny bit more and I could take more control. I can’t imagine how hard it is for you trying to cope alone with 2 girls with very specific needs. Just dd is all encompassing.

It sounds as if you’ve given your all and have been a really good mum to your girls. Please don’t doubt yourself. You have been doing everything possible to look after your girls, unlike the man, who is supposed to be by your side supporting you and your dds.

Shanghai101 · 14/08/2024 23:03

Well done @Rusticanella. Sounds like you are going a great job. Keeping everything crossed for you.

@Curlyhairedassasin so sorry to hear that she may need to be hospitalised. Is day unit treatment an option? Snacks, lunch and dinner in the unit. Breakfast at home. That way she can come home every night and be home at weekends.
My DD told me that we could never have got her to eat at home in the same way that the unit could.
Sometimes it’s just not possible for us parents to do it at home, particularly where there is neurodivergence.
My DD also benefited from DBT, OT and family therapy. It helped her to reflect and gave her skills for coping but it has been a long and painfully slow process.

Girliefriendlikespuppies · 14/08/2024 23:15

Curly I think in your situation dd being sectioned/hospitalised would be a positive step forward. You can't do it all and your dd needs more help to move forward.

Be kind to yourself, this is not your fault and you're an amazing mum to both your girls.

Don't see being sectioned as a failure or a bad thing, it's whats needed to get your dd better and could be the turning point she needs.

Curlyhairedassasin · 15/08/2024 09:58

Thanks all. @Shanghai101 - no idea if it would be a day unit. We haven't talked that much but given that I work and have DD1, I'd hope it is inpatient. There isn't a unit very close and I couldn't just do the driving twice a day. But you are all right, it's probably the best move for us. 2 years into this crap and we just about manage. Things never really got better. It's probably what she needs.
I wanted to ask about schooling. DD is very academic and learning is really important to her. Do they have proper lessens in there? Or will it only touch the edges? What happens with all the stuff the miss curriculum wise? Do they repeat the school year? DD is about to start y9 so only one year away from starting the GCSE subjects.

GrannyRoberts · 15/08/2024 11:57

@curlyhairedassassin I'd echo what others have said, it's very scary being at the point you are at now, but hospital may well be the only way forward at this point. My DD wasn't sectioned, we were admitted on an "informal" basis but it was a psych unit and many of the other children were there under section. It wasn't easy, and there are some aspects of her treatment that I didn't, and still don't, agree with, but for us I really don't thinknwe could have turned it around at home. DD has now (finally!) been diagnosed as autistic and I think her very literal, black and white, rigid thinking contributed to the difficulty we had with FBT etc.

Leaving her there was the hardest thing I have ever done, but it really was our only option. Your situation sounds unsustainable. When I was where you are, on the brink of DD being admitted, my friend said to me "if you were on a sinking ship, you'd hand your child to the strongest swimmer" and that oddly really helped me rationalise the.situation..

In terms of education, ours was an under 12s unit and they did have schooling, with qualified teachers, but only for English and Maths. They were happy to work with school to coordinate classwork etc, but there was not the specialist subject teachers. There is an equivalent unit here for teenagers but I'm not sure what the schooling provision in there (and pray I never find out).

Curlyhairedassasin · 15/08/2024 12:21

@GrannyRoberts thank you. I am slowly coming around that this is the only option. Out of interest, what does 'sectioned' even mean in that context? She is 13. I thought they just get admitted it that is what doctors and parents agree on. I thought sectioning is for adults with 'capacity'.

GrannyRoberts · 15/08/2024 12:29

@curlyhairedassassin I'm by no means an expert on this. It means they were detained under the mental health act. In the case of the unit DD was in, anyone who was NG tube fed was routinely detained. I think maybe if we hadn't agreed to her admission they may have sectioned her.
It's explained better here www.mind.org.uk/information-support/legal-rights/sectioning/about-sectioning/

GrannyRoberts · 15/08/2024 12:30

Sorry this is the info for under 18s https://www.mind.org.uk/for-young-people/hospital/

Mummyoflittledragon · 15/08/2024 13:20

@Curlyhairedassasin
I vaguely know a teacher, who works in an eating disorder unit. This is a quick google of what is offered in her unit.

Support thread 12 for parents of young people with an eating disorder
Shanghai101 · 15/08/2024 15:33

Curly, I think it is for the best too as the longer she muddies along at home with an ED the more ingrained it becomes and possibly will damage her bones.
She may not even remember the early days there - my DD says she kind of blacked out mentally when she first started eating at the unit. And when she is older and has insight she will thank you for saving her.
An inpatient stay could also give you the opportunity to build yourself up for when she is discharged. It’s so scary Curly but a relief to hand over the refeeding to someone else and let them hold the worry for you. They can get her to eat in a way that you can’t.
Our DD was threatened with a section if she didn’t agree to being admitted of her own free will but she was older and treated as an adult. In the end she agreed to a day unit to avoid hospital but if I hadn’t been available to drop her off and collect her then she would have had to agree to Inpatient or be sectioned. Unfortunately they are not able to think rationally when they are so underweight.

