Support thread (8)for parents of young people with an eating disorder

[myrtleWilson]

Welcome to anyone who is a parent/carer of a young person who has (or suspects may have) an eating disorder.

We're experts by experience and will share our insight - but obviously we're not medically endorsed, we celebrate all our small wins and provide a space for relief from the intensity of supporting a young person whether pre teen, teen or young adult with any eating disorder

Nan personally I'd be pushing for a tier 4, but I appreciate it's easy for me to say that as I'm not in your shoes. I've heard more positive stories about tier 4 than negative (based on when I was on the fb page) and I think your dd might need the intensive support to get her over the feeding 'hump' iykwim. I agree the ED will have ramped up to compensate the food going in which isn't necessarily a bad thing 🫤

I think my dd was always going to be susceptible to an ED, from age 9 or 10 she used to get upset about her body, she wanted to cut her tummy off age 10 😢

Lockdown gave her the opportunity to develop the ED though, I'm not sure she would have taken it as far if covid had not happened.

Covid has caused a lot of MH health problems for our poor children. They need help right now, ideally some quality easily accessible counselling in schools and colleges, and yet money is being wasted all over the place. I keep hearing about the PPE scandal and the sodding coronation and want to scream.. what about our suffering children? Schools and camhs can't cope and getting help from the GP is a struggle. I was on hold to the GP for 50 minutes this afternoon to get results for dds blood test, only to be told I needed to phone tomorrow at 8am to make a GP appointment to discuss it. The lady I spoke to couldn't make the appointments as they're all released in the morning. It's ridiculous!
So another long wait on the phone tomorrow for me to beg for an appointment 😞

Hi all, looking for any pointers please, I'm increasingly worried about my son restricting his food, skipping meals, lying about what he's eaten etc. He was fussy about texture/mixing etc as a young child but was eating healthily in late primary school, this has come on since starting secondary. My main question is how strict to be about this, I'm trying to get him to open up about anxieties, be compassionate, but i don't feel right letting him leave the house without breakfast, but at the same time the confrontation/forcing him to eat feels like it could be making things worse. Is there any evidence about best approach?

I have gone through BEAT, have signed up for a course, will drop into my local camhs, can't get a GP appointment for love nor money.

Any pointers much appreciated, thank you

Hi curlykate99

Sorry you find yourself here. Gp appointments are like hens teeth but it's so important your ds gets seen and gets physically checked. Some areas will let you self refer to camhs but some have to have a gp referral.

Ultimately though, it's at home where recovery begins and that needs to happen now. If he's skipping meals he's most likely losing weight and that needs to stop before he suffers any more of the mental affects that go along with the weight loss. He must eat 3 meals with 3 snacks every day chosen by you, prepared by you, and with you. It's much easier said than done but the sooner you get control the better.

Generally, physical activity has to stop. Sometimes school has to stop.

Beat are great as is Eva Musby. Reading through these threads is really helpful too.

Thanks for the reply bagpuss, I'll have a look at Eva musby.

Is it common in the early stages to not be sure whether it's really a problem or not? Some days he seems fine and he often eats pizza, cake etc. and I think I may be overreacting.

I'm sad to hear that we may be advised to stop physical activity, I thought getting out and doing a walk in nature etc would be good for his wellbeing, he doesn't overexercise at all and would happily sit and play video games all day given the chance, surely that can't be healthy either?!

@curlykate99 I am so sorry you are going through this. Orri have a webinar next month (I know it is a while away but it is worth signing up to) on eating disorders in men www.orri-uk.com/support-for-recovery/workshops-and-events/ you might find it helpful.

@curlykate99 hi
It is common to think you are over reacting. But you have to listen to your gut. If you think things are not right they probably are not.
Adolescent boys need a huge amount of calories and cannot afford to skip meals.
He really does need to eat 3 meals a day and snacks too.
Often before an ED is 'called out' it appears as if they are eating xyz so they can't be ill. But often xyz is eaten because a deal has been done by the sufferer with the ED. For example 'I can have this pizza because I skipped lunch'
Stopping activity is an issue if weight loss means they are too underweight to safely exercise or if exercise has become compulsive.
EDs really get hold when weight loss happens and so nipping this in the bud will save all sorts of issues.
I would really try to get him to the GP for a physical check up. So you can make sure he is physically OK and be referred
And yes I would start making him eat before this. His reaction to being asked to eat meals will likely tell you how bad things are. An extreme reaction will likely mean he has an issue.
Boys of this age can lose weight rapidly. So act now.
You know as a parent that a year 7/8 child should not be skipping meals. So yes there is an issue.

Oh and it's also v common to think backing off will.help. it doesn't of there is an ED.
And When I say 'force' to est you have to coax, cajole etc. Eva Musby is good for hints.

Thanks Lotts, that makes absolute sense and I know I need to tackle this head on now before it gets worse, as scary as that is. I will physically go to the GP practice on my day off next week to insist on an appointment.

Have just watched one of two of her videos and it has given me confidence to stick to my guns with the "I'm your mother, I know what you need, you have to eat this" approach, which I have been doing, but perhaps with a bit of shouting and too much compromise.

Bloody hell, I hope we can get this under control, my poor baby :(

Stopping physical activity and going part time at school was recommended by our camhs therapist at our first appointment. It was really at that appointment that I realised the severity of the situation. Even walking burns a lot of calories especially when it's very hot or very cold. I had to deliver dd to school door to door as well.

How old is your DS?

