Support thread 12 for parents of young people with an eating disorder

[greydoor]

Suddenly noticed the old thread is almost full and thought I'd make a new one.

I am worried about my grandchild who as stopped eating because she says she is fat nan

I'm worried about my grandchild she has stopped eating nan

Magicmoment

So sorry to hear that. How long has this been going on? How much is she managing to eat?

The first step is to make a GP appointment to check how she is physically. The GP can refer her to the Eating Disorder service.

The posters on this thread have lots of experience of Eating Disorders at all stages so I hope we can help x

Is anyone else dreading the school holidays? The time dd is at school gives me some time to nap or decompress and I just feel overwhelmed to be on guard/watch 24/7

@Cantfindthewordsddstruggling yes! Half term being a week seemed manageable but two I'm just worried how I'll keep going without the breaks school gives. Constant clock watching for the next meal/snack.

After doing so well and my DD really is
She's just told me she's self harmed again 😩
Hasn't for ages and she told me, showed me and I just feel deflated
We've been together all weekend and I really thought she was on the up
She says she feels low and used a nail file
So have now said anything like that has to be locked away
It used to be razors and candle lighters
I suppose as she's saying she may be feeling fuller
She is still managing her meal plan and more and around 2,800 c a day and her mood seems bright
But inside she's struggling

Sorry to hear that @summertimessadness24 , sadly if you hide the obvious stuff, she will find more inventive ways to hurt herself. Has she had interventions about it? There are techniques that are less harmful, like holding ice/snapping a rubber band on her skin etc, that might help. (Easier said than done, I know, I had to get rid of my razors a couple of weeks ago when DD discovered a safety blade isn’t all that safe 😔)

We've started FBT but no help with self harm at all so I've emailed the clinic and CAMHs who seemed to have disappeared and until
Now I've really had to shout scream and beg for help so hoping she gets something more than weekly FBT - she's feeling very low and wants to self harm despite being able to eat her meal plan ( 3,100 total calories today ) so I've told her she's been very brave for talking to me tonight and despite how hard it is and the feelings she has that she's doing amazing
She's in better spirits and keeps apologising which I've told her she no way has to say sorry!

@Proseccoismyfriend yes absolutely. It’s a pretty sorry state of affairs when you are looking forward to the holidays being over before they have even started!

we don’t count calories we just have expectations for how much of each food type we have for each meal and what constitutes a serving. We also have info about what counts as a snack for dd. Snacks are the worst with having to find six things each day(2 items for each snack). Yoghurt and milk make up a fair chunk.
We are potentially looking at reducing DD’s intake in a few weeks as her weight is at the upper end of where it needs to be possibly a little over. It just feels like this constant tightrope that I’m walking judging how much I’m giving for each meal and snack.
Dd is going out with friends and having lunch at a friend’s house tomorrow so I’m not going to have any idea about how much has actually been consumed which is a worry. But I’ve been told how important it is for dd to spend time with friend’s so I just need to go with the flow

My 15 yo dd has developed what I believe to be a trauma based ED. She went veggie about 6 months ago leading her to not want school food but not want to take food. Breakfast of a pain au chocolat became an apple, break time snack dropped and a packet of crisps became lunch. I tried not to worry because she had wholesome snacks right after school and dinner on top, albeit not ideal. She was a little overweight and slowly losing weight. The same thing happened to me at her age so I had a frame of reference. Then the snacks plus dinner became either or. Then we went to A&E almost 2 weeks ago and she’s all but stopped eating.

Dd has a seizure condition, it is physical as her heart stops beating. But it’s brought on by extreme stress, especially anything medical. Predictably, she had a seizure in A&E. It’s rare this condition continues past young childhood so none of the staff knows how to deal with it. The whole experience was extremely traumatic for her and she’s incredibly upset. Losing her appetite is normal with the seizures and can take anything from hours to several days to recover from. But this is something else. She didn’t eat 3 non consecutive days at all and very little on other days.

