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!

@Girliefriendlikespuppies just read your msg better, yes it's the ED 'section' of CAMHS

@LaCerbiatta

We were told that less than 500 cals for 2 days needs a&e. I would take her back. Things can escalate very quickly (as we found it with DD). What usually happens is an electrolyte imbalance (hence bloods) can affect the heart and cause heart rhythm issues (that's why they always do an ECG for patients presenting with anorexia). In extreme cases, this can cause cardiac arrest. DD was fine on a Sat and taking to the HDU 2 days later as her heart rate and body temp had suddenly dropped a lot and her ECG was abnormal then too (all fine 2 days prior). She was still walking around, arguing etc. You would have never guessed from the outside how ill she was. I am not trying to scare you but I did not realise up until that point how quickly things can tip over. If she isn't eating much, I would take her back today. Agree with girlie that it is really scary they sent you home with an abnormal ECG.

Welcome @LaCerbiatta am glad you found your way over from your own thread. Loads of advice and support always available here

@LaCerbiatta been where you are very very recently. This time last week I was being fobbed off by GP, A&E and 111. By Saturday my DD had been admitted to hospital on medical grounds due to low heart rate, BP, body temp and abnormal liver and kidney markers. 3 nights hooked up to monitors and IV fluids and now she's in a psych ward for intensive treatment. Don't delay, please, don't be fobbed off. ED awareness seems to be shockingly bad across much of the medical profession.

Thank you so much, it's so important to hear these stories! Hope your dd is doing a bit better x

Also @LaCerbiatta you're in the right place on this thread. I've needed so much reassurance and hand holding over the last few days and the support and advice has been amazing.

@GrannyRoberts how is she doing?
@LaCerbiatta I honestly think you need to go today.

@LaCerbiatta please make full use of the experience of those on this thread. If I had known about this support earlier in DD's illness I believe that we could have avoided hospital and recovery may have been quicker. The GP let my daughter down, if I had brought his actions to this forum then I am sure the support would have pushed us for a quicker diagnosis and treatment.

My DD is a late teen, she has been discharged from CAMH at the time 106% wfh. However now we do not weigh and DH thinks DD is losing weight (her baggy clothes means it is hard to tell) - DH wants to purchase some digital scales and blind weigh her at home - at 16.5 years old I am worried for a couple of reasons:

1.She is very determined and may outright object (she will know this is outside the usual medical observations that were conducted during her treatment).

2.This may be triggering when we are at a point where we are hoping to move away from the phases of weighing which are reminiscent of the earlier stages of her ED.

It is her weight and not any other health observations that I am worried about right now - if it spirals downwards then the other markers will become important again.

I would really appreciate peoples thoughts regards to this and what approaches others have taken once their DC are discharged. I am very concerned that the year rebuilding DD may be lost as she may be restricting again out of sight.

Thank you.

Thanks all, we seem to be having a more positive day today, fingers crossed, and dd is determined to make an effort. She added half a banana to her breakfast and is now having a sandwich. All very little of course but a massive improvement from yesterday.

I'm definitely taking all advice on board and will be ready take her if she doesn't sustain above 500 cals

Just to mention that for older DC CBT-E can be useful, it's recognised in NICE guideline.
Offered by camhs.

Hi @LaCerbiatta sorry you find yourself here.
Here is a link to MEEDS. Click on Annexe 1 and go to page 29..this gives red markers (high risk) for AandE to look for. Anyone with 1 of these should be considered high risk.
https://www.rcpsych.ac.uk/improving-care/campaigning-for-better-mental-health-policy/college-reports/2022-college-reports/cr233

it also helps you assess how bad things are.
It is not true that an abnormal ECG means bloods must be abnormal. My DD had a long QT phase (classic AN symptom it basically means the heart takes too long to reset after each contraction). The GP assessed the ECG as normal. 3 weeks later the ED consultant reviewed it (it took me that long to extract the results from the GP) and we were told to go straight to hospital. Luckily in those 3 weeks it has resolved with extra weight. But at any point during that period she could have suffered a fatal cardiac arrest.
Sadly the medical profession is so clueless about AN on the whole. Pointy elbows are required.

Sorry meant to say her bloods were normal and she was doing football training.
Specialists need to review results. Or know what to look for. Hence the MEEDS document.

I'll have a look at that, thank you so much!

Been getting the silent treatment for almost 7 hours today. Hand hold please.

I had a chat with school today and if DD can return full time for the last week of the term I will probably have to go in for the last week to do the lunch meal support.

