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

@Lottsbiffandsmudge it's Setraline and Olanzapine she is on.... I am not good at crying in appointments. I tend to get ratty 😳

@Lottsbiffandsmudge I do that! They keep asking about my mood and I cry through them all.

shes been admitted now and they are saying if she doesn’t follow the diet plan then next week she will need a feeding tube which obviously she isn’t very happy about. Thing is she hasn’t received any therapy so far just nurses trying to make her eat food and then scaring her with the threat of the tube.
she’s been crying this morning and isn’t coping very well with it all, she has had a mug of shake to keep the nurse happy but now is googling how many calories and panicking.
she can’t be on her own and isn’t allowed a bathroom in her room either as she also purges which I’m majorly concerned about at the moment as well 😢

@Eden1990 really sorry. Sounds like us a few months back. DD agreed to eat in the end as she was scared of the tube (not just the tube but also the food/cals they would put into her that way). Are you in an eating disorder facility or just on a general ward for re-feeding? The latter was us. There was no therapy. The aim was to get DD to eat 3+3 again. The nurses had no time for the meal support so a parent had to be on the ward all day long to provide meal support. It was purely to re-establish her ability to eat and not therapy. Guess depends on what sort of ward you are.

DD was put in the hospital on olanzapine. I think this was key in getting her to eat again. It's medication to treat the extreme anxiety around food. If no progress, this is something maybe to discuss with the team. Being in the ward was really hard for the whole family. Do you have someone to take turns with? Make sure you look after yourself too. The next few weeks will be challenging but remember, you are in the best possible place now and access help. It will get better even if it doesn't look like that now.

I'm sorry @Eden1990 I remember those days well. We are still being threatened with a feeding tube as it's taken him so long to gain. Eva Musby videos helped me encourage him to eat. The nurses left us to it. My understanding is that it's too soon for therapy, at the moment they are in severe starvation and usually don't remember this stage when they are well or it's blurry. Therapy now is a waste of energy as the brain is so starved of oxygen, it tends to come once weight restoration has been completed.

Curly have you ever called the police when dd attacks you? I would call them, it's a way of accessing more support as they can link in with social services and it also draws a line in the sand with dd your who would see a clear consequence for her behaviour.

Eden there is no therapy that would be useful at this stage. She needs to be eating 3 plus 3 and gaining around 1kg a week. If she gets back to her original weight plus some extra then therapy may be useful but she may not need it by that point.

Notallgood it is quite normal for them to start co operating in the early stages of refeeding, my dd was the same. Start setting clear boundaries now, you prepare the food and she must eat it. I made the mistake of not sticking to the boundaries firmly enough and giving too much freedom which came back to bite me unfortunately.

Hello to those recently joined, sorry you're here but hope that it's a support to you. Sorry not to check in with people personally, my brain is a bit fried. I have been reading people's posts and thinking of you.

I took 3 weeks off work with stress, work have been lovely. Going back has been good and bad. I feel good at work but then all my energy is gone and I don't have quite enough at home.

I have a question about calories (we can't see the ED dietitian due to conflict of interest). DD has been having up to 2,500 calories most days, she's grown a cm in height and barely put on any weight so now she's gone down to 90 WFH (from 93). She's not doing any exercise, walking to school is 5 mins.

I'm bewildered! What more do I need to do?!?! Help!!

Eyelashes to gain weight really they need a minimum of 3000 calories a day, I used to aim for 3000-3500.

My dd now maintains on around 2500.

@Girliefriendlikespuppies Oh dear me! I cannot imagine getting more food into her!! Maybe a smoothie on top of her usual food is that way to go. I thought she'd maintain on around 2000 and gain on 2500 because she's not doing any exercise.

I find that if I get a snack / dessert a few weeks in a row, and start to rely on it, she'll then say she's gone off it, so I'm constantly scrambling around trying to get some variety.

Does anyone have any ideas for calorie dense food?

I found Charlie Bigham chocolate dessert is 460 calories - big win as it's tiny! Giant toblerone was great as well, 166 calories per chunk.

