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!

@Lottsbiffandsmudge 😂 thank you, that sounds like something I could imagine myself doing... I can almost hear the satisfying hammer noises. It's so interesting how many of the same things I've done to try and be 'supportive' before I realised it was Ed becoming more and more established. I had a Fitbit in my online basket for her, had signed my dd up for parkrun, was ferrying her to the gym multiple times a week accompanied by wittering on about the importance to women's hormones of building muscle, and was researching and making all sorts of veggie and 'healthy' recipes!!! So stooopid...

Thanks too for the support @myrtleWilson and @Girliefriendlikespuppies. This whole thing is just so mind bogglingly weird and it's taking some time to get into our stride. Sure we will though.

Things are a bit better today. I told my dd last night how very sorry I was about what happened, and that I love her very very much and will never give up on her, no matter what. It didn't get an response, but glad to have said it. She's eaten everything I've put in front of her today, no attempts to leave crumbs of things so I'm taking that as a win. Not much eye contact, or any other interaction but hey ho.

The assessment letter from the consultant psychiatrist arrived today, confirming the AN diagnosis, and that FBT is the right approach, and what we are waiting for. I feel really quite validated by it, and I feel like it's given me a bit of strength to keep going.

Thanks everyone. So so glad to have you there understanding.

Sorry, Lotts - I actually snorted in laughter visualising Garmin-gate. Not in any way to down play the intensity and stress of the moment but it reminded me of the "Record Scratch:Freeze Frame 'Yup, that's me and you're probably wondering how I ended up in this situation" meme - the utter ridiculousness of it all just surfaces every now and then

Lots** my dd also had one of those fucking watches and I deliberately broke the charger for it 🙈😂 she went crazy when she realised and had an almighty melt down but I had zero regrets!!

I used to find that the day after a huge blow up like that generally would be more peaceful, it's like the calm after a storm.

Hi my ds,18, has disordered eating (due to ocd/anxiety) and we have had an initial assessment at an ED adults clinic.

His bmi is 15.7 and we have been told that even if he gets accepted, he would be on amber and there is a huge waiting list - he would get a phone call every 6-8 weeks while waiting.

To say I'm horrified is an understatement.

How low does a bmi need to be put on red?

Thank you in advance.

Hi mirabellablue

So sorry you are going through this with your ds. A call every 6-8 weeks for young person struggling with this illness is shocking. His weight is very low and he's at risk of becoming seriously ill. Is he being seen anywhere to get regular physical observations? Have you been sent a meal plan to get started on?
How much and what is he eating and is he exercising, going to college etc?

Sorry for all the questions. I know how overwhelming it is.

The Beat website has resources and their helpline is excellent. If you're worried about his physical health at all please don't hesitate to take him to A&E.

Thank you for your reply.

He's been underweight for about a year - he's always been tall & skinny (but always ate loads), runs in the family, but when his ocd/anxiety really took off he lost weight due to it all.

He's not anorexic/bulimic (not intentional weight loss, no body image issues, except he knows he's too thin).

He likes food and would like to eat more but has no appetite due to always feeling anxious.

He over exercises to cope with the anxiety but is clearly burning far more calories than he consumes. Worries about feeling full and then not being able to exercise properly.

Eats lots of butter, peanut butter, cream, chocolate, fruit, veg, - no actual fear foods but has really cut down on carbs, cakes, biscuits, doesn't eat crisps etc.

Is at school and very bright - on track to do well but we shall see.

He's just started anti-depressants, low dose & will increase, and has been having therapy.

But it's the low weight I'm really worried about and it looks like no one is going to help him. Bloods from gp have already shown very low hormone levels.

I've been fighting for support for him for so long - everything we've accessed so far has been private/health insurance. Which we are exceptionally lucky to have had.

He will never put on the required weight without support. But he feels fine, exercises without trouble and has been functioning like this for a year. So I'm at a loss.

@mirabelle that is very poor indeed. Can you liase with your G.P to advocate for him. Is it because they are leaning into the anxiety and OCD. Every 2 months seems like a terrible idea...w such low weight you need someone to guide you properly w refeeding. Low weight also will be likely to be creating even more MH issues

@mirabelle I cross posted. Exercise needs to go as it sounds like he is preoccupied around it and it does sound like fear foods are developing. I let my DD exercise for much longer than I should have because I thought she would crash mentally...now I feel terrible that the ED was still pushing her to do it and achieve it even though she was actually incredibly unwell

Yes I agree with everything you've said.

Yes it's because it's anxiety based and not body image based/not deliberately trying to lose weight. But the outcome is the same!

@mirabelle that is such narrow thinking. They need to open their eyes. You are doing a great job fighting for your boy. I hope you can get some weekly support through your GP

Thank you.

I've been fighting for so long, I'm exhausted. As are all of you.

I wish I had a crystal ball to say that everything will be alright in the end.

@mirabellablue are you aware of any local charities offering support to people with disordered or distressed eating - I know one based here in the NE but I'm sure they'll be others? The one I'm aware of provide counselling support so may be an option if there is one similar to you locally?

Thank you. Yes he's already having therapy.

I believe he needs an experienced dietician/nutritionist who can work with him on a regular and committed basis to turn around his eating habits.

mirabellablue

Maybe the GP could refer you to a dietitian if you feel he'd engage even as a one off appointment to give it a try. Often it's all about finding the right person that they click with and you're off!

My dd, nearly 18, had a year with camhs and tbh it wasn't that helpful as she wouldn't engage. She would gave her obs done and leave the building. However they were excellent liaising with school/college to get her support there.

