Teen Eating Issues/Disorders Support Thread 2

[myrtleWilson]

Our first thread is almost full. Here is our second - a place to seek and share advice, to lament and scream with rage and sadness, to celebrate each other's successes as we navigate the choppy waters of supporting our children with eating disorders.

All are very welcome, whether you're at the start of this journey or a more seasoned traveller.

I'll link this thread to the first one and then I thought it may be helpful if on joining this one we did a quick precis of our current situation.

www.mumsnet.com/Talk/eating_disorders/4016379-teen-eating-issues-support-thread?msgid=104736115

Throughout her hospital stay they wouldn’t let me in on her weight - I only know she left at 45kg because the nurses left her notes on the table when she took dd for obs.

We went for weigh in today then realised we were a week early ! So still no idea 😔

Thank you @amc8583 - those recovered, still in recovery or parents of people in recovery coming on this thread means the world to me. To know there is hope of a different future is incredibly powerful. As parents we struggle blindly trying to support our children who have been taken over by this alien force, but a force that they connect with is incredibly hard. And no matter how evil the disease is to us, it is so much more pernicious to our children. I am so pleased every time I read a comment from someone who has made it through the other side and I wish you every happiness.

@amc8583 thnks so much for sharing this with us. Although I've seen one of my chikdren fight and beat this god awful illness, my daughter's has felt so consuming that I actually forget that at times, so always an inspiration to hear of others winning the battle too.

@amc8583

That is so wonderful to hear x

I’m so pleased you beat it ! Gives me and everyone on here hope x

@Roolet12 @Jojo2347 it's not been easy. It's been one of the hardest things I've done. I can't forget hearing my mother cry in despair and the sleepless nights I have put my parents through. BUT, I am well. I am able to say that Anorexia was a part of my life that I can't forget but I can put to bed knowing that it is a chapter of my life which I have closed.
I remember the weigh ins, the therapy sessions where I'd sometimes sit and cry for an hour and say nothing at all. I remember my wobbly teeth, my total loss of womanhood, aching bones and plainly and in hindsight how awful I looked. I can also accept it no longer defines me and have made peace with it.
I'm sending my love to each and every one of you. Keep going...even when you feel you can not. Xxx

@myrtleWilson I am a mother now, to a daughter. I see things through the eyes of a mother now and my goodness I see how my parents just desperately wanted me to get better. It is such an evil disease and it is so helpless. You are so right, it's a blind struggle. As a parent, all you can do is stand and watch your child suffer. I only see the gravitas of that now I am a parent. Sending my love and strength to you. Xx

@amc8583 ❤️❤️❤️

The struggle is with everything. Going to try the carrot but need some short term goals.Any suggestions. We’re so exhausted we’re struggling to think of anything. Making some big decisions re her phone and thinking potentially of using that. Really won’t go down well.

What are all your thoughts and handling of phones?

Also that cornflakes ted talk is very good. Really keen on dd seeing it all.What are your thoughts?

Scr1bblyGum we limit DD's phone access, social media is just a mind spin of people eating nothing and looking gorgeous... The algorythims in the apps will target her phone with feeds, for instance she hovers over a diet tip for 30 seconds and all of a sudden she will see her feed fills up with random diet stuff and exercise bits etc

Have you watched The Social Dilemma on netflicks? Its a MUST watch for us all as we have DD's with ED's but its a must watch for all parents. It even made my daughter delete tic toc, albeit for a week until peer pressure got too much.
Here is a write up about The Social Dilemma

We had to get an app that lets us turn off certain devices whenever we want, its the Nest wifi google home product but I am sure there are plenty out there.

Scribbly I've taken dds phone off her twice, the first time it definitely made more of an impact. I said to her she could have it back for an hour in the evening if I felt she had really tried with eating. It really helped establish the refeeding routine.

The second time dd dug her heels in and said I don't care and it made no real difference 😕

Imo it's worth a try, have you said to her she will only be going back to school once she's eating enough? That's what I'm using as leverage at the moment and it's slowly working.

Girliefriendlikespuppies even though the second time she wasn't desperate to get the phone back do you think it still had an impact of not scrolling through looking at 'unachievable goals'? My DD gets all these crazy things of social media such as people live on 400 calories a day, or normal people only eat two meals a day etc etc

We had a good evening yesterday, DD baked some 'mug cakes' and she actually ate 3/4 of hers.... She felt guilty afterwards but didn't cry too much.

We have a rule in the house now, DD can only cook or bake if she is going to eat some of it. She can't cook and give to others but not herself. If she does this she's banned from cooking for a day or two.

Sotired we have a similar rule, dd made some Oreo cheesecake balls at the wend (basically a packet of Oreos and a tub of Philadelphia mashed up together, rolled into balls and then dipped in chocolate 😋) I only allowed her to make them on the proviso that she ate two of them, which she did. Must have been loads of calories and I could only manage one of them!!

She also makes a lentil dahl when we have a curry night as she doesn't like how I make it, I supervise how much oil she uses etc.

