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!

Obviously, that should be 'even if they are overweight'....

@NanFlanders @Curlyhairedassasin Yes, she eats sparsely - she picks at food or “isn’t hungry” at mealtimes, leaving lots despite sitting at the table for an hour plus. She’s always been willowy as a child but was on 25th centile as a baby, which was the last time she was weighed regularly.

She’s been screened for coeliac disease etc and all her tests were normal.

Nan dd won't eat at college. She barely sips water. Curly she would hate college trying to help her. She wants to be 'normal' and get on in life but the food issue holds her back. Now she's repeating a year because of it. We live a long way and it's just not possible for her to come home for lunch then go back.
She won't try therapy. We just go round in circles trying to come up with solutions. It is driving me insane! My life is on hold trying to get her to get on on life. I've had a day of it today with her hanging around me moping. I'm tying to be empathetic but.. bloody hell it's hard! I'm hiding in my room having a 'nap' 😂

Hi Glitterfarti welcome and you're a good place here for advice x

@BagpussSaggyOldClothCat Sounds very hard and impossible. Would redistributing the lunch load onto other meals work? Cannot really think of anything else. I guess you coming to the car park and her eating in your car isn't an option neither?!?

I totally get the hiding. I am hiding loads in the bathroom. At least I can lock the door!!

Curly it's a long round trip to the college. I already drive her there and back so if I have to go at lunchtime too I might as well just camp in my car all day 🙄. Then there's the risk someone will be near the car and she won't eat anyway.
She reckons she will go all day without lunch and have it when she gets home at 4.30. Not great is it.

Hi welcome, tbh that sounds very typical of anorexia tbh. It's goods she's been referred to the ED service and you need to start reading up on FBT (family based treatment) Eva Musby is a good place to start especially for younger kids. Her current wfh is very low and usually would indicate complete bed rest and wheelchair use.

If you're not already food has to be non negotiable, you will need to maximise every mouthful and the easiest way to do this is to add double cream or butter to everything. She needs 3 good meals and 3 decent snacks every day.

It's a misconception that anorexia is about body image and low self esteem, for some children (especially if they're naturally slim) they can easily slip into anorexia by loosing a small amount of weight which tips the balance. Once the brain becomes starved anxiety around food can increase as well as irrational thoughts and behaviours.

Has she had bloods and an ecg?

Bagpuss that doesn't sound ideal re not eating at college. Can you speak to her tutor about her having a safe space to eat lunch? Does she eat a decent lunch at home? Is her anxiety around eating in front of people? Is that something you can practice?

I'm stressed about dd going back to college as well as she's been given a bursary which includes lunches at college. Ordinarily this would be brilliant news but I'm worried that I won't know what she's getting or eating. I don't trust her at all especially for lunch which is still her most challenging meal.

Nan yay for small steps! I really hope this is a turning point for your dd.

Curly have you got insurance? Can you take your dd to a local hospital if she's not eating? I think I'd make it clear that the rules are the same whether she's abroad or not. Sounds like the anorexia is just pushing it's luck with thinking you'll back off if she's on holiday. I'm sorry you're so alone with managing both your dds.

girlie, we went to a local supermarket in the end where she scanned all sorts of stuff for calories and created a meal plan which feels safe (and has the same sort of calories as she has back at home). I gave her this option or hopping back on Ryanair on the way home. Downside is we cannot eat out at all and need to be home for most and snacks (her 'plan' contains a lot of ice cream). But at least she is eating. We just have a lot of downtime which isn't that bad. We have travel insurance but her AN is not covered. Couldn't find an insurer that would cover it. We have the Ehic card if shit fan but I would probably just fly home early if things escalate in any case.

Thanks @Girliefriendlikespuppies, she had bloods done a few weeks ago with the gp, which were normal. I’m supposed to repeat them but not sure if this will be done at the ED referral. No ecg.

she seems so much better in the holidays but will miss meals unless I pressure her and put stuff on her lap/encourage the whole time she’s eating, apparently she’s “not hungry” or too absorbed in her phone.

