Support thread 10 for parents of young people with an eating disorder

[Lottsbiffandsmudge]

Hi guys
Here is our new thread. I will add a link to it in Thread 9

@Curlyhairedassasin overnight it is 37 as her Apple Watch keeps send her notifications. In the day in the 50s. She has ECG booked for Thursday am

@Girliefriendlikespuppies she was always at the 98th centile, she was a muscular build prior to this, strong and sporty. I’m not sure how much weight she’s lost but she was 65k when 13, she’s now 58 at 15 but taller.

I think I’ve buried my head in the sand and should have got help before, the heart thing has slightly freaked me out.
she is eating just not much and only when made to come and sit at table.

Notallgood get the watch off her also check her phone and remove any fitness apps.

If v she was 98th centile I'm (guesstimating) she's about a stone under where she should be 😕 that's based on my dd who is a similar build. It's possible her brain is already using it's fat reserves to keep her ticking over which will have a massive knock on effect on her cognition/ behaviour.

She needs 3 meals and 3 snacks, you need to start implementing FBT as described by lots above. Everything should be full fat, start adding double cream and butter where you can.

You'll need to talk to the school about lunches.

Tbh with her heart rate below 40 I'd advocate a&e as shes not physically stable.

I think I agree with girlie, with a resting heart rate under 40, I'd be off to hospital. I called 111 when ours dropped under 40, they sent an ambulance and then admitted DD (ECG and a few other things were off too, not just a low heart rate).... 37 is pretty low even for a resting heart rate.

Hi @NotAllGood welcome and also sorry you are here. I agree with everyone else, definitely remove the Apple Watch, best thing we did for our son. I know it's scary and you're probably sat thinking a&e is an over reaction and you have appointments coming up but this illness takes hold so quickly and they go down hill so fast. The gp assured me waiting 4 weeks was fine and that I was over reacting, the support on this thread made me walk into a&e and it was the best thing I did. We're pretty new on our journey but the help from a&e was paramount and got us the right support so much quicker. We were admitted on the spot at 76% wfh. He didn't even look unwell, very thin though and wanted to still do sports and thought we were the worst people in the world for stopping him. He was very very cold and in a state of extreme starvation I feel dreadful for not realising sooner how serious it was and also a lot of denial as I couldn't believe it would be my child, our world fell apart. Your daughter won't want to go to a&e as the illness will know it's going to be found out so expect lot's of resistance including with meals. There is a wealth of support here which I would be lost without, I feel I've found out more here than I have from the ed team.

Please take her to A&E now. Whenever my DD:s heart rate hit 45 she was immediately admitted to hospital.

@NotAllGood just to agree with others re the heart rate. When my DD was admitted she was put on a heart monitor. When her HR dropped below 40 in the middle of the night they got a doctor in to do an ECG immediately (I.e. at 3am)

Thank you all for your advice. I’ve not taken her to A&E she has an ECG scheduled for tomorrow.
i talked though all the info you’ve shared with me with my daughter last night, I don’t think either of us had realised how ill she is. We’ve started the 3 meals and 3 snacks plan. I’ve ordered the Eva Musby book. Husband has cancelled work trip to be here to support with meals.
Ive not really slept so have the morning off work to try and sort my head out.

I would still go to a&e. They will not only do an ECG but also bloods to check for specific electrolytes changes and you will get the results before discharge. This cannot be done in an outpatient setting. Depending how I'll your child is, it can be very dangerous to start the 3+3 at home. At times, it needs to be done under strict medical supervision as eating too much too soon can trigger a so called 're-feeding syndrome' which can be fatal in rare cases. My DD (and many others here) had their DC admitted to hospital for refeeding as we needed bloods daily for a while to make sure the body was coping. It's bizarre to think that the thing they need most can be so dangerous at the same time.

my DD was admitted to the HDU when her heart rate was under 40. It's not something I would leave another day....

I also think you should take her to A&E. They will understand why you are there. Any health care professional with knowledge of EDs that we came in contact with always advised us to go to A&E when concerned about HR or palpitations. Things can change very quickly for the worse in young people with this illness.

Honestly, I don't mean to alarm you, but her heart rate will fall further when she is sleeping tonight. When my DD's heart rate hit 39 when she was sleeping (in hospital!), alarms went off.

