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...

Oh God Scribbly, I’m so sorry. That set up sounds terrible. We were very lucky when DD was admitted in that the ward wasn’t very busy so it was easy for staff to keep an eye on her. Are there any private ED clinics/hospitals anywhere near you? I’ve had a discussion with DH and we have agreed that if we need to, we will try to get DD into one of those rather than an NHS Hosp - they just don’t understand EDs and in our case they made DD worse.

We had a weigh in today. No gain but no loss. I’m not sure how, as she’s been doing everything asked of her, so I’m wondering if she’s exercising overnight again. I hope not, but I’m hesitating about asking/confronting her. The KW has emailed to say we need to meet tomorrow to up her meal plan again as a result, so tonight has been a bit fraught.

She fears that she won't be able to stop putting on weight beyond the healthy point that’s DD as well Valley, we’ve had that conversation so many times.

Lotts, could you do mug cakes in the microwave? Or those crazy shake things? As for roast lamb, do you have any local pubs/restaurants doing take away roasts - lots seem to be doing them round my way. It’s really shit for him though, must be killing you.

Oh Scribbly that sounds awful, poor you and poor dd. I agree that I would push for a specialist unit, I can't see how general nurses are going to have the skills needed to support your dd. Tube feeding must be traumatic for your dd, just putting those tubes in isn't nice ☹️

Valley I am nodding along with your comments around weight. I have tried to be body positive in front of dd over the years but as a society the healthy eating/being thin message is everywhere. Dd has always criticised her body and believed she's too fat, at least since age 9/10.

I'm still working my way through the EM book, I've been reading it on and off for 9 months now!! I've got to the chapters about communication and it's really interesting, she talks about connecting before reacting and showing empathy. She also talks a lot about blame and judgment of ourselves and our dc. I do find myself thinking I wish dd would try harder/be more motivated to get well which is based on a premise that dd is somehow choosing the ED which I know is nonsense.

I am really trying to be more patient and understanding with dd but that hasn't so far resulted in getting any more food or drink into her!! I really pushed for her to drink her milk tonight but just got the usual fuck off/I don't care/I'm not drinking that etc etc

Anyway we have heard from the dietitian and have a zoom appointment booked with her for next week so that's something.

St @Scr1bblyGum that sounds terrifying, I'm so sorry to hear that. Poor you and her, I'm sure the huge increase in ED over 2020 will not be helping matters.

@Girliefriendlikespuppies I have no idea how we fight all huge societal pressures on girls. DS is 16 and I have never heard him be anything other than neutral about food. He just eats, mostly crap and too much meat, and as a consequence is tall and a healthy weight and doesn't waste any headspace thinking about foods as being 'good' or 'bad'. It's so frustrating that DD can't be like that.

Hi all
So sorry to hear how difficult things are @Scr1bblyGum it sounds so hard.
We spoke to DD’s dietician alone yesterday and she basically said if DD gets admitted to a unit it will most likely be miles away.... there is such much pressure on the service at the moment.
Our CAMHS is actively trying to keep children out of hospital/ units which is why they are promoting the medication to us. In normal times the dietician said they would have admitted DD and according to her psychiatrist friend in a unit DD would have been ‘medicated to the eyeballs’ to break her exercise addiction and get her weight up. On the basis that we want to keep her out of hospital if at all possible we have reluctantly agreed to up her meds at home to see if it helps. Luckily the pharmacy only had 5g tablets in stock so DD won’t know about the increase....it will still be a pill a day.
Thanks so much for all your baking suggestions. I had a new oven fitted today and so DS1s birthday cake and roast lamb is back on!! Thank god....
We are trying to set some boundaries around the aggression but she is totally irrational in those moments so it is very difficult. Trying to promote pillow/ bed punching...
Luckily she is still eating (at the moment) and she put on 0.6kg last week just another 6kg to go.....
DH has finally cottoned on to the long haul nature of this job. Apparently anorexia with compulsive/ excessive exercise has the worst prognosis and the longest recovery time. Just what I needed to hear yesterday.... not...
Anyway my good vibes to all of you out there struggling too. Hoping for better days for everyone.

Thanks for the kind thoughts.

Can I just ask. You know those weekly CAMHs meetings with the professionals involved with your dc do you ever get updated re what is discussed about your dc?

I'm so sorry @Scr1bblyGum I hope today is better.

Nope Scribbly 🤷‍♀️

I've just found an eating disorder support group for parents on fb which seems really good. It's called Eating Disorders Parent/carer support U.K if any of you are on fb.

