Support thread 13 for parents of young people with an eating disorder

[Curlyhairedassasin]

New thread as the other one is filling up fast....

@Shanghai101 if you have an apple account you could use the “hide your email function” if mumsnet HQ can’t help.

@Curlyhairedassasin if you prefer, I can cut and paste the relevant information from the documents. Otherwise, I’ll try to find a way to get my email address to you so I can send you the full documents.

if you wish give it a few days. I hope they reactivate PMs soon

At the clinic now: she lost 4kg in the last 8 weeks and now complains about chest pains. our case worker left the room to speak to someone. Waiting now. She still has not eaten and is refusing to eat her with meal support too. so worried about her :(

@Curlyhairedassasin That's a huge loss. I hope this is the start of you getting some meaningful help. Thinking of you and your poor DD xxx

@Curlyhairedassasin I'm so sorry, that's why she's lashing out the voice must so loud for her right now with such a big loss. What was the outcome today?

@Proseccoismyfriend She is getting admitted now (general paed ward). she is refusing all food. ED team came home today. we couldn't get her to eat.

i hope she gets the help she needs and you get a bit of a rest. It is horrible but at least she’s safe.

Hey @Curlyhairedassasin I've been reading your updates over the last wee while, so sorry things have been just so hard, but I really hope this admission is the turning of the corner. I breathed a little sigh of relief that someone has finally listened to you when I read your update. I hope this is the turning point for your lovely daughter, but in the more immediate term I am glad she will be looked after and hoping you can have a little rest too, you must be exhausted xxx

@Curlyhairedassasin She's safe now - well done for pushing to get her this help. I do hope you can get some respite too. Hugs x

@Curlyhairedassasin that is the best possible news under the circumstances. You have done a great job advocating for her. I hope you can sleep well tonight knowing she is safe.
I know she’s in a general paed ward now so this may not apply yet but if they don’t already know please tell them about her likely neurodivergence. And ask them to make the necessary accommodations e.g. she may need a quiet table to eat at, a slower pace etc. ideally her treatment plan would be tailored to her and not the standard. There seems to be a slow shift towards understanding that people with ND need care which is more person centred so you shouldn’t feel bad asking for this - particularly as your daughter has been battling against the odds for two years now.

I am so pleased you are no longer on your own and finally the teams should start to help you. Try to get some rest tonight, sending you both a big hug xx

thanks all. Just got home (won't be staying overnight due to DD1) will be back in the morning. Since it's paeds and not an ED unit we have to support meals but at least she is safe for now.

Thanks @Shanghai101 We have a review with the ED specialist there tomorrow morning so will raise these points!

I’m glad your dd is safe and hope she will be able to start eating again. Big hugs x

I'm not sure on your ward but I had access to a parent kitchen and fridge so I took foods that were safer for him to eat in those early days/weeks. It may help with her anxiety if it's food that you're preparing from home xx

From this morning BBC website Most areas in England are planning cuts to specialist eating-disorder services for children and young people this year, an analysis shows.

Dd waited 7 months for treatment, during which she went from purging but normal weight to purging and WFH 76% with A&E talking about admission.
This was partly due to incompetence but also long waiting time.

I'm guessing underfunding results in long waiting times but also poor training, and this again makes working in this field less attractive.

Dd had a few blips before and during Xmas but seems currently quite happy at uni and told me yesterday she was weighed at the GP surgery and she had put on some more weight.

Sending lots of strengths to all here .

Thanks for sharing that, @Anothersetback . Really shocking considering the massive growth in prevalence.

I know that many on here have DC with suspected or diagnosed autism/ASD. (In fact it seems so common that I'm starting to wonder if AN might actually be a way autism presents in girls). Thought this short video may be of interest: _

so, she is refusing all food and shakes. has not had any food intake in the last 2 days. Tomorrow morning, they will fit an NG tube. Anyone had it for their child and able to share how it was (and how it helped). I am losing all hope at this point.

@Curlyhairedassasin My DD had it many times. We even had one plan when, whenever she missed a meal, she had to go to the hospital for an NG feed. It actually made it much easier for her to get the nutrition she needed as she rationalised that 'it wasn't her fault'. (Her friend, who wasn't as sick, only had the NG once, and that turned her around.) I actually cried with relief the first time DF had it, as her heart rate, which had been setting all the alarms off the previous night, stabilised. Honestly, I know it's hard, but this is what your DD needs.

Thanks @NanFlanders

@Curlyhairedassasin - Thinking of you xxxx

@Curlyhairedassasin sorry things are so hard. My dd didn't have a ng tube so I haven't been through this, I just wanted to say that I'm really glad that other people are witnessing how hard things are and acting on it. You've gone so long being dismissed by professionals I am glad they are seeing just how unwell your dd is, and doing something about it. Keeping you and your dd in my mind xxx

I’ve known some young people take food at the point they realise a ng tube is inevitable.

That didn’t happen for mine. She found the ng tube was useful when she was first admitted because she could tell herself/ disease that having nutrition wasn’t her choice. When she tried to resist tube feeding, she was sectioned so she really didn’t gave a choice. Shes had one in place for several weeks when she was in a DGH. She only pulled it out once. It meant that she had a few weeks of good nutrition when she moved.

She later had a period when tube fed when she didn’t eat her meal plan so it was placed just for that.

it wasn't great. My husband was there when it was inserted. She was offered food and then tube fed when she refused. I would hold her hand and distract her. It shouldn’t be uncomfortable when placed so, if it is, ask if it can be checked or redone. She will have scan to make sure it’s in the right place. Sometimes its luck but often ng tubes are done by the least experienced team member

Please don’t lose hope @Curlyhairedassasin. The experts always say that if what you’re doing isn’t working then try something different.
The NG tube may be what turns this around for her. I know it’s extreme but she nay not even remember these dark days. My DD does not remember when she was at her lowest. Sometimes she’ll read something and ask me if she was like that and when I tell her she was she cannot believe it. Like your daughter she was in Fight/Flight/Freeze mode. Sending love to both of you

Thanks @Shanghai101 I think her brain is so starved, she probably needs the NG tube to refuel. I am coming round to the idea that it's probably a good thing.

@Curlyhairedassasin Dd had to have a tube a few times,the first I was happy because at that point she was so exhausted she couldn't have tried to eat if she had wanted to. My view, it gives her body/brain nutrition to be able to catch up. Sending love x