Support thread 16 for parents and carers of young people with an eating disorder

[Mummyoflittledragon]

The old thread is almost full. I hope no one minds me starting a new one…

Good to hear your daughter is coming round @Weightlossworried . I get what you are saying about thinking about mini milestones like watching Bake Off before the ED. This time last year DD was struggling at college and I can't help pondering on how we managed that and whether we could have noticed and stemmed the ED signs sooner. And Bake Off always used to be an excuse for cakes for us too, last year she was still baking but not eating cake, now cake is a real challenge!

We have camhs today, and it's definitely made it a hard day for DD, nearly 2 hours getting through breakfast today. It is a large meal, including morning snack effectively to make the smaller lunch at school ok, and all very calm, but it takes all my patience on days like this. And DS has a sprained ankle, and DH is away this weekend, and my team at work is depleted and will be for some time, in one of our busiest periods. Definitely feel I'm at my limit at the moment. I need to remember DD is generally fine, if still displaying lots of ED signs, and just keep on nudging....

Glad to hear your DD is doing ok at uni @Girliefriendlikespuppies , thinking of you @Mummyoflittledragon and hope your DD is managing. Hope you're getting the support you need @littlebabycheeses99

CAMHs days are so tough @LurkyLurkyLou I hope your appointment goes well. You've got a lot on your plate at the moment, I hope you get some time to just breathe at some point!

I feel the same when I look back at DD struggling at school. I wonder if things would have been different if I'd moved schools or homeschooled or something.

@LurkyLurkyLou
Wow almost 2 hours to eat! It’s never been like this with dd due to demand avoidance. She either eats or doesn’t. And mostly eats alone or with her peers. You sound incredibly patient with your dd. Hopefully CAMHS went well today. And I hope you find a little time for yourself this weekend even with your dh away.

@Weightlossworried
I’m glad your dd managed to watch tv with you last night. Fingers crossed she will continue to come out of her shell. I do know what you mean about the before and after. The difference is so stark. Dd did cooking as her DofE skill.

As for changing schools, tbh I don’t think it’s entirely possible to avoid these things. My dd was in a large state school until the end of year 8. With lockdown, the first parents evening was June of year 8 and I was shocked at how much she was struggling in class with her peers (we now know this was undiagnosed SEN). She asked to go to private school for year 9 and chose the one most reminiscent of her former (state) village primary. Despite feeling more at ease, this didn’t stop her from becoming unwell. If anything, in a way, it swapped one issue for another.

As for dd, I haven’t heard much from her. I’ve been trying to get her to eat in the morning, but it’s just antagonising her. I’m going to suggest some easy to eat / prepare foods maybe by text. That will probably annoy her even more, however, I imagine she’s now seriously lacking in nutrients.

@Girliefriendlikespuppies
I hope your dd is getting on better than mine on the food front. My dd did take supplements until January this year and now flat refuses. As for things not working, they didn’t have hot water for a couple of days last week. Dd said she had cold showers. She’s been so pampered that stuff like this is character building.

@LurkyLurkyLou how did CAMHS go today? Hope it was ok and that your DD managed to eat more later on.

@Weightlossworried it's so hard isn't it wondering if you could have done things different? But I have to hold on to the fact that we did what we felt was best at the time.

@Mummyoflittledragon it must be really tough not being able to keep an eye on things. When will you next see your DD? I think your coach said to expect some weight loss in the first few weeks didn't she? Hopefully when your DD has settled she might be a bit more communicative with you?

Things here have been ok ish this week. DS seems to be eating better some days - I think the threat from college about not being able to attend if he didn't go to his medical appointments has hit home. He seems to be having reasonably regular appointments now and is going to them. I've just picked up a prescription for him and it's got iron tablets, multi vits and something else that I had to google but it was for B1 and specifically for people who are malnourished etc. So it seems like his bloods revealed a few issues. He has had anaemia before and was on tablets for 6 months - so I knew it wouldn't be long before he was anaemic again.

We have had no communication from CAMHS and had to ring them about his Sertraline - as we've come to the end of his prescription from his psychiatrist (who has now withdrawn her services due to lack of engagement). Apparently they have asked the GP to continue with the prescription but we haven't heard anything further and the GP won't talk to us. So now we're in a position where he has no Sertraline - and we can't just stop him suddenly especially on 100mg. Luckily I have some so I've just been using mine for him in the interim (which I really shouldn't be doing) but what choice do I have?

@Mummyoflittledragon my dd had an issue with her shower as well 🙈😂 I agree re character building, my old student houses were pretty grim and I survived 😉😂 I’m planning to see dd the wend after next….

