Teen Eating Disorders support thread 3

[Girliefriendlikespuppies]

Thought I better get a new thread going!

Please come and join us if your teen is struggling with an Eating Disorder. We are a kind, supportive bunch of parents looking to support each other through the dark days of caring for a teen with an ED.

Been lurking
Lil zoo had check up yesterday.ED team declared she should return to school 2weeks ago,depression was main issue eating classed as disordered.she disclosed paranoia at online support on Friday last week.was weighed yesterday and has lost 1kg since last visit 2-3 weeks ago.shes not doing p.e but has gone from eat twice a day,tea always being hummus veg and fruit with a pitta( and sometimes soy milk and a biscuit)and lay in bed mostly/not moving to walking school and doing everything but sport, uncertainty over lunch and still maintaining her hummus tea....we have dietetic app today and we're informed the plan to take advice on encouraging variety has now gone with weight loss to feeding plan instructions and I will recieve a team meet instruction on managing her resistance.shes currently still in range of healthy weight,but I'm aware If she continues drop at that speed it won't take long to not be.im a bit thrown by sudden change in their attitude and medic telling her she must comply to food plan and if doesn't "horrible things will happen she doesn't want,including having to go to hospital"

Welcome @Iwantacookie I'm glad you found this thread. The early days are bewildering but it helps to have other people to talk to.

@Stilllivinginazoo it sounds like they're finally listening. I hope the meal plan isn't too traumatic.

DD1's psychiatrist had to cancel her appointment yesterday, which is frustrating. I had to phone the GP because DD1 hasn't been feeling well, is really constipated and the last two days she's been going back to sleep at 9 am after waking at 7.15, then sleeping for 3-4 hours. That's after having 11 hours in bed at night. The GP was pretty good and wants her to have a blood test today. Drinking is still pretty bad.

Good morning. Hello to @Stilllivinginazoo and @Iwantacookie . We are still at the beginning of recovery. It's taken 4 weeks for dd (17) to gain 300g and she has now said she is off the meal plan because she needs to lose it again. I feel broken.
Sorry for everyone else feeling like this today. Wishing you all strength to support our lovely kids. We can do this!

Am glad your GP was on the ball lougle

sm701 - recovery is hard. At the beginning there is a rush of momentum, adrenaline but this is hard to sustain. My Dd is feeling it very tough at the moment - we are 9 weeks in and the last week has seen lots of wobbles and some conflict emerging.
She is tired from trying to eat, to not self harm, to socialise, to start using her brain again and it is exhausting her. She says she needs to sometimes eat food that is within her comfort zone (fruit for snacks for example) our fear is this is the path to restriction and we need to block it. We're probably both right.

Hold on in there - it's all we can do really

Well ahead of the call from dietetics she's requested cereal.shes not eaten cereal in over 12 months...had 2shredded wheat

Oh gosh @Stilllivinginazoo and @Lougle, that sounds really tough for both of you.

Another day and another one where DD has eaten a lot just not quite enough I fear. She comes home for lunch on a Friday and I gave her a big bowl of pasta and a yoghurt. Now for the afternoon snack. Sigh. She says she's bored of it. Me and her both.

I am cross and frustrated
Call with dietetics was ok.discussed lil zoo eating patterns,deffo doesn't eat enough.then she said about her IBS.i mentioned yesterday's loss and feeding plan.eas news to her.seems we were referred community dietetics not in-house ED one..she said would ring them and sort a plan by teatime.theyvrang me and said our system requires a teams assessment so we have email one our dieticians and she will get back to you(asked how long would take she had no idea)meanwhile continue as you are

It's all rubbish isn't it? DD1 has had 3 chocolate hazelnut croissants, pringles and a batch of pancakes today, plus ½ a cheeseburger.

