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!

Oh Nan you've had more than your fair share of shit with this horrific illness. At least she's safe, like you say. If only she'd try some medication. It's early days for my dd with fluoxetine but I've seen a few happier glimmers tonight and we've managed a rare chat. It might just be placebo at this stage but her actually trying a medication and talking about wanting to feel better is huge. It will probably all come crashing down now I've said that.
The holidays with your ds sound great. A bit of normality for the rest of that is very needed. Sending you and your dd love x

At what point can médics say that anti depressants or similar are needed and section them in order to ensure they are taken? Would* this help Nan?*

So sorry @NanFlanders phone calls like those must be awful. Your poor DD, she must be really struggling. I hope today is better for you all. That's so hard about the medication, it sounds like it could really help her. My DD is also very resistant to the idea of being medicated, although she's so much younger, but I think her reasoning is more because the pills would be given 30 minutes before meals to reduce mealtime anxiety and one of her fears is "eating" between meals/outwith very set times. As @NCTDN said, I wonder whether they can/would section for medication if they thought it would make a significant difference?
Holiday with DS sounds great. We're doing similar in a couple of weeks, fortunately we'd only booked a week away at a fairly local (2 hours away) destination this summer so we're going to tag team the week.

Hi All just checking in after getting back from holiday, we had a nice week, the ED is always there but I was able to work round it. It helped that we were self catering so meals and snacks remained similar, we ate out a few times which was fine.

It was nice to spend some time with dd and generally her mood has been pretty good, we both got our hair done Ystd (cut and colour) and even she was able to acknowledge how lovely she looked which is the first time in a very long time!

Nan I feel so sad for your poor dd, I don't really have any advice other than the unit must have experienced this with other teens? Have they seriously not got any more ideas? I agree re medication, she's not well enough to refuse it surely? I know with some anti psychotic meds they can be given via injection, I wonder if that is a possibility? The psychiatrist should be advising on this though. A holiday with your ds sounds like a great idea.

Swatty I hope you're okay, If it makes you feel any better your dd doesn't hate you she's just angry and you're the easy target. The fact she can act out these feelings onto you means she is so secure of your love that she can project all the anger and hatred she feels within herself onto you and knows you'll still be there for her.

I hope that doesn't sound patronising 🙈 it definitely helps me when dd is being vile to remember she's trying to manage feelings that are so big and overwhelming that they spill out onto everyone else.

I hope everyone else is doing okay?

Thanks for checking in. @NanFlanders I'm so sorry to hear what you're going through, and it does rather put things into perspective. I've not been well this weekend so have left everything to DH. No idea how much has gone in, - but she's happier not having me controlling everything. She's basically shut herself away in her room for 3 days, and I've kinda left her there. Feel like our relationship is at a really low point but haven't got anything more to give right now.

Question re in-patient meal plans. From what I am seeing (and what she tells me) they are providing DD with less food (smaller portions) than what she was eating at home! I understand they are building up (refeeding syndrome etc.) but I don't see how she's going to gain weight at this rate! I have a meeting with the care manager next week and will raise it then, and she will have been weighed again by then too, but I don't understand, after we had an hour long meeting with the dietician when she was admitted, why her meal plan seems to have fewer calories than she was already eating? If she's gained weight it will be because she's been resting, which is clearly good, but I feel its a backward step in her eating.
Anyone had similar? Do I keep quiet and trust the process or should I raise it?

@NanFlanders

I had not thought of using unpaid parental leave. I will explore that. I still hope we can sort some lunch support for September. I will probably do the last week this school year (provided she can go back but we have had a good weight restoration so I hope that is possible). Thanks for the idea. It had not crossed my mind.

@GrannyRoberts Hope DD is coping fine in the unit. Must be hard as she is so young.

@LaCerbiatta How are things with DD?

