Support thread 14 for parents of young people with an eating disorder

[Curlyhairedassasin]

New thread as old one is filling up

Good luck @SendTheNextOneIn I hope things go well with your dd today when she comes home. I imagine it’s a combination of excitement and nerves.
Hopefully your dd’s mocks will go well @LurkyLurkyLou. Exams are always a difficult time.

@SendTheNextOneIn that is great news! Thanks for letting us know. It’s been a long six months for you all and I’m so happy you will all be together again xx

Honestly I would remove the watch. It will be painful but better in the long run.
They are so bad for recovering AN sufferers.
I would also block sites, and keep doing so. It sends a message that calorie counting is not healthy.

Hope today has gone well..

Hi everyone. This might seem like a silly question but we’ve got our first camhs appointment tomorrow. The 2 hour one. Will she be ok in her school uniform? Or do you recommend her wearing particular clothing? Totally overthinking probably

If your dd is having bloods taken, you want easy access to the crook of her arm, so a tight shirt won’t be great. Apart from that, overthinking. Are you expecting your dd to go to school after the appointment or is it after school? Just your dd may not want to go in after. A 2 hour session is quite a big deal.

School uniform will be absolutely fine, but she might feel more comfortable in her own clothes. I only say that because my daughter went to her first appt in school uniform (as we planned she would go to school after…she didn’t as she was totally drained and wanted to go home) and she felt a bit exposed sat in the waiting room with some other teens who weren’t in uniform. They will remove heavy clothing for weighing etc regardless, it’s whatever you think your child will be most comfortable in

I would say own clothes if you can. There will be other people there and somehow being in uniform makes them more self conscious. As others have said, no reason to not wear uniform though.

I am glad it’s finally time for your appointment. It is very draining and you both might just want to go home after.

keep us updated. I will be thinking of you xx

Ps @Raspberrysins if you think of anything else please ask as I remember how anxious I was about the first appointment!

We were asked to wear similar clothes to each weigh in, so maybe not uniform unless home clothes are a similar style/ weight. As she was off school for our first visit DD has taken that as an excuse to wear joggers to school (6th form) every appointment day since!
We have seen some in uniform in the waiting room though as the service covers lots of people with different needs

Thanks all. She’s going to school in the morning so just going to bring her home to change I think. Literally been counting the minutes to this appointment! I’ll try not to cry I really will.

I’m so glad it’s finally here for you. It will feel better when you’re not so alone xx

Don’t worry about crying. I’ve cried so many times in front of our CAMHS team!

Best of luck today Raspberrysins. And yes, don't worry about crying! I haven't actually cried at CAMHs yet but it's probably a matter of time. I think I've actually cried myself out of tears over the last month.

Best of luck with the appointment @Raspberrysins. I will be interested to know how it goes as we have ours a week today (1st May). I'm slightly concerned that they won't take it seriously as she has been doing so well with eating what is given to her and just generally seems in a much happier place. I kind of feel like this might be the calm before the storm though and I cannot relax at all!

Re. what to wear, when we have been for our CAMHS check-ins (we are really lucky in that they have seen her for observations - weight, blood pressure, temperature - 4 times already before assessing her) she wore school uniform when we went early morning before school and other times she's just worn leggins (and crocs for ease of shoes on and off). Did you have to do a food diary before you went? We have to do one for one weekend day and two week days.

@Raspberrysins I hope yesterday's appointment went well. Don't feel bad if you cried! I do often. And I don't think it hurts for my daughter to see how distressing the situation is.

Things for us are a little better, so I'm trying to enjoy the moment. She's so hungry and eats a lot (prob had about 1800 calories for breakfast this morning, though we don't generally track). But she's a bit "all or nothing". After eating so much she feels full and bloated, and then doesn't want to eat for ages. On Wednesday she didn't have her lunch until I picked her up from school. School are usually good at checking she's eaten, so we've chased them up.

I think she's worried about eating so much, especially about feeling greedy or getting fat. I keep telling her it's like taking big breaths when you've been underwater a long time, and her body will sort itself out. But I don't know what else to do to support her. She tells me she doesn't want me to acknowledge that she's eaten, or is trying. But in family therapy complained that I didn't look happier now that she's eating! Can't win!!

We're trying so hard to show her what normal life is like. She walked around the village with her friends for the first time ever on the weekend! Bought ice cream and chocolate from the shop. And we did a walk with her friends after school yesterday. But she still values being thin above everything else. Which makes it hard to motivate her.

We had a tricky appointment with CAMHS on Monday. She wanted to be weighed, and know what her weight was, so she could adjust her intake accordingly. In the end we just didn't weigh her at all, though I ended up manhandling her off the scales and stopping her from running away. We had chats about what she SHOULD weigh at her age, looking at her growth charts, which is 5-15kgs more than she weighs now. I know that children with EDs aren't logical, but maybe it sunk in a little?

We've started family therapy which I really do not love. I know they're trying to help my daughter, and don't want to blame us parents. But it does feel like that - ultimately they're looking for things we need to improve in hour household to help her.

