Support thread 13 for parents of young people with an eating disorder

[Curlyhairedassasin]

New thread as the other one is filling up fast....

Thanks @Curlyhairedassasin . Just place marking.

Thanks Curly. Well spotted

Thank you, just checking in will catch up when I can

Feeling a bit low, don’t think the weather is helping much. DD decided to have chicken salad for breakfast, lunch and dinner yesterday and wouldn’t budge on the issue. It feels unsettling as this was something she’d eat when her ED was at its worst. I know there is no such thing as a breakfast food but it’s still unnerving to not be eating normally.

my weight is at an all time high, trousers that used to fall off me I can’t button up. I’ve got no idea how to get a handle on things without exacerbating DD’s struggles but I know I can’t keep going the way I am.

Thanks signing in

@F11 Hope things go as well as they can today. Thinking of you.

@Cantfindthewordsddstruggling I gained a lot of weight (and I was overweight before) when DD was struggling as did DS. DH is diabetic and his numbers were terrible roo. DD needed to eat a weight gain menu so we all ended up doing it. We also had the house full of pre-packaged snacks (had previously been what the kids calles an 'ingredients' house) as DD struggled to eat things when she didn't know the calories. We grabbed meal deals on the way to visit the hospital and DS was left alone to fix his own dinner frequently, as DH and I were traveling to visit DD. And the hospital stressed that no-one in the house should be trying to lose weight. DD now says she wouldn't be triggered if I lost weight, and I've recently started Mounjaro (which I'm delighted by actually). I still feel the need to be discreet around weight loss though. And I do worry I might have set my son up for health issues. This illness is so hard on the whole family. Try not to give yourself a hard time. Is there anything else you could do to improve your fitness - swimming or walking maybe?

@NanFlanders thanks so much. Yes. I probably do need to get back to some form of exercise. With so many appts for dd I’ve neglected the basics for myself. Not even caught up with friends or had a haircut in over a year. Went on a day trip with dd and dh and the small amount of walking on an incline just about killed me. I was so exhausted I was comatose by 7pm within mins of getting home. During Covid I was walking at least an hour a day.

Can't** I think it's really common, I gained around the same amount as dd did I think. She obviously needed the weight gain when my weight was fine as it was. The problem I have now is that my already sweet tooth is sweeter than ever, I think I have a sugar addiction.

I still very much want to normalise eating crisps, chocolate, cake etc around dd but I don't want to gain more weight.

It's really hard, I have slowly started to increase my exercise and on days where I can do discreetly I do the 8/16 thing (eat with an 8 hour window.)

Same here @Cantfindthewordsddstruggling. I’ve gained as much as my DD and have been thinking about how to get back to a healthy weight. I will have to increase my exercise I think. I dare not cut back in case it is noticed and awakens some dark thoughts. I have thought about booking myself an appointment with a Dietitian – the irony!

Thanks Curly x

Checking in on the new thread.

Haven posted much recently as summer was so busy with visitors and a holiday.

DD wasn’t well enough to fly, so we took a road trip through France, which worked well except I forgot her snack bars and DD packed the kitchen scales 🤯.

She restricted her intake as much as she could get away with, lost nearly a kilo in two weeks. It was worth it though as we all desperately needed a change of scenery.

DD is now back at school resitting Y12 and has put on 2kg in three weeks. She is doing well eating at school, I am collecting her for lunch on the days where she has no lessons in the afternoon. She has made new friends and on Friday we are celebrating 6 months since she left the day unit.

We still have a long way to go, but the future seems to be starting to look brighter.

It has been almost a year since I took her to A&E, 10 months off school and the journey from hell to keep her alive.

Keep fighting for your young people.

Hello. I’m new. A friend (👋) recommended this thread.

DD, 13, went from 48kg to 40kg while on the CAMHS waiting list, but they didn’t diagnose an ED, and discharged, because she refused to talk to them. She’s been even worse in the weeks since, needing to skein my bed, eating significantly less, lower mood.