I spoke to BEATS yesterday and got lots of advise including not pushing her for counselling yet as she’s not ready but to get support myself. Dd went to a party on Saturday evening. I didn’t want her to go on an empty stomach but she assured me there was food at the party. She came back and was so odd, like she was drunk. She didn’t drink and her friends, who stayed over confirmed it. We all sat and chatted the night away and she finally broke down about the A&E experience.

I called 111 they weren’t overly concerned as she appears physically normal. I’m going to speak to a GP rather than take her as she’s very likely to have a seizure, which will set her back further. I’ve bought and read a couple of chapters of the Eva Musby book on kindle.

Dd managed to eat twice yesterday with me there with her. I’m going to start the re feeding programme today. Slowly.

Sorry it’s long, I just can’t face making my own thread. I am really appreciative of finding this support. And big hugs to everyone and their families going through this awould experience.

Found you all, I kept thinking the old thread was just really quiet 🤦‍♀️

Summer nausea when the calories start going in is normal, my dd said the same but afaik was never actually sick. It is also sadly normal for self harming to increase when the weight starts to go back on. I didn't have much patience with the self harm tbh which is probably the wrong response! It has stopped though as the weight and food side of things have stabilised.

Mummy your story of how the ED started will be very familiar to a lot of us on here. Going veggie can very often trigger anorexia and there is some recent evidence to show a link between them. Anorexia is very much a biological illness triggered by low calorie intake and weight loss and the only way to turn it around is to get the food in again.

The way to do this is by insisting they eat 3 meals and 3 snacks a day. I would say they aren't well enough to be vegetarian so that needs to be challenged with them. With family based treatment you make all the food related decisions, you prepare the food and you give it to them with the expectation it is eaten.

Has your dd been referred to the ED Camhs service now? Did a&e check her bloods, bp, do an ecg? Given her epilepsy the physical side of things will need to be even more carefully monitored.

Girlie
Thank you for responding. Dd hasn’t been referred as yet, no. I only really started to piece things together on Friday. Then dd confirmed it when she came home from a party and we were talking to gone 3 Saturday morning.

I know about the feeding. I’ve read chapter 6 and 7 of the book. Crikey the vegetarian bit is going to be challenging. And thanks for the information.

She doesn’t have epilepsy. She has reflex anoxic seizures. So an overload of the vagal nerve, which regulates the heart. This stops, stops the heart momentarily (or to an imperceptibly slow rate) then restarts.

She was at hospital for a broken toe. Not ED. The hospital did nothing because dd will not consent. It’s part of RAS and very common. Another child has it at her school and having spoken with the mother, both children’s symptoms and triggers are identical. If I take her to anywhere medical she will have another seizure, which will set her back further.

My aim is to get therapy to hopefully reverse not just the ED but to give dd the tools to cope with any hospital treatment of any sort at a later date. The therapy was always my intention btw but it’s more urgent now. I also need to get her through GCSES… there’s a lot going on.

Short term, I’m looking to feed dd much as you’ve stated and avoid needing medical intervention. The GP knows visits will potentially trigger a seizure as dd had one there a few months ago. So I’m hoping to talk over the phone rather than go there. Idk if that will be possible for a referral.

A blood pressure cuff will instigate a seizure. She will not consent to needles. Doctors won’t do anything unless she consents especially when unconscious. To put this into perspective, I have had 3 major surgeries starting about 6 years ago and dd ended up having seizures whilst in hospital during 2 of those.

What complicates matters is my ability to cope with this due to my poor health. I have chronic fatigue and fibromyalgia… and a dh, who has to go to work this week.

Hi @Mummyoflittledragon - welcome and sorry to hear how complex things are. This is a lot of things happening at once.

We realised my dd had AN late summer last year, but looking back it had been around for at least 6 months. I like this diagram for understanding how anorexia starts and is maintained. Once the switch has been flipped it doesn't really matter what caused it, and treatment at least in the first part is centred around 'refeeding'. Therapy is usually reserved for later on, and the reason is that a brain which has been affected by the starvation period of anorexia isn't well enough to do therapy. As far as I know from reading, it can take at least a year, and commonly two, for a brain to do this healing and then be ready for therapy. But for our young people they are also in the adolescent period of brain changes too!

