Support thread 9 (!) for parents of young people with an eating disorder

[Girliefriendlikespuppies]

Thought I better start a new thread, can't believe we're on to thread 9 😳

Hope all the regulars find it!

@Threeyearsalready this is really interesting - how old is your DD? And does it seem to be working? I think my DD would respond far better to this.

@SwattyPie so far so good in that weight has been increasing and BP etc are now normal.
We don't have these big arguments anymore as "I'm on her side" , just for moral support. I don't think she is going to be "cured" but just hoping she will manage better when she is on her own.
But she is under a specialist in CBT-E at camhs, who she gets on well with.

That is good to hear @Threeyearsalready Getting back to normal obs will be such an achievement as our lives are currently so restricted due to abnormal bloods etc. And I hope that, in time, she will come to see that I am on her side.

Our week has been a total car crash. The one glimmer was weight Not lost (no gain either obviously)after previous weeks of still losing which shows what a shit show it's been. DD had been self harming again to punish herself for eating, found a stinking locker that she was stashing lunches and snacks in instead of eating (when we allowed her to eat in her room) and now after agreeing w DH he would do breakfast today he didn't wake her up so her whole day is already out of routine which will blow up later.My DD2 told her sister she is Done w it all yesterday so a v v unhappy home right now. I feel like I could divorce DH just because of this morning but I know it's because I feel like I carry so much of this and have to tell him exactly what to do (last night he called me in to tell him how much to portion) I have as much insight into AN as he does...it's so draining...thank you for letting me vent😭Any advice please on how to navigate all this

ReineDeSaba

So sorry. It's all incredibly hard. I know how something fairly simple like breakfast at the wrong time can mess up the day.

We had issues with dh being too laid back with meals and easily manipulated by dd so we divided roles. On the whole I do food and appointments and dh does whatever he needs to to support me. It was hard at first but second nature now. It means there is much less conflict between us and things generally run pretty smoothly. I'm not sure if that would help in your set up.

Poor dd with her SH. It's an awful thing on top of the ED. All I can say is as the weight started to go on it subsided with my dd. We saw a separate team at camhs for her SH and SI and dd did some work with them on some grounding exercises, making a self soothe box, benefits of listening to white noise etc. It was actually the most helpful few appointments that we had with camhs.

Sending you love and I hope you manage to get a few minutes peace x

Shanghai101

Yes at 19 it must be incredibly hard to have complete control. It was hard enough with my dd at 16, she's 17 now. Negotiating is tricky as given an inch they'll take a mile, but if you can find a way to get them eating with less distress you can slowly build on it. There's no quick way out of this as I have reluctantly realised but we are a long way from where we were when dd had no say over food and meal times were many hours long and often hugely traumatic.

Thank you so much for the kindness of your message @BagpussSaggyOldClothCat ...I had a bloody good cry in the bathroom for 10 minutes after I read it.
I know the toll on every part of our lives right now is to be expected but I really want to fast forward to something a lot nicer!

Can I ask if the team assisting w addressing your daughter's SH were linked to the ED unit or was there a separate referral?

Hi @ReineDeSaba sorry to hear you're having such a torrid time at the moment. My DD had interventions for her SH from what was called in my area "intensive home treatment" - they helped her to identify triggers for self harm using a traffic light scale and then worked with her to identify what help she needed to go from amber back down to green. It was one of the most successful interventions we had from CAMHS and I've talked about it a lot on these threads - it enabled us to intervene proactively with a distraction exercise such as holding ice cubes for as long as she could or throwing a bean bag to each of us. We were under the ED team but our ED support officer referred us to the IHT team - she said it helped her to be solely focusing on ED and not getting mixed up in the SH element of the ED - which made sense. Please do press your team for a referral...

Also, @ReineDeSaba @Shanghai101 - hold onto hope. My DD was where yours are but now she's a different person. The ED hasn't gone entirely and her way of controlling the ED is I think an extreme but not unknown response but I'd say she's gone from 'the ED having her' through 'her having an ED' and now we're in 'she has traces of an ED' - my own personal view is that for her it may be like a volcano - it erupted violently, is now very low level activity and hopefully will be dormant for a long long time but it may well still be there in her life for many years and she needs to be tuned into when low level rumblings threaten/herald a more active period

ReineDeSaba
In our area it's called the crisis team and referral was made by the ED team psychologist when dd disclosed how she was feeling in her appointment. It all happened very quickly once referred. It sounds similar to the service myrtle mentions.