Well hospital discharged dd today. Down from 100% to 94% and eating 600. Withdrawn, low, demotivated and doesn’t speak to us. Refused to go into school with her snack as hoy was going to monitor it. Then had a call as she hadn’t turned up. Finally did but ate nothing. They were awful in clinic, patronising, dismissive with shockingly poor awareness of ASC. Basically said after 5 admissions CAMHs would refer her back when she’s dropped back down. Apparently she needs to dig deep( like she hadn’t already) .CAMHs still brushing off the fact she can’t access FT and doesn’t speak to anyone. Apparently CAMHs will be doing her obs and I’m not to contact our GP. I don’t really trust them to keep a proper eye on her as clearly they just want her off their books.It was frankly appalling and I’d be ashamed if I spoke to anyone at work in such a condescending way,completely devoid of empathy. Patronising and completely misinformed doesn’t even begin to describe it.

CAMHs do not keep us informed re her weight. They don’t think it’s helpful so we’ve got to crack on with her not speaking, in her room 24/7 eating 600 calories having no idea what she weighs. I’m completely confused, is this level of restriction not a problem? One spark of joy. Assertive outreach took her out and she had a coffee and cookie , apparently reluctantly but she did it. No way on earth would she do that with us. Refused everything else as now feels sick, apparently .😩

Hi @Scr1bblyGum
It sounds like you are really having a bad time. I've been told off for letting DD see her weight (it's hard to argue with an almost adult child here). Yesterday When she saw she's gained 300g she went on hunger strike. I'm not doing that again!
Just wanted to reply so you know you're not alone. We are all just hanging on with our finger tips some days. Feels like everyday at moment.

Hello lovely people. I don’t think I’ve been on for a little bit. I’m not quite sure where the time has gone!

So DD was discharged last Friday. We had a relatively nice weekend where DD actually seemed fairly upbeat and positive about the road ahead. We came up with a meal plan together where I tried to give her a challenge each day with a food that she had grown to not want to eat. I thought the meal plan being a collaborative effort would hold us in good stead for the coming week. Now in hindsight I think it has allowed the ED to still feel in control so I think I have to knock that approach on the head.

It has been a really tough week with DD experiencing total mental anguish at times. It is so distressing. When I see her like this battling with the voice in her head it really demonstrates how much of a mental illness this is. It is genuinely awful. At times I have thought to myself that if there were any sedatives in the house I’d give them to her like a shot! DD says that she is in constant turmoil with the ED telling her that she’s worthless, that she’s not really ill, or not ill enough, or that if she finds it too easy it means that she’s lying and she doesn’t really have an ED. She is supposed to be seeing some of her friends for a few hours this evening. I thought it would be a welcome distraction to give her some time outside of her own head. But instead she’s paranoid that when they see her that they will think she doesn’t look thin enough and they will think she’s lying about it for attention. She says she wishes she could go back to before I knew about it because it was much easier then and the voice is louder now that she’s being forced to eat. She says she wants to give up.

Having said all that she has eaten everything put in front of her despite everything being a constant battle of wills followed by tears when she eventually realises i’m not giving in. I am immensely proud of her. Weight wise she remained exactly the same when I weighed her last Saturday after her 5 days in hospital. I have just weighed her this morning and she has put on 700kg so I am seeing that as a huge success. Of course DD not so much...

We had our first parents teams meeting on Wednesday. The service say that ED diagnosis’ have increased by 900% in our area over the past year. The immediate knock on effect of this is that they have had to slash their treatment from what used to be 32 to 40 weeks to a paltry 8 weeks before you are discharged. I don’t think DD will even be weight restored by then let alone anything else. I have managed to find a private therapist that specialises in eating disorders for DD to see and she has her first session this week. I know that the NHS don’t advise this but considering they plan to discharge her in 2 months then I want DD to have another provision in place.

We have our first session with her care coordinator on Monday. We will see what that brings. And I am hoping that her seeing some of her friends for a couple of hours will give her a little glimmer of normality and positivity.

