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!

@@BagpussSaggyOldClothCat The sleeping thing. I slept well all my life until ED came along. I have found reading or audio books to be helpful. Even if you don't fall asleep, at least there is a distraction from the racing ED thoughts.

Yup same as Nan re the sleeping. It's brutal!

@Girliefriendlikespuppies Sorry to hear your DD is showing some worrying signs - her recovery has always kept me hopeful. It might be the case that it's not about the ED, but you have to be so vigilant.....Just on baking, in the Unit where DD is, they are allowed to bake (which they all love) but ONLY if they eat the results. (For the first time this week, my DD made and ate gingerbread 😍)

I hope today is a better day. I spoke to the pastoral support manager by phone yesterday and they’re talking about batting her off to a specialist provision because they have no experience of ED in her age group (I suspect bs). I really don’t know what to think, I’m scared we’re going to go through all this upheaval then someone will say actually it’s not ED and she’s naturally small because she’s not fighting us over food, just making it look like she’s eating then when I tidy up there’s nothing really gone. Got a spiked milkshake into her yesterday which she happily finished so I guess small victories. Can’t get blood tests til the day before her next ED appointment, which is super helpful, and I’m still having problems getting wider family on side. Gah!

@Glitterfarti School is fobbing you off. If ED is the only issue (and there are no other learning needs), then there is no specialist provision. Specialist provision is usually available for various severe and complex learning needs, not for an ED. you would also need an ECHP to access specialist provision and you wouldn't get it for an ED alone (my other child has complex need, an ECHP and is in a special school so I know a thing or too about it). Looks like school is palming you off as they don't want to offer meal support (I guess this is what you requested). Might be worth checking out other schools. If I learned one thing along the way, there is no point trying to work with a school whose ethos is based on rolling off children who need support. I learned it the hard way!

Nan dd did eat the cookies she made and Ystd had a good day as had cheesy chips at college for lunch and then ate a big portion of chickpea curry for dinner finished off with chocolate. So I'm feeling more reassured, I think our anxiety is always going to be heightened for any signs they might be slipping back unfortunately. So don't let my worries worry you! I hope your dd is still doing okay?

Prosecco my understanding is refeeding syndrome is only a concern very early on, so if his bloods are stable I'd start upping his intake ASAP.

Glitterfarti is that the school saying that? What specialist provisions are they talking about? All she'd need at school would be somewhere quiet and supervised to eat lunch and snacks.

@Girliefriendlikespuppies, that sounds great with eating yesterday! Onwards and upwards!

yes, the school appear to want her out. Just had a meeting and they’re not offering any meal support, she is going to attend mornings only until half term when they need to review it. Apparently they have no experience with ED so no management protocols (single sex secondary!). During PE/Dance they have no provision so she is to change into her PE kit and sit and watch/fetch balls/cheer the others on.

There is a specialist service in our county for children too unwell for mainstream school but it seems from their website they mean behavioural disorders/challenging MH conditions and are a last resort not first point of call because you’re short staffed.

@Glitterfarti that's frankly shit. The P.E thing sounds horribly 'othering'
It's also really something that there is no history of EDs...what's their secret! Well I don't quite believe it either. We have spotted another girl from my DDsschool at the unit so ...
Our school have not been great tbh. They said they are fully supportive but can't/:won't provide any supervised eating so DH and I have an enormo spreadsheet on who runs down to the school in between calls to do lunch. But she is 16 so allowed to leave grounds and snacks are jammed in before and after school. She's so happy to be allowed back by case worker that she tolerates that (v iffy up till now and not a done deal of course)

Can I pick your collective wisdom.
How long does the 3 plus 3 need to go on.
Can we give bigger lunch for example and miss a snack or would you avoid this even as a one off for a day out?
I know I can ask Case Worker but I feel the lived experience might be more helpful!
DD is becoming slightly more flexible (yesterday lunch not the same one she's had for last 5 months) so maybe good to try a few changes and I think long term her enormo breakfast wont be feasible (we have been front loading her)

@Glitterfarti

They sound beyond shit! They don't need experience with an ED. she just needs some meal support and depending on weight, she does of does not do PE.

There are no special schools for eating disorders. They simply do not want to support. I cannot remember how well/unwell your DD currently is but given that this illness is not a short term thing, I would seriously consider looking at changing schools. You need a school who is happy to support in the longer term.

DD has the following: snack and lunch in the staff room - they have a rota where there is someone to observe. It doesn't take a lot. When weight was too low, she. spent time in the library instead of doing PE. It literally costs nothing to support a student with a ED as no extra help, 1:1 staff etc is needed for lessons. They clearly do not want your child there. Take note. And I am so angry on your behalf!