@Weightlossworried I think it’s normal to look for reasons and think what if but I agree with @Mummyoflittledragon sometimes these things happen no matter what you do. There was a sense of inevitably with dd, she struggled with puberty, has always struggled with feeling different and low self esteem so covid just gave her the space to really allow the ED to flourish. IMO if it wasn’t for covid she would still have developed the ED but at some other point.

@littlebabycheeses99 that’s rubbish re the antidepressants! The Gp needs to sort that out ASAP.

That's really good news about him attending appointments @littlebabycheeses99 but so frustrating about the sertraline. If medical professionals are going to refuse to communicate with you they should at least be taking proper care of him.

Thanks all, It's so good to have a community that understands
So DD had a weight loss, 2kg in a month. It was a bit of a shock, which of course makes us feel bad for not noticing. We actually had realised last week was a bad one, everything was harder and she had a couple of very wobbly days, but she seemed more on track this week until yesterday came. So it may be that she/we have already started to turn around whatever has gone awry, but then yesterday was tough again.
From our discussions with camhs, and hers with them individually, our issue is that she is enjoying exercise again, we believe not to excess, but the snacks she has to have when she does exercise aren't enough, because she still has so many fear foods. That's been the case for a while, but we were managing to maintain weight, but clearly that was a precarious position and any wobbles or increase in exercise have knocked us back.
She had the larger agreed snack last night, at her own initiation as DH and I were out for a bit, and we have to send details of the snacks to camhs for their suggestions to boost those, keep an eye, and restrict exercise more if needs be
So we have a plan, it's just not going to be easy
I do feel like I'm at my limit, but I had a wobble to DH this morning, changed to wfh today to save travel time, and am starting to feel stronger to do this

@LurkyLurkyLou our record pre-treatment for finishing a single snack was 5 hours! You did well to get her through it, when she was an outpatient DD would never eat or drink before going to be weighed. Sorry to hear your DD has lost weight this month but you have a plan and you're providing brilliant support.

Fingers crossed for the kids just started at uni and college, hopefully they'll see others eating normally (for students!) and that will help.

@littlebabycheeses99 that's shocking that the psychiatrist hasn't taken responsibility for making sure the prescribing continues - you can't just let a dosage like that lapse!

@Weightlossworried I agree you can't second guess all your decisions, you did the best you could with the information you had at the time. We did go down the road of changing schools and then home schooling, still ended up with the ED, so you just can't ever know. You have absolutely done your best for your child and are continuing to do so.

Hopefully my DD will be discharged from the inpatient ward in about 10 days, she is now fully weight restored. I've got mixed feelings to be honest. I want her home, but she's been having weekends out recently and the anorexic behaviours came right back when eating at home - not to the same extent as before, but you can definitely see how it would spiral again. So, it's probably going to be challenging.

I noticed there was some chat about periods a couple of days ago, and I just wanted to ask, at what point did they come back in your experience? DD's stopped very quickly when she started losing weight, and there's no sign of them returning - something to be concerned about?

You're amazing @LurkyLurkyLou, finding reserves of strength when you're at your limit. It's awful when you get an unexpected weight loss like that but it's good you have a plan and it sounds like your DD in board with it. Fingers crossed that, like you say, you're already turning it around.

Thanks @StressedANmum. I've not been where you are but I can well imagine the mixed feelings. Is there a solid plan in place to support you both when she comes out? It must be frustrating to see her weight restored but still struggling with the behaviours.

When we asked about periods because DD has had some spotting at even a very low weight, the nurse said some girls get them back easier than others and they're not entirely sure why that is.

I found with my dd she has to be a certain weight to have periods (for my dd was around 54kgs as she’s tall). That was around the weight she was when her periods originally started and she needed to be back to there for them to start again iyswim.

For some teens it seems to be less about their weight and more about the regular intake of food.

I watched an interesting programme on the human body last night which talked about girls needing to have a certsin amount of fat on them to trigger starting periods.

@littlebabycheeses99
It is good news that your ds is eating a bit more, engaging a bit with the GP and has been prescribed supplements. I hope you manage to get the prescription sorted for sertraline. Surely they will issue him some pills?

Now that he is a little more nourished, have you thought about getting your ds to allow you to talk to the GP on his behalf? If you just go to the GP, get the form, fill it in and just put it under his nose to sign. Explain it would be easier for him to get the medication if you’re allowed to talk to them. Just make it about that one topic. And repeat it’s just about that and ensuring he gets the right meds he needs. Just a thought.

This is the approach the coach told me to take with dd and all the university and disability forms and it worked. I then filled them in (as her) how I thought they should be and told dd it will trigger her tutor wanting to talk to her and them wanting to do a risk assessment on her.