@Curlyhairedassasin she's doing a bit better thank you, but she's still finding it really hard without us (and we are missing her so much). She's trying hard with the meals and has accepted the enforced rest (albeit with a lot of eye rollling). She's calmer than she was at home and more able to focus on things she used to enjoy like reading, writing,.drawing. We've actually had some really nice moments with her. Then something happens and it's clear how much of a grip ED has on her and why she's there. But overall a bit more settled, thank you.

Granny is definitely raise it, meal plans need to be high calorie/high fat as soon as the risk of refeeding syndrome is over. Unfortunately the meal plans can be ridiculously insufficient so yes challenge it.

Girliefriendlikespuppies so glad your holiday went well. I teared up reading that your dd thought she looked lovely after getting her hair done ❤️

Swatty I hope you're better soon. Good that your dh can take over when needed. It's thoroughly shit when they shut you off. I'm sadly quite used to it now. Dd was doing it way before ED entered our lives.

We had a nice evening yesterday but she's not spoken to me today yet.

@GrannyRoberts
DD's meal plan in hospital and for admission was not great. Semi skimmed milk, low fat yoghurt. We changed the meal plan and asked the dietician/ED to sign it off so it came from the official source (the only way DD would accept it). I would definitely raise it. DD only started really recovering weight after we upped the plan. the hospital plan had very little weight gain despite bed rest.

DD is eating a lot more and only gaining a few hundred grams a week (but steadily). It's ridiculous how many calories are needed post AN to restore weight (I guess a lot of repair goes on in the body but not sure).

joining as ds seems to be binge eating. No idea what to do. I’m heading to the doctors to rule out any illness but I honestly think it’s more anxiety related. Ds has additional needs of asd and adhd so I didn’t know whether it’s illness related. I’m cleaning vomit off the floors daily at least 3 times a day and I’ve no idea what to do as he struggles with explaining why he does this

@Holly03 how old is he?

Hi Holly how long has he been making himself sick? How old is he?

The GP will need to check bloods as being sick can affect the electrolytes.

@Curlyhairedassasin thanks I will raise it. I cant believe low fat products were on your DD's plan! Good that you were able to get it changed but what was rationale there? The ward dietician was off last week so the plan was pulled together by another dietician from a different ward. I'll ask for a meeting with the ward dietician this week and raise my concerns. I almost feel like, once they are happy she's medically stable (still on 4 hourly obs), DD would be better off as a day patient eating breakfast and dinner (and supper) at home. They are aiming for 2500 calories but from what I have read that seems really low for recovery. It all seems a bit cloak and dagger at the moment and I have a lot of unanswered questions..

@GrannyRoberts DDs plan was very strict, although she was on a paediatric ward not psychiatric. Unlike others on here, I wasn't allowed to be there at mealtimes so it obviously varies from one hospital to another.

@GrannyRoberts

DD refused the heavier foods on and ward and negotiated lower fat alternatives. she. blank point refused FF yoghurt. She (or better say he isr anorexia) ruled the dietician to some extent. But we were on a general paeds ward for re-feeding and medical stabilisation. Not an ED/psych ward for treatment/therapy... I guess that played in there as they were only tasked to stabilise the physical side and aim was to discharge once stable and eating an acceptable mealplan. We were on 2500 cals after about 3 weeks. one week in, we had a mealplan with a lot less.

@SwattyPie Thanks - don't feel though that our family experience "puts things into perspective_. DH, DS and I were actually far more upset when we were at home trying to do FBT and DD was being either cold or aggressive. I totally feel for you.
@Girliefriendlikespuppies @NCTDN @BagpussSaggyOldClothCat - Thanks for your input. I have put on this week's parental feedback that we would like them to consider meds without consent. We had a hard visit yesterday - she told us she doesn't want us to think about her, and she doesn't want us to say "I love you" any more. (The ED can go to hell with that one!), and both of the staff members said they felt meds would help her. I think the bar is very high for meds without consent though.
@GrannyRoberts In my DD's unit, they adjust the meal plan until the patient is gaining 500g per week. My DD is currently on 1400 kcal per day, as her metabolism is awry at the moment.
@Holly03 Sorry you find yourself here - but welcome. Hope the GP appointment is helpful. You might want to check out Beat eating disorders site and go in armed with info, as GPs are often very poorly informed about EDs and resources are so short it often tends to be only anorexia that gets intervention. I understand certain SSRIs can be helpful for bulimia, but it depends on your DS' age.