Reine I would keep going with 3 plus 3 for as long as possible. Unless they're able to respond to hunger and ask for food you have to assume they're hungry and need all the meals and snacks. The idea being that if they go too long without food that will trigger the anorexic voice to start shouting very loudly.

It can also set a precedent which is hard to come back from.

I always just kept a supply of snacks in my bag if we were out and about.

Glitter that is surely discriminatory?! Agree with everything curly said, it's absolutely shocking behaviour from the school. Also complete bs they've not had any other students with an ED 🙄

@Glitterfarti yup appalling. She does not need special provision..and she should not have to do that for PE. Its awful. I'd get onto the chair of governors if they cannot budge.
@ReineDeSaba still mostly doing 3x3 here nearly 2 years into recovery. Its ingrained in her now. Occasionally she misses a snack but it's never 'planned'. We have flexed a bit to fit with training (so today for instance she has breakfast, snack at break, lunch at school, a light meal on the way to training (instead of pm snack), training 5-7, and then normal dinner at 8.30pm. So eve snack goes. But her 2 eve meals come to more than 2 snacks and a meal iyswim)..
After panicking over the weekend I worked out that yest she ate c 2700 cals! Her breakfast is 660 every day. I had forgotten that she has increased it since the dark days and it was at least 200 lower than that.
She still has the other issues and I will not let her run on rest days, but think I need to relax a bit!

had the first weight check in a month today. Just under 1.5kg down. I am actually strangely relieved it is not more. I definitely I need to challenge the ED more. DD eats most if the plan but cuts out stuff here and there and it is impossible to get her to eat it all but I haven't been overly challenging recently as I ran out of steam. My tank feels empty.
Definitely need to up my game again esp now she is back in school. She will need a lot more in terms of energy than when she was all day at home doing nothing (mainly being on her phone).

Where do you guys take the energy from to battle this crap hard every day for months on end when they do not want to cooperate. I am really struggling to keep it up long term. I think I have something like ED support fatigue (if there is such a thing).

A moany post.

Having a stressful day with the awful anxiety that still hits dd now and then when she feels she looks hideous and can't go out. When it hits her it hits me too and I go straight back to the dark days of being terrified she'll stop eating.

Does anyone else's anxiety come out as anger? I get cross with her but it's because I feel absolutely terrified and don't know hoe to make everything better. Then I feel truly awful for getting cross and ruining our fragile relationship and hate myself for it. She can't help it and I'm horrible to her. I'm such an idiot 😞

Being perimenopausal doesn't help and I'm so hot and having awful skin and gastro symptoms - not sure if that's due to peri or stress or both. Nature is an arsehole giving us menopause and teenagers at the same time.

I know it's just a bad day but each time it happens it's like a wound being ripped open.

bagpuss, I do get the anger at times too. DD gets so incredibly angry and then my (I guess in part also) perimenopausal rage sets it. We feed off one another (in a bad way). I also get the anxiety. I think a few of us have some form of PDSD.

Not helpful probably but raging along with you.

@Glitterfarti that is appalling on every front. So much for pastoral care. I’d ask to speak to the Headteacher and if no joy, speak to the board of governors, who should have the students welfare at the forefront. The suggestion of changing to PE kit and fetching balls is awful. Surely she could go to library instead. Unless she wants to move, it might be worth spelling out to the school what is required as they may be clueless

@Glitterfarti Could the ED clinic write to the school and spell out what is needed (meal support, library instead of PE). Would that help them to accomodate DD better? I have regular-ish Zoom calls with school and the ED clinic to align.

curly Yes it's definitely ptsd that causes the anger. It's really frightening to get those feelings rspecially when we've had a few good weeks and things have been a lot smoother. It doesn't take much for it to all come flooding back.

Thank you so much for reinforcing that we need to work to the 3 and 3 for more than a little while yet.
DD had a wobble today at school after a friend took a photo of her before she left and by the time she got home it spiraled into v negative thoughts about her appearance.
She recovered impressively (for her...these types of funks used to last days)but reminds me how close the wolf is to our door.
And yes I'm another one who feels the fury.
But I do now also notice how any kindness floors me..here on the thread as well as RL I find a supportive word or gesture can turn me into a sobbing mess (usually away from others like the rage!) Honestly don't know which is worse!