@LurkyLurkyLou
Don’t beat yourself up. You’ve done so well. It’s so easy to miss weight loss when you’re living with your dd every day. I’ve been told at certain stages people could see dd lost weight and another time she put on weight and I didn’t notice. It’s hard to see a 2kg difference when you’re on the coal face. You’re so busy busting a gut to make sure they’ll eat. And trying to not cave to every manipulative action going. It is so good to see that your dd continues to be on board and participating in her recovery. It makes such a difference. And this is just a blip. You will get there.

@StressedANmum
My dd’s periods took quite a while to come back and she lost them a couple of times again when she relapsed. Because I don’t have weights for her, I can’t tell you a point. However, as her weight changed very little over a 2 year period (when I’ve managed to get weights), I would think there is a cut off weight for her. And she will have just fluctuated a bit and dropped under when relapsing.

They do take a while to come back even when that point is reached. Firstly, your dd is more likely to get spotting and then a full blown period at some stage. They will probably also take some time to re regulate to the 28 day cycle or whatever she was before.

I wouldn’t worry drastically about it at this stage as it could be a few months yet even though your dd is weight restored. Your dd’s body has been put through a lot of stress. And the weight restoration has been pretty fast. So things may take a little time to catch up. Perhaps you could ask what they think at hospital?

As @Weightlossworried said, some girls get them back easier than others. I know someone, whose mum told me she never lost them, even her lowest weight.

@Girliefriendlikespuppies
I hope the shower is fixed for your dd. I know what you mean about student accommodation. The only place I had central heating was in halls and they were very tired. As for the student houses, definitely character building and grim. Ice on the inside of the windows in the bathroom in the winter etc.

As for the tv programme, I was told by someone medical that once girls reach a certain weight they’re likely to start getting periods. I can’t remember what that weight is. And as girls are hitting that weight younger, their periods are starting in general a little earlier than in previous decades.

Dd has put on weight @littlebabycheeses99. I know this only because I helped her to weigh herself and her bag back in July and when we flew last week for the funeral. I think the coach wasn’t anticipating she’d eat so much junk. I now think dd may continue to gain, because she’s subsisting on mainly processed snack foods. She basically admitted to me that she’s not eating until lunchtime, often late lunch and not buying sandwiches, so not much protein. Not much in the way of fruit and veg. Very ARFID.

Eating such a poor diet isn’t good for her mental health. And I don’t know when we are next seeing dd. It was supposed to be next week. She’s doing fine albeit severely lacking in nutrients and has been quite communicative and chatty. Just from this, I can tell she’s eating more. Just the concern is now she will react to the gain when she is so nutrient depleted.

And she’s struck up a friendship with a couple of girls in her apartment, so she’s very happy atm. We may end up going to see her even though she said she didn’t want that.

@Mummyoflittledragon if it’s any consolation my diet has always been pretty dire, it’s better now (although I still have to force myself to eat fruit and veg) but as a child and teen it was restricted to processed carbs. I think when I was at uni all I ate was toast and crisps 🙈 I think I probably have an element of ARFID, my colleague told me my lunch today was similar to her kids lunch (cheese sandwich, crisps and a yogurt 😂)

I have similar concerns for my dd, she has been out every night since I dropped her off, she told me today she didn’t get up until 3pm. It’s still early days so I’m hoping she’ll settle down a bit.

@Girliefriendlikespuppies
Wow 3pm is very late to get up. My dd doesn’t stay in bed to this extent. Doesn’t mean she will eat though. Hopefully your dd will burn herself and not want to do that again.

My dd just basically slept at every opportunity last Thursday / Friday / Saturday. Apparently she went to bed at 7.30 am Wednesday morning, slept very few of hours, bed Wednesday night (at home) around midnight, up 5.15am for the flight on Thursday. And was on catch up until she disappeared back to university on Saturday afternoon, about half an hour after we arrived home.

I have a feeling my dd hasn’t learned that lesson, as the funeral disturbed the process.

As for how you ate, just me the freak, who actually cooked for herself at university then 😂😂. It’s where I learned to batch cook, not that I like cooking. What you ate sounds very ARFID. Funny you should mention your lunch. My dd until the last couple of weeks, had been eating the same sandwich and crisps for about 2 years.

So I've realised that DS is making himself sick after every single meal pretty much - and he's not even eating a lot (certainly not enough for a 17 year old boy).

CAMHS will not speak to us at all and tell us what the plans are with him and what support is in place. We have no clue.

