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...

Agree that the deception skills seem to develop like nobody's business, I'm always finding halves of cereal bars etc stuffed into pockets and socks when I sort the laundry (her deception skills obviously aren't so good that she doesn't forget about what she's done immediately afterwards)

Day I have to wonder if your ED staff even realise they are dealing with a very ill child, not a cognitively-functioning adult, just so strange to ask her what she wants re the drugs - they could only be doing it to undermine your resistance, which seems like manipulation rather than best practice

Myrtle Dd didn't deny that she wanted me to find the food, her only explanation was to say that she'd eaten all the food the day before and didn't feel like she needed it - which would doubtless be true IF she was a healthy weight

Counsellor explained to her (again) that it is too early for her to be eating intuitively and she is now keeping a food diary to look at next session

HelpIhateclothesshopping Your description of your dd made me nod in recognition as it reminded me strongly of dd1 especially the inappropriate seasonal clothes (she nearly fainted on a forest walk on the hottest day of the year because she insisted on wearing a heavy black faux fur coat) She never eats breakfast either, and for a long time couldn't physically bring herself to eat lunch at school (she was offered a quiet room to go into at lunch time and will eat some now) Staff at school have made these accommodations because of her ASD though, whereas you don't mention whether your dd is on the spectrum at all

DD1 ate burger and chips last night. Perhaps she's just fussy and likes junk. It's her birthday today, so hopefully she'll enjoy tea.

TheySeeHerRowling she is not diagnosed on the spectrum but has cousins who are so I suppose it's possible. She's always been funny about clothes, in primary school she used to throw her coat at me on the way out of school in October/ November but was nearly always the only one still wearing a jumper in July. She also had a thing about assuming if it was sunny, it was paddling pool weather, even in winter.

@DayB1Day I think it's great that your DD threw a tantrum in front of the support worker. The mask is slipping and then they can really support you. Your food isn't bland and I'm sure you can cook rice.

DD1 hardly ate her tea, lots of diversionary activity, but yesterday's burger and chips was a win.

Bella the whole 'is rather die than be fat' is classic anorexia talking. I know it's hard but try and direct the anger and frustration at the anorexia which has possessed your dd. I really didn't want to accept that dd was not controlling her behaviour at the start of treatment as I was so angry with her. I have since realised that the illness does cause this horrible sneaky, devious behaviour and dd is not in control of it at all ☹️

Lougle without wanting to put a dampener on the burger and chips success my dd would eat crap before we sought help. Her routine was no breakfast, no snacks, minimal lunch and then a normal sized dinner which could be anything (she ate curry, fish n chips etc) and then would also eat biscuits in the evening. I think because she was eating something I def minimised how ill she was for quite a while.

Day I don't think there is anything more stressful than having a child who will not eat. This has been my biggest parenting challenge so far and the one thing that has nearly tipped me over the edge.

Help there is def some sensory type issues going on there. My dd (on ASD pathway) also struggles with clothes. She finds the change in seasons difficult so going from summer clothes to autumn/winter clothes is always stressful. She also doesn't recognise feeling too hot or too cold until it's pretty extreme.

Those of you with ASD dds do you find conversations are really one sided? Dd likes to tell me in great detail about what she's learnt in her history class (for example) but if I try and join in the conversation she will get really annoyed and tell me to shut up!!

Those of you with ASD dds do you find conversations are really one sided? Dd likes to tell me in great detail about what she's learnt in her history class (for example) but if I try and join in the conversation she will get really annoyed and tell me to shut up!!

DD1 (15) is waiting for ASD assessment (she already goes to special school). She can volunteer information, but finds it very hard to answer questions and becomes very monotone and her vocabulary gets very limited.

DD2 (13) has ASD and she literally gets in the car after school and announces "Drama was fun...." then tells me about it without pause, without checking if I'm listening, without saying hello...hilarious, really. But yes, it's very hard to make it a two way conversation.

