teen eating issues support thread

[myrtleWilson]

Hello,
would anyone be interested in joining a thread to support each other as we support teens with eating disorders @MNHQ - I'm tagging you in as am conscious of triggering issues and wanted your ok/ground rules to such a thread..

Happy to share our story with DD if others would feel it is helpful...

Day that thinking is typically anorexic, your dd sounds really poorly. Did you ring oohs?

Day - what a tough day you've had. Hopefully you'll be able to speak with someone tomorrow?

Was your DD under CAMHS before her hospital stay (apologies if you've said this already)

Girlie - no rituals here that I can think of...

We've had an up & down weekend. Mood very variable, when its good it is lovely but she's increasingly more tired, very blue nails etc, pains, dizziness. We had a better therapy session on Friday and I think some of it landed with DD and am clinging to the hope that this is working through her mind and we're in a dip before a rise... (am aware I'm clinging to false hope here )

Day have you got/read the Eva musby book? It really does have a lot of excellent advice in it. Tbh it sounds like your dd needs inpatient care if she can't eat at home.

What I struggle with is how selfish the ED makes dd, she literally only cares about the ED and nothing else. She said ystd she's dreading Christmas which made me so sad, usually she loves Christmas and all the lovely food that goes with it.

girlie this is what I am really struggling with too. The ED has made Dd so focused on herself. Before, when she was angry or upset she'd apologise afterwards if, on reflection, she knew she was out of line; now that never happens and is a sign of how much the illness has her in its grip

Myrtle that's exactly it, she had me in floods of tears the other day due to leaving me in the middle of nowhere as she wanted to walk further than I did. I was so upset/sobbing and although she was concerned (when she eventually turned back) she was not apologetic at all.

It breaks my heart.

From referral and bloods, ecg etc it was just under two weeks for them to see my dd. She was probably eating around 1000 calories a day then and doing tons of exercise.

They told her to stop all the exercise and put me in charge of all the food. I would say the first week was awful as she was very resistant to the point of banging her head on a wall but it did get easier.

You really do need the Eva musby book, it's so useful and I used a lot of her techniques to get dd to eat.

Our dds must be a similar age, my dd is 14yo.

It's dds weight check day tomorrow 😕

Day - my DD is in yr13 but hasn't returned to school in September - one of the issues with her ED is cognitive deprivation - she's been on such restricted eating (prob c400 calories per day at times) that her brain capacity has massively decreased, she couldn't concentrate or function. Her school have been great and supply materials to manage at home/record classes for her. Have you spoken with her school?

I hope the tests etc come through quickly and you get some support- if you ever want to chat refeeding- am here!

We had a good call with CAMHS dietician today and Dd has been externalising the anorexia more vocally which I think is a v positive step..

Thoughts with you all

If her MH is better for being at school then send her but she'll need to be careful about energy expenditure.

Re multi vitamin Dd was given forceval in hospital and discharged with it on prescription. Don't know if it requires a prescription (which reminds me we need to renew prescription for the collection of meds we have so must remember to ring GP today!)

Yes day it's that book.

When you start refeeding you'll definitely need to keep your dd off school until she is in a much better place with eating. Do you work? You'll also need to take around 4-8 weeks off to just focus on it.

I took 4 weeks off work, this was during the last few weeks of the school hols so I felt by the time she went back to school she was in a good enough routine to hopefully eat at school.

The dairy thing is the anorexia talking so I would completely ignore that and continue to give your dd dairy. She's too unwell to make that decision.

Wish me luck at the weigh in 😐

Good luck day 🙏

Hmm she's still 52.8kgs so weight has not increased in just over two weeks 😕 am more sure than ever that she's not eating in school.

She also told me her period has returned this morning, I'm not sure if I believe her tbh.

Feel a bit deflated now, dd was not happy at the appointment as the lady would not tell her her weight.