That’s a good analogy myrtleWilson. I do hold hope for all the DDs on here. There are small shoots of recovery but then everything goes pear shaped or something else rears it’s ugly head. I try to remember that recovery is not linear - although, until now, I didn’t really understand that that could be day to day or even hour to hour. I had thought it was referencing a much longer time scale. Anyway, wishing everyone as good a time as possible for the week ahead. And to those of you whose DDs are well into recovery, thank you for still being here and sharing your hard won wisdom.

Oh wow, thank you for the great practical pointers @myrtleWilson and @BagpussSaggyOldClothCat
I love the volcano metaphor....I think i am volcanoing in parallel w a crazy journey of emotions
I am so glad I found this thread, the understanding and wisdom has managed to lift my bleak mood this Sunday, despite how distressing the last week has been

Just a download really. After DD's second absconsion, we have had a meeting with her social worker and the community team that she's been under. She's confined to ward now, which is miserable for her - no walks, no trips, not even grounds leave because she paces compulsively. Social worker raised the possibility of saying she might be transferred somewhere 'more secure' if she keeps trying to abscond - which I think would be traumatising for her - she's let a very sheltered life really. DD now refusing 'named nurse time' as well as all other therapies and won't really talk to us on visits. On Sunday, she sat with her head on her knees and asked the nurse to make us leave after 20 minutes. Her community team have started discussions with the Adult ED team about transition, but Adult Services are reluctant to take her on as she isn't engaging. (Apparently she's likely to be referred to the Community Mental Health team if ED services refuse her - don't know how helpful they:d be - does anyone have experience?). I'm terrified that she'll be discharged at 18/when she's 95% WFH and either abscond or starve/refuse fluids and it'll be 10x more difficult to get help because she's an adult. One thing that is on the radar is compulsory meds by NG, while she's an inpatient at least, which is tricky legally and ethically - it seems the best of the increasingly narrow range of unappealing options though.

Fallen off thread a bit, welcome to newbies although sorry you've had to find us.

Nan are there adult ED units? Surely your dd should be transferred there once she's 18? She sounds so unwell and there must be a real risk of her dying if they discharge her. You must feel so drained and exhausted by this, I can't even imagine the stress and heartache, sending you a mn hug.

Interesting re the posters talking about giving older teens some control to devise meal plans etc. it's a fine line between giving autonomy and enabling the ED, I seem to walk this tight rope every day and constantly fall off!!

My dd is 17yo and started restricting food when she just turned 14yo (first lockdown) FBT worked well for us in that she restored her weight and was physically much better. Mentally she remains up and down and now 3 years on she is beginning to be more independent with food. She makes her own breakfast, she can make her own lunch although I still make it the majority of the time and can sometimes make choices based on what she actually wants. I still prepare dinner and pudding.

There's still lots of ED rules and behaviours that
linger which is frustrating but I have to balance that with the fact that she's generally happier, has a nice group of friends, her first serious boyfriend, a pt job, is learning to drive and doing okay at college.

@ReineDeSaba @Shanghai101 @NanFlanders and all the other exhausted parents out there, I'm sorry to hear how difficult things are. I have no advice really, we're at a different stage in our journey but I do feel your exhaustion and stress and send a hand hold.

I guess we could be seen as lucky in some ways as my DD11 is an Inpatient currently. 5 weeks in now. I'm also completely exhausted and have no real reason to be, everyone tells me I should be recharging right now but I feel worse than I ever have. She's gained a small amount of weight, 1.2kg in the 5 weeks, and she does look better physically, she's engaging with the meal plan, her obs are much improved. But her anxiety/ocd is through the roof, she's picking at her teeth and tongue after meals, wiping saliva on her hands, absolutely fixated on the ward routine - checking the time constantly. She's still only at 78% wfh so I do know that there is a long way to go, but I feel.she's massively deteriorated mentally. She's been offered sertraline but is refusing. We've raised this with the staff but they don't seem that concerned. We've got a monthly progress review meeting tomorrow so will raise it then, maybe they will be able to.modify things.. I just feel her already rigid thinking is being hugely enabled/exacerbated by the ward setup. I am tempted to push for home passes or more time off ward to broaden her horizons but I don't think they'll go for that until she's over 80%.

@GrannyRoberts

Sounds hard at your end too.

What do you mean by they 'offered' setraline but she is refusing. Does she have a choice?

The doctors in hospital decided she needs to go on olanzapine, DD did not have much of a choice (though we came close to the NG tube a few times).