She does seem generally a bit happier in herself. She's also coming out to the car independently for supervised lunches, which is a huge step , though not very convenient for working!!

Smoothies are a good idea. I Made DD's with 100ml ff milk, 100g ff yog, 40g oats, 1 banana m, a few berries and 2 tsp honey. It makes nearly a pint though but is 400 cals. You could half it and add 40ml of double cream after it's blitzed and it would still be 400 cals! But much less volume. Or add a really high fat ice cream.

40ml in each half that is!

Also dd drank milk which helped up the cals.
Snack wise over DDs 2 year recovery we used/tried
cereal bars, flap jack, nut butters with apple slices or on oat cakes, cake, chocolate, crisps, ice cream, ff yog with banana, brownie, nuts, cheese straws, bowl of cereal, dried fruit and cheese

We're having to rely on fortisip, the only meals that could be increased food wise would be snacks but they're major fears right now and we're gradually fighting them. He drinks ff milk which helps and x3 fortisip

Thanks @Lottsbiffandsmudge I need to up my smoothie game! She's never been a huge fan of dairy which is a giant PITA. I'm going to do some baking at the weekend - flapjacks and brownies. I need regular ideas / inspiration to keep things interesting for her but the longer it goes on, the less energy I have.

@Curlyhairedassasin I'm really sorry to hear about the violence at home, I wish I had some help for you but I don't have answers sorry but I hope you can find a way through this.

Eyelashes** I added double cream to everything, it went in porridge, soup, scrambled eggs, mashed potatoes, pasta sauce, curry's, milkshakes, smoothies, anything that had a white sauce so fish pie, cheesy pasta etc. even a glass of milk was 50% milk 50% cream.

If I couldn't add double cream I added butter instead.

Puddings wise dd had sponge puddings with cream, ice cream, tiramisu, profiteroles, big bars of chocolate, cheesecake, rice pudding.

My dd struggled with snacks (still does) but I looked for cereal bars that were quite nutty as they tended to be the highest calorie ones.

@Curlyhairedassasin so sorry to hear that things are so hard for you. The attacks you describe sound very similar to autistic meltdowns and I know that sometimes families call the police. They should be able to talk to her and hopefully make her realise how unacceptable her behaviour is. It’s extreme and heartbreaking but boundaries have to be established.

Another possibility might be to ring BEAT or FEAST for advice. I really hope you can get some better support

Hi everyone, sorry to see the new people but glad you’ve found this thread.

DD has reached 85% wfh so been discharged from ED service. She’s on a waiting list for CAMHs (but I seriously doubt she will be accepted) and we’ve started some counselling through School Health (was on their waiting list for a year!). Follow up is through the GP, seems like they just wanted her off their books asap as she’s not fitting diagnostic boxes.

She’s still coming home at lunchtime, hoping to some sort of phased return in January, I think straight back to normal school will overwhelm her (but will make our lives so much easier with work). She is eating well at lunchtime, not so much the other meals - she likes something hot now the weather has changed, my worry is she will go back to school and lose weight again because school canteen food/packed lunches aren’t as appealing as the stuff we’re offering her. ED clinic said by phone they won’t take her back if her weight drops again because they think it’s anxiety (she said she feels sad so she doesn’t eat, rather than she’s worried about her shape).

Has anyone else been here? I don’t know what to think, we’ve been cooped up for so long because she’s still not allowed to exercise, but just thinking if it’s anxiety we should be getting out for long walks then encouraging a meal when we get home!

someone mentioned smoothies - we make one with two good dollops proper ice cream, 1 banana, 1 large tbsp peanut butter, 1 tsp honey, blend that all up then thin it out with ff milk. She will sometimes accept this at breakfast when she’s refusing solid food.

@Glitterfarti our situation is a bit different, so I'm not sure I have anything useful to add but I'm assuming they're diagnosing 'disordered eating' rather than an ED? 85 WFH seems quite low but what you're saying about prioritising MH sounds very sensible. Can you go for a gentle walk with a nice flask of hot chocolate/ snacks so you feel reassured about burning calories? What other activities does she like?

