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

Welcome @Roui your son sounds similar to mine we were told it was anxiety/arfid but even though they won't diagnose him his fbt nurse said it's anorexia. I'm so sorry your going through this, my son was so cold too and pale, I thought going to a&e was me wasting resources but they were amazing and it got us the correct help quickly. Sending hugs ❤️

@roui I no expert on any of this as we are right at the start of my DD’s journey. Not sure how useful any of this will be for you, but wanted to share.

I took my DD on Saturday morning to A&E, they did bloods, ECG etc and the consultant said she was borderline being admitted her heart rate was low but on the cusp of the admission criteria. He scared the shit out of her (and me) didn’t mince his words, told her she was a medium risk of dying if she didn’t make immediate changes. I won’t forget him or his final words to her ‘this hospital will feed you via a tube directly into your stomach if you don’t feed yourself, so go home and start eating or your mum will be bringing you back.’

Risky decision but 60 hours later she has now had 7 meals and 6 snacks. Didn’t think I would be counting and writing down what she eaten but I am, as I am determined to help her through this.

I feel like I am weaning a toddler again and meal planning so I can get her through another day. I am giving her what I know she will eat for now, just to get food inside her, she was consuming max 500 calories a day, we have hit 1500 today.

The advice from the more experienced people on this thread is amazing, so many advise to take control of food, they are so right, it’s taken me re reading it over and over to grasp that concept I now need to implement it! Thank you to all those who repeat it.

My biggest regret is wasting three weeks from my initial post, and ignoring the advice of taking her to hospital. I did the GP route and she played him perfectly. Promised to eat more and ate less and less as the days ticked by.

We have our first CAMHS appointment on Wednesday. Not sure how cooperative DD will be, time will tell.

What a nasty illness this is. And bloody frightening how quickly it gets into the brain.

Sending you a big hug from a fellow overwhelmed and desperate mum, who just wants her happy child back.

@Roui goodness, the long Qt would really scare me. It doesn't sound like the team who checked your your ds understand eating disorders, and 3 weeks seems too long to wait to re-check his heart, when most eating disorder sufferers are not able to change eating habits themselves without additional support.

Lots of other conditions can lead to anorexia, so anxiety can be a precipitating factor, however once an eating disorder 'switch' has been 'flipped' if doesn't make a huge different what the cause was - the treatment is the same in the early stages. I'd take him to a&e too...

@Dinnerisburnt please don't feel bad about trying to help your dd before now. I'm sure that pretty much every parent on this thread will have had their own 'ohhhhhhh!' moment. Days before the penny dropped for me I was being a 'supportive parent' by buying my dd a Fitbit, signing her up and taking her to parkrun, and taking her to the gym multiple times a week. All the while 'reminding' her that she needed to eat more fuel if her body was doing more activity... and she nodded along and reduced her intake more.

@Roui sorry you’re here but hopefully the advice and support here will carry you through the rough times ahead. I would advise starting a paper food diary for him. Write on what you gave him, how much he ate and any comments/emotions that are significant. Weigh the plates in and out if you have to. My DD is very good at looking like she’s eating during the meal then still having most of it left on the plate when I clear up. Don’t let him go to the loo for an hour after meals to prevent purging or simply holding it in his cheeks and spitting.

@Roui really sorry you are finding yourself here. Just driving off to work. just wanted to suggest a&e too. DD had a similar ECG and a few other bits and was admitted to hospital (HDU). There are a few here who were fobbed off but admitted after going to a&e. You won't be wasting NHS time if that is your worry. Anorexia can become very quickly dangerous. The low food intake causes certain electrolyte changes in the blood which then have an affect on the heart rhythm (that is the reason for doing an ECG with AN).

@Roui it’s going to be very overwhelming for you right now and I remember how scared I was at this stage. Regardless of the diagnosis I think you might find lots of useful information in the book “Skills based caring for a loved one with an eating disorder” by Janet Treasure et al. As well as giving a good insight into what someone with an ED is going through it is also a useful source of good parenting advice, lots of which would be helpful for an anxiety diagnosis too.

We've had a small breakthrough the last few evening meals. Dd has always left a few mouthfuls of her meal so I serve her too much to compensate which I know is not the ideal way to deal with it but it saves confrontation which I hate. The last few evenings she's stopped eating as usual but then very quietly whispered 'I'm still hungry' and puts her arms out to me for a hug. I assure her it's good to keep eating and she then eats a few more mouthfuls. Could the ED thoughts be lessening? It feels like she's let me in a little bit.
She sent me a few clothes to order and she's asked for size 6. There's no way she's a 6. She's starting to develop hips and I think she'll need an 8. I'm not sure how to navigate this.