I'm at a complete loss as to what to do anymore. We have passed information on the the GP and CAMHS but DS has access to his medical records and goes absolutely ballistic. The last time we did it he accused us of lying and was very very angry.

He wants to go to a concert in a different city next week and stay over at a friends house. If we say no he'll probably do it anyway - but we don't know how to approach that either.

He had bloods with the GP last week and has a load of tablets now as a consequence. He has a GP appointment again next week. We don't know if he is being weighed or assessed in any way. We are literally in the dark.

Does anybody have any advice please?

I'm sorry @littlebabycheeses99 I don't know what to advise. I just wanted to acknowledge your post and say how sorry I am that you're still being blocked by CAMHs.

My gut feeling is that you should pass the information on regardless of him getting angry - but I realise that's easy for me to say.

I also feel you should do your best to stop him going to the concert, but again that's easy for me to say, not at all easy for you to do. Is this one of the friends that has called you in the past? He does seem to have friends who look out for him a bit.

@littlebabycheeses99 it is good you have noticed what he is doing. I think I would call his college tutor dor advice. They will be able to speak to people on your behalf. CAMHs etc will speak to college.

Blood tests will show that he is making himself sick, so although I’m sure he is denying it’s there will be proof he is.

I know you’re banging your head on a brick wall, but I would keep reporting it to his GP etc as you are the only ones that really know what is going on xx

@Weightlossworried no it's somebody we haven't heard of.

He's been puking all evening. He mentioned the gig again tonight and I said to him 'you're very poorly' and that we were worried about him collapsing.

It was the wrong thing to say evidently. He's stropped off (as usual). He's very very angry all the time.

I just don't know what to say / what to do or which way to turn.

@Pearl97 yes I think I will speak to his college tutor on Monday.

Every time I say something I'm so afraid that he's going to go off and hurt himself because he gets so wound up. And I just seem to say the wrong thing all the time.

I presume he came home @littlebabycheeses99. Once the weather turns, it isn’t going to be ok for him to go stomping off if he’s going to be spending a considerable amount of time outside.

Dd used to go off like this and she also sometimes turned off Snapchat location for her friends. Her friend found her one time in the middle of a field at about 10.30/11pm during the summer months. A couple of times before that, I got her location and forced her to get in the car and come home. She was like a machine and wouldn’t stop walking.

As for how to speak to your ds, the least confrontational, the better. I get you feel massively manipulated, silenced, afraid of what he might do, if he is going to strop off and where he will go.

I get the immense pressure. He knows you were basically saying no. Idk if you can stop him without getting physical. He doesn’t have the capacity to understand. Try to connect with him as much as possible, with the message being ‘we love you, we just want you to be safe’.

We did physically stop dd going off at 16. It was cold and dark and she was like a wild animal. She then called the police on us, as in 999. They came out a couple of days later and treated it as parental choice.

I also think you should liaise with college. They will get guidance from CAMHS. Ask if there are any conditions thee college considers he needs to meet to be ok with him going? If you can find that, this becomes your currency.

I thought I would do an update as it’s been a while. After initially eating quite well following her discharge from hospital DD has now started restricting again and her intake is as low as 500 calories some days. She has lost 2kg We saw the ED team yesterday and they are very concerned and have basically told her she’s got a week to turn it around before they escalate the treatment and send her back to hospital or the intensive service. I did manage to take her out for a meal last night as a start and she ate well - let’s see how today goes.
DDs mood is also very low and she keeps saying she does not want to be here.. she also has frequent episodes where she hits herself or bangs her head in the door or wall. When I say to her that she’s worse now that’s she’s restricting she gets angry at me. CAHMS are aware and want to put more in place for her - I had a long conversation with the duty team and they are now deciding what to do.
being back at school is definitely hard on DD, she’s socially isolated and it’s year 11. We have been offered a special setting - a quiet place for kids who struggle. They just do 3h a day and focus on the biggest learning needs.
We will visit next week and make a decision on whether she should move there. I’m hoping it will take some pressure off her.

to top it all I have been promoted at work and given extra responsibilities. I honestly don’t know how to keep all the plates spinning, I think I’m at the edge of my tolerance.

@littlebabycheeses99 I’m sorry to hear things are difficult with your DS and CAHMS are still keeping you in the dark. I agree going via college is a good strategy although I would also try cahms direct, reiterating you are very concerned and asking if they have given any more thought to breaching confidentiality. I’d also ask what the safety plan is and if they have considered an admission.

@Weightlossworried great news your DD got her period back. Where is now in terms of wfh? How long has she been eating?

