Support thread (8)for parents of young people with an eating disorder

[myrtleWilson]

Welcome to anyone who is a parent/carer of a young person who has (or suspects may have) an eating disorder.

We're experts by experience and will share our insight - but obviously we're not medically endorsed, we celebrate all our small wins and provide a space for relief from the intensity of supporting a young person whether pre teen, teen or young adult with any eating disorder

I feel so sorry for all the families suffering. It's heartbreaking. Dd has ditched her grandparents and some very close family and friends/neighbours she's known all her life. I try to assure them it's her illness and not them, but I can see they are hurting terribly and trying hard not to take it personally. I pray that in time the relationships can be rebuilt. It affects my relationship with them too as invariably the topic of conversation comes around to dd and it's stressful constantly explaining where she is in her illness journey and defending her behaviour.

Thanks everyone for your comments regarding dds heightened ED behaviours/possible EB. When I'm feeling stressed I feel the strength from you all behind me. I'm sending the suggested texts saying 'Sorry you're struggling. You're safe here. We love you. Here to talk anytime.' etc instead of reacting or jumping to attention when she complains about noise etc, and it is helping me feel a bit more in control of a difficult situation.

Sending love and strength to you all.

Thanks all - @Frankie291 you're right! We all used to have really busy lives, but we would always have breakfast and dinner together, round a table, cooked from scratch and that was where we bonded. But now it's so tense and horrible. DS has told his mates, but they are only 15, so wouldn't really know what to say. I've also told school, who were nice, and said he could come and talk to them any time, which I've passed on - but I certainly wouldn't have approached a teacher with a personal problem at that age. What really annoys me is the level of input expected from him with FBT, when he's already got enough to cope with, with missing his sister (and best friend), and the tension at home. We've been asked a few times why he isn't at family therapy appointments (in the middle of the school day, which he doesn't want to go to, because he's worried about exams). And when the team said my husband and I had to be with DD in hospital after every meal to distract, and we pushed back (having exhausted parental leave, AL and sick leave - on top of me taking 4 months off), they suggested DS should come in and take over.

No way @NanFlanders?? - am not suggesting you're mistaken in any way btw, am just beyond gobsmacked that the hospital thought that was in any way appropriate...

How is Dd doing now admitted?

@myrtleWilson - yeah. The more I think about it, the more outrageous a suggestion it seems. The idea of him making his own way up there and being rejected. Poor kid.
DD has been struggling in hospital, so her consultants have reintroduced an NG plan today. She was very distressed initially, but she has now completed lunch and dinner (or had shake equivalent). My concern is that she'll be in for 5 days and then discharged for the cycle to start again - it's her 8th hospital admission in the last 12 months.

Mostly lurking but feeling sorry for Nan's Ds. Hard enough for parents but siblings who are just kids....

Having some bad 2 weeks but have finally spoken to dd's school. They seem quite understanding

Hi all - I'm still here 😭 but been lurking as we seem to be doing everything totally against all the rules. We're going in the right direction though, and DD15 now 92% and fairly compliant, so the every day trauma of the early days is hopefully a distant memory. I don't want to go back to the two of us crying on the kitchen floor together. Anyway, wanted to jump in re the sibling.c conversation. My eldest DD 17 is utterly broken by it, and it's only just coming out now. She told me she had spent time on Glass Child TikTok - when I googled this it's basically when a sibling is totally overlooked because of the needs of their sibling. Heartbreaking. We're about to start some private joint therapy as their relationship is totally broken, but I'm scared. Eldest basically wants to say "you're a total birch - look what you've done to our family" and wants to be heard saying this. 😭 Tell me it will be ok.... Better out than in, and better out with a mediator than a blow up over a borrowed item of clothing? 🤞🏻🙏🤞🏻

Nan that is outrageous re suggesting your poor Ds should be responsible for your dd in that way. Poor bloody kid. Is your dd any closer to a tier 4 bed yet? They just know that it's not great to be yo-yo ing in and out of hospital like that.

Swatty I'm not sure re the joint therapy tbh, although I can see it might be cathartic for your elder dd I'm not sure it will do much good for your unwell dd 🙁 It's hard to accept they are ill and are not choosing to be ill and I know I've wanted to scream and shout at dd 'look what you're doing/how can you do this to me' but I wouldn't in the same way I wouldn't if it were a physical illness like cancer. They don't want to behave in the ways they do but anorexia holds a gun to their heads and they feel there's no choice.

Maybe separate therapy would be useful though?

