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.

@BagpussSaggyOldClothCat I really appreciate you laying it out in that way. We have integrated so many 'extra allowances ' for DD into our lives that I definitely feel I would have felt a bit stumped initially as they are now part of everyday family routine but I can see we are still a way off 'the norm' . I think part of me is scared to do the form because I want to avoid thinking of the physical and emotional toll it's taken on our lives and the very different life we had before 😥

2 days of no food and we are back in a&e
Most likely going to be admitted again

so sorry, summer but it's probably the best place for her. How long was she in last time?

Thinking of you summertimessadness24 and really hope your dd gets better treatment than last time.

ReineDeSaba Yes we are forced to build our lives around the ED and the issues it causes, so over time it just becomes 'normal' to us. Applying for PIP for dd forced me to face up to all those things that she struggles with, compared to her peers. It was hard to do, but it has definitely helped to have her illness validated.

@ReineDeSaba
https://www.familiesinfocusessex.org.uk/benefits-support/dla-and-pip/

check out the link. At the bottom there is a link for 'useful phrases' for a pip application. It helped me a lot with Dd's pip application. She doesn't have an ED but I think there are phrases you may find useful as some of the neurodevelopmental challenges are not too dissimilar to ED difficulties in some respects.

A week last time. She did 4 days of not eating and then eat for 2 days and they sent her home after the 3rd day of eating - one day of eating at home and now back to refusals

She's only on a children's paediatric ward again but if she's refusing food she does need to be there - I just hope this time she can start to eat again 😞

@summertimessadness24

sounds a bit like us last year. Admission but only to a general paed ward for physical stabilisation and re-introduction of food. Our ED team was involved though and a dietician too. DD had to manage a certain amount of food (a specific meal plan) in order to be discharged. It was very strict. Sounds like you didn't have a good support at all. I would refuse to take her home unless eating is established. It took almost a month for us.

Yes I'm thinking this time will be different
We too have ED support and a dietician

Can I ask what support looked like when you were discharged? I just want to get to a time where we can have her home supporting her

X

ReineDeSaba
DD also off to uni...
Myrtle mentioned a link somewhere
Redcan volun organisation.
I also was sent some documents from camhs I think from the freedfromed website. Also new maudsley capsule "transitioning to university"
DD preference is non catered and the likely uni she is going to have already said they would take ed into account when allocating accommodation.
Thought about applying for sda and pip but doesn't look like DD would qualify as she has actually recovered quite well and we don't do FBT, it's her and camhs .

Reine, Diana, our DD was in self catered halls as we felt it would be easier for her. In truth, it was fine initially with good food and a great variety. Unfortunately, as things went wrong for her socially, she probably started restricting again but I think that would have happened whatever the catering arrangement.
Self catering is sociable as students meet in a shared kitchen to cook and eat together. Catered is convenient as you don’t have to shop or cook for dinner or brunch and dinner at the weekend but dining times are fixed. It is also a good way to meet people.
I think uni is a great opportunity to fill their lives with something other than the ED and if the time is right they might just fly. But be prepared to keep an eye on them and ideally a GP would check weight at intervals appropriate to their stage of recovery.
Watch out also for hyper focus on their studies as this may be a sign that all is not well.
I am keeping everything crossed for both of you that you DDs will find lovely friends who will motivate them to leave ED in the past.

Summer, I really hope that you will get the support you need to get a meal plan established. I well remember this stage of the illness and not knowing anything about the importance of a meal plan until DD’s health had deteriorated significantly. I was devastated that we had been left to deteriorate at home and wait for a hospital admission. It still takes my breath away that this seems to be the approach in some areas despite the importance of early intervention being well documented.

The doctor has just been round and said her obs are good, bloods fine, she is not at risk of re feed so they are checking admitting her was the right thing to do ?!
I don't want her here anymore than they don't want us here! But I feel like I'm living a nightmare and constant bloody battle

We were only discharged once she managed the meal plan without stress. Initially, after discharge we had daily ED clinic appointments. Then twice a week etc.

We started olanzapine in the hospital. It's an antipsychotic drug but is used in AN to help with the intense fear around food. Maybe something to discuss with the team.

Bit shocked that they are considering a discharge if she is not able to able to eat. Where is the ED team in all this? Ours worked closely with the hospital. I would not take her home at this point.

@Curlyhairedassasin I find the doctors very inconsistent in their advice and that's one doctor so I'm hoping we have a better response today
I also won't be leaving without fortini which is something they said they would be sending home with us
Admittngly I did not think we would need it
We do have a ED clinic who have been fab however it appears the hospital have their own views and weren't very positive about them
We are / were having weekly calls from ED clinic so that will continue
The care from our hospital in general hasn't been good

@summertimessadness24 - sounds like the 'purpose of admission' is different for you and for the hospital. For you, the purpose is that your dd is trapped in a cycle of not being able to eat, and she needs help to break this cycle. Sounds like the hospital think the purpose of admission is to make sure she is not medically unwell. If it was me I'd be being very clear with them that the first is the reason you're there, and it makes no different what her vitals say, if she isn't managing to eat. Sorry if this is what you've already been saying! I'm so frustrated on your behalf.