It sounds like the therapy you're hoping for for your dd is also around building up her skills and tolerance to manage the hospital things related to the heart issues. I guess it might be possible, but could be tricky for a therapist to support this and leave the ED stuff alone. I really worry about my dd seeing a therapist that doesn't understand the ED. There is a lot of poor knowledge around EDs even in mental health professionals, which I know because I am one, and my understanding was terrible until my own dd got this. Partly because when lots of us trained the info was just wrong (lots of mother blaming), and it's moved on a lot in the last 20 years.

What you're doing in tackling the eating first is a good plan. That's what we have done too, and it's been a rocky ride, but we have managed to get dd back in a much more physically healthy state. We are still waiting to be seen by camhs (been waiting since 1st sept).

@summertimessadness24 oh sorry to hear about how your dd has been feeling, but it's so good she could tell you. This whole thing is such a rollercoaster, each time I feel hopeful I feel like it rears up and puts me back in my place. She will feel worse for a while, the ed will be making her feel terrible for eating. I made the mistake of saying to my dd about 2 months in that she looked so much better and she MUST be feeling better too? Cue a terrible meltdown about how she had never felt so terrible, I was deliberately doing this to make her feel bad, and the ONLY time in her life she had felt happy was when she was not eating. I feel like Ed's are super gaslighty- I ended up scrolling through all of the photos on my phone from when dd was born until now, trying to see evidence of her being happy as a little girl growing up. And I found it - of course I did, but the ed has me doubting everything.

@Proseccoismyfriend - I'm missing normal too. I feel like I've forgotten it almost though. We are going to go to look at some garden furniture today and planning to have lunch (meatballs!) in the cafe. I'm already dreading it.

Here's the diagram I mentioned @Mummyoflittledragon

Thanks for the info @greydoor I’m sorry your dd is suffering.

Not getting anywhere with dd. She’s saying she just needs time to get her appetite back, to get over the trauma because 2 weeks isn’t enough and that I’m making it worse. She tells me she would have eaten more but now because I’ve asked her to eat and been weird / talking about her etc, she isn’t going to eat anymore. That she’ll get her appetite back by herself and to stop annoying her. She is incredibly stubborn and strong willed. Her friends recognise it as well.

Today we went out to a restaurant with very good friends. It was a long standing arrangement and I didn’t want to go. Dd isn’t well enough. But I thought trial and error. Maybe she’ll eat with them. She refused to eat point blank this morning saying she’d eat at the restaurant. She ate a few mixed roasted vegetables at the restaurant and a little cheese. Plus a Diet Coke when I wanted her to have regular. She said she wouldn’t drink regular. Really not enough food.

Everything is about blaming me. Dinner will be another battle…

Part of me is fooled into thinking that maybe she will get better after she processes the trauma. But I know that’s just wishful thinking.

I see it won’t be possible to get her therapy then for now. There’s no way for the 2 to be separated or for dd to understand by the sound of it as she’s so entrenched in her behaviour and thinking.

I know what you mean about therapists and changing advice. Dd has a tutor to help with GCSE maths and English. The tutor is also a counsellor and I asked her to speak to dd on Friday to encourage her to eat. She told dd that no one could make her eat and asked dd if dd felt like I was controlling her. I’m sure the tutor is itching to tell me this herself and will be wanting to write what I imagine will be a curt email about it to me. So I’m going to have to write one to her first to ask her to not speak to dd beyond perhaps reassuring that I love dd very much and doing what I think is best as it sounds as if she’s learned about mother blaming.

How did the garden centre go?

Mummy it does sound like your dd has slipped into ED territory, it might have started as not eating for other reasons but the speed at which this develops into anorexia is really scary.

I don't think you'll be able to get through this without any medical support as being in a calorie deficit causes a multitude of physical health problems for teens. You can use whatever leverage will work with your dd to get her to eat, so phone, socialising etc can all be taken away if she doesn't eat.