Roui sorry you are here. It certainly sounds like your ds has an eating disorder. Many sufferers start the journey with anxiety that becomes overwhelming and they use food restriction to cope. As pp have said it definitely needs to be taken more seriously. They can become very unwell very quickly. A&E has bee the catalyst to proper intervention for many in this thread.

kelkee it sounds like ED provision is good in Spain. I wish we had day care here. It's either FBT at home or inpatient care. Please come back and update how things are going if you can.

Dinnerisburnt I didn't see it for months. Dd was an expert at hiding her ED. She lost wait through the winter and was wearing baggy clothes. There's little point in looking back. Keep focused on what you can do now xx

Girliefriendlikespuppies sorry you've got some worries about dd eating less again. I hope you can persuade her to eat more or just get some sneaky cals in where you can.

This thread is moving so quickly lately. So sorry for everyone going through this. Sending love to you all x

wait = weight. How bizarre to get that wrong when our whole lives for 2 years have revolved around weight.

@BagpussSaggyOldClothCat I got a lump in my throat reading that, your daughter is hopefully 'standing up' to the ed I wonder by saying I'm still hungry if it was telling her to stop.
Regarding the clothes I would order size 6 & 8 and tell her it was selling out super fast (you know similar to how jd sports tell you 24 we're bought in the last 6 hrs!) and you didn't want her to miss out so there are various sizes let's see what feels more comfortable?! Others with more experience may have a different view. I can't wait for my son's clothes to fit again, then being so baggy make him look so small

@BagpussSaggyOldClothCat Agree with Prosecco. I would buy both 6 & 8 too. What a lovely moment at the dinner table that must have been for you. Thank you for sharing x

Thanks both of you. I'll order some different sizes.

Yes it's been so good to hear her say that she feels hungry and reach out for reassurance. We still have a long way to go to get her anywhere near free eating. She was looking longingly at a box of jaffa cakes the other day and I said 'would you like one?' and she said 'yes but I can't have one'. I said 'that's sad isn't it?' and she nodded. Even though she didn't eat one it feels like progress to be able to talk about her ED out loud.

She's been needing a lot of affection lately and seems to actually enjoy my company. We have bonded over Big Brother and Married at first sight. She has come out with some great opinions which is quite fascinating to witness as its been a long time without her showing emotion or empathy towards anyone.

This time last year I despaired we'd ever have a good relationship. She HATED me and to be honest I didn't like her very much either. I wish I could relax a bit but it's hard to not worry as recovery from this illness is incredibly fragile.

Aww Bagpuss I'm so glad you're seeing those glimpses of your dd coming back to you 🥰 personally I'd just order the size 8 and tell her the size 6 has sold out. I'd also remind her that it's completely normal to gain weight/go up a dress size as she recovers and even without an ED it is normal for teens to grow.

Roui absolutely outrageous treatment towards you son.

Unfortunately you have to fight for support - my son started with anxiety at @ age 14/15 and later became extremely underweight - your son's symptoms sound like my ds even a few months ago, before he started to regain weight.

I absolutely insisted that he was seen by the ED team and my DH and I would not take no for an answer. He didn't have anorexia but if things hadn't turned around that's prob where he was heading.

I agree with the others - please take him to A&E, for his own safety and also to show that things are out of control and that he (and you) need immediate intervention.

Sorry, meant to say 'he needs immediate intervention and you need support'.

Thank you for all the advice many of you have offered.
I spoke to my mum who then spoke to her partner who works in theatres at a private hospital, he asked one of the cardiologists and they said the long QT could be a few things but definitely needs to be reviewed by a cardiologist! He’s said phone the GP so I might do that in the morning.

Today he’s done better… he’s kept a food diary, only had a drink and a tiny piece of chocolate right up until 7pm tonight when we had chicken wraps and some chips and he ate the lot and then a peanut butter Kit Kat chunky.
that’s a great day for him!

He’s asked if we can get a pizza and watch a film together on Saturday night, I said yes as long as he eats the next day too and don’t starve yourself because you ate pizza the day before and he said “yeah that’s annoying you know I do that now!”

I think I am going to put my concerns into an email and send it to the team that assessed him. I work in a Primary mental health service and my colleagues are appalled by the way CAMHS have been. I will go to PALS if I have to.

Roui eating next to nothing all day and then eating quite a lot at dinner time is what my dd was doing. This is still anorexia and it is no where near enough food.

It's absolutely imperative your Ds eats three meals and three snacks a day as the going too long between food allows space for the anorexia to grow.

Start reading everything you can around FBT (family based treatment) this is where you take over all the food related decisions and your ds has to eat what you give him.

The lack of care the ED team have given is shocking and I still feel your son should be in hospital to start the refeeding process. Refeeding syndrome can be fatal so he should be closely monitored while his calorie intake increases.

It is easy to fall into denial 'well he's eaten a bit more today so maybe he'll turn a corner' and I was definitely guilty of minimising how ill my dd was until the ED team spelled it out.