Hi @NotAllGood you're probably feeling overwhelmed, petrified and worried about being seen to be making a "fuss" when it feels like the wheels are beginning to turn. Honestly though whenever we ended up at A&E even if we were cleared to go home, the staff were professional and thorough and kind and were not about to take a risk on just bundling us out the door and I never felt we were imposing or exaggerating.
As others have said the speed at which the ED can take over and have silently tipped out children into a dangerous place is terrifying. When once at CAMHS when we knew she was very ill with the ED but hadn't noticed a significant deterioration in her from the previous week but the team were so horrified by her observations that they were calling an ambulance to admit her, it brought home to me how huge the difference is between external presentation (still looking ill though) and dangerous reality of what could be happening underneath.

youre in the right place with the thread and this group of warrior women...

Just wanted to come on and offer support to you as well @NotAllGood. Please don't give yourself a hard time for not seeing this sooner - pretty much everyone on this thread has had the same experience. Eating disorders by their very nature are secretive and hidden. The week before we realised I was signing my dd up for parkrun, taking her to the gym and buying her low calorie foods. I felt so stupid when I put all the pieces together!!

Hope things are going ok with you and your dd. Now you know what's happening you are in so much of a better place, even though it doesn't feel like it now. X

Hi, hope it’s ok to post here, I have a 14 year old, she was diagnosed yesterday at the ed clinic and they were extremely concerned with her (high risk for refeeding syndrome) and advised I took her to the hospital straight away.
since then we have been on an absolute wild goose chase trying to get her some treatment.
Her obs and bloods are coming back normal, but she’s on day 4 of absolutely no solid food, Sunday she ate 1 small cereal bar and since then only drinking 1/2 coffees a day, the fact her tests are normal is fuelling her more to not eat as she thinks she’s fine.

we are back at the hospital now just waiting for them to finally come up with some kind of plan or treatment, no one is explaining anything to me and I’m worried sick.

Anyone been in a similar situation and know what to expect treatment wise or any advice in which I can go back to them and say this needs to happen as I’m clueless right now 😢

thank you x

@Eden1990 so sorry to read about your DD. There is a lot of really useful
advice on this thread. I scrolled up and found this previous really helpful post from the OP @Lottsbiffandsmudge and have copied it below for you. It’s an awful lot to take in at the beginning. I’m sure some others in a similar situation will be along soon to offer advice. My DD is older so we have to take a slightly different approach but the meal plan is the key to recovery. Where there has been severe restriction this must be done under medical supervision to avoid refeeding syndrome.
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Lottsbiffandsmudge · 23/11/2023 16:47

@Cantfindthewordsddstruggling my DD was 13 when she started restricting too.
Its a terrifying place to be and its normal to feel overwhelmed.
As @greydoor says Beat and Eva Musby are a good place to start. But here is what I wish I had known when I was first in your situation.
AN is a biological based illness brought on in genetically predisposed individuals by weight loss.
It doesn't matter why the weight loss happens. In our case my DD was trying to 'stay fit for football' in lockdown
Once the weight loss has happened (which is always without the carer knowing!) the ED takes hold.
From then on the reasons for continuing to lose weight are the ED
The only cure for an ED is weight gain.
You cannot therapy your way out of it. In fact therapy can be pointless whilst at a very low weight as the brain is starved.
Weight loss hits the brain first. The body protects vital organs. The brain is not vital.
This explains the out of character behaviours, the lying, the totally illogical thinking. There is no reasoning with ED.
I found it helpful to think of her AN as a separate entity. And in fact many sufferers describe ED as a voice in their head.
Often they want to eat but can't. The ED will not let them.
This is why it's best to remove any choice around food. Because every choice you give will be run past the ED and the sufferer will go for what they consider to be the lower cal option. Even if (like my DD) a naivety about cals means they make the 'wrong' choice.
Making and serving food that the sufferer is supported to eat gives her an 'out' with the ED voice- 'mum made me'. They will still have extreme guilt.
If your DD is upset it means you have 'poked' the ED. This is a good thing. It's not possible to treat an ED without the sufferer being upset. Your are saving their life. Anxiety won't kill them an untreated ED will.
ED turns usually compliant, honest DC into lying, hysterical DC you don't recognise.
Never trust the ED.
Try to self refer to your local ED service if poss.
Persist with the GP to get physical obs done.
In the meantime start a meal plan (unless she has been severely restricting and has lost a lot of weight v quickly in which case I would go to A&E to rule out refeeding syndrome)
Plan ALL her food. Breakfast, snack, lunch, snack, dinner, snack
If possible take her out of school to establish this plan.
Read Eva for tips to help you get the food in. The thrust is distress tolerance and compassionate but firm insistence. Use distraction at food times. Anything that helps. Set an expectation that food will be eaten.
She will react badly. That's normal. Keep saying things like 'I know this is hard but this is what you need to eat, please take a bite', if food is thrown replace it.
Take each meal at a time. Some will be OK. Some will be hideous. You can only do your best.
As soon as you get a referral think about meds. Olanzpine helped us.
Most important of all remember that recovery is possible. More than possible. Younger sufferers often do better not least because they stay in children's services and parents naturally have more control.
And please come on here to vent. This is all easy to type..it was hell to live through and I am not going to lie it nearly broke me. The support on here is invaluable. Even if we can't help practically we can listen and most importantly empathise. Edited