I have so many mixed emotions, trying to keep things normal and let her have fun doing normal kid stuff but mindful she can’t burn too much energy! DH (and other family members) is making me feel like I’m making a massive fuss which will make her worse, I feel like I’m the only one trying to safeguard her. Very difficult to navigate but I’m working my way through the Eva Musby site and that seems very helpful.

@Glitterfarti You are doing everything right. Don't listen to people who say you are overreacting. Anorexia is deadly and can get a hold very quickly. If you can get her to eat, do so. Ideally 3 meals plus 3 snacks a day. Hang on in there.

Glitter** it's unfortunately really common for other family members to minimise your concerns. The denial around EDs is a real problem and just makes it worse.

I think some people think making an issue of it will make it worse when in actual fact the opposite is true.

I'd start insisting on 3 meals and 3 snacks and ensure everything is eaten.

Is there anyone I here whose dc have just got gcse results? If so I hope they managed to do well despite this awful condition.

Hi all, newbie here! I’ve tagged on this thread as I don’t know how to create a new one 😂
looking for support/advice from you wonderful people.
My ds is 10, when he was approximately 2 he had a virus and was off his food after that for a few weeks. GP & health visitor all said when he was well again he’d eat, he did but it ended up being plain foods, no sauces mainly pasta, rice spaghetti, cheese yoghurts a bit more variety but not a lot. Dietician wasn’t concerned get he was getting enough and to keep offering other foods. Fast forward to now, he’s started only within the last few months eating more, meat, potatoes (finally woohoo)! But his portion sizes are really small, he’s saying he’s full and he’s had enough but he’s cut out all sweet treats, says he just doesn’t fancy them and after the smallest meal he’s full. I have an appointment lined up with the gp for next week but I am absolutely going out of my mind. I’ve asked him if he was trying to lose weight (he’s always been slim but now since about May he’s lost about 1 stone) he said he’s not and he doesn’t think he’s avoiding food and thinks all is fine and because he’s full we shouldn’t push him. He seems to have no interest in food or an appetite, when I say lunchtime what do you fancy he’s like already, we haven’t long had breakfast (4 hrs ago) I’m not hungry yet. He used to love chocolate and would happily eat it until the cows came home but now has no interest. I took him food shopping so he could pick some new bits as he’s trying a lot more and also so it wasn’t the same old in the cupboards and fridge but everything he’s picked he’s no decided he doesn’t want. He says he doesn’t know why. I’ve been online and it sounds similar arfid, anyone been in this situation?

@Proseccoismyfriend sorry to hear that you are experiencing struggles w your DSs eating. I don't have much knowledge around arfid , someone w more will hopefully pop along soon but it does sound like you have been tracking his weight and there is now ongoing loss so a refeeding process needs to be in place. With a lot of weight loss/brain starvation mode he cannot rely on waiting to 'feeĺ' hungry to start eating unfortunately.

@Proseccoismyfriend I think the priority is to try to reverse the weight loss - as @ReineDeSaba says, calorie deficit in itself can cause the urge to further starve. Can you get him to drink high calorie shakes?

I’ll give that a try, he was having about 650 calories a day and this week alone he’s upped that to 730-750 (he is trying and doesn’t want to be unwell, he’s frightened bless him) but the shakes might be easier than food. I’ll try anything!

@Proseccoismyfriend That sounds very little in terms of calories. My DD was admitted to the HDU when she was eating about 800 cals per day. Persistent low calories cause changes in the electrolyte household which in turn often impact the heart - heart rhythm changes, abnormal ECG, low heart rate. I see that you have an appointment with the GP lined up but if you are concerned, please do not hesitate to take him to a&e. Sounds like he needs bloods and ECG done sooner than later.