DD is steadily gaining weight but is only to cope with the meal plan. No free eating. She is pretty miserable most of the time. We are walking on eggshells. Mentally, we are just not moving on. I keep telling myself it's still early days but it seems to be, at least from reading on here, a long term issue for many.

I just don't get it, young girls with a whole life in front of them. Parents willing to help them.
Why throw away a bright future.

Feeling down as dd was doing fairly well but become more anxious about eating again. Made herself vomit several times in the last week.

@Curlyhairedassasin sorry I worded it badly. They prescribed sertraline and give her the tablet every morning but she refuses to take it. I don't know why she won't take it, but so far she has refused.

Granny** have they talked about olanzipine? This medication can really help reduce the intrusive thoughts. I don't think she should be allowed to refuse medication tbh, in the same way she can't refuse food. If someone has to sit next to her and coax her to swallow it for an hour or more then that's what they should be doing. Sadly it's really normal that the mental side of things takes a massive nose dive when the physical side improves 😕

@Curlyhairedassasin I feel the same. Not moving on mentally at all. I do know it's early days for us too but currently feeling pretty down about it all. @Threeyearsalready that sounds really hard too, not surprised you're feeling low. It just seems relentless.

@Girliefriendlikespuppies no mention of Olanzapine yet, I remember you saying how it helped your DD. They suggested Sertraline for anxiety/OCD it seems to be the one they usually start with as far as i can tell. I will raise at the meeting tomorrow about getting her to take it. Incentives have worked well for her so far. I don't think she sees this as part of her physical recovery and in her mind it's therefore unnecessary but the anxiety is so obviously raging at the moment I think we really need to push this harder.

Thanks for the MN hug @Girliefriendlikespuppies. Yes, there are adult units, but beds very much depend on BMI and DD is now (after 5 long months IP) 80 WFH, so almost certainly won't qualify. But also not engaged with treatment so Adult Community ED services reluctant to take her. Her CAMHS psychologist is asking that the ED adult service is at least are part of a care team if she ends up with generic community mental health team under a CTO either with us or in supported housing - but obviously absconsion is a massive risk. DD is furious with me because I'm supporting compulsory meds, but I can't really see an option at the moment. If she comes out in her current state of mind, I think she'll go downhill rapidly. We've also been told we can request a section if we are worried - but that's likely to be to a generic psych ward. As @Threeyearsalready said, it's hardly the bright future I'm sure we all imagined for them.
@GrannyRoberts Of course you are exhausted! I'll bet you've been running on adrenaline and not had much sleep. I'm surprised they haven't offered olanzapine - it works better than SSRIs (like sertraline) at lower weights and also has a slight sedative effect, which will give your poor DD's head a rest.

@GrannyRoberts agree with girlie and wanted to mention the Olanzapine again. DD started it in hospital. It works pretty quickly and takes the vet edge off the anxiety. I believe it was key in getting DD to eat. she is still on it (increased dose and setraline too now). tbh, not sure the Sertraline is making much of a difference - and it takes weeks and weeks to kick in. Olanzapine should make a difference within a few days. I would definitely ask the team about it again.

Really sorry nan that things are still so hard. I do not know anything about adult services as DD is so much younger but it sounds really scary and completely inadequate.

Hi guys sorry not checked in for ages.
There are a lot of very tough situations on this thread and I am lurking but not offering much because it seems crass to do so when my DD is recovered
I did want to add to the olanzapine voices though. It was a game changer for my DD..kicked in immediately. Calmed her head enough to get food in a little more easily. It was noticeable. And her sleep got so much better. Which again I think helped.
Please all those not using it do ask esp if still in early stages of treatment. Our team was pro meds and I am so pleased they were. As PP said we had to up the dose after a few weeks.
@GrannyRoberts olanzapine is specific for ANs so maybe your DD could be persuaded to take it? Altho at 11 I am amazed they don't just insist on her meds being swallowed.
In our news DD is finally growing. We were never sure if her height had been affected by her AN (she was ill for c 24m from 13 to 15) as although not short she had not really overtaken my height and her brothers are both much taller than their dad

Anyway she's def taller than me now at just turned 16. Everyone at football was commenting. So relieved.

@Lottsbiffandsmudge Please don't feel it's 'crass' to join in the conversation when your DD is recovered - I LOVE recovery stories! It's really great to hear they can get out of this nightmare - and any tips about what was helpful (though I know everyone is different) also gratefully received. I was part of a parental focus group the other day and a couple of people said how good it would be for our young people to meet people who'd recovered. Obviously they just meet the people who are in IP for the second or third time and it makes it hard for them to believe in a brighter future.