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

Hi everyone - me again. Quick question as I can't decide - have you read the Hadley Freeman book? I can't decide whether I will find it totally distressing or helpful/uplifting. I suspect a bit of all. I'm always here on this thread and do send my love to everyone. I fluctuate between finding it really helpful and totally overwhelming, so tend to stay quiet.

Bagpuss I find those threads really frustrating as well, sadly there's an underlying pro- anorexia sentiment on mn that leaks into so many threads. The fact there's a fasting section is horrifying imo, I had a look at one of the fasting threads and found it so upsetting.

There is so much ignorance around EDs and even adults that suffer do not realise the extent at which anorexia is primarily a biological illness caused by starvation. EDs are simply dismissed as serious but rare mental health issues that have nothing to do with fasting for 3 days 🙄

I also get very upset at the ads on mn recommending weight loss or fasting. I think it's disgusting tbh and have complained to mn about them but they still pop up.

Hi All, I am going to take a break from this thread and MN - it has helped sharing our plight and the support from you all and knowing that others out there are in the same boat has been really helpful. But I am now worried about my mental health as @SwattyPie says this thread is really helpful but also sometimes for me personally it can be overwhelming. Thank you everyone and keep up the fight against this dreadful illness.

Did you know you can now buy 'thin' crumpets? I wonder how long until dd sees an advert and demands I buy them instead of normal crumpets. I'm fed up with everything getting a diet or low fat version.

SwattyPie, I have the book downloaded but have put off reading it so far. Self preservation I think.

D1ANA22 I totally get it. Much love to you and your family. Same to SwattyPie. Always here if you need us

Hi all. Just checking in to ask for advice. DD and I are still in Scotland. Transport was arranged for last night, but by then she had deteriorated so much (no food since Saturday when she went on the run) that she was classed as too sick to travel. They introduced NG under restraint today and she has rallied so is likely to be back in the unit in England tomorrow. BUT, the unit want an emergency meeting to discuss the following options in response to her absconsion:

1. possible reduction in her target weight for discharge
2. Not allowing trips out until her weight is near or near new agreed target weight range ;
3. medication option (via NG if required)
4. transfer to a different unit if her reason (or big reason) for absconding was due to ward itself.
5. very early discharge with CTO in place.
6. any other suggestions
7. A combination of some of the above

1 and 5 sound literally insane to me, 3 is understandable, but I think damaging to her mental health and 1, 4 and ,5 sound like they want rid...Any suggestions of what I should ask for. Thanks!

@Swatty

@SwattyPie I have read Hadley Freeman's book from cover to cover. I then gave it away so DD doesn't see it.
I couldn't guess how anyone else might react to it. I found it interesting. She describes why and how she recovered, and that is inspiring. She talked to other patients and medics to get their perspectives. It's kind of bleak.
Hugs.

@SwattyPie Meant to say, I read Hadley Freeman's book and found it an excellent - though not necessarily uplifting - read. Probably not one for your DD.

Thanks all. I think I'll leave it a bit longer before I order it. Not a great week here. Although pretty sure I say that every week... Not as bad as some, I realise, just relentless. Wishing you all strength and better days ahead.

N*an
*
. Possible reduction in weight target discharge. - absolutely not, that is insane and I would be completely against that.

• Not allowing trips out until her weight is near or near new agreed target weight range - as long as it's a decent weight then yes that's sensible now they know what a flight risk she is.

• medication option (via NG if required) - yes good idea.

• transfer to a different unit if her reason (or big reason) for absconding was due to ward itself. - no, I wouldn't be happy with that unless you have specific concerns yourself?

• very early discharge with CTO in place - absolutely not, how on earth do they think you can keep her safe at home?!

• any other suggestions - keep going as she was doing okay ish before the concerts?

• A combination of some of the above

1 and 5 sound literally insane to me, 3 is understandable, but I think damaging to her mental health and 1, 4 and ,5 sound like they want rid...Any suggestions of what I should ask for. - I agree they are trying to move her on 😕

I think I'd be asking why they want to change anything, it sounds like they're overthinking it tbh. Your dd saw an opportunity and she took it. Running away is not uncommon with this illness, I would absolutely refuse any suggestion of discharge or lowering the target weight.

@NanFlanders my heart goes out to you and your family. What a tough situation.
I totally agree with you that the undertone appears to be 'we are out of ideas and need to move her along' what an awful message for you to face.
Of those options only 2 and 3 seem remotely reasonable to me.
Why would they reduce her target weight what does that achieve except to tell the ED absconding is a good idea to get what it wants.
And coming home is clearly not a good move at the moment.
When you say medication may be damaging to her MH what are your concerns?
I'd be asking for a psychiatric reviewincl options for medication and the poss benefits and implications) and a commitment to her staying in the unit until you feel you can manage her recovery at home.

@NanFlanders how did she actually get away? Was it once she was back in the unit, or did she disappear after the concert?
Just wondered if that might affect the possible options, though in what right mind they think lowering the weight seems absurd to me.

@Girliefriendlikespuppies - Brilliant advice (as always) . Thank you!
@Lottsbiffandsmudge Yes. Another good point. I actually meant the option about keeping her on the ward was potentially deleterious to her MH -though obviously care will be needed as she is clearly at risk of absconding. I'm keen on the meds option. She did reasonably well in the community when she took olanzapine and fluoxetine, but has refused to take them since last July. (Also refused aripiprazole and quetiapine) @NCTDN She got a pass to go to a concert in Manchester and them stay overnight at home. We got home about 2am, had a row till about 3 about her (not) drinking water. When I went to wake her at 07:45, she was gone.