Anorexia has the highest mortality of any mental illness and the rates are similar to childhood leukaemia for kids. It's v v serious and kids tend to compensate right up until they go into heart failure.

I'm not trying to scare you but you do need to understand how ill your Ds is.

@Roui my DD also restricted her eating to night time eventually becoming so unwell that we took her to A&E. She also had an abnormal ECG and bloods, all typical of severe malnutrition. Please do as @Girliefriendlikespuppies suggests. Her advice and that given by others here has been so helpful to me. The earlier you can turn this around the better the outcome for your DS. Be prepared though as we have had to fight for help even when she was so ill. In desperation I asked a therapist if they were waiting for her to collapse and be taken to hospital as an emergency and she said most likely. That was a risk I was not prepared to take. Please take refeeding seriously, my DD had daily blood tests at that stage. Thinking of you

Wanted to come in and post that DD has been setting herself some challenges around food (eating in front of others/eating out etc) so this feels like a positive shift for us. Unfortunately she went w a friend to co op at lunch yesterday (they are 6th form) and friend started breaking down all the calorie content. DD said she just froze, couldn't speak after that, was a struggle to eat lunch but says she did. She thought about telling this friend about her AN but didn't. Went and found a friend who does know and got kind hugs. The fact DD shared all this is massive as she has not been forthcoming around talking about the ED at all in the past. She says she notices other girls skipping lunch and that's really difficult when she needs to eat hers. I just kept acknowleding how hard this is and that she's doing so well. Is there more I need to say?

I found the idea of saying sizes were out of stock a really good one.
Sadly CAHMS seems like a hot mess. Our experience w them was horrendous. I have struggled to get past it and move on...they are stretched so thin it's terrifying how ill a child needs to be to get attention for any mental health issues

ReineDeSaba

I think what you said is perfect. Better to gently support and guide side by side than to overwhelm her working through recovery. I've learned the hard way that jumping on a small positive change and pushing for more can force a sufferer backwards again.

I wish food didn't have cals on the front and the traffic light system is horrific for ED sufferers. Small print on the back would suffice. My dd is an expert at scanning a shelf and finding the lowest cal item. A lot of teens seem to be in competition to eat the least. Scary.

Thank you @BagpussSaggyOldClothCat it's just so frightening that there are so many external factors as well as DDs internal ED pushing unhealthy and obsessive ideas and I cant change that...

Well just a bit of an update… tried to call GP couldn’t get passed the receptionist. Will try again in the morning.

Stupidly thought we were making progress as he ate much better for two days. But today it’s almost 7pm and we are about to eat tea (late as partner works till this time) and it’s his first thing of the day, other than 1lt of water.

they say to do the 3 meals three snacks but I work 9-5 and he’s in college 3 days so it’s really hard to be there to make that happen. Contemplating taking a week or two out just to get this established….
how have you managed this with working/school etc

he’s got a slight arrhythmia too today… I feel it’s too much to take him to a&e as he seems well in himself. I feel bad saying that

He shouldn't be at college @Roui He just doesn't sound well enough to be expending that energy and it will be impossible to keep the meal plan going there. My DD really wanted to go back to do A levels and that is part of what has eventually helped her stick to the plan. I had to sleep on her floor, follow her around 24 hrs a day for a month in the early days (to prevent food hiding, sneaky exercise and self harm) but I was able to take time away from work and also I work from home.I'm sorry I dont know enough about the medical stuff but everyone here is so clued up so can advise you better around a and e.

@Roui how do you know he has a mild arrhythmia? Unfortunately deterioration can happen quickly in people with Ed, so appearing well isn't an indication that they are well or the risk is low. The MEED guidance from royal college of psychiatry is here www.rcpsych.ac.uk/improving-care/campaigning-for-better-mental-health-policy/college-reports/2022-college-reports/cr233

I was signed off work for a few weeks, and my dd was absent from school while we established 3+3. It was extremely hard going, and I sort of learned than once you start challenging the Ed it comes out fighting.

If your ds has only had a litre of water all day and then an evening meal for a few days then this is very risky. The GP receptionist isn't qualified to make a decision about this.

I would really take him to a&e. They can be very unwell and appear fine. When DD was admitted to HDU, she was walking around, screaming, shouting and kicking. She didn't, on the surface, appear ill at all. Once we arrived, the doctors placed her into hdu and told me how serious it actually was. Please take him tonight @Roui.

If he is not eating during the day, he cannot go to school or college. My DD was in hospital for almost a month and then at home for most of the summer term. I muddled through with WFH. Some parents get signed of sick (stress). Annual leave. No that my DD is in school and once she managed 3 meals and 3 snacks, she has been able to go back as school provide meal support. But that is something for when eating is established and it took us a long time.

How do you know he has arrhythmia?

I would just set off and go to hospital.