Proseccoismyfriend · 15/08/2024 18:27

Sorry to hear this @Curlyhairedassasin I also think it's the right step for you. You've tried everything and you must be really on your knees. I hope the admission is the turning point for you and your dd

Curlyhairedassasin · 15/08/2024 19:31

Thanks @Proseccoismyfriend I am getting my head around. She has one week to put some weight in but I cannot see it happening.

greydoor · 15/08/2024 19:39

@Curlyhairedassasin - just wanted to echo what has been said. You are such a fantastic mum and you have worked so so hard to help her recover. Hopefully an admission would help her turn the corner, but you also can't carry all of the family single-handedly, which is what you have been doing. You need to share the load, and what Granny said about handing over to a stronger swimmer really rings true for me.

OP posts:
Rusticanella · 15/08/2024 20:46

Sorry to hear how hard things are @Curlyhairedassasin I wish you and your family all the best.

Rusticanella · 15/08/2024 20:48

Carrying on trying to feed DD. Referral for counselling is processing, and given the confusion over her weight, I am loathed to go back to GPs just yet. I was going to carry on feeding her and then weigh her next week and see where we are at.

I am really struggling with the guilt though when she is saying she is full and feels sick...

lexilou985 · 16/08/2024 10:16

Hi, I haven’t posted in a while but pop on every now and then to catch up with how you are all doing. Thought I’d share a bit of an update to show that there is light at the end of the tunnel. Exactly a year ago today my DD (14) was admitted into hospital after her initial CEDS assessment. She had low BP and was 63% WFH. It had taken me 3 months to get the appointment after the GP said she didn’t meet the criteria for a referral!
DD stayed in hospital on a meal plan for 2 weeks. On discharge, we tried to continue with the meal plan and she was seen most days by either the CEDS team or the home crisis team. DD just wasn’t gaining weight quick enough so we had to make the heart breaking decision to agree to an inpatient admission. I honestly felt like my world had fallen apart.
DD is very shy and hates being away from home so didn’t think she would cope in the clinic but we had no choice. The alternative was her being sectioned.
DD was admitted at the beginning of October. It was the most awful day of my life leaving her there, but in hindsight, it saved her life. She had the most amazing care, and very intensive therapy for the ED and anxiety. By Xmas she was allowed overnight stays at home. DD was very compliant throughout, probably because of her extreme shyness. By January she had gained 3st and had hit 95% WFH. The clinic don’t normally discharge until 100% WFH but we agreed to 95% as DD is naturally very tall and lean.
DD came home mid Feb, and her care was handed back to the CEDS team. She went back to school full time after the Feb half term but I went in to supervise lunch etc. DD had been attending the onsite school at the clinic and her home school was sending work for her. Despite missing most of Year 10, she did really well in her mock GCSE’s in May.
Since discharge, we’ve had ups and downs but generally things have been ok. DD is so much more confident and wants to “live her best life”. She is still following 3 meals, 3 snacks with no problems. There are still some AN traits lurking about but we just cope with them. DD is much happier with her body image, albeit she still does worry about gaining weight. But, thankfully she also worries about losing weight too. She is adamant that she doesn’t ever want to be admitted again.
DD has been on Fluoxetine since January but she is now off it totally.
This week, she has been discharged from the CEDS service, so no more appointments. We can opt back into the service for the next 6 months if we need any help.
DD is probably hovering around 90% WFH at present which may seem low, but it is probably where she would naturally be.
This time last year, I thought that the world had ended, that we’d never get DD back, that I was a failure…….although it has been the most difficult 12 months, I feel that we are finally in a good place. I understand the illness, I can see when DD is struggling and we cope. She no longer fears food, and she is slowly getting her enjoyment for food back.
DD now wants to be an adolescent mental health nurse to give back for all the amazing care she received in the clinic.
So for all of you that find yourself in the position we were in 12 months ago, stick in there. Buckle up because it’s one hell of a ride, but there is light at the end of that very long tunnel!

Curlyhairedassasin · 16/08/2024 10:26

@lexilou985 Thank you. It's really helpful to hear esp as we may facing admission soon! So glad to read that she is doing so well. We have been dealing with this ED crap for 2 years but just go round in circles.

Shanghai101 · 16/08/2024 10:36

Lexilou thank you for sharing and giving hope. May I ask you, or anyone else with young people mostly or fully recovered, how do you see that they are struggling. We are at the stage where DD will start to become more independent, return to college etc, and I know that there will be ups and downs. I know I need to look out for signs that she is struggling but I worry that I will miss them - as I am still reeling from how devious this illness can make them. I worry that she won’t confide in me that she is struggling and that we won’t be able to nip any relapses in the bud. Any advice would be welcome

Slowlyimproving · 16/08/2024 12:24

Shanghai101, that's my worry.
DD was purging for probably 6 months before I realised. Was under camhs for maybe 6 months and got discharged. She then restarted purging or maybe never really stopped... Took me again many months to realise.
But then she was starting purging so much that she started losing weight.

