Support thread 11 for parents of young people with an eating disorder

[GrannyRoberts]

Hi all, here is our new thread. I will attempt to post a link on thread 10.

Summertime I agree you don't need a nutritionist. They'll be looking at a healthy balanced diet when that is really the last thing your dd needs right now.

Adding fats to my dd's food saved her life. It was not recommended by CAMHS and I've seen people disagree with it on this thread and other groups, but I felt instinctively thats what I needed to do. At one point I was buying 2 x 600ml of double cream, 2 packs of unsalted butter and 2 packs of ground almonds per week and dd was having it all. Cals were way over 3000 per day and it still took at least six months to get her back to 100% wfh and that's really when I started to see her improve mentally (along with antidepressants). She still needs a lot of cals to maintain so I'm still adding but not as much.

She's not recovered but is a million miles away from the very ill and extremely underweight girl she was. Most importantly we can be open about her ED and it's not this awful beast that lives in her head ruining her life anymore. She understands she needs to eat a certain amount to stay mentally well and I'm not scared to prompt her to eat in case of a battle.

ReineDeSaba

A lovely update. So glad things are improving and the future is looking a little brighter ❤️

Just wanted to say my dd has finally been awarded PIP. Most of her points were gained from the FBT that we still do daily and from the anxiety/depression that having ED causes.

It's a hard process but it's definitely worth applying if your ED child needs a lot of help to eat to stay well. She didn't need t9 go through an assessment as I sent in enough evidence - all the letters and emails I've had from CAMHS & GP since she was referred nearly two years ago. My dd feels 'validated' that she actually has a disability now and I think this will aid her recovery further.

@Girliefriendlikespuppies its interesting that your DD has mainly recovered without therapy, at our FBT they keep saying weight restoration will fix most of the issues then the therapy deals with what’s left over. Given that I think I’m going to add some cream to something I cook next week and see if DD has a reaction, as that will definitely help with weight gain.
@ReineDeSaba so good to hear stories of progress.

@BagpussSaggyOldClothCat Thank you! Good news finally on your PIP and so glad your DD was spared an assessment. A relief for her to have validation around her struggles.
It sounds like we are in similar places in that the immediate physical danger has subsided but there is still so much to emotionally process. I think we are going to be in the process of trying to learn how DD can manage her high anxiety without SH and an ED for some time.
@NotAllGood I hope it goes well with the dairy trial.
I'm another one who 'hoodwinked' their young person. I am eternally grateful to the mum at a parents' group who mentioned doing this-the ED team were all very negative about the idea-understandable that if you get 'caught' that's a lot to rebuild trust with your child. However this was a Major factor in our DD's recovery as it meant keeping portions just about bearable for her and so I stand by it.

ReineDeSaba

Yes getting physically well is only half the battle isn't it. The mental effects of ED hang around for a lot longer.

My dd is very resistant to any form of counselling as her experience with camhs was traumatic for her and she's distrusting of medical people. So we just continue to go day to day and celebrate the small wins. One win was that she managed to go to a salon to get her hair cut for the first time since getting ill and she really enjoyed it. I had to stay with her but was sat a few feet away and could hear her chatting to the hairdresser. The hairdresser was lovely and kept saying dd had lovely hair which I was so grateful for as I knew how much that would mean to her. This was a girl that barely left her room for 6 months at one point and was too weak to wash her own hair.
I had to try very hard not to cry!

Just had a call from the clinic

Diagnosis of anorexia nervosa

The nurse said she will email me all the details
A care plan and meal plan etc

Appointments at the clinic 2 times a week initially then weekly

Bloods ecg being done and having to talk to her tonight about the diagnosis

I cried when the clinic told me even though I was expecting it

She said did I notice she was body checking the whole assessment and I didn't 😩

Hugs summertimesadness24

Glad you have a diagnosis and plan going forward, even though it's a very hard thing to hear. 2 x a week clinic visits is how we started. It was quite gruelling. Make sure you look after yourself and your own mental health. Do you have much in way of support from family & friends? X

@summertimesadness24 it is very hard to hear it. Shocking even when you already know

@BagpussSaggyOldClothCat we just did first haircut recently! DD spiralled afterwards-any change is incredibly challenging for her. I think also because it was a 'looks based' thing to her it brought back lots of those hang ups. But we survived...and that's the thing now, I have much more faith we will survive even when the anxiety spike is massive.
Sounds like your hairdresser was an absolute gem💕

ReineDeSaba

Totally understandable, bless her, but she did so well. Exposure is traumatic but its the only thing that can really help anxiety, unfortunately.