Currently having another stand off with dd over the glass of sodding milk 😫 she's in her bedroom not coming out and I'm sat in the hallway incase she changes her mind...

scr1bbly so so sorry to read of your DD's admittance - it is such a tough journey you are on and am sorry to hear that the ward is not doing what it should/could do. Re the CAMHS weekly huddles/meetings - no we don't get a general update but if there is something we've raised specifically they'll normally get back to us.

eve - how much extra will be in the plan and is it do-able?

girlie - am sorry you're in a bit of a repetitive stand off - does anything bring your DD down? My DD would go into stand off, then self harm (obvs not recommending as a compulsory stage) then cry, then agree to eat. She feels she has to do the self harm/crying to prove to the anorexia that she's tried to resist. On balance, after typing am not entirely sure which approach is 'healthier' - weird stage we've got to huh?

Lotts apologies as my memory isn't playing ball tonight, what meds is your DD on? We've had some leaflets about pre-emptive techniques for rage/anger - we do pacing round the table/island, did do holding ice cubes but that seems to be lessening impact, plunging face into ice cold water.. Happy to take a photo and share to thread if that helps anyone? In addition, DD and DH do breathing exercises via Headspace app before breakfast (breakfast has become a tricky meal - the anorexia tells DD she hasn't eaten since supper so obviously doesn't need to eat this)

lougle - thats great news re the gain - take every win you get is my motto.

We're getting more concerned about DD's impending 18th.. we know the anorexia has already been playing the long game with DD - telling her that when she goes back to school in September she won't be under our scrutiny so can revert to restricting. We're worried that the ED is allowing us/her to inch along knowing that in 2 months the world changes and much less support on offer so she (anorexia) can really take back control. That said, Dd is talking about stages/challenges - so at the moment she has to be told to start eating, one challenge is for her to say out loud "start", another challenge is setting out a pathway to reintroduce bread (not eaten for about 8/9 months)...

@myrtleWilson DD is taking olanzapine to try to take the edge off of the ED voice and calm the anxiety. It seems to work on the latter better than the former hence trying a higher dose to see if we can quieten the voice a little and help my DDs voice get a bit stronger.
My brother had severe mental health issues as an older teenager and he found olanzpaine the best anti psychotic drug for him. I am someone who has seen how powerful meds can be in helping with mental illness. My brother was sectioned twice and spent about 5 years battling with his issues. He finally got his meds sorted and is now married with two kids and holds down a full time job.
He says that without the meds to get his brain to a certain point all the talking therapies in the world would not have helped him. He had intensive CBT and still practises the techniques it taught him to this day c 20 years later and swears it changed his life. But he recognised that he could not have used it in the early days as it is v dry hard work and needs lots of repetitive practise.
He has been so helpful in making me more comfortable with meds for DD (and her dose is tiny in reality as it is different when used for ED rather than psychosis).
We have decided to tell DD about the dose increase as DH correctly pointed out that we must not betray her trust. So that is a job for tomorrow. Stuck with 2.5mg this eve. She had a good evening after a walk with a friend and ate most of a crumpet with her smoothie....
Thanks for the anger tips. We might try some of those.
It must be so worrying to be running up to 18. But it sounds like your DD is making some positive steps.
Hope everyone else’s day went ok.

Myrtle she just gets angry (with me) and then finds something to do to distract herself, tonight she was doing her science work!! It's so frustrating but I am doing my best to remain zen like and to exude confidence... it's not working yet though!!

DDs extra in her plan is an extra slice of toast OR crumpet OR weetabix in the morning, half a banana with her morning snack and a packet of crisps with lunch. All very normal but of course she is fighting it and bargaining down.

I have to leave for work before she eats her breakfast and I don’t trust DH to make sure she’s eating it - his own eating is disordered so she’ll use that against him, he gets shirty and he’ll leave her to it.

I’ve asked her to get up with me today so we can eat and chat. Hopefully she will otherwise I may have to see if my boss is willing for me to start work an hour later.

Not feeling my best today. Think it’s all getting on top of me a bit. Nothing has really set me off, I just feel like my head is constantly ‘full’.

I hear you re the head feeling full bit.😩

And trying but failing to appear zen like!!!!

Well she got up, but has spent so long in the shower that I’ve got to leave now and she hasn’t eaten. Bloody kid.

How frustrating for you... i love my DH but he gives in too easily. I have tried telling him he is letting the ED win but he still struggles so I get your pain...
Thanks to whoever recommended the FB group I have joined and it is if helpful advice and support.

It's so hard feeling like you're the one who has to monitor every meal and every snack. It feels like potty training a toddler all over again - really short windows of time available to do anything or go anywhere.

Can I also ask ladies if you get told anything on those ward meetings with the dietician, EDT nurse and CAMHs on a screen?

Hi Scribbly,
I’ve been with DD when she’s had her dietician meeting and her KW/EDT Nurse meetings and when she saw the psych. She has the last 15/20 mins with the KW on her own and I don’t know what they talk about unless DD tells me.

