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

@nobodygoesdowninthejungle I am so pleased that I was able to help in a small way, and so happy for you that your DD seems to be coming out the other side. Wishing her (and you!) all the best for the future xx

Hi nobodygoesdowninthejungle

So pleased we could help and that things with your dd are much better now.

Hi,
For those in the eye of the storm, am so sorry - it is such an awful disease and one that I don't think the wider populace really has any idea about. I think they know the surface level of "anorexia" or "bulimia" and probably next to nothing about arfid. What isn't visible or understood is the day to day grind of supporting someone with an eating disorder, nor the devastating impact on their lives - I'll hold my hands up to say I was clueless beforehand.

We're ok - we don't have the food battles or the self harm or the pain in the way we did but anorexia still remains part of our every day life. There are some stats (that I can't remember) about ED recovery and it is something like x% flip a switch and recover, 20% never recover, x% have an elongated recovery - I think we're in the latter category. Still tough in some ways and definitely a different life from the norm but nothing like as awful as the intensity of those weeks/months/years where it is all consuming.

I also wanted to say, a few of us are going to the Eating Disorder March on the 20th May in London organised by Hope Virgo https://www.eventbrite.co.uk/e/join-us-to-march-and-fight-for-those-affected-by-eating-disorders-tickets-526987151757

If anyone else would like to join us please do sign up and we can add you to the WhatsApp group. I do understand though that for some people this won't be possible and/or it will be too triggering - if thats you, then a) we'll be thinking of you when we march and b) if you're able to, please do promote the march on your social media - again, happy to supply links for material etc.

Good call, Myrtle! I'm going. If you don't already, I'd also suggest following Hope Virgo on social media. Always gives me hope!

@myrtleWilson good luck to you all doing that march. I'm too far away but will be thinking of you.

Does anyone have any more positive experience of inpatient treatment?

DD has been in hospital 10 weeks now and I’m struggling. Am getting the feeling that whilst the admission can tick the box of weight restoration there’s not yet any evidence of change in her thinking. Still needing to resort to frequent NG. How does this end? I feel so anxious.

I know I should be using the time she’s in hospital to gather up some energy but I’m so preoccupied all the time it’s hard to find motivation to do anything other essentials of work/ visiting DD / minimal housework etc.
Doesn’t help that sleep is terrible. I just can’t switch off from worrying about her.

Hi Frankie291

My dd has been ill 18 months and hasn't been an impatient so I cant help with that, but she's still very ill mentally despite a good weight gain and eating fairly well, although it's still a battle some days.

The brain takes a long time to recover and I'm waiting for that magic moment when she is recovered enough mentally to engage with therapy. Bizarrely she was much happier and open to talking about her illness and being reasonable about recovery when she was at her lowest weight.

I'm sorry you're feeling so anxious and not sleeping. Have you seen your gp for your own mental health? Many of us end up needing meds and counselling while supporting a child with ED.

I've managed to train myself to switch off in the evenings and relax with tv or movies or books or I go for walks. It's taken me a long time to get to this point but I do feel better for it and better sleep lessens the anxiety during the day when issues crop up.

@BagpussSaggyOldClothCat

Thank you for your post. It does help knowing there are other people out there who understand. I have lovely friends and work colleagues but it’s so hard to explain to people and I’ve got to the stage where I don’t really want to talk about it any more.

I’m glad your daughter is eating better. The worry of their distorted thinking is overwhelming isn’t it. I still feel shocked by some of things my daughter believes.

DD was also in some ways easier to talk to almost seemed more engaged at very low weight. I think she felt she was “winning” when not eating so was more open to talking.
Now it’s like a shutter goes down if you try to talk to her.

I have spoken to GP and been prescribed Sertraline but haven’t noticed much change yet. Maybe too soon to notice.

Thank you again and best wishes to your daughter

Looking at the evidence of the success of FBT, although knowing not every sufferer is the same.

Reading it says 2/3 are weight recovered at the end of treatment and that 75-90% are fully weight recovered at a five year follow up. Is the second figure 75-90% weight recovered based on the 2/3 recovered or is that figure based on all those who originally undertook FBT, not only the 2/3 initially weight recovered?

Rightly or wrongly I look for hope for DD in these evidence based outcomes.

Sorry @Frankie291 that you are struggling. No experience of inpatient treatment either.

