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.

Proseccoismyfriend
So sorry about the cake. It hits hard doesn't it. I nearly didn't bother with making a cake for dd but I'm glad I did as she loved it and sent photos to all her friends - but she wouldn't even eat a bite.

Summertimesadness24 it just seems so counterintuitive to let a child starve themselves to whatever weight camhs deem acceptable for help 😔. I really feel for you. Please don't hesitate to go to hospital if you're worried about her.

greydoor I get you. It's very hard to feel joyful about positive moments when you have been through so much and know how quickly it can flip the other way. However, it is so good that she liked her lunch and I really hope you have more positives like that moving forward x

To be fair our family therapist is amazing, I have weekly sessions with her. We just had a three day multi family event, I have DD’s link worker in touch daily and the family ambassador in regular contact. Mind you DD is very very unwell and I am on the edge, my antidepressants arrived on Tuesday 🥳. My GP surgery are also excellent, we are draining every single resource and will be forever grateful to everyone involved in helping us as a family.

My other DD has a counsellor at school and her head teacher is supportive. Might be a postcode lottery but I have had so much support and help.

I am sure DD’s texts to me were sent during the lunchtime stress she was under. No one would want to adopt her anyway at the moment 😁.

Thank you for being so kind when you are struggling yourself. xx

Just reading through all today’s messages and I think @BagpussSaggyOldClothCat has said exactly what I was thinking (but more clearly!)
I find the variety of support provided or lack of by different ED teams is shocking, surely the MH nurses and psychologists our children see have all had the same training yet seem to made wildly different decisions in terms of support.

Just had the dietician appt with Dd. She’s in a foul mood as the ED has been rattled. The dietician is wanting to do a challenge food with her. Some mini m and m’s as part of a nut free trail mix in preparation for a school excursion. I’m on the receiving end of the anger from the monster that is the ED. Feeling too fragile myself to deal with this and there is no end in sight.

@NotAllGood - I'm a mental health clinician, and I can't remember any training on ED in my core training (20+ years ago now so may be different). Maybe one lecture? I've never worked with anyone with an ED, and I'm very glad for that - before having this in my own family I literally would have had no idea about it. I would have gone about things in my own usual way, and probably made things worse while meaning well...

I think good services really depend on someone senior 'getting it' and putting in the hard work to design something, and providing strong clinical leadership, otherwise you get people who don't really know what they are doing (this is from what I can see from other people - we are STILL on the waiting list to be seen from 1st Sept).

I work in a similar kind of specialty, one where there is extremely high need and a specialised approach is essential, and am currently trying to propose a new service, but it really depends on how persuasive I am to the people who control the money. Despite there being an obvious level of demand, and clear consequences for people who don't get the right service.

I definitely notice from this thread that the support available to families varies wildly. I struggled hugely to get help for my DD through the CAHMS system she was already in for her SH but our GP was Incredible. I credit her with saving DDs life.
Around the idea of leaving a child to figure their way out of an ED I know my DDs brain had stopped working properly and she was prepared to go all the way to death so that wouldn't have worked for us.
I tried initially to keep life exactly the same and do 'normal things'...I managed to fake it for a bit but it was Exhausting on top of the work of dealing with an ED. I found making my life smaller felt safer and as we move forwards I try to expand it out again little by little. I doubt I will ever experience the luxury again of feeling my DD is completely safe but that turned out to be a delusion that probably needed to shift anyway.

@Cantfindthewordsddstruggling I think it's very difficult to keep going when you don't know 'where' you're going. I could only focus on one step at a time

Gosh Greydoor, having read your post it makes me think we are a long way from change even though everyone knows change is needed. Jenny Langley at the Maudsley is doing a lot of work to deliver training to HCPs and reiterate the importance of involving carers in treatment, where permission is granted by the patient

@greydoor it's all a mystery until it hits you. I have two gfs with ED DDs and one with a sister with ED...I realise now I had No clue about what that really looks like...lesson learnt :(

Cantfindthewordsddstruggling

Obviously getting them eating freely is the aim here for us all, but if adding fear foods causes so much distress, and causes her to take it out on you, it's just not worth it. I would just try and build on foods she feels comfortable with.

greydoor

I'm ashamed to say I thought anorexia was a vanity thing and had no idea of the complexity of it until dd got ill. I've heard it's just two hours training or something for GP's. Even ED therapists from camhs don't seem to understand what it's like to care for someone with ED, and in my experience often leave parents/carers feeling like they're failing if they can't get their child eating . Like someone said upthread, appointments often feel like a box ticking exercise. Thank goodness for this thread and Eva Musby, I'd be completely lost and alone otherwise.

