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...

@myrtleWilson it sounds like you've built up a lot of support, which is great, but that doesn't make it easier and you wouldn't have it if you didn't need it. Hang in there, your DD is still in there.

Re. DD1, the first supplement, Fortisip Compact, was the one that she didn't write to the GP about before. That's the one that I told her DD1 wouldn't drink, but DD1 said she would, so the dietician believed her (over me ). As I thought, DD1 took one sip, then said 'far too sweet', so I have 19 sat on my worktop. Luckily, I told the GP she wouldn't drink them, so he only Rx 20 rather than the 60 he would have done.

The new supplement is Calogen Extra Shots. 40ml, so 160 kcal per shot, aiming for 3 per day. I have to wait for her to write to the GP and then for the GP to prescribe, so probably a couple of weeks.

DD1 was ok at weigh in, but I think the LD is making things difficult. She says things like 'I just love junk food' and the dietician is pleased, then she says 'Why can't I just go to heaven?' and the dietician doesn't seem to know what to say... I mean, is that suicidal ideation, or is it just 'talk'? DD1 doesn't understand as a typical child of her age. I just told her there was a queue for heaven and she wasn't allowed to jump the queue...was that right, or should we have 'explored' it?? No idea.

@Lougle - I don't know if you're on twitter (and you don't have to be to read someone's tweets obviously) but I follow Hope Virgo and she had a thread the other day about expanding the voices talking about eating disorders - so not just white women but women of colour or with additional needs/disabilities. This woman said she was a campaigner re ED and autism twitter.com/eatsleeplaugh - here is a link to her blog t.co/2ktRu0XppJ?amp=1. Am not suggesting that all LD are related to autism but I wondered if she may be helpful gateway that crosses both sectors - ED and developmental disorders...

@myrtleWilson I'll look, thanks Despite being in the 'system' since she was 2yrs 9 months, and being under a Consultant who has a special interest in ASD, it was only at the age of 14 that he finally decided she flagged enough to warrant ASD assessment, and asked me to refer her to CAMHS myself, as he didn't want them pushing it back on to him, and discharged her So we've got through the screening with Psicon and we're waiting for ASOS, but it could be a couple of years yet. Certainly DD2 was 2 years from agreement to assess.

Lougle has she got a diagnosis for the learning disability or do they think it's ASD? My dd has been in the system since she was 8yo and we're still a way of a diagnosis 😫 the week after next I have an appointment with a psychiatrist to discuss dd and ASD. Although confusingly they just want to talk to me not dd 😐

How long as she been restricting food for? I wonder if some of the developmental delays could be linked to not eating enough?

Have you ever had the involvement of a learning disability nurse?

Her diagnosis is 'widespread, subtle, cortical dysplasia' - it basically means that on MRI, a radiologist can see that bits of her brain aren't quite right. Some bits are a bit asymmetrical, some slightly thick, others slightly thin, slight malrotation, etc. When she was young, she had epilepsy in the form of drop attacks, but they went when she was 4/5. She has microcephaly (small head).

She started out on 50th centile for height/weight. Then drifted to 25th centile for weight, then 2-9th centile. Now she's 0.4th centile for weight and 50-75th centile for height. Her BMI is 13.6.

She has never been a great eater. Always talked about food well, 'I want the whole dish!!' but it didn't translate to eating it. Now, she is up and down. If she fancies something, she'll eat quite well. If she is tired/angry/upset/anything other than feeling amazing, she'll pick at her food or not eat.

I hope you don't mind me jumping in, but I have been following the thread for a while, not as a parent but as someone with an ED.

@Lougle - from what you've said about your DD I wonder if her problem may be AFRID as opposed to anorexia? Particularly if the weigh in didn't bother her. It is not uncommon in girls with ASD ( although I know you don't yet have a diagnosis). It might be worth looking into, but as a relatively new condition under the DSM finding support might be challenging. The website below has some more information.

www.arfidawarenessuk.org

@Rustnot

I hope you don't mind me jumping in, but I have been following the thread for a while, not as a parent but as someone with an ED.

@Lougle - from what you've said about your DD I wonder if her problem may be AFRID as opposed to anorexia? Particularly if the weigh in didn't bother her. It is not uncommon in girls with ASD ( although I know you don't yet have a diagnosis). It might be worth looking into, but as a relatively new condition under the DSM finding support might be challenging. The website below has some more information.

www.arfidawarenessuk.org

I thought this too

A BMI of 13 is actually quite shocking, it makes me angry your GP hasn't done more tbh. A honestly think if your child didn't have the LD she would be in hospital being tube fed at this point.