@Glitterfarti that school conversation sounds beyond frustrating. Is it a fee paying school or state? Not that it should make a difference, I guess I have heard of fee paying schools more proactively managing out kids who don't sit in the mainstream 'easy' groove. I hope there is way of supporting them to provide what your daughter needs - if she is settled there surely it's better if she can stay? And it's not like you're asking for much - a tiny bit of compassion and common sense. Grr - I'm cross on your behalf. I've emailed our school today to start the conversation, have no idea what they are going to say.

We had a strange camhs appointment yesterday, we were given the appointment when we were there on Friday, apparently it was for physical health monitoring, but it seemed to be a complete repeat of Fridays appointment, many many exposing questions along the physical health stuff. And it had the same effect on my daughter who has been distraught again. It's been the most awful day, I've been a terrible mother today, I've done everything wrong 😢. You might have heard me (and my dd) YELLING from where you all were. I've also realised she has been hiding food, today half of her breakfast was tucked in a tea towel in the washing machine. I found some discarded food yesterday and told her that if I caught her doing that again she would have to start the meal again, so that's what we did this morning, I made a whole new breakfast and made her eat it. She hasn't looked in my direction since, and told me she doesn't love me earlier.

Exhausted. I'm going to speak to my gp tomorrow and try to be signed off for 50%. I've got a few things coming up that only I can do and it's going to make me worse to let people down with those, but there is no way I can manage work properly. The 50% will mean I can get these things out of the door and then reevaluate and maybe be signed off after that if needed.

I think it's been a fought few days for us all. Sending everyone vibes of support and solidarity. I hate this, but I am so glad to have found you all 😓

Tough few days, not fought x

Grey that sounds really tough. Honestly I would just get signed off work, I know you'll feel like you're letting work down but honestly you need all your strength to keep going with dd. I used to tell myself if dd (the ED) was saying she hated me I must be doing something right 😬

Well done on catching the hiding of the food and calling her out on it 💪

Bagpuss yep to the anxiety coming out as anger, I used to shake with rage at times which I knew was completely out of proportion to whatever the trigger was ☹️

Curly I'm not surprised you've run out of steam, you've had to keep working and care for two dds with different but equally complex needs with little to no support. I ran out of steam and I only had dd to focus on!!

If I was you I'd pick the battles you want to fight and leave some of the others for a bit further down the line. Getting your dd onto home cooked food should be the priority and it would be worth a few days of hell to establish that.

When my dd went backwards and I was feeling very defeated I admitted defeat on one of the snacks and also started turning a blind eye to leaving some food. Now I'm not advocating this at all as it meant I never got that snack back or a plate of food finished, but at the time I focused all my energy on increasing the calorie content of the food I knew she would eat iyswim?

I did what I could whilst driving to preserve my sanity at the same time.

@curly it sounds like to are trying to keep going on absolute fumes. We are all human and hit our limit at some point
You have been undertaking a phenomenal task with your dual responsibilities and I know that I have felt on my knees w my much much lesser load.
Please do consider @Girliefriendlikespuppies strategies it's a long haul for AN so your own health mental and physical is absolutely key even if it means dialling back somewhere in your efforts for your girls for now.

Birthdays. So sad. DD told me in no uncertain terms she did not want a cake. But she also looked so sad about it. What to do? I feel like I've been cheated out of making her one, and it's my right as her mum. Am I being stupid? Discuss.😞

Popping on after long summer absence to say thank you @Girliefriendlikespuppies and @ReineDeSaba for your sound advice as always.
@BagpussSaggyOldClothCat I too feel the rage and the peri menopause! I sometimes wake up in an absolute fury at having to deal with another day of ED rubbish and that’s before I’ve even seen anyone! I’ve taken to having a coffee before everyone is up in the garden and find the birdsong helpful. I just sit, drink, listen, breathe.
@Curlyhairedassasin you have an enormous amount on your plate and you are only human. All you can do is your best and sometimes that will mean taking a step back and not trying to fight every one of the ED’s tentacles. Sometimes your best will mean taking care of your own needs. It is exhausting but somehow we manage to keep going and doing what we can.
@SwattyPie yes -no cake gets to me too! This year however DD found a recipe for “healthy” brownies that she realised she could make that met (& didn’t exceed) the calories on her maintenance meal plan. She was able to enjoy her brownie with us.
She does a lot of cooking now as she’s practicing a greater variety of dishes for university (from Jamie Oliver’s Healthy Quick Dinner section). The meals only qualify if they meet her rigid calorie requirements which is still enabling ED to be in control but at least they are nutritious, varied and she can be independent. Calorie counting is not good but that’s where we are and am hoping as she follows recipes that use fear foods eg oil, pasta, nuts, it will help.