I need some advice. We are going to visit some family this afternoon that we have only seen once since all this started. The last time we saw them they were very kind, but talking about how teenage blips in terms of relationships with their parents are normal, and we would manage to overcome this one. They suggested we look for exercise activities for my dd to do, as don't we know that exercise is great if someone doesn't feel so good?

I was really upset afterwards, I felt completely unseen and like everything was minimised. Does anyone know if there any webpage or handout or something I can give them if they start along these lines again? Usually I'd just try and ignore this kind of thing, but I feel so broken by DD's AN, I find it just upsetting that someone wouldn't try and understand before they spoke. No chance of avoiding seeing them unfortunately, so I need some kind of plan so I don't disintegrate! Thanks x

@greydoor - any chance you can tell them to avoid the topic altogether? Or change the topic when it comes up? I found that those who do not want to understand cannot be educated with leaflets etc either. I just avoid them physically now and if I have to see them, make sure we talk about mundane crap but nothing contentious. Hope you survive the afternoon!

Yes ! This is spot on! I will share this thought
They all think this and it's sooooo frustrating
Well she's in there and in the best place so I'm hoping she will come out with better chance then last time x

I would say I have family members that I have avoided for this exact reason
One Dr told me ' maybe they will never get it ' so I don't even think a hand out would help imo
I sent the Eva musing videos to my nearest and dearest and they still don't get it now
I've learned to accept that and avoid ( where possible ) but in your situation I would say prior that DD needs a break from any ED conversation at all so then nothing is discussed x

@greydoor this is awful. Firmly tell them it's just not up for discussion. It doesn't sound like they are listening to what's actually going on for you and are soothing themselves with believing they have all the lovely answers.I doubt they will hear you when you do offer more information but it's worth a try. If they persist the visits need to stop. You do not need this on top of what is already gruelling journey!

Hello, sorry to add more issues to this thread, I know you are all dealing with a lot yourselves already. I just don't know what to do... Dd17 is 36kg (65% wfh) and looks awful. We brought her to a&e 3 times within the past 4 days, sat there for hours before being sent home because obs are fine. ED service suggest nothing but continuing FBT approach, encouraging Dd to build up her calories. We've tried this for months- she just won't eat. Her intake has been under 500cal/day for 3 weeks now. She's had diagnosed AN for 2 years now but never got to this point. Do they expect me to wait until she's dying???

@lyriccat I hope someone comes along with practical advice but this is appalling.I cannot understand why no admission. 500 calories is clearly dangerous

@lyriccat I am absolutely horrified though not surprised that you find yourself in this situation. Given that she has been restricting to such a low calorie intake for a prolonged period she is at risk of refeeding syndrome when you increase her intake so she really should be monitored closely while this is a factor
If you are in England could you contact your local mental health helpline and explain your concerns? Alternatively depending upon how your local team operate your mental health crisis team might be able to help. I would not be wanting to wait until dd physically deteriorates further. so sorry you are going through this

@lyriccat i think they are waiting for her BMI to drop to whatever the cut off for hospital admission is. In my experience the weight drops off very quickly once they get to this stage and it’s really hard to turn things around. Have the ED team spoken to you about hospital admission?
@summertimesadness24 I’m learning that how you say things to clinicians is almost as important as how you speak to DD and what Greydoor suggests is worth a try to help them to see it from your perspective and hopefully enable them to get you to the right place to get effective help for DD.

I’ve worked out her bmi would be 14. From what I’ve read anything below bmi of 15 is considered severe anorexia and hospital admission is required. We were told each time we went down there that because she is physically stable, it should be dealt with the ED team rather than a general DGH. One nurse suggested paediatric ward would take her on but because of DD’s age this isn’t allowed. I called local MH helpline earlier this week and they suggested we take her to a&e, also offered to take a mental health risk assessment but Dd didn’t wish to talk to them. I’m frustratingly unable to call the ED team, only email. It seems they pick and choose which of my emails they respond to. I’ve asked about hospital admission and they didn’t give any definite answer, only suggested I take her down there for a check-up but unlikely she’ll be admitted. I’ve got a call scheduled later today to speak to their paediatrician about an EDU admission. If she is at risk of refeeding would an EDU consider this? Thank you all for your help

Lyriccat, you must be so frightened. At a similar stage I found the information on here really helpful especially when it felt like we were waiting for her to collapse. I was so worried that we saw a private ED psychiatrist. She took it very seriously and did bloods, BP sitting and standing, HR and ECG. Results weren’t great but as expected for someone with AN. She validated my concerns and gave me good advice which gave me the strength to keep fighting for treatment. Your DD should not be doing any activity on such a low food intake.

I would imagine that refeeding syndrome would be at the forefront of everyone’s mind given how little she has been consuming but I would say something too. As her bloods and obs are still normal you are best placed to give accurate information on just how little she has been eating and over what timeframe. The rate of weight loss over a short period of time is relevant so give them all the data you have.