The lack of food will also affect brain development, there's a really interesting talk on YouTube called biochemistry and anorexia which explains how badly lack of food affects the brain - on brain scans of anorexic patients there is huge black spaces where brain tissue should be!! This is reversible when patients start to eat enough.

Id get back into your GP and demand an urgent review by the ED Camhs team.

Ironically, her ex consultant also works at The Evelina Hospital, with ARFID children! He didn't feel it fitted ARFID when he last saw her, but she was on the 2nd cenile then, at 40kg.

I do think they would be paying more attention if she didn't have a LD.

Did the consultant have any other suggestions at that point?

I'm sorry this is so difficult - it's hard enough to access support when there is a diagnosis, but it seems like you are going round in circles. What is the last thing the GP has suggested?

Yup, his suggestion was discharge because his clinic is for children with genetic disorders and neurological problems, and DD1's genetic disorder hasn't been identified and her epilepsy is in remission. Plus, he has a special interest in ASD, so didn't want to be associated with her when her CAMHS referral went in, because they'd expect him to be involved in her ASD assessment 🤣

This is all terribly identifiable and I'm usually really quite careful, but I'm past caring. Someone, somewhere, has to interested enough to help her, surely?

GP referred back to dietician, who has put an urgent paeds referral in so DD1 gets medical review.

I hope you get somewhere with the paeds referral. Has the GP done any bloods or anything at all?

She had bloods done in August at the hospital. Presumably normal, as she didn't get a call back.

Hi everyone, Happy New Year to you all.

I hope you don’t mind me posting here. DD (15) was formally diagnosed with AN on New Years Eve after hospitalisation just before Christmas. Hospital care was pretty poor (and frankly dangerous), but CAMHS and the ED Team have been very good. We are teetering on the edge of another hosp stay, but I will fight against it as long as I am able.

I’ve been reading through the thread with interest (and horror) and I’m still pretty overwhelmed with it all at the moment, but it helps to hear your stories and maybe give me some insight in what else to expect!

DD is...ok. She’s eating, but it takes tears and long conversations before every meal. I’m coping so far, but God I’m so weary of it all.

Reading some of your posts I can see that actually we are in quite a good place, even though DD is so ‘sick’ - it’s weird, but her stats are awful and don’t really match with the way she is (or the way her health appears). Right now I’m KOKO but I’m checking she’s alive every morning...which I expect is doing nothing for my own MH.

Wishing you all the best, thanks for listening.

Hi rustnot - I don't know if you're on the adult ED thread - but it seems a really supportive place - I've had a read previously (felt like I was eavesdropping!!) and am in awe of how you are all managing life with an ED - I feel like we're in a parallel universe and "real life" has been suspended. I hope you're doing okay with your ED and the future is good for you

Welcome @exLtEveDallas - although sorry you're having to experience this. I found lots of "yes me too" moments in your post (particularly the checking she's alive each morning. I'd almost hold my breath until I heard DD start moving around in her room (above mine) - as you've read the thread I don't know whether that is reassuring or horrifying .

What sort of support are you getting from CAMHS? Am glad your team are good - what I have found is that different CAMHS use different approaches and its been useful to know what is on offer in other places and feel better informed in asking for support from CAMHS.

Hope you find the thread helpful - we're good at listening to all rants and sobs of despair and always there to celebrate someone having a good day (even if a good day to us is slightly different to what the man on the clapham omnibus may define as "good"!)

Hi Myrtle. DD was discharged from hosp on Sun 20th (taken one at a rush on Thu 17th) with an appt booked with CAMHS on 22nd for physical health check. Bloods taken at hosp on 22nd.

We had a phone call on 24th to tell us they were closing but still ‘on the radar’ and to take DD back to hosp immediately if she refused to eat or tried to exercise!

On 29th we had a short notice home visit (literally 2 hours!) from a nurse and ED counsellor. Nurse wanted DD to go back to hosp, but accepted that we didn’t want that. They were great, stayed 2 hours and were both compassionate and strict (eat or die 😱) and emailed the initial diet plan that evening, which we started the next day.

Blood test taken at phys health clinic on 30th. Psychiatrist appt 31st which gave ‘official‘ diagnosis. Have to have further bloods and BP etc asp when I can get in touch with our docs and it sounds like they want that to be a regular thing.