My dd saw a school counsellor who said similar to my dd as your dds did. It was beyond frustrating and I sent in a very terse email outlining that the principles of FBT and pointing out this is the gold standard treatment for restrictive EDs supported by NICE guidelines.

Grey my dd has said similar to me in the past and I felt it was the ED trying to gaslight me.

Hey @Mummyoflittledragon - it's such a hard situation you're in. AN takes every excuse it can and uses them, we thought my dd had low iron for a while as she was so cold, periods had stopped and her appetite had disappeared (looking back it's so obvious, but hindsight is a wonderful thing...) she would say similar ish things - "just wait for me to get better and then my appetite will come back". But it's unlikely to come back by itself, and in reality it sounds like her eating has been diminishing for quite a while now.

Is the only trigger to the seizures hospital / medical things? I'm wondering what would happen if you just go full on with a meal plan - would the stress of that trigger one too do you think?

The meal at the restaurant sounds stressful for you, it reminded me of one we had about a month before we realised. Dd accidentally ordered a salad which contained something she can't eat, and when it arrived and we realised she was insistent we didn't order her anything to replace it. She had about a bite and a half of my food, and that was it. I can remember that awful feeling of things not being good.

Our trip out was ok today - she ate lunch. My dd is also very headstrong and determined, probably like many on here, and I recognise a look of determination on her face - she was forcing herself to eat. She did it, but by god you can see she hated every minute of it.

Just managed to weigh DS and he’s lost 1kg in the last 6 days. He’s down to 45kg now which I think is 75% wfh.
We went to CAMHS on Friday, he refused all observations and they said they would refer him to see a dietician. I don’t know how long that will take. Didn’t sound as though it was going to be any time soon. They did tell him he will need to follow a meal plan from the dietician and that if he continues to loose weight he will end up in hospital but he doesn’t seem bothered.

@WoodenTrain - sorry to hear that. Blimey that's so stressful. How have things been since then?

@greydoor he’s eaten less since going to CAMHS and become even more withdrawn. We’ve got another CAMHS appointment tomorrow with a different clinician so I’m just hoping something will done faster but not holding my breath. It is so stressful, there’s only so many weeks he can continue to lose weight at this rate. I don’t get why it’s not being taken more seriously.

Thanks for starting the new thread, @greydoor. Sorry to hear about everyone's struggles. DD has just transitioned to Adult Services, and we are getting a bit concerned about her. After I initially doing really well following her discharge mid-April, DD has refused monitoring from the GP and is starting to talk about discharging herself from Adult Services. She's just refused dessert following dinner and has been effing and blinding at DH when he tried to persuade her - just like the 'bad old days'...We can't go through this again. Poor DS is just about to do his GCSEs

Thanks for the advice. Dd still hasn’t eaten anymore. Phone has been taken away. I was a bit concerned as to whether that is good as this is punishing her so to speak. Dd is very very stubborn. She used to eat a very limited amount of foods and seems largely to have grown out of some sensory issues.

I also think she is going to need medial intervention. It’s so difficult. And surreal right now. She has said all the I hate yous, I wish you were dead etc, picked up a glass and threatened violence, to stab me, to kill me and to attempt suicide. I said I’d have to take her to A&E if she was serious about suicide and she admitted it was to get me off her case. Still not eaten again. My mistake I think has been to try to get her to eat unsafe foods. I think I just need to stick to the very limited foods she will eat like when she was little as they’re nutritious - crème fraiche, roasted veg, guacamole and naan until we get some assistance.

One question, can I leave her home alone for about 3 hours tomorrow morning? She won’t have eaten. Goodness knows if she will eat this evening. I think it’s blown now. I have my friend as back up but my friend wants dd to go to her house so she can work and that’s a toughie. Otherwise I’ll do what I’d planned over the phone but it’s not ideal as it’s for my health and a face to face consult plus body work is needed.

I’m glad your dd ate @greydoor. The stress so far hasn’t caused a seizure. But she was dizzy this morning…

Sorry to hear about so many people affected.