Blimey nan that calorie intake seems very low, tbh I'd want that calorie intake doubled before trying meds as the low mood/anxiety could be partly due to not getting enough food in. If her metabolism is slow then more food is needed to get it back on track?

I really struggle to understand why the professionals in these units also seem to be scared of weight gain, surely by being stingy with the food it just reinforces the belief that too much food = too much weight gain = is a bad thing.

I don't understand it.

Hi Holly03

So sorry you've found yourself here and that your poor ds is struggling. I hope the gp appointment goes well and they are a good one that understands eating disorders. Please don't hesitate to ask to see someone else if you come away with no answers. In some areas you can self refer to your local Camhs Eating Disorder service.

Most of us here have Anorexic dc I think. There's a really good Facebook group called Eating Disorders Parent/Carer Support UK (EDSUK) which is a great source of information and you can use the search function to find previous posts which refer to binging and Bulimia if you don't want to start your own thread, or you can post anonymously on there x

@Girliefriendlikespuppies I know. And I know that fats are good for brain recovery. I've tried to interest DD in Tabitha Farrar, who writes brilliantly on this, but she's really resistant. We've generally tried to trust that the professionals know what they're doing, but that hasn't really been borne out so far! Recently, I 've been thinking a lot about an appointment about a year ago when the self harm came to light (to us - apparently the team had know about it for ages), where they advised us to let DD keep self-harming. At the time, I was just taken aback, but now, when I think about it, I get really mad. Apparently, CAMHS gave the same advise to a friend whose (non-ED) daughter was self-harming, and she just decided that was stupid advice and locked the razors away. As did we.

It must be so frustrating for you nan, i suppose it's a bit chicken and egg with the meds, if the meds help the food go in then great but if the food went in the meds might not be needed...

I have another teen dilemma here, dd wants to spend the night at her boyfriends house 😕 I'm not sure I'm ready for this! Im not naive and dd is taking contraception but it just seems young to be allowing boy/girl sleepovers even without factoring in the ED.

I know they're not that young (17!) but I'm struggling to believe it! Doesn't feel that long ago dd was playing with her playmobil, parenting teens is hard on so many levels 😕

@Girliefriendlikespuppies Eek. Well, at least she is on contraception. If she is is sexually active, I guess it's better that she is somewhere safe and comfortable? Obviously, you need to decide for yourself what is acceptable in your house, but would you feel better if it was under your roof? I know what you mean though - they seem so young, especially with all the developmental time that a) the pandemic and b) this horrible illness has robbed them of. FWIW, I would have thought that being in love is a good distraction from the ED - but then I'm seeing everything through the ED lens at the moment. (DD's consultant gave as an example of things he might not share with us, her trying a spliff. My first thought was, "Well, if it gave her the munchies, it might not be so bad...."!)

Girliefriendlikespuppies Yes our dc having intimate relationships is really difficult to think about even without ED🙈

A healthy relationship should, hopefully, enhance her life and give her motivation to get well - think of all those happy endorphins you get from being in love! So as difficult as it is when it's your own dd I'd look at is as a positive development and just keep checking in that he's being respectful to her etc

I second that - DD is in love here and quite frankly, I am almost past caring about what they are up to behind closed doors 😬 (they're not, yet..., still very much at the kissing and holding hands stage, but things change, I know). Is that terrible? He's been so good for her, and I like him. I figure it's better than a string of different people. Besides, I see this as normal, healthy teen experiences, much better than ED ones. Besides, she's so much nicer to me when he's around!!!

Hang on in there every one. It's a new week. May this week be better than last.