Swatty Hi, I'm glad things are improving and wfh is better. It's so sad that your dd's relationship is broken but judging by so many personal stories I've read on here over the 8 threads, relationships can and do improve with weight gain/brain healing. Empathy is hard enough for us parents so it must be really difficult for your elder dd, especially as she's directly seeing how it's affecting you. Listening to Eva Musby talking about compassion might help her. It's one I revisit when I'm starting to feel frustrated with dd. I think you just have to keep reminding her that the behaviour is the illness, not her sister, and her sister will get better and they will be close again. It will take time and it's a long frustrating wait but she will get better.

Nan I'm so sorry your poor dd is back and forth to hospital and that your ds is suffering. The suggestion that he attends appointments is quite shocking to me. He's a child. Appointments are harrowing enough for the adults. Surely he's better off being at school and having as normal routine as possible.

@NanFlanders I really agree regarding your son’s involvement.

Considering those involved are psychologists/ nurses/ Drs there seems to be an odd lack of understanding of the impact of what they’re asking of your son. When clinicians request these arrangements it makes me doubt they have a real understanding of what families are going through with this.

I really hope your daughter can get out of the cycle of repeated short admissions.

In my experience it feels like the options are trying to manage at home with all that involves , including bouncing in and out of Paeds ward/ A&E or the situation we have now come to ( ED unit admission) which I can only say after 2 days has been the most traumatic time of our lives. However there was no choice.

There are no palatable options with this illness.

Hi all, just want to introduce myself. My DD was diagnosed with anorexia aged 12, 4 years later after 3 relapses, an ASD diagnosis and one inpatient Ed unit admission she’s finally in a strong recovery.
If I can be any help with advice I know the systems and illness inside and out x

Hi northernmum74

Welcome and I'm so pleased to hear your dd is recovering well after a really tough time.

If you don't mind me asking, how was your relationship with your dd affected and how is it now? I worry a lot that I'll never be really close with dd again.

That’s good news @northernmum74 . Can I ask when the ASD assessment was done, at what stage of recovery? - our DD is in strong recovery, 9 months weight restored - I was planning to have a private test done this summer (CAMH have a 2 year waiting list I believe).

Hi, it was done just before the last relapse so was a healthy weight. I’d always thought she might be from aged 4/5 but no one took it seriously. Our eating disorder team sent her for it and fast tracked it.

hello @northernmum74 I always love to hear of good news like this, it makes me very happy. I want to ask you the same question to the women I know who had eating disorders when younger which is - was there a turning point and what was it?

Hadley Freeman writes about how having a place at university and being told she wouldn't be able to go unless she put on weight was her turning point.

For DD, something shifted when she read Difficult Women by Helen Lewis. I know that sounds so random, but I think it was the descriptions of forcefeeding the suffragettes. We also let her do sport again and arranged for her to have some private football coaching. Every time she did it, she could see herself getting a bit stronger.

@Valleyofthedollymix the turning point was rock bottom and being sectioned. At that point she was in malnutrition induced psychosis. Attacking me physically 3-4 times a day and believing she could gain weight through smells and touch. She thought the house was full of spiders too. Extremely poorly mentally. They sectioned her and she was desperate to get back home. Within a fortnight something clicked and her brain cleared and her whole thought process changed. I also fully believe that thiamine had a huge effect. She’s never been on meds of any kind as refused them. They insisted she at least took the thiamine at a high level and the research I’ve done after into vitamin B12 leads me to believe it had a huge effect. So much that she still takes b12 now. The switch happened while she was still 79% wfh so wasnt weight related at all and she’s now 108% and just no signs of anorexic thoughts at all.

Thank you for your reply, interesting. The rock bottom thing is so prevalent in other addiction narratives that it shouldn't be surprising that it can play a part in ED recovery.

The psychosis resonates. DD was psychotic at times, violent to us and threatening violence to herself. So unlike her normal character. Knowing it's not 'them' doesn't make it any less upsetting or terrifying though.

I also agree with you about weight in itself not being an indicator. DD was always relatively logical and well when her intake was good, even if her weight was low. The thiamine is also interesting. She was prescribed it but I was rubbish at getting her to take it when she was at her worst as I felt I had to prioritise putting food rather than pills into her mouth. In retrospect, I should have made it non-negotiable.

Looking at the age of your DD and of mine (she was anorexic between the ages of 13-15, approximately), I wonder if puberty doesn't work magic both good and evil. Like I think puberty was part of the trigger, but I think the process of going through puberty, for her, was also something that she needed to do in order to get better.