Onwards and upwards! 🤞💪

@Scr1bblyGum that sounds like a really really hard situation. Can you perhaps draft an email to your CAMHs team and ask if someone can please explain to you what you should be doing to keep her safe. Detail out in bullet points the concerns:
*no communication
*eating 600 or less calories a day

• locking herself in a dark bedroom all day, won't talk to you or engage with anything
• your fear of what she is thinking and how that is affecting her mental health (depression or worse)
• your families mental health as you are lost in how to help your DD, you feel you have no guidance or support and simply can't cope like this. THIS is a key point in my opinion as if the carers are lost how can you be expected to help DD?

I don't think you can just let her continue like this; Why can't you contact your GP? I'd be asking them the same questions as above. After 5 times around and at the stage you are now I'd be asking everyone and anyone, anything to help your DD.

It sounds like knowing her weight is the least of the issues here as her mental state is struggling and perhaps 100% is not enough for her to be able to stop the AN brain thoughts and she needs more?

For my DD they said target of 90% but they will know if she needs to gain more as the AN thoughts will either start to go or not and if not she needs to be a higher weight.

Sending strength and positive thoughts

Zoo I've had IBS ever since I was a teen and it was awful around the age of 17 when I lost a fair bit of weight (unintentionally) what helped me was a very bland diet with hardly any fibre/fruit or veg. Basically white carbs 😬

I also had to work on generally relaxing so lots of relaxation tapes. With weight gain the anxiety lessened anyway.

Scribbly I really feel for you, your Camhs team have been awful since day 1 imo.

Valley how has the lunchtime supervision gone generally? Eating disorders are seriously boring so I agree with your dd there 😉

We're plodding on here, very like Groundhog Day really. Dd eats pretty much the same foods every day, there's no movement on eating anything outside of the set meal times 😕

On a positive note she has got her first ever date tomorrow 😁 a boy (who sounds nice unlike the last one) has been making quite an effort to talk/impress her for the last couple of weeks. They're going for a walk tomorrow, don't think it will involve food but I'm hoping this will be a positive step for dd and help her confidence as well.

Dd has mentioned another one of her friends is skipping lunch 😫 I really wish there was more done in schools to warn of the dangers of ED.

Obvs I meant 700g not kg

@Rollergirl11 She is supposed to be seeing some of her friends for a few hours this evening. I thought it would be a welcome distraction to give her some time outside of her own head. But instead, she’s paranoid that when they see her that they will think she doesn’t look thin enough and they will think she’s lying about it for attention.
My DD says exactly the same thing, its a circular conversation for us as whatever I say I'm not right. In the end I had the CAMHS nurse talk to her about it and we concluded if the friends don't believe her what does it matter DD knows herself better than any of her friends. Also if people are not compassionate about a struggle DD is having are they really friends? or are they perhaps 'frienemies' and bring trouble rather than happiness into her life.

Surely if DD is still struggling and not at target weight they can't discharge her from their care? That wouldn't be safe? I'm glad you've found a private therapist to help. I have also done the same as 1 meeting per week simply isn't enough for DD she needs something in between. I've explained it to CAMHS nurse and she understands, though I don't think she approves from her job position but I think as a human she does approve.

Roller I'm glad you're home and your dd is following the meal plan. It is completely normal for the mental distress to go through the roof when they start eating again unfortunately 😕

Have they offered your dd any meds? Olanzipine is the one that seems to help with quietening the voice (and increasing the appetite..)

I would not involve your dd in any food related decisions, she's just not well enough atm. My dd is 96% wfh and still not able to make any sensible decisions around food choices 😕

@SoTiredNeedHoliday I think deep down DD knows her friends wouldn’t judge her in this way (they really are a lovely bunch) but it’s just a stick the voice is using to beat herself with. And you’d think they wouldn’t plan on discharging before they are ready but they are obviously swamped. 🤷‍♀️

@Girliefriendlikespuppies we haven’t actually had our first session with her care-coordinator yet, that is on Monday. There has been no mention of medication so far although I have seen you guys mention it on here. It will certainly be something that I raise in our session.

@Scr1bblyGum so sorry to hear how much you and your DD are struggling. It sounds like your CAMH’s provision is really failing you all round. I would ignore what they say and get in touch with your GP!