Will he eat home cooked food? Can you hide calories in form or oils/cream etc (e.g. in form of sauces and stews). Generally speaking, they should eat 3 + 3 (which is 3 meals and 3 snacks). but if he has been restricting for a long time this needs to be done under medical supervision (my DD was three weeks in hospital where they took bloods every day for the first week). Introducing too much too fast can be dangerous too (there is this thing called re-feeding syndrome). Sounds like your DS is really unwell.

His only home cooked food was pasta, cooked in butter and he would have mozzarella on top so this was his main source of calories prior to 3 weeks ago he was eating well just avoiding chocolate so I wasn’t too concerned, his weight had dropped but he’s very active trains for sports 4 times a week. Now I’m worried as he’s stopped the pasta and is enjoying other things so doesn’t want pasta that the calories have dropped, his new love is sausages and a friend suggested mixing the sausages with his pasta so I’m trying that tonight. I’m so concerned that it’s such a fine balance and I don’t want to get it wrong 😢

He shouldn't be doing sport at such a low calorie intake. DD did a sport and had to stop it at all. Depending on his WFH (weight for height - they do not use BMI at that age), he may need even bed rest. I would not allow him to exercise at all anymore.

Girlie dd won't accept help from college tutors. All I can do is have lunch ready for when she gets home at 4.30 and a late dinner. Her course is 3 days but sometimes 4. She is pretty much weight restored (I think maybe slightly over now) and has a good breakfast at 1000 cals so physically not in danger. I'll just have to feed her up as much as I can when she's not in college. It's the ED behaviours continuing that is so frustrating. I've suggested a cereal bar or some rice cakes to snack on (in the loo if needs be). She says she'll drink water. It'll be hard for her as she's repeating a year so lots of new faces so maybe she's anxious and feels she needs to have some control still.

Curly Are you still on holiday and how is it going?

Hello to newbies. So sorry you are here but it's the best place for support. When I first discovered the group I read through maybe of the previous threads and found them really helpful.

bagpuss still here. It's not going amazing. She lost about half a kg since we arrived (about 6 days ago). She is eating but is refusing the full plan. She is managing about 2000 cals but it's not enough to maintain. But physically not dangerous. We just have a few more days and an appointment in the ED clinic early Sept so just biting my time. But wasn't a great break so far.

Curly that sounds stressful. We had a holiday like that in the early days. We couldn't wait to get her home and haven't attempted a holiday since. I hope when you get home you can quickly get her back into routine of the full plan to minimise the loss. Are you able to sneak fats in to try and make it up?

@Proseccoismyfriend I agree that your DS sounds v unwell. Please get him checked out ASAP... if he has been eating this little for the whole week I would go to A&E. He needs full blood works, an ecg, HR on sitting and standing, ditto BP.
Then you need advice on poss refeeding syndrome as someone has said.
Please don't worry ' that you will make it worse' . You can't. Ignore the family saying 'don't make a fuss' it's exactly the wrong thing to do. He is unlikely to eat properly without you taking over his food entirely and not allowing him any decisions.
I had a sporty DD with AN who was addicted to exercise. What helped us is:
No food no training. Non negotiable.
See eating almost as a 'chore'. Accept there is no joy in it for him. It's almost like a 'to do' list. Make a meal and snack plan and tick each item off as its eaten. This helped my DD a lot. It took the element of surprise out of food and she could see what she had to manage each day. (It was still vv hard to get her to eat it mind!!!)
Treat weight gain as an improvement in strength. Not weight. The more he eats the stronger he is. He should feel this when he is allowed to train again.
My DD takes v little pleasure in food even though she is fully recovered and eating well. (Some things she enjoys but not much).
However she is an elite sportswoman and knows food is as essential as training and stretching etc.

But first things first he needs medical attention earlier rather than later.
.

Some great advice here, thank you. I have said sport will stop if he didn't have enough fuel for his body and this devastated him, the old saying you have to be cruel to be kind. I'm going to make a chart 3 meals & 3 snacks and hold on for the ride