I've had very interesting conversations with DD1 today re her eating. I've phoned the Dr and told them that she's falling through the cracks. They agree and have asked me to write a summary of her history so that they can complete a referral next week.

Best of luck, lougle, I'm sure your dd should have been high on their radar given her weight - hope she gets the care she needs

My ASD dd doesn't do the all-in-one-breath monologue thing - her speciality is getting halfway through a sentence then ending it with a sigh and 'nothing' or 'never mind' Argh!

DD2 (13) has ASD and she literally gets in the car after school and announces "Drama was fun...." then tells me about it without pause, without checking if I'm listening, without saying hello...hilarious, really. But yes, it's very hard to make it a two way conversation.

Oh God sorry I was trying to copy and paste the above post to say this sounds exactly like my dd! If I try and chip in she gets really annoyed.

I'm glad the Gp listened lougle I def think your dd needs some help.

We had a take away tonight and dd did pretty well with it which was nice.

That's great, @Girliefriendlikespuppies

DD is so low at the moment, it is heartbreaking. I really hope the AD's kick in soon as at the moment the depression is way worse than the anorexia (I know they're inter-related, but the depression is on top right now)

I'm sorry your girls are suffering so much myrtle and day. Its heartbreaking to see our children so unhappy, I'm not sure there is a way to help them with it other than just trying to empathise and support them. Myrtle I hope the meds kick in soon.

Dd went for a horse ride today, she really enjoyed it but had sneakily taken off her hoody (it was under her coat) and was absolutely freezing. We're back home now with heating on plus she's under a ton of blankets and she is still cold 😕

Hey, just checking in to see how folk are doing?

tough day here but hey ho.. was at CAMHS this morning for observations - a couple of other families there, tried in vain to work out if either were @Bellabluea

Sorry you had a tough day, @myrtleWilson.

I took a letter into the surgery for the GP, so that he can refer her somewhere. I finally got DD1's Fortisip Compact. She took one sip after school and announced that it was far too sweet. She did finally drink it after dinner. She's meant to have 2 per day, but I'm not sure that will happen. I did get a doughnut into her earlier though.

Hope your dd's focus takes her past Christmas, Day but it's certainly a handy motivational tool

The weekend seemed to go pretty well here, but today has been hopeless - dd chucking her afternoon snack in the bin then refusing to eat macaroni cheese (the first time she's ever refused an evening meal)

She slept really badly last night and tiredness is her biggest food-refusal factor so not surprising I suppose

She seems to be getting a lot more insight into her illness though and has connected some dots that seem to link it to low self esteem - we have these moments of clarity that give me hope, followed immediately by more of the standard 'I don't have an eating disorder, I just feel full, I'm not hungry' blether

I'm holding on for the moments of clarity to increase and the ED blah-blah to fade out

Here's hoping for a good week for everyone

@myrtleWilson not me! We’re still on treetops. Feeding tube has been removed and she had a home visit yesterday for a few hours which was lovely as we put up the tree. Where do you go to camhs? Hoping they’ll see us at Chester le street because it’s close by for us and they do clinics there. Darlo is a bit of a trek.
Then she got caught exercising last night
Big meeting tomorrow to decide if she can go home or whether she needs an inpatient bed which could be miles away.
I suspect they’ll let us do a trial at home and see how she manages.
Hope everyone else’s DC are coping ok. @DayB1Day pleased she seems brighter. Mine does too but I know she can go down just as quickly.

Sorry to momentarily turn this into a NE chat... @Bellabluea we were at Chester today but previously we were at Acley in Newton Aycliffe. We're equidistant between the two so no idea why we've been switched. Hopefully your DD will be allowed home, if she's moved to Ferndene, our meal support nurse used to work there and it sounds amazing - to be honest, I'm half expecting us to be in Ferndene before New Year..

We’re coming home tomorrow! Three weeks in that place and poor L is very nervous about leaving. As am I!
Hope we get good support.