@10YellowTulips I'm so sorry to hear she's going backwards. This illness is just awful. I hope the visit to the special setting goes ok, it could really help if school is a big issue for her.

DD hasn't been weighed for the last few weeks. But she was 82% WFH last weigh in. She has had spotting before despite her oestrogen levels being low. I'm not sure how much of a proper period this was as she's not been very communicative lately. Eating wise she's been pretty consistent the whole time, eating about three quarters of her meal plan. The bit of weight restoration we've had has been us making very calorie dense evening meals and her relaxing when with friends. She's in college now and having lunch there 3 times a week. I'm very anxious about the next weigh in as I guess we find out then whether she is eating the proper lunch she says she's having!

I really hope your DD turns things around this week x

@10YellowTulips it is nice to hear from you, I was hoping for a better update. I am glad the ED team have given her time.

The new school setting sounds good. It’s so hard to know what’s best. We’re here for you.

@Weightlossworried oh that weigh in feeling! The feeling of doom we have discussed so much. I’m really glad you’ve gone to once a month, it’s good they are finally listening to you. Are they aiming for 100 percent weight to height?

@Mummyoflittledragon I really have a good feeling about your daughter at Uni, I feel this could be her time. Lots of young women these days are very good at helping each other. I think your daughter will want to be ‘normal’. I’ve everything crossed for you all.

@littlebabycheeses99 I really do think you need to tell college everything. They have a duty of care to look after your son, and when they have the information they will have to contact CAMHS etc, although they should be in regular contact with them.

Thinking of everyone. I hope you can enjoy the sunshine this weekend xx

They haven't given us a percentage that they're aiming for @Pearl97 just said they look at everything including obs, blood test results etc.

I'm actually not sure if they will weigh her Thursday, they agreed monthly but they're not good at doing the stuff they agree to! They also said they'd see her fortnightly around her college lessons but I got a call yesterday saying they wanted a second appointment next week with the psychiatrist right in the middle of her favourite lessons. She has understandably said she's not going. So that will be a fun phone call next week.

@Weightlossworried I wish they would e mail not call! I don’t know how they think everyone can just make any appointment they make with them!

I hope it all goes well this week. I’m really pleased DD is enjoying college. This could really help with her progress. I wouldn’t let them make her miss college to see them. She’s only a few weeks in and needs to go as much as she can. Well done you for taking the control you have. She’s over 80 pc wth now so they can’t stop her going to college xx

@10YellowTulips
It’s good to hear from you. I’m sorry that things have regressed considerably again. I am hoping that this week will nudge your dd into action.

I think the quieter setting could perhaps work well for her and help her feel less isolated. Regular school can be very disruptive and rambunctious, especially in the last couple of years, which doesn’t sound like your dd needs atm. My dd loved all of that stuff, has lots of boy mates, however, it can be especially hard and intimidating for those like your dd, who don’t.

Idk if moving school will mean she ends up sitting fewer exams, hopefully not. It is infuriating that colleges no longer offer all subjects for GCSE resit.

@Weightlossworried
I agree with you about not taking your dd out of lessons. She often doesn’t react well to CAMHS visits, so I would be eager to maintain what she does enjoy doing. As she gets older, these things are increasingly by consent. And it’s better she sticks with CAMHS to 18 (if needed until then), than signing herself off early.

As for weight gain being very much to do with preparing a calorie dense meal or relaxing with friends, I totally get that. Until now, this has always been the same for my dd.

@Pearl97
You aren’t the only one, who has said my dd will want to copy the other girls and be ‘normal’ like them. I do agree. She copies a lot. I think she’s made some positive friendships already and likes her flatmates. Dh and I went out for a quick drink last night and one of her friends works in the pub. He (dd’s friend) dropped her back after the funeral and told me her flatmates seem nice. She’s only an hour tops from home, 45 mins in the car, which means plenty of friends will visit.

The 2 girls she’s closest to in her flat seem nice and I am hoping they have very uncomplicated relationships with their parents. Dd already mentioned one of the girls is close with her family. That makes a lot of difference, because dd won’t want to be the odd one out there either. Dd’s primary friend over the past 2 years has a very difficult relationship with her parents. And it became more and more apparent the friend was actively encouraging dd to pull away from us.

I wish they'd email too @Pearl97 , I turn into a gibbering wreck when they put me on the spot. I should have just refused the appointment there and then but as daft as it sounds I was too scared. DH is going to ring Monday to tell them she can't make it.

I agree @Mummyoflittledragon I want her to stick with CAMHs too and if I try and force her to do this second appointment it'll do more harm than good.

The copying friends is such a double edged sword isn't it? Copying the right kind of friends is great but it can easily go the other way!