Anyway, in year 13 at college I contacted wellbeing and as the support from camhs gradually reduced they took over with weekly chats. They have been great.

She is much better and about to go to Uni. She is hoping to get some support to just chat with someone weekly or once every 2 weeks. She has also agreed to monthly weights.( She went the CBT-E route).

I do know that she gets less chatty and more withdrawn when struggling but even if I realise she won't ask or accept my help .

Jellycatspyjamas · 16/08/2024 13:36

My first post on here but hoping for some support. My DD13 has been seeing CAMHS for 2 years, she’s adopted and has a lot of early trauma and suspected ASD, awaiting assessment.

Today we spoke about her eating - she’s always been slim but recently I noticed she’s lost weight. She spoke about putting food in the bin and I’ve noticed her hiding food, she says sometimes she doesn’t feel like eating and sometimes she forces herself not to eat. Her HTW is 90% and following today’s appointment she’s been referred for blood tests and cardiac assessment.

I’m a bit stunned tbh, I know her therapist is watching/concerned she may have or be developing an eating disorder. I hadn’t really considered her eating as disordered though I’m aware her food intake is tricky. I feel like a bad mum not having considered it to be a significant issue in the midst of everything else we have to support her with. I’m just a bit shocked really.

lexilou985 · 16/08/2024 15:15

@Curlyhairedassasin
Ah that must be so daunting for you. I remember the feeling well, just waiting for admission. I can honestly say that inpatient care was my DD’s only chance of recovery. As guilty as it makes me feel to say it, I was relieved when the responsibility and care was shifted to the professionals. My DD knew that I was no longer in control so it kind of made things easier for me. I did not cope well initially and had to have 7 months off work. Luckily our clinic is only 20 minutes away so we visited every day and as time went on, we were able to take DD out for a few hours. When she improved physically, she was allowed home for a few hours, then overnight etc. I wasn’t sure how she’d cope in there as she is so shy, but she was fine. She has some fond memories from being in there.
Re your query about school. Our clinic had a school onsite with about 12 teachers covering all core subjects and geography, art, French etc. initially DD had lessons on the unit, then when she had improved physically, she went across to the school everyday from 9:30-3pm. The clinic school follow the curriculum and contacted DD’s home school to make sure they were covering the correct topics. Her work got sent to her home school too.

@Shanghai101
It’s a really difficult one as I don’t think AN ever really goes away totally. My DD is fine day to day but every so often something triggers her. For instance, if she feels she’s over eaten, if someone else misses a meal, or any talk of weight or people going to the gym. But we just cope with it. I have to be strong with her, no negotiation as we don’t want the AN any chance of sneaking back in. My DD is very open with me and will often text and say she hasn’t had her snack because she’s had xyz instead. She is very honest but in the past the AN made her lie and hide food but we are past that now.
I find it hard as I want her to be more independent, and I have to stop myself asking her what she’s eaten. I need to take a step back and try to let her live a normal life. She knows the consequences of losing weight. My DD knows that if I see any restriction or weight loss, I will get a CEDS appointment straight away. I’m hoping in time, the AN will just fade away and be a distant memory.

Curlyhairedassasin · 16/08/2024 15:31

@lexilou985 That sounds really positive. My other DD has complex SN and I don't have a support network. I don't think I could manage a daily (or near daily) visits. Is this some something which is expected? If not too far, weekends is the max I can do really. I wish I could take some time off to work. I am totally drowning and I am not ok anymore but that's not an option financially for me and my employer isn't awfully supportive either. I had loads of issues there over the last year because of the girls.

I started fretting now that she could possibly put on some weight by next week as she increased her intake a tiny tiny bit (sneaky ED trying to trick us all again I suppose) and the whole admission things is then put on hold or called off. Can I demand admission? Can I refuse to take her home from the ED clinic and just walk out? She smashed up plates when I put lunch in front of her and screamed hysterically for ages like a wild animal. Then went on a rampage in a different room and smashed up things in there. I am just so done with it. The ED team where supposed to come today to do meal support but canceled too due to staff issues. And tomorrow is weekend and no help available. I am just so fed up and defeated. I just need someone else to take over the battle.

Shanghai101 · 16/08/2024 15:57

Curly, I am so sorry that the meal support people did not show up today and you had to deal with this on your own.
I can totally understand why you would want to walk out of the clinic and refuse to take DD home with you if they don’t admit her but please don’t do that as that may be all she remembers from this time and that would be a tragedy for both of you after you battling so hard for her for the last two years.
Please write to them in advance of your appointment outlining everything you have written here - DD1 needing extra support, no family including DH willing or able to help, no friends who are in a position to help, meal support cancelling at the last minute, anorexic rage, unsupportive workplace, struggling with ED at home for 2 years, etc. Please ensure they know that even if she has gained a small amount it is not sustainable without intensive treatment which you cannot do on your own.