Support thread 10 for parents of young people with an eating disorder

[Lottsbiffandsmudge]

Hi guys
Here is our new thread. I will add a link to it in Thread 9

Another massive step today. I put out Advent calendars with breakfast. I had seen DD looking at them in Aldi. The ED tried to make her compensate in advance - I noticed her trying to replace cow's milk with plant milk, but made her swap back, then didn't pour herself juice with her cereal, so I made her have it afterwards. She procrastinated for ages, and DS was late for school as he hung around to eat his choc at the same time. BUT SHE DID IT. She had a chocolate for the first time in years. So happy 😊

@nan that's amazing!

Amazing, nan!

Such a tough place. Sorry its so hard. I remember the anger and violence well.... its v hard to cope with.
What do the ED team suggest? As they are the ones asking you to remove scales....

Amazing @NanFlanders son pleased for your DD and you.

lotts, I do not find the ED team overly helpful. We just get advice such as remove scales or change meal plan or they set new targets such having a drink in Starbucks to which DD agrees in the session - because she knows saying yes will shut them up. The moment we walk out she tells me it's not going to happen. but no real help when we hot roadblocks. Our appointments are mainly a weigh in. there is no therapy, nothing to support us as a family. I just don't know what to expect but others here seem to have family therapy and other things. FTB has never really worked that well for DD (we have been suspecting for a while that she is on the spectrum and psychiatrist also thinks so). No idea if that has any bearing on the treatment. But right now we are just stuck. They tried a bit talking therapy (or whatever that is) with her but she doesn't talk either. She can be socially very shy and awkward. She just won't engage with them on that level.
Sorry for the long moan. I know others struggle a lot more than us. At least she is coping with 3 + 3 albeit in a restricted way.
She just gets so violent then I push too much and is mainly attacking me. I am scared of her attacks. She really loses it and as skinny as she is, she has a kick.

I think what I did was sticking to her shoddy 3+3 plan and adding in butter (with scale as that is the only one she will accept). Her weight has been very slowly creeping up at some point. 200-300 gr per week. My thinking was that i can live with that as long as her weight is catching up, albeit slowly. And then I was hoping for the brain recovery at some point once we get to a higher WFH. It's probably not the 'right' approach but manageable for DD and me with not too much impact on the rest of the family. her sister cried the others morning for a few hours as she finds the outburst so stressful (DD also targets her a lot and is verbally very nasty to her - she is just so resentful of the fact that her sister needs me so much due to her complex needs and makes no attempts to hide the hate and contempt she has for her. her sister is the most gentle thing and cannot take it. It's soul destroying at times).

I'm sorry @Curlyhairedassasin would the ed team come out for meal support? We've found that super helpful.
Congratulations @NanFlanders that so nice to hear. Advent calendar was a disaster here and sent him into a vile mood. Off for weigh in 😬

prosecco, they don't really come out unless it's a crisis mode. The lady we see came out once a long while ago and couldn't get DD to eat either. But that was pre-hospital admission on Spring.

nan inspired me. I am gonna get myself now a chocolate advent calendar :).

@Curlyhairedassasin that sounds wearying especially when your DH won't engage. I can't remember whether I mentioned this before but the majority of parents in a group I attended mentioned ASD diagnoses or strong traits. (I suspect this w my own DD but although this was there pre AN it's not something she wants to explore) I have heard that those traits can just appear for the duration of the AN so that can be confusing.There was some research at Kings around a specific plan for ND AN sufferers so suggests different approaches needed...I dont know if this got put into action and obviously this is London based. I think not all children are going to get to recovery in the same exact way.

@NanFlanders wonderful news in the advent calendar 😁

@ReineDeSaba the Peace Pathway is for autism and ED. https://www.peacepathway.org/patients/resources

My DD had a lot of OCD traits before the ED, there's a lot of neurodiversity in my family and by secondary school age DD definitely was showing these OCD/ neurodivergent/ autism traits. She had very quirky friends and did well academically so it wasn't hard to manage at home or at school. The ED has made them so much more intense and harder to manage. I'm hoping it will all recede to manageable levels when she's in recovery.

I've got a question about GCSEs. DD is in year 10, we're only about 10 months into the ED, she's about 93wfh, eating the majority of the 3+3. Although academically she's doing well, I think the stress of the exams and her perfectionist drive might push her over the edge. It's insane the amount of exams they have. I would rather forget about them but she would hate that too. What are you all doing about exams?

Thank you for the link @Eyelashesoffire
Your DD sounds v much like mine. Our DD was diagnosed mid GCSEs and in retrospect was a total mess. She ended up doing v well (we thought she was so mentally starved she could easily have failed so were surprised) which then worried us as we thought that would encourage her to continue w the ED (I passed my exams even w AN etc etc) but actually wanting to go back to school to do A levels and enjoy 6th form socializing opportunities has been a good motivator for her. Her work load seems insane and I worry about her perfectionism (teachers warn her too) but hopefully bringing that up openly means it's not going to manifest in her diet again. Sorry I appreciate no actual advice here but you are not alone in holding that fear and under the circumstances it totally makes sense

@Curlyhairedassasin you are doing an amazing job in very very difficult circumstances. Whilst I understand the rationale behind not weighing out food, you know your DD best and if this is how you can get those extra calories in then I'd say you do what you need to do. As @nan said, sometimes weighing and measuring can also help to keep the portions at a decent size (i.e. preventing temptation to gradually reduce portions). Honestly at 90% i would be focusing on the weight still and doing whatever it takes to get that up. Certainly that's what we've done. DD is 98% now (static last week, lost 200g this week and grew a cm, trying not to panic about that..) and we're nowhere near tackling fear foods, still very much eating to mealplan (although she will eat homecooked food but unfortunately puddings, smoothies, milkshakes etc are all firmly off the menu). The ED team know about eating disorders, they don't know your DD or, I imagine, the details of your family dynamic. We have to look out for our other children and sometimes that means deviating from the textbook. Others may well disagree but I just wanted to offer support to your approach and recognition that one size will never fit all.