We are now going it alone and dd has improved a lot since discharge. She's weight restored and still gaining - although she still has issues with fear foods, eating out etc.

It's a club no one wants to join but you'll find endless help and support here. There are also a few Facebook groups you could look at joining.

Sending you love and strength x

@mirabellablue hi, I'm new here and still trying to get to the bottom of what is going on with my ds. He's 10 and they're saying because he hasn't got any body issues they don't believe it's an eating disorder and they are saying it's anxiety around food. His list of fear food is getting bigger and he's struggling to eat good portion sizes. Similar to you we are at the back of the queue for support (I appreciate ed need to be higher up, but he spent 6 days in hospital due to his poor weight which still hasn't gone up yet, weigh day tomorrow 😔) we have therapy lined up for next week but today he had his first hypnosis session and is in a much better place mentally, he seems so much calmer and snacks are normally such a battle (very early days) but today he's just picked them up and got on with it. I appreciate it's not for everyone but maybe worth while looking into or considering. Sending you a virtual hug as this is so so hard

Hi yes I've been (quietly, not creepily!) following your story. It actually helped me to write my own and ask for advice.

I have thought about hypnosis ... not sure where to look though?

Also my ds knows exactly where his anxiety started and has already done a lot of self analysis/reflection, which is why we had to go down the medication route. Which I'm hoping will calm his mind so that in turn he won't feel the need to over exercise/overthink food.

Glad it has helped your son - he's much younger so hopefully more easy to treat/turn around.

@mirabellablue not creepy at all! Pleased it helped you. I found ours on here www.hypnotherapy-directory.org.uk/?gad=1&gclid=EAIaIQobChMI6a7oodq5gQMVGNbtCh17FQ3vEAAYASAAEgK0xvD_BwE
We're in the north east and I filtered down to child therapist and reviews, the one I found specifically deals with eating disorders and used to do therapy within the nhs, she's a mam too and has a child the same age so appreciates our worries. He does show a lot of an traits and behaviour and I feel we could take either path at the moment. Such a scary minefield

I'll take a look, thank you very much.

I'm consumed by thinking about it all.

Hi all, haven't been posting much but have been reading and rooting for everyone. I'm just finding the daily slog of keeping everything going so tiring.

Anyway, D14 with atypical AN has been steadily losing since June.

I can't work out how. Im getting c. 3000 calories into her each day, including an entire 270ml tub of double cream (she has 3 homemade smoothies a day).

There have been some incidents of purging but im as sure as I can be that this hasn't happened recently.

Is it possible to still lose on so many calories? The only thing I can think is she may be purging after lunch in the school toilets (she eats in the car with me but is very keen to get into school and back to her friends as quickly as possible).

Im not sure how to address this as she's swearing blind that's not happening (I know this doesn't mean it isn't!). Any advice? Do I just add in more and more calories?

LittlePickleHead any chance she could have got hold of laxatives? My dd ordered them from amazon. I have to regularly check her room when she's been out shopping with friends but she could hide them anywhere :( . She's never purged so I don't have much experience with that.

Get them off social media

Little would hyper metabolism be a possibility? If so she's need a lot more calories, for some kids it's around 10 000 a day to start gaining.

Mirabel the lack of support for over 18s is terrifying. The anxiety and desire to exercise will be linked to his low weight. If he's motivated the Tabitha Farrah books about how the body reacts to weight loss/being a low weight might motivate him to really push through on eating more. Again he will need a massive amount of calories to start feeling better.

Dd and I have had a stressful day, so tired of having the same arguments and worries.

I don't think so re: laxatives (I monitor toilet and I assume if she was having loose stools I would know!) if anything she suffers more from constipations. I will check her Amazon account though as she has ordered things I'm unaware of before (tattoo kit anyone....)

I don't really understand how she would have hypermetabolism? She never really got to a very low weight and prior to June was gaining ok, having periods etc. i assume the hypermetabolism would be a response to a long period of being very underweight?

I am mor I'll inclined to thing something else is going on, she's so sneaky and an excellent liar. But on over 3000 calories a day whatever is happening must be quite extreme?

I hate how I just can't trust her at all, as she swears blind to my face she's no idea why she's losing

Hi, I’m new here 👋🏻, and new to the whole world of ED’s.
DD14 has recently been diagnosed with AN. I noticed in April that she was eating more “healthy”, and cutting out crisps/chocolate etc. In June, after losing around half a stone, I took her to the GP who said she didn’t meet the threshold for a CAMHS referral.
4 weeks later, after losing more weight I took her back to a different GP who referred her. On her first assessment, she was admitted onto paediatric ward due to low blood pressure and WFH 63%. She had 2 weeks refeeding and has been sent home.
We have good days and bad days. She is visited by the crisis team twice a week, therapy every week and physical health check and bloods weekly too. A target of 0.5-1kg a week, and if not met she will be referred for inpatient admission. She is still around 66% wfh.
Whilst she wants to get better, she is petrified of gaining weight so is in so much conflict. It’s so heartbreaking to see her go through this. Following this thread for advice/tips to get us through this awful illness

LittlePickleHead

It does seem very strange. At 3000 cals she should be at least maintaining. Could she be secretly exercising?

Welcome lexilou985

So sorry you find yourself here. Your dds story sounds very typical of a lot of our dc here so you're in the right place for support and advice. Is she being blind weighed? My dds weight was never referred to in appointments and if I wanted to know I would request by email after the appointment.