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

@SoTiredNeedHoliday so what is her explanation for the fact that your DD is so underweight? Surely if they don't think she has AN, then they need to be referring her for medical investigation into her alarming weight loss?

CAMHS phoned me and apologised. They had missed a digit off my email address. DD1 is going to go back for an obs check tomorrow, but no news on when her Dr will be well again. There's a waiting list for allocations to practitioners, but the lady said she'd talk to her team lead and try to at least get an interim plan for DD1.

Oh p#ss. Just lost my whole post!
Ok, abridged version. ( prob a good thing!!)
Wfh - red books and any historical school weight measurement programmes aee useful for this. 95-105% not approp for everyone. IP hosp looking to get DD to around 90-95% before discharge - unlikeky we'd ever get beyond 95%. Being a naturally small frame/ build needs to be factored in too.
**Girliefriend i never once managed to achieve an empty plate with either DS when he was ill, or DD until being admitted into her current IP hosp where nobody leaves the table until plates are empty. Don't beat yourself up about it, you can only do your best here. I gave DD reasonably large portions to factor in the inevitable wastage but it becomes a worry, I know.
Are you receiving any meal support from Camhs I2I outreach team who cld poss help with this?
Lougle, you have every right to feel utterly p'ed off about your appt today. That's pretty unacceptable. Really hope they can offer a new time asap - is a virtual call an option and do the weigh-in separately?

The illness of the Psych is unavoidable. Nor the time frame of the illness. I don't think email is a good way to communicate it, though. Obs tomorrow is a start. We had the blood test on Tuesday, so hopefully someone will review it.

Totally - no way of knowing youv'e received it!
@Girliefriendlikespuppies just thinking again about your prob. You already add in what you can I'm sure but I discovered MCT oil some time ago. Colourless, odorless and packs a whopping 148kcal per 1 tbsp. Used to add to fortisips on occasion. Need to be careful of course as you dont want to break trust with DD and if used too much, can obv give false idea of visible eating plan cals versus weight gain. But just a thought.

Lougle that's really frustrating and you're right a phone call would have made a lot more sense!! I cried once over a cancelled zoom session, these appointments are important.

Interesting re the clean plates, looks like I'm being a bit soft. It's so difficult knowing how far you push it 😕 I do add lots of extras and I do put more on her plate than I think she'll eat but even so it has taken 9 months to put 3.6kgs on so clearly not enough!!

We had a nice walk this afternoon, the sun came out and it felt really nice. Dd moaned that I ruined it as she kept trying to run and I told her not to. I said of all the things I didn't understand about EDs (there's a fairly long list) the exercise one is the most confusing. I pointed out to dd she could happily exercise all day long if she ate enough, she didn't have any answer other than it's too hard 😕

@Girliefriendlikespuppies I think you've got to do it according to your DD. I broke my own rule tonight and didn't force the rest of her chips, because I think I'll be able to get the calories into her for snack later. Plus I'm knackered, tbh.

Exactly Lougle sometimes I don't say anything as I can't face the argument 😕 I'm naturally not a confrontational person and normally step away from arguments. I obviously do put my foot down about some things but if I went to battle over everything I'd collapse in a heap.

Plus I'm a bugger for leaving food on my plate, always have done, so it would seem a bit hypocritical 😬

Sure its not a case of you being soft @Girliefriendlikespuppies but it's such a delicate line to tread, constantly. You can support, reassure, encourage til the cows come home - final call is always theirs.
The daft you've managed to acgieve any weight gain at all means you're doing an awful lot right, just rarely feels like it.

Welcome roolet - you've had a tough journey to date...

Like roolet, a post I diligently typed got swallowed - I'll catch up properly later but just checking in.

Interested in experiences of olanzapine as one of the three teams DD is being discussed at for adults is personality disorder (induced by the ED) . She's on flux and promethazine at the moment but I wonder given how pervasive the ED is (previous examples include DD's delusion that calories can be absorbed through touching food) I wonder whether we should ask for consideration of olanzapine....

Obs today - exact weight maintenance - six weeks in a row with ne'er a flicker of difference. If only the ED listened to objective medical facts then Dd would accept her 1800/2000 meal plan isn't making her fat - hey ho, a mom can only dream...

love to all and will back track and read now!

@myrtleWilson that weight maintenance must be hard to see. Even 0.1 kg would feel like a win, I'm sure.

After doing quite well in the end yesterday (almost 2000 calories and 1850 mls squash), DD1 completely refused evening snack today and had a complete meltdown about how hard having an ED is and that none of us understand. She's barely had anything to drink today, despite her special bottle with markers on it and lots of encouragement from me. Then she was telling me how dizzy she feels.

@Lougle so perhaps you ask her why she thinks she's getting dizzy and you're sure she doesnt want this to become a frequent occurence? ( but it will if she doesn't look after herself etc...) I've used this line of questioning with DD and altjough on the surface it appears there's still a huge lack of realisation that her actions and her physical sypmtoms are directly related, I still hope/believe at some level the message filters in through the anorexic "wall"...

Thanks @Roolet12 we do that, but it takes quite a long time for DD1 to retain it meaningfully (SN).

[quote Lougle]@SoTiredNeedHoliday so what is her explanation for the fact that your DD is so underweight? Surely if they don't think she has AN, then they need to be referring her for medical investigation into her alarming weight loss?