Oh am sorry you're feeling deflated girlie... At the risk of Pollyanna syndrome, her weight is stable and not decreasing which is a good thing in the short term?

Don't worry about being bumped because she's not underweight @DayB1Day - my DD is the same but they do think about the DC in the whole not just one element - so for my DD because of her very low blood pressure and heart rate she's considered at risk because there isn't much room for manoeuvre in terms of red flags if she doesn't eat. I hope that doesn't alarm you - was actually meant to reassure you that they don't just look at BMI alone (at least in my area they haven't)...

Did they do a postural drop check on her blood pressure - that is one of the key tests at our observations clinic?

How did DD react to it all?

An unexpectedly eventful day for us - GP in the morning to get bloods done - fine. Call from GP in the afternoon to run through prescription needs but in the meantime DD had developed a rash on both of her calves. As we had GP call we mentioned it... this then led to GP appt, which led to A&E and then paeds assessment. They were wanting to check the rash was not meningitis/her immune system going astray or liver issues (the rash was like lots of pin pricks of blood). After a couple of hours at A&E/Paeds, discharged all ok but really brought home to me how fragile her health capacity is.

Plus, her lanugo hair on her upper thighs is really quite noticeable which makes me

Hello everyone,
I have a child with an ED, very similar to many of these stories. We have been battling for just over a year now. It is hard, and I feel for all of you.

DayB1Day - we had to take my DD out of school. She was obviously horrified but we just kept saying that she wasn't well enough to be at school. It is only now, as we are starting to see her improve, that she will tell me that she used to worry she would pass out walking up the stairs to class, and that she felt so miserable and tired at school. The thinking and the walking around (and of course they won't go the short way between classes) and possibly the interactions with others will all be burning up loads of energy and creating stress. My DD wasn't allowed to even walk to the toilet on the ward, so she certainly wasn't going to march around school!
At home I bought painting by numbers sets, craft kits, dvds anything to distract her. i subscribed to audible. Anything to be resting and rebuilding.
Your DD might well not like it - the ED will be so angry that it is losing it's grip, but inside your real daughter will be grateful. As my D got better we could allow her to go back to school for 1 lesson and then build up. We did some reading at home, listened to revision podcasts etc. Then we had to go in and supervise snacks and lunches at school. It was exhausting.

Now she is back at school and we don't supervise lunch but we are monitoring weight. She told me she is so much happier now, and enjoys school far more. It is lovely to see but she isn't 100% better yet.

I think what we forget is that Anorexia is the mental health disorder with the highest death rate. If your child had cancer, you wouldn't hesitate to take them out of school to start recovery.

Keeping her out of school lets her feel she is 'ill enough' and maybe gives her something to fight back against the anorexia with.

It is awful, we all feel for you.

I have found several websites very helpful and I think I will start a thread on resources parents can access for advice and help. There are some great organisations out there.

Hi @greygirl - thanks for joining the thread, I am really finding comfort and support from hearing from others.

I agree with you about school - our DD hasn't gone back this term and we've been reiterating she hasn't been well enough either physically (too weak) or cognitively (not able to concentrate). She wants to try a lesson next week but at the same time is worried that it will make her more stressed if she feels she's behind in class material.

It was interesting you said "real' daughter as we've been increasingly externalising the anorexia, and indeed, DD has been referring to it as "it" or "she". One area of difficulty is how we talk about the loss or change in her since the anorexia took hold... she's lost her light and sassiness but referring to "old Jane" [not her real name] doesn't feel right as to Jane "old Jane" was sassy but fat and she doesn't want to go back to "old Jane"....

@DayB1Day in terms of the eating plan, I hope it works out for you - we're still struggling here. There are times when DD says she wants to try to eat more but worries what "she/the anorexia" will do to her if she does - so she ends up sticking to the "rules" that the anorexia has created. I do hope that little bit of 'desire' will get stronger and louder and squeeze out the space the anorexia occupies but that is a long journey.