@girlfriendlikespuppies.what sort IBS did you have?lil zoo tends to "not go" and lots pain.she needs a lot fruit n veg keep things going and shouldn't really have onion/garlic but they're her favourite and would rather suffer than not have them😞
One her friends currently always on about getting enough steps in and fretting about her lunch- she dances competitively so I assume the chocolate bars etc are to get enough calories in but she worries her mum try make her fat.lil zoo does struggle with that.the steps she tries not get involved but she does seem drawn by the perception of what's healthy.doesnt help how many times whilst in primary they bang on importance eating lots fruit n veg and not having chocolate/chips/crisps.i understand the need to educate but moderation in everything,not such a blanket black and white approach would surely be better?hope things with the new boyfriend go well
Scribblygumthe quality of care you guys have had has been awful.is there a complaints service?I agree with tired about bullet points and asking how to keep her safe
Roller girl I don't understand how they can justify reducing care so dramatically,surely it requires more fundingrather than offering a scratch the surface then expect you to crack on by yourselves.makes me so angry for both you and scribbly
Sending positive vibes and hugs to all who need it today

To be fair there are good pockets in the CAMHs service. It is hugely disjointed though and they aren’t listening. Their ASC expertise is woeful. In this instance it was the hospital team who were shockingly poor.I will be complaining via PALS re a few things eventually. The dietician completely dismissed me saying dd was struggling to access the therapy. She grilled me re the meal plan in a hugely passive aggressive and patronising way repeating the same question over and again not listening to my answer. Telling me off for raising my voice when I was crying.Very much felt like she was inferring I hadn’t followed it properly. I was trying to say I couldn’t make firm guidelines to dd re dropping a snack or dessert because she’d eaten sfa all week. You can’t take a dessert away if she hadn’t eaten the main meal.She said ASC children can open up as she has a family member who can. I was dumbfounded. Children differ hugely and actually it’s not uncommon with ASC so she’s hugely misinformed. Aside from that my dd can’t and is struggling so frankly I don’t give a shiny shit about her family member.

Dd has eaten nothing all day as she says they said she’s fine so doesn’t have to. Bloody fantastic!

I absolutely hadn’t raised my voice either. Too busy trying not to let my voice get wobbly and choke back the tears She said that to patronise and undermine. It succeeded.

@Scr1bblyGum there are some people who are in the wrong career and it sounds like you've met at least one of those recently... I hope you write an email and have your queries logged in the system and force someone to help you or at least follow up formally on your queries & concerns.

TBH i'd be also putting in a complaint and requesting a replacement contact for the dietician, shaming parents is no way to get our children better and it's no way to treat another human who is struggling with one of the most intense things they will ever have to do or go through... it makes me so upset to hear what you have had to deal with.

Keep on going, be strong.

I will but rapidly thinking I should just give up. It’s like I’m talking gibberish. Nobody listens. I’m not even asking for much or anything outlandish.It’s bonkers.

She’s had a Naked noodle pot and a vegan dessert pot today. That’s it. I know my dd. The more she restricts the harder it is to claw it back. Thinking I should just put up and shut up.Stop trying to get her to open up so we can support her and work through the AN like they’re supposed to. Stop trying to get her the professional support to do that. Plonk the 3 meals and 2 snacks on the table not offering a late night snack as per the new rule I was grilled on regardless of how little she’s eaten( literally only crappy advice we ever get from the hospital), leave her to her sensory issues and kick back and relax with a very large gin..There is nothing to worry about after all, I’ve got her up to 100% before apparently. It was a doddle.It’s so bloody easy and all kids can open up and access therapy because the dietician said so. If she ends up hospitalised for a 6th time they can all sort it out. It’s no biggy. Who cares about NHS resources, her quality of life or education.

We were told to dig deep. I nearly started to laugh manically at that point. 😂

How are things with you Sotired?

Morning
Anyone else up half the night? Not sure if it's extreme stress or peri menopause , it's not helping. The full horror hits at 4am that's for sure.

I was and yes 4am is when I give up trying to sleep completely. Struggle even to read. How are you feeling this morning?