@northernmum74
It’s good to hear your daughter is doing well.
What a relief that must feel. I guess some worry will always be there when they’ve been so ill.
My DD (13) also believes that calories are “infusing “ in to her if she is in the same room as food or touches it.
She also has severe OCD and has been on Risperidone for 18 months.
Can I ask did your DD transfer to informal admission when her initial section expired?
it sounds as though she gained more insight so I guess that helped?
My DD is 10 days in on section 2 and has very little/ no insight. She doesn’t believe she has Anorexia and thinks everyone is trying to “trick her” to “make her fat”
I’m so anxious about everything but also about what happens when the section expires.
In some ways the section at least takes the responsibility away from us for her being there.
It’s so hard, feels almost unbearable.

@Frankie291 no, I insisted she wasn’t allowed to go informal as at that point I truly believed she would have walked out of allowed. She was instead put on a section 3 and then discharged from that after only 6 weeks on it and onto a section 117 aftercare so she had to continue with community engagement. The fear was she had been poorly so long that she was eating her way out and once out would relapse but thankfully that didn’t happen. When she was admitted she had sugars of 2.4, and heart rate of 38. She was very lucky she didn’t die and should have been in general hospital but they wouldn’t take her as she was psychotic and would “upset” other children. The whole thing was criminal imo and it was only through complaining to the highest level and making them sign a letter to say I would hold them responsible if she died that she was admitted urgently within 2 hours of that meeting. Long lasting damage is being tested for in the coming weeks. I just hope there isn’t as I believe the upset if there is may cause her to begin to relapse again.

@Frankie291 the ocd is also part and parcel. DD had severe ocd too and the change of scenery and removing her from her daily rituals in inpatient did her the world of good. It’s still there slightly but she manages it well now and if she finds herself doing it she changes her routines to beat it.
she also thought she wasn’t underweight and thought everyone else in there was thinner than she was. Time and constant nutrition changed that. Hang in there lovely and things will get better xx

Dd1 had anorexia and refused all help. But as previous pp dd1 was desperate to go to uni so that was her motivation.

Am reading with interest, I definitely think puberty is a trigger, it was for my dd. She started developing boobs and was suddenly aware she was gaining weight (in a completely normal way) this is what freaked her out. That combined with lockdown was the catalyst for the ED to start growing 🙁

My dd only ever went to 90% wfh but was completely irrational at that point, she believed things like her skin would absorb water (esp warm water) and make her gain weight, not to use toothpaste incase it was extra calories etc

Interesting re the vitamins, I've long suspected that my dd is deficient in some vitamins, she's always pale and tired. I've found some chewy vitamins with evening primrose which she will now eat so will keep pushing them.

We've had a few little wins here, dd is making her own breakfast and so far is doing okay, I keep a fairly close eye. She is helping herself to extra food in the evening and seems to have developed a taste for crème eggs. Ystd she was out with her boyfriend all afternoon and told me she got a macdonalds and then had popcorn at the cinema.

It all feels quite normal although I'm still cautious, the new boyfriend seems really nice and I think has helped her confidence. That said he asked for a photo of her to show his mum and she had a panic attack as 'she's so ugly/there's no nice photos' 😢

Still a way to go with loving and accepting herself.

Re autism, dd did an online test the RAAds one, it said if you score over 50 then that's a good indicator of autism, her score was 170!! I did it as an experiment and score 48 which seems about right...

Yep, dd2 puberty and lockdown ; start eating disorder

And just ordered vit B complex 🙂

At my wit's end, despite watching and watching dd, she still manages to purge in secret

@northernmum74 - Thanks for sharing. Love to hear stories like that! @myrtleWilson @BagpussSaggyOldClothCat @Girliefriendlikespuppies @Frankie291 @Valleyofthedollymix - Thanks for all your comments. DS had his birthday on Saturday. I got called away at about 10 because DD had to have an NG tube fitted. We celebrated Sunday - he insisted on going up to the hospital to open his presents, so his sister wasn't left out, but she was very sad (despite having wrapped all his presents and done a nice display for him - they do still care about each other a lot). Things not going great with DD- they fitted an NG as she wasn't eating enough, but she's been refusing to let them use it, and pulled it out yesterday. They can't section her as her health isn't bad enough yet - thought heart rate still very low. Good news (I guess) is that she is on the waiting list for an inpatient unit. She was third, but I know that one girl on the ward has just been admitted, so hoping that means she is now second. Consultant said that she might have to 'bounce in and out' of hospital a few times until she gets there - it's just so upsetting for everyone: in hospital, gets to bare minimum safe heart rate under threat of force feeding, discharge, restriction, back in. Can't believe all the stopping and starting is good for her. She's just got worse and worse - she told me a couple of days ago, that she'd got fluids down to one small glass of water a day at home. (Obviously, we'd been focussing on the food....)