So she's snacking which is something I guess but completely refusing the meals
She's doing around 500k so far but it's a battle

The clinic called and said bloods are back normal so I guess that's goods but I reiterated that she isn't eating and she needs help! But she seemed quite dismissive today and almost got irritated with me again when I was asking questions - I'm quite annoyed now
I thought I was imagining it coz I think at first it was all nicey nicey but now I'm starting to ask questions she seems a bit stand off ish

I just felt she wasn't really listening to me and just tick boxing

Ill see how things go at our next appointment but I feel cross now like this isn't hard as it is

X

Yes they said her obs were fine and she used the word stabilised and green on the meeds so ' keep going ' with meal plan even though we've told her she's not able to ?

Ah that is so sad, sending hugs x

I wonder how many families, once diagnosed or otherwise on CAMHS ED radar do manage without a higher level of intervention. Like the situation @summertimesadness24 is in, how many families can keep things afloat and even work towards weight restoration and eventual recovery with minimal support. We were first seen by CAMHS at 85% WFH and at that point placed on a waiting list for a weekly clinic. The first appointment didn't come through for nearly 3 months by which time DD was at 76% WFH and had already been admitted to hospital. Despite almost daily calls to CAMHS they just kept telling us to wait for the clinic. GP and A&E the same. Do resources dictate that they just "wait and see" who gets to a critical point before offering more support? It's just horrendous that, despite lots of evidence that early intervention offers better chances of recovery, people are just left floundering. I can't imagine this would be acceptable in other fields of medicine, but perhaps I am deluded.

It really appears to be a post code lottery. Our ed team have all worked for many years with ed inpatients and know first hand how hard it is and what we're dealing with daily. If I find a desert island to run away to I'll send you all the details

@Proseccoismyfriend please do!
It certainly is a lottery. Our support post-discharge has been pretty good, but it really did take DD being referred to a psych unit for us to get any help at all. I just can't help feeling that if we'd had support when we first asked for it (and believe me we were begging for someone to help us) she may not have ended up in hospital. Given where we'd got to, hospital probably saved her life, but it's not the solution any of us wanted, and there are lasting scars on all of us from that time. We know the mortality rate is high, I just can't believe people are being left so long without help.

Granny Roberts, DD weight was okish when I first contacted GP and camhs. Lost about 7 kg in the 7 months we waited.....
Some of it was incompetence some of it was due to long waiting lists

Sorry for the rant. Reading about @summertimesadness24 situation has been somewhat triggering for me! Summer - I hope you get the support you need very soon.

She's done 500k so far all with snacks alone

Breakfast lunch refused and she's told me dinner she won't be having

I know it's not great but least she is eating but the snacks are grazed thought out the day

@Slowlyimproving this is what I mean. It just isn't acceptable that you should be waiting that long when dealing with an illness that has such a high mortality rate.

So DD has managed snacks here and there but no breakfast lunch or dinner
We've our next appointment on Tuesday where I need to push that this isn't working!
She looks so ill
She also seems completely vacant
She's not even able to put spoon to her mouth

Hey @summertimesadness24 your daughters brain function will be reducing as the body goes into starvation mode it keeps its reserves for the main organs that are vital to survival and the brain takes such a hit (it's also the one that takes the longest to recover) the sooner they help you turn this around the better.
My Ed team asked me to watch the Minnesota Starvation experiment on YouTube, it helped me get a better understanding. The longer this goes on with such little food and especially fats/dairy the more the ed gets a grip.

nedc.com.au/eating-disorder-resources/find-resources/show/issue-59-i-the-starved-brain-can-what-we-eat-determine-how-we-think#:~:text=Restricted%20eating%2C%20malnourishment%2C%20and%20excessive,mental%20health%20outcomes%20skew%20reality.

Thank you @Proseccoismyfriend
Just watched the video

Any tips on what I say at Tuesdays meeting?

I'm thinking I ask for plan B or change of
Nurse - it's just not working!

Being told her obs are ok isn't ok....she's seriously ill and I cannot get her to eat any meals at all at home just random snacks

She did manage an ice cream before bed but still it's all junk food

What are / should be my next steps ?

A&e doesn't work when her obs are always ok

And telling her at my last appointment her obs are good and bloods are normal is feeding it and her that nothings wrong 😭

summertimesadness24, if you can someone else may help.
DD had several different people, one who wrongly discharged her. But also someone who managed to turn DD around.

summertimesadness24

I'm so sorry you've been left to struggle like this. I agree ask for a second opinion tomorrow if you are still banging your head against a brick wall.

Can you call ahead and request that WFH and obs aren't discussed in front of your dd as it causes issues? I used to get my dd's obs emailed to me.

I would agree with Bagpuss that it might be best if obs and weight are not discussed in front of DD. If they are fine then she will only hear that and not the conversations around the need to eat or the long term damage she could be doing to her body by restricting. Unfortunately, AN is teaching her that she can control her body but sadly this is not the case. Thinking of you Summer. Don’t be afraid to fight for your DD now. There is only one way this can go without effective treatment. X