I am freaking a bit out about September as DD cannot eat unsupervised at all (she won't eat then) and school said they won't have staff to supervise lunch.

I am working (more trying at the moment) but I will not be able to do lunch support beyond this week in July. I will lose my job.

If a child has SEN, support needs to be put in place. I would expect the same for pupils who need support with aspects of their school life for their mental health disorders. Is that not the case? 😔

Swatty I'm sorry to hear that and I know how it feels. Is there something in particular that triggered it today? Is it just you or the rest of the family as well?

Curly I'm not sure about school and what they are supposed to offer. My dd's school just offered a room she could eat with her friends but no supervision. As it happened she was too ill for school all day anyway so had lunch at home and attended school either morning or afternoon. It's incredibly difficult with work. I'm doing bits and pieces at home but still can't commit to regular hours as dd won't eat without me.

Had a camhs app. She bullshitted her way through the whole thing, lying about what she eats, and tried to make them think that it was all in my head and that my anxiety made everything a problem. I've given up today and let her do whatever the fuck she wants, including taking her to the gym for the first time in months and I'm treated with silence as my thanks. Had enough. Only us around at the moment, and strike day tomorrow, so a whole day of it to look forward to. Seriously considered kicking her out this evening, or dropping her at a relatives house. Can't bear to be near her when she treats me like this. She hates me so much, she doesn't want to be near me either. I'm so sad.

Swatty Do the team know what she's up to and do you get time to speak with them alone? My Dd doesn't say a word in appointments and goes ballistic afterwards about what I've said even though we're barely in there for 10 minutes nowadays. We do every other appointment on zoom with just me so I can speak freely without repercussions.

Sorry your day has been awful. They feel so bad about themselves that they want us to feel bad too and they can do it because they know that we'll never give up on them - as much as we think we want to. She definitely doesn't hate you, so many who have recovered say they felt uncontrollable rage towards their parents at the time but are now grateful for them for saving their lives. I hear time and time again that relationships mend and become stronger and I hold on to that hope.

I hope tomorrow is a better day for you x

Oh, the poor little thing. Hysterical call from the unit tonight. DD has had a horrible week and gone so far into deficit that she had to have an NG under restraint (behind a screen as they couldn't get her into the treatment room). She can't go on walks because of low BP due to restricting fluid and can't go on time out because of the flight risk following her absconsion. She won't take AD meds to lift her mood nor anti-psychotics to quieten the AN voice because (she reasons) if she doesn't hate herself or have the voice to stop her she might eat uncontrollably. She won't do therapy as she has a terror of what she says being passed on. We've had 3 meetings this week with different staff at the hospital asking if we've got any ideas on what to do to get her to engage...

Nan, just so sad. Don't know what else to say

@NanFlanders So so sorry to read how ill your DD is. I wish I had something useful to say. How are you and DH coping?

@NanFlanders Just wonder, if they feed via tube, would they be able to administer antipsychotic drugs that way? If I remember correctly, that was being discussed for DD when things went downhill whilst inpatient (she ended up taking the meds orally). DD was never as deep in the grip of AN as yours but I believe for us the olanzapine was instrumental in the early days. She is still on it (on an increased dose in fact). I don't think we would cope without it at this moment.

@Curlyhairedassasin Theoretically, yes. But she doesn't actually have the NG that often - once every couple of weeks or so. She used to prefer it to eating because then 'it wasn't her fault' that she was consuming the calories, but now she thinks there are more calories in the feed so tries to eat instead. I'm just terrified that when they do get her to the right weight and discharge her, if she hasn't accessed any meds or other therapies, she'll go right back. I just hate this disease with a passion. And she has such bad memories of FBT that she dreads coming home and won't really talk to DH (who walked her to school every morning and took Wednesday afternoons off to take her to the park).

@Curlyhairedassasin Thanks - we're okay actually. We do know she's safe - for the time being at least. We've each planned to take DS away for a week end July/August with the other one staying behind to visit DD.

@Curlyhairedassasin (again!). I meant to say in response to your post about school, my DD was offered the choice of eating lunch in the sixth form staff room - not supervision as such, but they would keep a weather eye out and weekly weigh-ins would show if she was skipping meals. Also, if you have a disabled child - and AN does count - you can usually take up to 4 weeks parental leave (not paid unfortunately). Might your employer be up for you taking it as 2 hour lunch breaks over an extended period. DD's team were very good at writing letters for my employer setting out that AN is a 'life-threatening condition'.