Same here though. I was looking back at some photos of our summer holiday last year and DD is so painfully thin. But it was before diagnosis and she was happy and joined in with the family. I suppose because she was doing everything in secret. Now she weighs more, although still underweight, and is miserable most of the time, doesn’t want to engage at all etc 🙁.

I keep on reading articles about “like flipping a switch” but just can’t see how that happens.

hi everyone, my first post here. I have a 12 year old with anorexia nervosa, diagnosed 6 months ago. We are having weekly FBT, weighing in etc. It was going ok and we slowly gained some weight but something happend and in the last 2 weeks things started to go downhill very fast. Food intake is now extremely restricted - much more than a fortnight ago.

Is this normal as part of recovery? I am just so stressed and worried for my daughter. It all seems to go downhill fast. We are currently 85%wfh but dropping between 0.5 and 1kg per week.

Also, Sertraline has been mentioned to us. Has anyone found this useful?

Hi @Curlyhairedassasin and sorry you have found yourself here...
I think its safe to say recovery is never linear. So setbacks are to be expected.
What has happened is the ED voice has asserted itself. And gained back control of your DD. Is she blind weighed? That may help if not.
I assume you have a meal plan? I am afraid it's back to total control of meals and snacks and close supervision to ensure all food eaten. Lots of distraction at meals and compassion/ encouragement. Compassion yes. Food eaten though. I also added hidden calories and do not regret that at all.
It's so hard and you will be very worried but keep pushing in the food. Expect and almost welcome distress as that is the ED being challenged which is what needs to happen. Look up distress tolerance as it was the single best skill I learnt.
Keep reminding yourself that however distressed your DD gets you are doing the right thing. Food is what she needs.
younger sufferers can have a very good prognosis if they recover relatively quickly (it took my DD 12m to weight restore and another to shed the thoughts and behaviours)

No experience of Setraline (but others have) but my DD (12/13 when ill) found olanzapine helped dull the voice a little. It's an antipsychotic used in low doses for EDs for the short term. Takes immediate effect. Antidepressants take longer to kick in.
Please stay on here for help and advice. I don't come on often now but my experience is with younger sufferers so wanted to add my but! Others will also have great advice.

Thank you so much for taking time to reply.

Yes, we weight her blind. And yes, we have a mealplan but she absolutely will not eat. It is impossible. Doesn't matter how encouraging, supportive etc we are. she just sits at the table and is shaking and telling us she is rather dead than fat. I feel utterly helpless.

How bad is 85%wfh? she looks so painfully thin.

Hi Curlyhairedassasin

Welcome and I'm sorry to hear anout your dd. It sounds like the weight gain is causing her to want to restrict again.

Lottsbiffandsmudge has given great advice. Weight loss means you need to take control and make sure she's having 3 meals and 3 snacks.

Some don't agree with adding fats but I feel it's helped save my dd. The brain needs animal fats. Double cream, butter and ground almonds are always on my shopping list.

My dd has always been blind weighed and weight isn't mentioned at appointments as it can cause a relapse. I call or email later if I feel I need to know. We don't have scales in the house.

My dd hasn't had meds but I feel we are having some success with B vitamins.

Curlyhairedassasin

Eva musby's videos might help with ways of getting her to eat if you haven't discovered her already. She's very calming and talks a lot about compassion and empathy, which I certainly didnt have a lot of in the beginning. I was just furious with dd which was making it worse. Connecting with dd was a turning point. Her book is very good also. There's also the Beat helpline for advice.

My dd needs the distraction of TV to help her to eat. We often take lunch and go for a drive and she eats in the car sitting in the back. Liquid calories such as smoothies can be easier for them. Fortisip can be prescribed if she would drink those.

If she doesn't eat at all the advice is to take her to A&E. Pack up her food and take it with you. The threat of this has been enough to get my dd to eat, but I know that many on this thread have ended up in A&E and hopefully they'll come along and let you know how that worked out for them.

She will not eat anything fatty. no milk, no shakes, non butter. She is refusing to eat anything home cocked for fear of hidden fats. It is right now impossible to get her to eat apart from some dry bread or cucumber. She is pretty much hyperventilating when we put a plate of food in front of her.

I will check the videos. Thank you.