Otherwise she is very much kept out of the kitchen.

I have a feeling that with pushing the snacks that dd is trying to leave more of her breakfast and lunch which seems counterproductive 😕

Our fortnightly appointment with the Camhs psychiatrist was cancelled this morning as she had to go to an emergency ☹️ we had a brief chat on the phone and rescheduled for next week.

Sorry sotired forgot reply re phone, I think dd did seem slightly calmer without her phone and she definitely used her time more creatively (doing crafts, painting etc) I do keep an eye on the phone and have told her if I see anything I don't like on it she will lose it and apps such as YouTube and tiktok. There is also filters on the phone which should help minimise the risk of exposure to some things.

Also just while I think of it there's probably quite a few people on this thread that could apply for DLA for their child. Especially if dc is too unwell for school and is needing a lot of care so needs a parent at home most/all of the time.

I think if it gets to a point where I can't go back to work longer time I would definitely apply.

Sorry your psych was cancelled @Girliefriendlikespuppies. So frustrating. Our Camhs psych seemed to make a point of missing our appts- almost became a standing joke. Hope you can reschedule asap. Oreo balls sound like a victory!!
Thnks for the Social Dilemma link @SoTiredNeedHoliday
Def food for thought. I'm increasingly fretting about DD's penchant for making tik tok vids - most are v innocent - but I can only imagine the barrage of food related material that she's seeing. As parents we probably haven't cracked down enough but dont know best way forward. Apart from apps that monitor usage are there ones that can actively filter out certain material? Any recommendations? Or am I living in cloud cuckoo land??

Roolet12 once you watch the The Social Dilemma you will see that DD has no control over what comes onto her feed and there are no settings you can use to stop unsolicited posts from appearing. Basically it's not your DD's fault if there are all pro-anna things appearing in her feed, she has no control.

Here is a BBC article that highlights Instagram and its 'out pf control pro-eating disorder feeds' BBC on Instagram & Pro-Anna

In the end we have not banned the phone as it is socially isolating especially during covid. We monitor use and its not allowed to be used between 7pm and bedtime to try and help those bad thoughts interrupting sleep. We have also looked at the social dilemma together and various BBC articles etc.

@SoTiredNeedHoliday thnks...i feared as much. Was still hoping there might be a clever little filter that can scan content for key words or something. I guess not. I'll have a watch of the Soc Dil & see if i think we can broach it with her ( & siblings). We really need to i think. Sounds like youve hern v proactive in addressing this stuff..need to up my game!!

Hi all I installed Famisafe on DDs phone (and mine) it alerts me to anything it considers explicit content. I do get a lot of weird messages from it when her grandma has sent her a what’s app message that says ‘we had a curry it had lots of spice’ and it flags for drugs!.... but you can set key alert worlds up so I get alerts for diet, fitness, health etc. It also tells me which you tube vids so has watched and monitors her what’s apps, SMS messages and Instagram. I am not sure it can do Tik Tok. It also tells me when she is on her phone which has alerted me to some illicit exercising. I luckily have her passcode so downloaded it and hid it covertly but you could agree it as a condition of phone use? It isn’t free but it has given me some peace of mind.
Although we had no gain this week I have made a major breakthrough today as it’s the first time in 6 weeks DD has let me accompany her on her walk without a major meltdown, leaving me behind, calling me a old fat c* etc. We actually had a conversation (when I had enough breath, we still went at a huge pace).
This is a massive step.
I also floated the idea at bed time that if she cannot manage school (she does not want to go back as it will get in the way of her exercise regime) then she will not be well enough for football clubs when they return. I think I got through a bit. More conversations to have there tho.

Famisafe sounds worth investigating, thanks @Lottsbiffandsmudge I guess it gives you relative peace of mind but what would you do if eg some really disturbing content came up that you needed to talk to her about? Would you fess up? I guess you'd have to...
Brilliant you made headway on walks. These little victories are sooo needed aren't they?
Our DD is quite sporty too - likes footie & riding - tho not been able to do any for quite some time (lock down aside). Like you, we'll have to try and use these as incentives to adhering to the 3m/3s prog she's currently on. I'm slightly dreading full discharge from the IP unit - she's home alot on leave in the run up - discharge meeting set for 17tth March. I'm terrified I'll buggar everything up and we'll slip backwards. Hoping I'll feel better once our approach to restarting school (yr8) gets cemented a bit more... all v up in the air and little communication on that front from the hospital school she attends, frustratingly.