My dd was looking down at her phone for most of the cut as she struggles with mirrors but I guess that's what most people do nowadays anyway so it's not unusual. We booked another appointment for a trim for 6 weeks time while we were there to try and keep the momentum going. I purposely booked the 'old lady' salon (for want of a better description!) as I thought it would make dd feel more comfortable than a very trendy salon. They were all absolutely lovely and seemed to see that dd was nervous and were kind & encouraging.
I've suggested getting nails done and she's keen on getting her lashes done so hopefully we can keep building her resilience.

@baggy Oh yes you are so right-exposure is totally the way forward-but it is super scary-I just do my utmost to hide how terrifying it is for me too not to know which way it's going to go.
The 'upside' of this flipping ED, if there has to be one, is I am paying more attention to not trying to rescue DD/letting her avoid all discomfort and just sitting in the shitty bits with her, but what a way to learn.
The phone is a great idea for next time, I don't know why I didn't think of it (because I am old and used to gossiping at the hairdressers!)

Yes a very supportive DH ex husband (daughters dad) my mum and MIL
So I'm very lucky to have such support

Any suggestions how I tell my daughter tonight? Nurse just said to tell her about the diagnosis etc

@summertimesadness24 hugs from me too. Even though you knew, to have it confirmed is still a huge shock. I am thankful that you have been listened to and taken seriously and sounds as though there is going to be regular support for you all. Do look after yourself too, easier said than done I know but it's so important.

summertimesadness24

I don't remember an actual conversation with dd. I think I just said that we were going to an appointment to check her physical health and get some help with her eating issues. I had to keep it quite low key so I could get her to the first appointment without too much distress. Her therapist did quite a good job of explaining eating disorders to us at that first appointment.

@summertimesadness24 - it's ok to sit with the info yourself for a little while before you try and tell your dd. We never got a diagnosis in person, but we got a letter from the person who did her assessment (addressed directly to dd, with a lot of very complex and stark clinical info in it - I have never actually shown her it). But I do remember the shocked feeling I had to actually see it confirmed.

I digested it myself for a while, probably a couple of weeks actually, and I told her in a low key moment when we were talking. There wasn't any chance of her being seen for a while so there wasn't any rush, but I bet you'll want to try and give her the info so she understands about the appointments and stuff.

I didn't want to make a huge deal out of it as she was very argumentative at that time and I didn't want to end up in a shouting match. I just said something like - oh that dr wrote us a letter and he said he thinks the reason your eating has been so tricky is because you've got this thing called anorexia. Lots of other people get it, and you didn't do anything wrong to cause it. And it's going to take a bit of time but one day it wont be hard like this, and me and dad are going to help get things better.

How are you managing with the meal plan? Hope it's going ok x

@ReineDeSaba - thanks for the positive post, so glad to hear how much better things are! X

I feel lucky to have such a supportive clinic
Her next appointment is next Thursday and I did tell her in a low key way and she didn't seem baffled but the nurse told me to tell her she has been diagnosed and she can either talk about it or not use the word at all

She's currently sitting at her table with her uneaten curry since 6pm, this has been her longest one yet
Last night one hour
Previous night 1hr45 but she wasn't taken any notice of the 45 mins so she now sits there until it's gone

We didn't get in til 530 and she's still on her school uniform
She seems happy humming away but I'm not giving in
Once she's done I said she can have bath or a shower and come join us for the gladiators

The meal plan I got is very similar to what I do
It doesn't seem enough but it's more than I'm trying to do - lots of meals and different choices so I'm really impressed with it
No nice having support
Couldn't imagine people going though this without it x

Summer then as is good you've good diagnosis, my dd was in complete denial there was anything wrong with her and thought we were all mad to be worrying 🙄 getting a diagnosis was useful in convincing her there was something wrong.

Does your dd know her weight? I'm a big advocate of blind weighing especially in the early days as I think it's just too risky for them to know their weight.

@ReineDeSaba your post above about sitting with her through the shitty times reminded me of @Eyelashesoffire post asking what might be behind the current rise in EDs. I have been guilty in the past of not helping my children sit with their emotions of failure/distress/disappointment. Instead, I’ve tried to smooth the way for them or tried to make it better somehow. Last year, I read an article in the newspaper, written by a headteacher, which said that parents were not doing their children any favours by smoothing the way for them, that it was essential for children to experience challenges and failure to equip them with the skills to navigate life. Of course, it’s not that simple and there are other factors at play such as genetics etc but I do think this was another contributing factor in my DD illness. And like Reine I have learned to come alongside DD in her distress.

@summertimesadness24 just to say that I am thinking of you and keep the hope. Things will improve, although it may take time. Glad you have a supportive clinic and support at home

We've had a little win and I need to tell someone as in front of him I'm acting normal! I put out shortbread fingers (fear foods) at lunch and the usual glass of milk, he chose the shortbread and at the end said he enjoyed it 🥳

Ahh @Proseccoismyfriend that's a brilliant step, well done!

That's brilliant!!!

@Proseccoismyfriend ooooo! Brilliant! Love those tiny moments!