@Curlyhairedassasin - do the team have a rationale for why they think removing the scale is important now? Are they trying to tackle rigidity or something? If I were you I would be tempted to go back to weighing it for the time being, knowing she is steadily gaining, with the hope that once she is more weight restored she will find it easier to cope with the anxiety about eating fat unweighed.

We tend to just 'make' dd eat what we say (she doesn't know how much fat and calories are in her foods) and weather the aggression and bad behaviour etc (when I say weather it, I find it completely upsetting and draining), but if any of my other kids were being unsettled to a greater degree than they already are then we would take a different approach. You have to do what's ok for your whole family... Surely your ed team should be helping you figure out what that might look like? Ironically sounds like they are trying to tackle rigidity by being rigid!

Maybe tackling the weighing thing, and other 'rigidity' can happen in a compassionate way in the future, but at the moment my focus would only be on gain personally. If someone is neurodivergent, being rigid can be about trying to cope with anxiety usually, and so that needs thought - stripping things away isn't usually a good way of making someone feel better, and especially in a brain that's not yet weight restored.

@NanFlanders - oh that's amazing about the advent!! I dodged it this year and just got a non food one because I had no brain space to think it through. Well done you and your dd ❤️

@NanFlanders delighted to hear about the advent calendar! Thank you for sharing, it's so heartening to hear about these small but significant successes.

@greydoor your comment around rigidity over rigidity made me laugh-ironic isn't it and nodding along to one size wont fit all!

@greydoor - I think by removing the scales, they want to enforce 'normal' eating behaviours and losing up her rigidity.

If someone is neurodivergent, being rigid can be about trying to cope with anxiety usually, and so that needs thought - stripping things away isn't usually a good way of making someone feel better, and especially in a brain that's not yet weight restored.

I think you put that so much better than me but I think this is what is happening now. I am not sure what can be achieved by essentially removing butter again (as there is no way she will accept it without weighing)

@Curlyhairedassasin I agree with one size does not fit all, you have to find your own way through this shit show! I have found this thread really useful for seeing that. I think that other people, including your ED team, can give you ideas - which you examine and try out to see if they fit your family. We're all juggling different factors - siblings, family support (or lack of it!). You need to pick your battles. The brain needs fat.

@Curlyhairedassasin I agree with one size does not fit all, you have to find your own way through this shit show! I have found this thread really useful for seeing that. I think that other people, including your ED team, can give you ideas - which you examine and try out to see if they fit your family. We're all juggling different factors - siblings, family support (or lack of it!). You need to pick your battles. The brain needs fat.

ED teams aren’t prescriptive about meal plans and eating for the very reason that every sufferer and every family is different - there is no format and the family are left to live and learn, ‘you know your child best’ as they say. If that means that getting valuable fats into your DD by weighing then at the refeeding stage I would personally do that. Removing the crutch of weighing later when your DD is a higher WFH is reasonable, you should see a reduction in your DD’s rigidity as her brain heals with the dairy. Our DD would insist on a particular type of sliced bread, we followed that to get the weight on - but later we introduced variety. I appreciate that this is not the same as weighing, but slow changes such as restaurant wrapped butter parcels may help the transition.

@Curlyhairedassasin thank you

She's 6st 7
BMI 59 for her height should be 7st 6
She's 5ft 4
August 2011

Thank you!!

Adding some salt to the wound here......

My daughter has come home
In floods of tears saying she's been self harming for some time !!!!! I'm in shock....
She is using razor blades and has shown me her legs ( top of her thighs) and just completely broken down.....
I'm meeting with the head assistant on Monday
I feel sick to the stomach that I didn't pick up on this.......

@keepfaith22 do you have weight abs hight in kg and cm? the calculator works metric.

So sorry to read about the self harming, it's nothing we ever had to deal with so no practical advice. You must be so worried.

@keepfaith22 Sorry to hear about this. My daughter finds that holding ice cubes can be a calming measure akin to self-harm. It's painful but not harmful. This link with other alternatives may be helpful: https://www.elft.nhs.uk/sites/default/files/self%20harm%20leaflet%20for%20patsy.pdf

@keepfaith22 it's a positive step that your DD has let you know she is struggling. AN IS self harm so not unusual for cutting to coincide. My daughter struggled w tolerating her distress and was cutting too. The leaflet @NanFlanders linked looks v useful and we used ice cubes at the height of distressing meal times. I had to hide tweezers, scissors, knives and invade my DDs privacy by constantly checking for any new cutting. It's alarming and upsetting, I feel for you