She’s got Eating Support zoom appt on Mon lunchtime (which she is dreading) and her first proper counsellor and dietician appt Mon afternoon. Tue she’s back at the phys health clinic.

Our heads are swimming with all the different appts. DD wants me around if I can be (thankfully school closed till 11th) so I’ve got to chat to my boss on Mon and see how flexible I can be (DH doesn’t work, but she just doesn’t want him with her..)

It’s all been a bit of a blur (although writing that out has helped me get it straight in my mind!)

@exLtEveDallas it sounds like you've gone from 0-60 in 3 seconds! What a whirlwind. How long has your DD been unwell?

Hi Lougle, yeah it’s all been a bit mad.

Apparently she started restricting food and over exercising in March. Plus a couple of weeks of throwing up. I didn’t notice her weight loss until June. Thought we had a handle on it over the summer, but she got worse in Sep. In the summer I told her that if her periods hadn’t restarted by Xmas that she would need to go to the docs.

Got to the docs on the 16th and discovered it was a whole lot worse than I had realised - and have been beating myself up ever since.

Don't beat yourself up - if it was an obvious disease, half the battle would be over.

Hope you don’t mind if I join. Have been lurking for a few days... my DD (13) has just had a diagnosis of anorexia and life has suddenly morphed into a very new and scary world.
A bit like exLtEveDallas things have been moving really fast.
We are following a diet and vastly reduced exercise pan (DD is an elite footballer) which she hates. We have had 3 meetings (virtually) with her ED CAMHS dietician and she has also been very responsive over email and text over Xmas.
We are seeing a psychiatrist on Tuesday about the possibility of medication for DDs extreme anxiety and intrusive thoughts although DD is very resistance to medication.
She had some CBT for OCD when she was 9 and has had intrusive thoughts on and off ever since which we have been able to help with but not this time.
She was exercising in secret and had restricted her diet in secret (she ate meals but as she trains a lot she was in about a 1000 cal a day deficit) and lost a lot of weight over the last 4 week lock down. In fact alarmingly fast.
It took a while for me to realise which I feel so guilty about now.
Today I had abuse, things thrown at me, hysterics and despair.... by bed time she had calmed down enough to apologise.
I don’t recognise my DD at all. She is sticking to the food plan but is constantly trying to exercise. She has become so sly about it.
Anyway best wishes to all of you and your DC and thanks for reading.

Welcome @Lottsbiffandsmudge - like exLt you have no doubt been on a roller coaster ride in the most recent weeks - am so sorry you've been plunged into this world.

One of the hardest things I find to deal with is when the ED takes over DD's brain/mouth and she says the most horrific things but it is important (if not always possible, I've run away crying before) to try to remember that your DD isn't saying the abuse, she isn't throwing stuff at you - it is the ED.

The other lesson I'm still trying to learn is to recognise that at some level the ED is validating something in DD. I need to acknowledge that in its own twisted way the ED is giving something to DD. Now DD may not be properly cognisant of the much greater amount the ED is taking away (another neat trick of the ED) but if I try to make her hate the ED (in the way I do) I'm not listening properly to what DD is saying, as she said today - we need to try to keep seeing it from each others perspectives (beyond the day to day tracking of eating etc) otherwise we end up in a no-win situation. This is, for me, the hardest lesson and I'm not there yet at all..

Hi welcome lots and Eve although I'm sorry you've had to find this thread.

We've had an awful evening, dd did okay ish with dinner and pudding but then freaked out when I said we weren't going to take the dog out again. I have explained to her until she starts eating her snacks and drinks milk again the only exercise she will get is taking the dog out once a day.

This escalated when I told her she needed to drink her milk, she drank a small amount and then started self harming/head banging/rolling around on the floor sobbing. She somehow found an elastic band which she was twisting around her wrists 😫 it was awful.

Eventually I said she didn't need to drink any more milk as it seemed pointless to keep adding fuel to the fire. That's probably the wrong thing to do though!

She's fine now although worryingly I can't find the bloody elastic band and dd is saying she doesn't know where it is 🙄

Myrtle** that's really interesting re understanding that the ED validates something in your dd, my dd will say the ED is her friend and that it helps her. If I try and point out how it bullies and lies to her she gets very upset 😕

I also feel that she needs some counselling on her general poor self esteem which wasn't great pre ED. She says she likes her body more now (about a stone lighter than she should be!) so any talk of weight gain goes down like a lead balloon.