@NanFlanders I think it isn't possible to give specific advice in an anonymous public forum. We don't know all the context. Best to ask the unit why they are proposing each idea. They may feel it is bad for your dd to be there at all, or for too long, and they may have some good ideas or be able to come up with some in conversation.
What does your daughter think?
Hugs.

Hi @SunnyFog. There are a lot of 'experts by experience' (as well as HCPs) on the forum, and the unit have asked for our views, so I wanted to crowd source views on the risks and benefits of the proposed approaches, as well as any alternative approaches. I've been talking with DD about the options. She would hate to lose her walks - and said that 'even she' could see why option 5 wasn't a good idea!

nan I think I am far too new on this journey to give sensible advice onyour situation but wouldn't agree to 1 and 5 at all I think.

DD is slightly better now and I think it is in part due to the olanzapine she is on. once they upped her dose, we saw quiet quickly a difference in her being able to accept some food. If that is an option to reintroduce...

I am really sorry you are going through all this. My heart goes out to you.

@Curlyhairedassasin I am glad the olanzapine is helping. It certainly helped my DD

@Lottsbiffandsmudge
How long was your DD on the olanzapine. Our team is talking about stopping after 3 months. at the moment she eats but only the plan. everything incredibly restricted. And I wonder if that is too soon. I got the impression, many stay on it for much longer than just a few months...

She was on it until a good 3 months after WR so c9 months in total.. then came off gradually in case it set her back.
My ED team were very forward thinking about medication and wanted to be more proactive with meds in a community setting. So we were well supported with psychiatric input (well 3 different psychiatrists in 9 months and only 6 meetings but better than a lot get!)
I would be v wary of stopping too early. I am very unsure why there is such a rush to remove medication that is helping recovery. There are limited side effects (once they get used to the tiredness) and olanzapine is not addictive and used in v low doses for AN. 9 months is actually a short time period in terms of MH medicating.
By way of context my brother has long term (controlled) MH problems and has been on olanzapine at a 50mg dose for 20 years. He is fine!

Thanks lotts. They have introduced Sertraline too now and hope to remove the olanzapine for that reason but my understanding is that it they are actually two very different kinds of meds. Will have a good chat with them about it, I guess. We are just under a mental health practitioners in the ED clinic and there is a GP working there who can prescribe these things (and she certainly knows a thing or two). But no actual input from psychology/psychiatrists. Is this normal?

I agree to get opinions from various resources, incl from this thread! HCP from camhs have certainly been wrong on occasions so experience from other parents can be really useful.

We had psychiatric input to prescribe (and subsequently instruct our GP to repeat prescribe) meds. I guess they are specialists! It's great you have a specialist GP tho in your team.
Yes I believe from my reading and what our psychiatrist told us that they are different drugs. Olanzapine is an antipyschotic usually used for MH conditions such as siczophrenia, bi polar etc (in much higher doses). My understanding from reading round the subject is that it was first used for AN sufferers because of the side effects of appetite gain and weight gain but actually the anti pyschotic element was also found to be useful for calming obsessions and anxiety around eating and weight gain. Some sufferers (my DD included) state that the ED voice is somewhat reduced when on this medication. So altho AN is not classed as a psychotic illness (because the sufferer is aware of their thoughts and don't disassociate from reality) the extreme thoughts (don't want to brush my teeth in case I accidentally sat calories etc) are v much like a physcotic break which my brother used to have where he would become totally obsessed by something so iy took over his and our lives (sound familiar!).
Sertraline is an SSRI anti depressant. And increases serotonin. My understanding is it takes much longer to act fully which maybe why they are keeping both for 3 months.? I don't really know much about it as DD never used it (it was offered).
I guess I am not an expert but they seem like very different things to me!

@NanFlanders
for what it’s worth, my thoughts would be

Option 1 would feel like giving in to the Anorexia, have they explained the thinking behind that?

Early discharge option sounds as though would v likely unmanageable even with a CTO.

medication via NG. How often is she having NG currently? If it’s most days I would be keen to go for that. If she’s eating her meal plan and only needing NG more sporadically it’s probably a more complicated decision.

My daughter has had periods of needing her meds by NG and I think it was the right thing for her but that was when she wasn’t needing restrained NG so a different situation really.

I would say there have been times in her treatment when my first reaction to a treatment plan has been that it’s never going to work, sometimes I’ve been right but not always. I think there is a fair degree of trying different tactics out for different people.

Transferring to another unit doesn’t seem particularly logical although presumably there’s more behind that. They are always going to hate inpatient units and protest against staying. I guess you need to know what they think would be different elsewhere ?

What supervision does she have on walks? Trying to run off seems fairly common in my experience but the level of supervision is increased to accommodate that eg 2 nurses for 1 child etc. I can imagine you would feel very worried about the risk after what’s happened.

Really hope things improve for you.

@Frankie291 Thanks. Good point about the NG. She's not having it often. She obviously hates it so the threat is usually enough to get her to eat. Maybe the effect would be enough to take the meds by mouth.