CAMHS phoned me and apologised. They had missed a digit off my email address. DD1 is going to go back for an obs check tomorrow, but no news on when her Dr will be well again. There's a waiting list for allocations to practitioners, but the lady said she'd talk to her team lead and try to at least get an interim plan for DD1.[/quote]
The psychologist didn't have an explination I think she was trying to get DD to think about the fact that DD is saying there is nothing wrong, yet she won't eat properly. DD told the psychologist she was eating breakfast lunch and dinner and 3 snacks...... Then when I joined the meeting I clarified what DD's interpretation of that was.

Since the psych zoom meeting, DD keeps telling me she isn't fat now but doesn't want to put on any weight. She's also bursting into tears but says she doesn't know why. DD is a real 'pleaser' personality-wise... do you guys think she is just telling me what I want to hear and trying to put on a brave face? I'm so confused.

DD is also saying she's not 'worth' all the time and energy and money that is going into helping her. We are still waiting on the NHS appointment so my help thus far has been private (though with insurance). Of course, she is worth the world and we'd do anything to help her.

I think they refer to having '2 brains' with AN. One part of her will be desperate to get better and please you. Another part will be clinging on to the power and control of the ED.

DD1 has completely refused breakfast today. Yelling and screaming that I don't know what it's like to have an ED. I've asked her over 10 times. Don't know whether to keep going or write it off

I've got a banging migraine this morning. Got to go back to clinic this afternoon for obs, after our failed attempt yesterday.

that is very interesting the 2 brains. I asked her this morning how she was feeling, did she feel she was ok and she just told me to 'go away' and walked off with her head hung low. I am just hoping we have it intime before the ED has taken a firm grip on DD.

I feel your pain with breakfast, it's so draining feeling stressed even before breakfast as you know it might (and probably will) be a battle.

She's point blank refusing. Only had about 50mls water for movicol.

sotired - not being "worth" the money or time is a common trait with ED I think (as is not being 'ill enough').

lougle hope the migraine clears and obs are ok.

We had a tough night... took DD out for a trip to the beach before dinner, dinner was hard going then complete breakdown, silence and zero engagement for a couple of hours before finally completing supper for 9pm....

Your and my DD sound quite similar in that respect @SoTiredNeedHoliday. Mine has akways been enormously compliant with others, be it friends, teachers ( just not always us!) so I'm sure that your DD must feel enormously conflicted. The E.D demands one thing and the drive to please you and say what you want to hear, another. It's incredibly hard isn't it. Mine also claims she's ok with her current self but just doesn't want to get any bigger - however she was saying that when she weighed just 26kg but thankfully has still managed to stick to her programme in the inpatient unit ) and put on weight - so now 32kg. I guess actions speak louder than words here. If your DD is still restricting yet saying she's ok with herself now, you have to take those reassurances cautiously but equally just because she's saying she doesn't want to get bigger, certsinly doesn't mean she can't achieve weight gain once she's following a supported meal plan. Xx

Hi all, I hope it's ok to post here, I have seen the thread in active for a while and been putting off clicking. I'm going to go back and read thread 1 this weekend.

My dd is 11. She was diagnosed with "severe food aversion" at 2 years old. She has been NG fed several times over the years, including from birth as she was premature. She has a prescription for pediasure milkshakes and is supposed to drink 2 a day (400 cals ish) on top of her "meals". She is 5ft 3 and 31kg. We've had periods of hiding food, binning food, trips to the toilet during meals to spit food out. She isn't vomiting (yet). I'm terrified for her future as she enters her teens.

It's hard to know what info to give as we are 9 years into this hell and I can see harder years ahead.

Thanks

@Lougle sending hugs. Hope migraine shifts. Perhaps draw a line under breakfast and move on. Hard i know.
@myrtleWilson sorry you had tough night too but well done for getting through supper. Xx

@Worriedaboutitall - welcome along to the thread. I hope it gives you as much support as it has to me. Your DD sounds like she's had a tough start to life. Are you getting decent support from your GP - you mention prescriptions of supplement but is your GP alert to concerns as she moves into her teenage years, do you think/feel the lockdown has exacerbated your DD's actions regarding eating at all?

@Worriedaboutitall Truly sorry to hear whst a long haul it has been for you and DD. What type of E.D is your daughter's currently classed as? Presumably you have continual CAMHS and paeds involvement?
The prematurity aspect akways rings a bell with me - my triplets were born at 32 weeks and two of the three have had A.N. diagnoses. I strongly believe this has been a factor. Xx

[quote myrtleWilson]@Worriedaboutitall - welcome along to the thread. I hope it gives you as much support as it has to me. Your DD sounds like she's had a tough start to life. Are you getting decent support from your GP - you mention prescriptions of supplement but is your GP alert to concerns as she moves into her teenage years, do you think/feel the lockdown has exacerbated your DD's actions regarding eating at all?[/quote]
Thanks myrtle.

She has had a dietitian for years, which consists of being shown the healthy food plate every 3 months and occasionally a different flavour milkshake. Not impressed with them at all. I pushed for a Camhs referral 18 months ago, dd had 2 sessions with the therapist and told her she loved food, eats all her tea, I'm the best cook ever, thanks very much - discharged. I've lost faith in any outside support. I was going to take dd to #thrive then lockdown happened but I will revisit that when we can.

In lockdown it is more noticeable as we are stuck in for every meal, but I don't think she is getting worse as such, she's maintained 31kg since last October but no weight gain despite growing a few inches taller.

Roolet12 gosh they sound so similar. Thank you for the comforting words that they can put on weight even with their current mindset.

Lougle i hope the second trip to the clinic goes well and is not too traumatic. Maybe it's a stress migraine with all you have on your plate right now. I hope it goes.
@Worriedaboutitall welcome