The hosp dietician was useless, but that’s because the hosp made mistakes on admitting DD which impacted on what she recommended. The EDT dietician was ok, but we’ve changed the meal plan with the KW and psych and she hasn’t been involved.

DD has been under CAMHS/EDT since Dec and we’ve had 2 letter updates, but they are only confirming what we have all spoken about. I don’t know what they discuss when they get together!

I’ve decided Thurs is my worst day. It’s the day DD plans her meals for the following week and it is the longest, hardest couple of hours of the week. It’s fraught, tearful, moody and angry, and that’s me and DD. I think I’m going to suggest we go back to week one now and just copy - 4 weeks worth of meals is enough to repeat I think.

@exLtEveDallas Today is our worst day.... rest day.... my mum is over again to help...
That FB group is amazing btw I have learnt so much.
After a difficult mon to Weds DDs mood picked up after a walk with a friend weds eve and she was much better yest although still secretly exercising.
We decided not to up the dosage of her meds (DH is v resistant and so is DD)
Then last night at bedtime she admitted (unprompted) that her walk with her friend ended early and she went to the field and ran laps..... I did not react particularly just explained that it was not healthy in her current state. I have also told her there will be no unsupervised permitted activity (she has a walk once a week for instance) and that is she goes for a walk with a friend she has to be dropped back by the friend. It is so hard as she cannot see her friend in the garden where I could keep an eye on her and in theory I cannot go along due to COVID...
She also poured hers own milk at snack yest and under filled the glas ]s and then bare face lied to me. She no autonomy in food either...she was so ‘up’ I let my guard down.
Lesson learned. She did not sleep well last night as a result and so is awful today.
Any way good vibes to all of you.

Sorry for people's bad Thursdays and Fridays.

DD seems very bouncy which unnerves me, literally bouncy, keeps doing tiktok dances so I'm worried she's using up calories.

Please share any useful nuggets from the FB group and don't migrate there entirely! I'm not on FB, possibly I should be, but having been such a longtime holdout I'm disinclined to give into the Zuckerberg siren call now.

We've just got a copy of the letter from the paediatrician to our GP. There are a string of obs numbers with no explanation. Does anyone know what sort of figures we should have for blood pressure?

Hers are lying 100/68 and standing 102/63.

Her heart rate is 97 lying and 104 standing. Which is too fast, I think, but then I don't know how much the stressful situation of having your rate done by a stranger in hospital with your parent in another room might contribute.

My understanding is that a ‘perfect’ blood pressure is 120/60, But is ok from 90/60 to 120/80. My DDs was 80/53 when last checked and they were worried about her. Your DD seems to be in the ‘good’ range.

At last check DD was told her resting heart rate should be in the 70s and I think anything over 100 is too fast. (DDs is under 50 and they said that even though she is sporty it’s too low).

Remember though that ‘white coat syndrome’ is very real and lots of people’s BP and heart rate rise when confronted with and doctor (my husband, who is terrified of doctors, was told he had high BP for years until they put him on a monitor for 48 hours and it was perfect!)

Some good news with those figures valley - is limited postural drop on blood pressure - at DD's observations this week she had one of 13

lotts - whilst the lap running isn't great, take heart in two things - she told you unprompted and your reaction was great. I think 'control' is an issue for lots of folk with an ED. They have a false sense they are in control of their ED but at the same time want parents or other authority figures to take control. For DD, we have to prompt her to eat I'd say 85% of all mouthfuls she takes - partly it is absolute fear (she shakes at eating) and partly it is her way of showing the ED that she's not choosing to eat.

We've had a rough few week mood/self harming wise and have asked for a meds review to up her fluxotiene as her mood is really low. However, on the eating front she's increased range of food by having veggie sausages, some beans, custard, a few hula hoops and tonight I'm trying chicken nuggets - keep those fingers crossed for dinner shortly!

Thanks @myrtleWilson she hates and resents me taking control but she is unable to resist the ED voice so I have to.... good luck with the nuggets...
@exLtEveDallas I was told the drop in DDs heart rate from sitting to standing by 10 was a cause for concern. Her BP was not so much of an issue. At assessment sitting was 63 standing was 73.

@myrtleWilson so sorry to hear about the ramping up of self harm. But that does sound like she's moving in the right direction with her food. A range of food is not a problem of dd (unlike her siblings), but everything seems to have to be exotic or healthy. For instance, I can't get snacks down her but today she wolfed down a couple of those totally disgusting Japanese mochis. It's an expensive habit.

@Lottsbiffandsmudge agree that it's great that she told you about the laps. I know we've discussed the problems for our kids of the continual healthy eating/fitness message, but I too find it hard to flip the switch to start thinking of running as a bad thing so it must be even harder for her.