OK so here's what I would do (apologies if you have already done so)
Sit her down outside of a meal/ snack time
Explain calmly that this meal plan has been medically prescribed and is essential to keep her safe.
Say that as her mother you have to ensure she eats the food on the plan to keep her safe. Explain that you have no choice in this, as her parent it is your duty to make sure she takes her medicine (the food) to help her get stronger.
Let her know that you can see how hard it is for her. But that still you will not rest until she has eaten her plan.
Say 'I can see its really hard and I am sorry its so hard for you' but that the food you have prepared is safe and what she needs right now. She cannot dictate what is served.
Tell her that you know she can't do this on her own as the ED voice is too strong but that you are here to do it with her. And that you will always be.
My DD now says the only reason she ate was because I gave her the excuse with her ED voice. That is she was able to say to it (often literally) 'I had to eat mum made me' it still caused enormous distress. When she was hysterical or angry or smashing stuff I sat with her, held her when she let me and just waited it out. Saying periodically ' I am sorry things so hard for you'. And nothing else. This is the basis of distress tolerance. Remaining calm and loving (I often failed!)
Get away from the table. Eat in front of TV, find a series to watch together (I can recommend Anne with an E!) or play games, do puzzles whatever to distract.
If she doesn't eat the plan you say she will have to go to A&E. And follow through.
If she has only eaten dry bread and cucumber for a day or more take her to A&E anyway.
If you already have CAMHS support I would also try to get in touch with them ASAP.
85% is v low. Its about the level most are allowed back to school with no activity. She will look thin and her brain is so starved of nutrition she is not capable of rational thought. Dont try to rationalise with her just repeat the mantra.
I am sorry this is hard. But this plan is what you need and is safe. I will keep you safe. I love you.
Once food is done lots of distraction activity.
Hope this helps.

Thank you!

Welcome @Curlyhairedassasin - although sorry you need to be here. You've had some great advice so I won't repeat that but I'll also just add/ask how are you?

Parenting/caring for a child/young person with an eating disorder is bewildering, isolating and beyond scary. I hope you're feeling supported in real life and we can support you too.

One of my oft repeated gripes on here is there just isn't enough thought given to the needs of the family (oh how I laugh now at my naive thoughts that FBT would be about supporting the family!!) So please do use the thread to offload too...

@Curlyhairedassasin i echo the others. I'm the midst of things this thread truly lifeline. You will get through it.

*In

Is violence something which is normal as part of an ED?

When we sit down with her and try to be supportive and calm but taking control of the eating, she becomes incredibly violent. She kicks, bites (to the point where I bruise badly, she pulls my hair so hard that I have to get onto my knees and then she kicks my head). If it was a stranger on the road, I would call the police and report it as assault. These assaults happen several times a day.

So I wondered if that level of violence is normal as part of the eating battle. And how do other parents deal with it?

Thank you for your lovely welcome. I am holding it together but it is very very hard. also for us as a family - DH and I are on each others throats non stop because of the level of stress (which is so not helpful in the situation). I have another child (teenager) with very complex special needs who cannot be left unsupervised at all. No support in terms of respite. No other family to help at all. I am trying to hold down a 5 day/week job etc. I do what I usually do in these situations: going on autopilot. Parenting a child with very complex needs made me very resilient in a way. Don't know if that makes sense. I don't actually know how I am.

Curlyhaired welcome to the thread although sorry you are here.

Your situation sounds very hard, it's hard enough with just one unwell child let alone trying to manage another with complex needs.

If your dd is physically assaulting you then do call the police, I would draw a line at that behaviour and it will send a strong message to the ED that you will tolerate being assaulted.

Your dd is going straight into fight and flight mode as her anxiety is so high which explains the behaviour but doesn't mean you have to put up with it.

Having police involvement may also result in you getting more support.

You've had excellent advice from lots already, food has to be non negotiable and do not go down the route of enabling the ED by giving your dd low fat/low calorie foods because you think that will be easier and she may eat it. The result will be a longer recovery.

You make the decision about what food to give her based on what you know she likes and what you can cram the most fats and calories into. If she's going to have a meltdown over food make the food count!

There are two ways to approach food refusal,

1. Life stops until they eat and you wait it out, the food goes down and they will not leave the table until it's eaten. The food must go in, so be vigilant for hiding food, throwing food, pouching food in her cheeks etc.

I suspect this will not be sustainable if you have another child to manage as well.

1. You set a timer for the meal or snack to be completed of around 30 mins.

If the food is not eaten in this time you offer a higher calorie supplement drink. If this is not drunk you put them in the car and drive them to a&e with the food on their lap.

See it through and make sure they get a thorough check in a&e and are not allowed to leave until they eat.

Both options are not perfect but will work eventually. If they won't eat in a&e then request admission as they may need an ng feed.