Have they discussed medication if it's 'just' MH. Sorry you've probably already said all these things up thread but I've missed it.

Thanks for the smoothie recipe, I'll try that!

Thanks @Eyelashesoffire, no diagnosis, so no talk of meds/other support. She’s only 11 so everyone’s reluctant to label her.

We’ve really been trying hard and got her up from 79% in June, but it’s slooooooow progress. Part of me just wants to throw in the towel and go back to feeding her normally, and let her lose weight again so she can get some help. I’m trying to head off a diagnosable ED as she gets more understanding about calories/what’s fattening and what isn’t as she gets older, because atm she really doesn’t have much of a clue because she’s so young. Really conflicted.

Hey everyone. Hello to new people here - sorry you have had to find this thread, but it is literally the best place for advice and support. Each time I see a new poster my heart sinks a bit - I just had no idea ed problems were so common.

I'm so surprised that your dd has been discharged @Glitterfarti. I've been mulling over whether we should look for some kind of private therapist for dd, I have no idea where to start with that though... Would you ever be in a position to consider that?

@Curlyhairedassasin gosh this all sounds so hard to deal with. I agree with Shanghai that it sounds a lot like autistic meltdowns too. Do you think she gets like this when she is in fight or flight mode? Are there days or times that are better? You've got such a lot on your plate keeping your family going, you are amazing.

We are ok. Dd is now at 100% after I weighed her yesterday. Her mood is still awful though, and behaviour still pretty grim. She is just so horrible and oppositional about every tiny thing. We are having screaming matches about the most random stuff. I don't really understand what it's about - is she pushing me away so I won't pay attention to her eating or something? Or maybe she's having to argue with me to quiet the ed in her mind - like she has no choice to eat because I'm so awful or something... I don't know. It's exhausting and hurtful though, and I've been really struggling because it makes me actively dislike her. I feel so guilty disliking my child!!! And I am not a person who easily hides how I feel - my face is an open book so I know she will know. I've been hoping as we have edged closed to 100 that she would start to seem recovered more, but she's almost worse than ever. I feel like we will never escape this.

@greydoor well done on getting to 100%wfh. I know there is still a long way to go...

no idea if these are autistic meltdowns. DD1 has autism and learning difficulties, not high functioning and she never did anything like that. I don't recognise the behaviour at all. The last few days have been a bit better (though far from good). But no incidents like earlier in the week.

Hi all, I haven't been here for a while and haven't managed to catch up yet. I see there are a lot of new posters and I'm so sorry you are here but it's the best place for support and advice.

We had a devastating family bereavement a few weeks ago and I took my eye off the ball with dd's eating for a few days. It's taken a couple of weeks to get back on track with lots of distress. It just goes to show that even though she's weight restored and generally eats enough, without constant supervision and prompting from me she is at risk of relapse. Dh is stepping up more into the caring role now because god forbid if I got ill or worse, I now realise dd would go downhill fast. We are now two years into this and facing our third Christmas.

My heart goes out to everyone going through this. I remember the awful early days all too well.

@BagpussSaggyOldClothCat so sorry for your loss, but glad your DH is stepping up x

Really sorry to hear about your loss, bagpuss.

Sorry for your loss @BagpussSaggyOldClothCat definitely very scary how quickly things can slip backwards.
We've had a lot of push back with meals this week, they have eventually been eaten but it's so draining not knowing how each meal may go. I would say ds isn't very body conscious he's too young to want privacy yet and still goes to the toilet with the door wide open and will wander round naked. DH saw him tonight pulling his top and checking his reflection in the mirror, he looked sheepish when he asked what he was doing and wouldn't answer. I've discussed again with him tonight and said it's fine to look at our bodies etc and asked if he's worried or concerned, he looks like he wants to tell me something but maybe isn't ready yet. Has this happened to anyone? Is this normal behaviour or Ed traits? We're at the clinic tomorrow so I'll mention it but prior to the Ed I wouldn't of been concerned but I feel I need to be with him 24/7 right now