@HappyRainbow123
Please be careful of the bingeing. It’s 3 meals 3 snacks for a reason. To keep blood sugars stable. I know it can be great when they eat loads. And it’s great that your dd seems to be getting hunger signals. Because you really want her to honour her hunger. And if she’s mega hungry, she needs to do that. Tummy pains and a few one offs while she works things out, fine. It’s just if it continues to happen, this can lead to binge / restrict ED. And that’s not a way out of the ED, it’s another way of the ED manifesting itself. This can then lead to guilt and vomiting. So you really do need to be having conversations with your dd about eating regularly and eating in a way, that her tummy feels ok for her snack at 11am (or whatever time she eats morning snack). And explain it’s 3+3 for a reason, to stabilise blood sugars. And this is the way forward for her recovery.

I hope it goes ok today @Raspberrysins

I can see what you mean. Our problem is, 7 months into this, 3 meals and 3 snacks has just never, ever worked. And I wonder if that's partly why things got so bad after the first week. The meal plan was ditched back in Feb (with the psychologist's blessing), and me taking control just is impossible. And I can promise you that I'm no pushover!

I think she seems a bit of a tricky case (even CAMHS seem to say this), possibly because there's a big anxiety issue that predates the ED. Or maybe because she's so young. Or maybe some neurodiversity, but I am not sure they can diagnose or assess her for this in her current state.

CAMHS have suggested we focus on her having a larger variety of food, which we've had some success with this last week. I'm talking a lot with her about how snacks will help - and she had an afternoon ice cream yesterday - but it's a struggle!

She's stopped the phosphate - I wondered if this was making her feel more bloated, so the psychiatrist said we may stop it early as she's eating now.

Yes, I totally get that @HappyRainbow123. My dd is a complex case and it is so hard to find the correct leverage, especially as dd has a fair amount of demand avoidance. We only got dd onto 3 meals and 3 snacks by putting our 2024 holiday on the line 2 days before we went. And the first week was horse riding over 5 days and taking a friend, because she needed this girl to get her to eat - and she was the perfect person to take. I did it in the car when I picked dd up from a sleepover 45 mins from home. I then did the only thing I could think to do, head to her friend’s house, which is near ours. Dd finally twigged and we were about a mile away from her friend’s house before she agreed. That was hairy.

She then decided she wasn’t going to do 3 meals 3 snacks anymore in January, because she’s an adult, well she was 17.5. Her comments ‘snack doesn’t exist and I will eat when I want and what I want’. And we are slowly moving back to me being able to have more influence over all that again. Morning snack is the one, that still needs work. And she’s still eating a narrower range of foods than before, very ARFID and very limited fruit and veg. So there’s a lot of work there also.

The anxiety before the ED starts according to dd’s ED coach is common. Dd’s ramped up during the year preceding onset. Dd is currently going through all those assessments as yes, you are right, they have to be eating enough and for a considerable length of time before it’s possible to correctly assess and ascertain whether any potential ND symptoms are ED or also ND. I always suspected ND with dd, but had been persuaded otherwise by those, who I thought would know more. Now I know differently. So if you do suspect, I would trust your gut and get your dd on waiting lists as soon as CAMHS agrees.

Edit - to add, idk anything about the drugs they give to help people eat as dd was too anxious to participate in CAMHS, then pulled the wool over the psychiatrist’s eyes a few weeks after the above holiday at 16 and signed herself off from the service.

@HappyRainbow123 the insatiable hunger is really common and I think you’re doing all the right things tbh. When you say 3 plus 3 doesn’t work, which bit doesn’t work?

Remind me how old your dd is?

I think it is v easy for ED patients to say they have no fear of food or weight gain and very easy then for psychs to discharge. my DC was diagnosed for a while with an ED, they were referred on to someone else who went down the too complex/disordered eating route which i agree is just a pretext to discharge people who aren't gaining weight.
Fwiw although they have never recovered, they are no worse with full autonomy and no treatment. In fact, i think they might be marginally better.
If i could go back, i would be shouting loudly to the psych about osfed which is classed as an ed and therefore falls under ed teams.

Hi everyone. Our appointment went as expected pretty much. The nurses were really wonderful but it was quite draining. DD was very responsive. He weighed her and took heart rate/bp. She’s 89% WFH and they said they’d like her to be 105 ish as she’s tall. She is able to continue school as she enjoys school and isn’t skipping meals. It’s the ingredients that’s the issue. He gave a few tips but we won’t have a treatment plan until they’ve present the case to the Drs on Wednesday. No more dancing or running for now. The worst is that I raised DofE and he said no to the practice (in 3 weeks) but didn’t rule out the one in July. But that all depends on how she responds of course. She came home in bits and said she didn’t want to wake up in the morning. She is angry at me for raising DofE. Now that’s the ONLY thing she wants. We’ve tried to implement some of his suggestions (adding glass of milk or yoghurt between snacks) but she said ‘we haven’t go a meal plan yet’ but I don’t see why we should wait! She seems to keep wanting to delay things. This morning has been a bit better. We have removed scales from the kitchen and she has been ok. Made bread for much and agreed to pizza later.

I’m glad it went ok. It will be good when you do have the meal plan, although as you say it is good to start now.

I presumed they would say no to D of E, I’m glad they haven’t ruled out July though. Hopefully that will be enough to keep her engaged.

How are you @Raspberrysins? xx

I’m glad it went ok @Raspberrysins even if your dd is pushing back. Unfortunately I don’t think your dd will be allowed to do the expedition if she hasn’t done the practice, not at silver. At least on the plus side, she seems to be reconciled to having a meal plan.

@Mummyoflittledragon we're going to talk to the school and see what they say. To be honest it’s the only thing she’s clinging onto right now.