@NotAllGood How did you get on with the ECG etc?

@Eden1990 I am sorry I did not see your post yesterday. How are things now?

@Curlyhairedassasin ECG went well, no structural issues with her heart, but as lots of you have said the low heart rate is an issue. Waiting for more blood results (due this morning). We were fortunate to access hospital via GP sending us rather than via A&E. DD is being very cooperative with eating, I think she’s very scared and hadn’t really processed how far into this she was.
Oddly currently under the care of Kid’s gynaecology consultant but we’re going to be transferred ED team as outpatient assuming bloods come back ok.
The information you guys have been sharing on this thread has been really helpful, been reading through some of the older threads when I can’t sleep! I feel completely broken but also oddly hopeful that there is a road out of this, just a bloody long one.

Things with DD seem to escalate again. She is still eating the meal plan (without butter) but she keeps telling me she needs to take up running as there is too much fat at her body. Been a while that she as said such things. She is also getting physical again - but not in eating situations. She attacked me a few times yesterday when I disagreed with her about some random (non food related) things. It's alway her leaping at me, pulling my hair and the dragging my head down and then hitting, kicking my head. She scratched me in the face too. I look like I have a feral kitten :(

We are just under this useless ED team who weigh her but little else. Her issues run obviously a lot deeper. We see the psychiatrist from the ED team on Monday for a review (it's usually just a chat and she is prescribing meds which the GP cannot issue). But there is no actual help. Just wanted to pick your brains. Where should be go for help, what should we be asking for. I feel totally lost.

@Curlyhairedassasin I'm so sorry about the lack of support. It took 4 months on a psych ward before we were able to get community support from ED/CAMHS teams. Can you explain to the psychiatrist what's been going on? They may be able to kick start a higher tier of support?
I don't know whether this would be an option for you, but Eva Musby has put together a list of certified FBT therapists here https://anorexiafamily.com/certified-fbt-therapists-family-based-treatment-who-skype/. We did one of Eva's workshops a while back and she speaks very highly of Karen McMahon and Karen Johnston.

Thanks granny will have a look!

Hey @Curlyhairedassasin what area are you in can I ask? We are north east and the ed team are very strict on acceptable and non acceptable behaviour regardless of the person being ill. My son threw some crisps across the room and had his fists clenched and they went to town on him, it's really helped and if things are heating up (today it was over clothes choice as non uniform at school) I just reminded him about unacceptable behaviour and it seemed to help. I appreciate they need to get their frustrations out somehow but it's about managing that but violence is a huge no and they said social workers would come to manage it if things escalated. From what you've said I really feel you aren't getting much input from the ed team or support, is there anyone who you can complain to? Hoping things get moving soon for you.
@NotAllGood pleased your being seen and that the ecg was ok. Fingers crossed for bloods.
@Eden1990 welcome and also sorry you're here. I'm new too so don't have much advice I'm afraid but I'm sure others will. You do need to push for help though I found the healthcare professionals wanted my ds to be more unwell before they'd admit that something was wrong.
@greydoor how's behaviour going? Been thinking of you

@Proseccoismyfriend we are north west. They know she is violent and has been in the past and they just told her it's not acceptable behaviour. That's all. There is no consequence of any sort. I was full of bruises in the Summer. It got shrugged off.

I have been trying for years to get a social worker as DD1 has complex needs and we haven't even managed to get a social care assessment (DD1 is in a special school and almost 16). There is just no help here.

Glad ECG was ok @NotAllGood !

@Curlyhairedassasin I am so sorry that things have got so bad for you.
Is she taking her meds and what is she on?
Tbh I think I would be having a very robust chat with the psychiatrist about the physical danger she is putting you in. It's not acceptable to be injured routinely. They need to provide you with more support.
Sad as it is to say I found bursting into tears in medical reviews sometimes got me somewhere. Ridiculous but true
This can't carry on