Anyway, today she had a private assessment (with a psychiatrist at Schoen Chelsea as opposed to the nurse at CAMHS) who was able to get her to talk, and has diagnosed AN.

We have a follow up appointment tomorrow. What should we expect? I’m terrified about the amount of intervention and support that is going to be needed to move forward.

@JoyousCyanCat sorry you are finding yourself here. And that is a big weight loss.

Usually, the treatment is FTB (family based therapy) where you follow a strickt meal plan which usually consists of 3 meals (breakfast, lunch and dinner) and 3 snacks (one mid morning, one in the afternoon and supper). Often referred to as 3+3.

You will probably also have physical checks, ECG (restricting food can cause electrolyte changes in the blood which can mess up the heart rhythm), heart rate, blood pressure and bloods.

Is she eating at all? Depending on her weight (in relation to her height - her weight in isolation doesn't mean much), she may have to stop school and go on bed rest, some of our children here were admitted to hospital. A lot depends on how unwell she is physical.

How much food is she managing at the moment? Is she in school. How tall is she? 8 KG is a big weight loss. Did she lose that quickly?

She does eat a bit, but very little. On a school day, breakfast is half a pop tart or 3 Ritz crackers (so always less than 100 calories). No lunch. Some sweets after school. For dinner she has a very limited version of whatever the rest of us are eating maybe a) 2 slices (without crust) of a supermarket pizza, b) less than half a portion of pasta (with nothing on it), c) the lean meat from a pork chop and some broccoli.

She’s in school, but often resists going in. The psychiatrist did say she wanted her to stay at school if at all possible.

It’s been 5 months, I think. She’s 160cm, so I reckon she’s gone from 100 %wfh (aged 12.75) to 85 %wfh (now, 13.25), although I can’t use the marsipan link to get the average bmi figures to check those figures are correct.

is FTB usually weekly?

How do you actually make them eat the food, especially at they’re at school. Is it just the threat of hospitalisation?

Hey @JoyousCyanCat sorry you've found yourself here. I would recommend you read Eva Musby's book, it's available on Amazon. There are also several chapters available on Eva's website while you wait for it to arrive, as well as some really useful YouTube videos.

The road to recovery is sadly usually pretty long. The work will be done by you at home, and the FBT appointments are designed to help you to do it, but they don't target the ED directly if that makes sense.

There are a few ways of getting them to eat. We took what's often known as a 'life stops until you eat' approach. So that meant that every meal and every snack had to be eaten in full, and we would sit with our daughter and wait for this to happen, offering firm, but compassionate encouragement. In the early weeks and months this was met with extreme distress, aggression, attempts to discard or hide food. It is very hard to keep going, but necessary, as recovery depends on the brain having what it needs - calories and fat.

I supplemented all meals with as many calories as I could - we went through blocks and blocks of butter, and many pots of double cream a week. I used to make a shake for afternoon snack with a small pot of haagen dazs, 100 mls of double cream, cashew butter, sunflower oil and a spoon of nesquick- that's at least 800 calories in a very small glass. They are not allowed to be involved in food choice or preparation, and must eat everything, not leaving even a mouthful. In the beginning they will want to make sure it's safe for your daughter to increase her calories - there can be a risk of 'refeeding' syndrome when they haven't been eating much.

fbt doesn't suit everyone, but it does have good evidence for recovery. My daughter couldn't have cared about the threat of hospitalisation - the anorexia voice is very loud at the start. Nothing really gets through to them. Eating is the only real way to get to recovery.

We kept our daughter off school for about 6 weeks, and then she was back mornings only. We are a year into this, weight restored for about 5 months now, she is doing much better mentally, and she still can't manage eating without some supervision. It's something we are working on in the second phase of fbt. So I'd be cautious about the idea of her managing to eat anything while you aren't with her. My daughter could even manage to hide food while we were sitting next to her - for a few weeks we had to watch every mouthful going in, and check it was all gone by checking in her mouth at the end of a meal.