@rootlet yes I had thought about what I would do if I found something dodgy... I have not had to have that conversation yet thank fully. I think if I had my time again I would get her agreement as a condition of her having her phone. When I installed it she was allowed to exercise alone (not any longer hence my walk trauma) and she was often late back or not where she said she would be so I used it’s tracking function.
I have not had experience of inpatient but I hope they give you a good care plan and community help too.
Just had a major meltdown about doing Games at school. It is netball and I want her to do it (medically allowed) and swap it for one of her football sessions she does with us. That has gone down like a lead balloon. Anyway think I have sewed some seeds. I haven’t had such a bad meltdown for a week or so....
had my CAMHS check in and dietician (my KW) not worried about the no gain this week. She says it is quite common to have a v good week and then a static week. Or she could have needed a poo before past weeks weigh in so came in artificially high and therefor ]e has gained this week! They look at 6 week averages and DD’s is 650g so she is happy....
Phew!
Meant to say @myrtleWilson great news on the sausage, pasta thing- hope today has not been too bad as a result!

@Lottsbiffandsmudge 650g avg is brilliant. We're only just managing that during IP stint ( with increasing chunks of time at home..). If you can keep it up you'll hopefully be in a strong position to get DD back to a reasonable amount of footie if that's her thing. Massively helps to have a "carrot" they value as highly as their ED - and hopefully more so. Sorry you had the meltdown tho.. once she's processed it she might come round to the idea?
When DD was losing weight back in Oct/Nov she just stopped being able to care about anything. She just became a shell of herself. Her sole focus was food and pacing. It was horrendous. Determined her E.D won't do that to her again.
CVAMHS will be supporting us again after discharge - and I'm looking into some private psych sessions because these just weren't forthcoming via CAMHS,. Every beeping excuse in the book came out - so we missed a valuable opportunity to actually work on her mindset more when she'd improved her wfh.

Thanks lotts - today DD has eaten a tuna mayo salad sandwich. She's not had a sandwich in about 9 months. Plus she had to pick it up and bite rather than chopping a carrot into 58 pieces. Really challenge stuff for her but she's come through...

Have been watching a few 'sensible' ED you tubers talking about recovery and going "all in" - DD isn't wanting to do that but she does watch them so I do wonder whether in an odd way she's been 'researching' recovery. I only add that in as there are some useful resources on social media - but we watch together and DD is older so may not be appropriate for those of a younger age.

Also, it looks like a new team in adults has been identified and they will start to interact in sessions/interventions DD has with a view to them taking over full control a month or so after DD turns 18. Hopefully, we'll (or rather she'll) get to meet new care lead in next week or so....

Well done to your DD @myrtleWilson sounds like brilliant progress.

anorexiafamily.com/product/workshop-loving-and-effective-connection-with-your-child/?v=79cba1185463

Hi all, I've just heard via a parent support grp that i attend, that Eva Musby is now also offering group coaching sessions particularly aimed at parents/carers waiting for treatment to get properly underway -think there are a couple here who are in that boat? Might be worth checking out...? Wish I could borrow that woman and have her in our home every meal time.
@myrtleWilson that's so great - more positive progress for your DD. Hopefully each new challenge she's prepare to try will give her confidence to try more...Glad too that you're making headway with 18+ care plan - must feel a tiny bit of a relief to see it coming together?
Phone call from IP unit this pm confirming discharge CPA meet for DD on the 17th. Feeling quite real now and aware the clock is ticking to get home visits running more smoothly. We still struggle so much to help DD communicate her thoughts around her illness/food, she gets incredibly defensive - hence the blow up's when she's not able to. Does anyone else here have a DD with communication issues/ language disability? We've only just found out v recently via psych and speech/lang assessments done during her IP stay that she may have a developmental language disability (DLD). Hoping with the approp support we'll be able to help her communicate better with us rather than resort to screaming or fisticuffs. It always leaves her feeling really guilty and us really deflated, so not great all round..

Hi everyone, just checking in. We've had a bit of a day. DD1 not drinking at all, really, unless it's medicine/smoothie.

I phoned the EDT and said that I'd called last week, Monday, yesterday, etc., and still don't have a plan. The lady said 'You spoke to me yesterday.' so I said 'And I'm speaking to you again today, because I'm her only advocate'.

Then DD1 told me she's been feeling dizzy even at rest. Heart rate 118 lying and 142 standing. So I phoned the GP for a call back. In the meantime, the nurse practitioner from the EDT called and I told her that I was waiting for a call back from the GP because of her heart rate. She said she'd see us at 12pm.

We went, obs largely ok, but weight still maintaining at 38.8kg, which is less than her discharge from hospital weight. No gain since Friday. Gap between sitting/standing heart rate 25bpm in clinic. She sent us home after trying to call a psychiatrist and the hospital consultant.

So, later she called to say that she had talked to the Cons, who was happy to have her at home as long as she has another appointment booked in (which is booked for Tuesday) but the Psych couldn't talk to her because she was too busy, so they'll talk between now and our next appointment. The nurse thinks a medication change might help.

Also, the LD nurse will send some information out to us.

Today DD1 refused morning snack, only had 2 Oreos as a snack in the afternoon, and left ½ her dinner and refused evening snack. Overall we're only 230 calories down on the target, but as that's the bare minimum to gain, I don't think she is likely to have gained on Tuesday.

I'm really trying and so is she, but she's struggling.