Sorry to be the bearer of grim information. Recovery is long and hard, but it is possible, although we aren't there yet. We are about 13 months post diagnosis here.

Use this thread for anything you need - advice, information, to vent, get support. It was probably the best source of information and support for me.

Good luck

Ps I worked out wfh by fiddling around with the nhs child bmi calculator until I could find the weight for my child's height that was at the 50th percentile, then I would divide my daughters weight by this number.

Sorry, last ps! FBT is often thought to be family based THERAPY, but actually it's family based TREATMENT. People who have anorexia can't manage therapy until they are recovered usually, and there is not good evidence suggesting therapy is effective for anorexia, but family based treatment does have good evidence.

Hi @JoyousCyanCat sorry you e had to find us, FBT is you as a parent taking full control of all of your dds food choices.

You decide and prepare 3 meals and 3 snacks and she has to eat them, the fastest way to recovery from anorexia is to get the weight back on her.

Personally I'd take her out of school and get signed off work for 2-3 weeks to get this started.

The pushback from your dd will be massive but you remain calm and insistent, 'this is the right amount of food' 'you can trust me this is what you need'

You can use whatever leverage works, so phone, friends, trips etc life stops until the food goes in.

Hold onto the fact that your dd is absolutely starving hungry and desperately wants to eat but the anorexia is telling her not to. You have to be louder than the ED, what you want your dd to say is 'so I have^^ to eat this?' To which you reply yes absolutely you do.

If your dd knows her weight I would advocate blind weighing, I don't see any benefits to them knowing their weight when they're in the grips of it.

To get a decent weight gain of 0.5-1kg a week you need to aim for approximately 3000 cals a day so adding calories to food tends to be the easiest way to make that achievable.

Signing in - we have a CAMHS review this afternoon. I know DD is gaining now but still feeling that we need her to carry on with therapy. Definitely not out of the woods yet.

Sending love and strength to everyone. Met some other parents last week who are going through it and whilst it's nice to have that support and understanding I also just want to hug them all. We all look so sad and worried. :(

@SicilianOrange i think exactly the same every time i attend a virtual carers support group. Whilst it’s lovely to be with people who understand what you’re going through everyone just looks so sad. It’s always struck me how text book sad people’s faces look with downturned mouths 😞
However, there is always hope too

Yes, definitely feel hopeful more often now than I did even six months ago Shanghai

@Shanghai101 @SicilianOrange I think the best way I can describe things is feeling like I’ve had the stuffing knocked out of me. Yep a 24/7 almost of looking and feeling sad and worried.

Lol to the sad face. DD1 (the one with learning difficulties) keeps getting very agitated by my face recently and keeps crying that she doesn't like it. If it goes like that, I will have to resign to nip and tuck in the end. Who thought DD's AN could land me a face lift, eh?

I am having to collect DD2 currently about 2 a week from school early due to self harm - done at night before but they insist I collect and she gets seen by someone (doesn't happen as DD is refusing to see the GP/show cuts). Told school to keep ringing as I am not coping with work and all the early pick up. They suggested I get signed off sick. Do they really think they world works like that?
Still waiting on referral to the PRU.... everything takes ages. School referred us back to social services and had a call last night about all the SH. They couldn't understand I don't drive DD to school and pick her up (so she cannot buy stuff from shops or pick up glass to SH). Explained that I have DD1 on school transport and need to be at home for pick ups and drop offs. They just keep asking of there isn't anyone else. They bloody well know I have no family or friends. I just wanna scream.

Curly, the first bit of your post is kinda funny but the next part is too sad. Have you asked any of your Dd’s friends if they can help. I hate to ask for help but in the circumstances I would and I know if anybody asked me I would be only too happy to help if I could. In fact, if you live anywhere near me, I would gladly collect your daughter from school.