He's 11. His reaction to being told he has to eat is to eat very slowly, complain, say he'll take something with him and eat later (but then I find it hidden or left), say he's full or feels sick or has stomach ache, try to negotiate a smaller portion, occasionally coughing or gagging. Yep I know writing this out that it's not normal and not ok. Thank you all for the wise words. Renewed determination to do better from tomorrow.

curlykate99

His reaction certainly sounds like ED. He's only 11 poor baby, but that's also good because presumably he's not that independent yet, going out with friends etc for days where you have no idea if he's eating. School can be tricky if you're not sure if he's eating. Some schools are really good and will sort out a space and maybe a staff member to sit with him. Some parents go to the school and sit in the car. Part time with school coming home at lunch works for some. You'll find a way.

It really is all about preparing meals and sitting with him until he eats, however long it takes. We watched TV while we ate as distraction can help. Keep him at the table for a while after he's finished as some can purge or get guilty feelings right after eating. We played board games. It's difficult at first but keep going, keep strong and positive and you'll establish a routine.

Take time for yourself. This is the hardest thing I've ever done, way harder mentally than the toddler years. It's important to keep strong mentally and to take time out for yourself. I go for long walks alone to process everything.

Fortunately no purging. School have an electronic system so we can see what he's bought, part of the problem there is that he gets a choice and is sometimes overwhelmed by that, or the time pressure is too much for him, so will work with him to pre-choose some meals.

Breakfast went really well today with the firm approach, no choice, focus not on the food. Thanks all for the advice.

I agree that distraction is your best friend for getting food in. We watched TV, made lego, played card games etc. It takes some of the pressure off them.
If its half term next week for you i would seriously consider taking the week off work and taking the whole week to establish some routines.
A big help is a meal and snack plan. Plan all meals and snacks and lay out a document of times and menu items for each day. This helps take the fear of the unknown away. Try to include fear foods rather than all safe meals. I tended to do an 'easy' lunch with a more difficult dinner.
Also write down specific snacks and also drinks. So my DD had to have milk with lunch for instance

Our meal/ snack times were 7am, 10am, 1pm, 4pm, 6pm and 9pm.
Having a plan (not negotiated by him btw!) Gives them a get out clause with the ED ie 'I have to eat this it is on the plan'
It also helps you as carer as you have a way of not negotiating. A plan really helped us.
Then it's a matter of getting the food in a meal at a time.
And baggy is right try to look after your self too. It can be a long slog.
But do persist with the GP to get a physical check up too.
Has been earing more than 500 cals a day? If not and it's been for a while you would be advised to go to AandE.

Sorry i cross posted. Glad breakfast went well.

I posted this on this board last night after a long chat with dd where she opened up more than she has since this all started. She went to bed and I sat up processing it all and drinking too much wine.
(I know that it was the wrong thing to do but Dh is away and I was in a bad place)
I think the chat went well but I'm so scared I'm going to make it worse.
C&p

My beautiful, intelligent, thoughtful 16 year old daughter is tangled up with an eating disorder.
She's currently on week four of her counselling with the college counsellor who thinks that she might have anxiety too.
I'm out of my depth. But I'm also a long term bulimic. I am not affected day to day anymore but i know that if something really awful happened there's a chance that I may revert to the same coping mechanism.
I want to support dd as much as I can and we talk and she's hopeful for recovery but sceptical that it can happen.
She has a phone call consult through the nhs this week. I'm hoping she engages.
I want to help but I'm scared to make it worse.
Can you help me please.

IfYoureGonnaBreakMyHeart

I'm so sorry. That sounds so difficult for you. I'm glad your dd is getting help and also glad to hear she will open up to you. Keep those chats going as much as you can to drown out the ED voice in her head.

She'll need to be physically checked and possibly have bloods done, hopefully the econsult will get that ball rolling for her. Also get a referral to camhs if you can't refer her yourself in your area.

Do you get any ongoing support with your bulimia? As you go through this with your dd I would think you'll need some support for yourself. It's quite easy to slide downwards mentally on this journey so please take care of yourself.

There's so much info out there. I always recommend Eva Musby bitesize to start as that really helped me. She has youtube videos as well. There's also loads of great advice and info on this thread and the previous threads from parents with a lot of experience.

Thank you, I'll have a look at those later when she's at work.
She's had a gp appointment which was awful. The doctor just kept telling her she was a beautiful girl.
She weighed her but I asked that she wasn't able to see the number.
She mentioned bloods which dd didn't want to have done so I just left it at that. Then the gp just gave us a leaflet to self refer. It felt like a pointless appt. Especially given that I had requested it last may online, they completed the request in October but never did anything about it. They were very apologetic about it in November. I thought we were just on a waiting list.
I emailed the college counsellor in October to see if she had space and that is what she's accessing now. The counsellor has told her she needs to get more help and be under the eating disorder team.
It took me two weeks to get her to make a start on the self referral but she couldn't write why she needed to be seen so I did that part. The call next week is to asses her over the phone. It's 45 mins long. She's dreading it.

No I've never had help. I was deemed to be selfish and attention seeking so I just kind of figured it out in my mid twenties. Dh came along and helped me so much.

Hi everyone, apologies for posting and running last week. I can't thank you all enough for your comments. I was too raw to respond straight away but I read them all and I'm still a bit shocked that CAMHS didnt tell me this was a common thing. I think we got a bit unlucky: both the ECP senior leads had covid and the person left is very junior.

Our lead got back from sick leave on Wednesday and DD had started gaining again, 400g since last week. My relief was huge. Lead was very helpful and firm with DD and warned her that things may have to change again which she took because the lead is an expert whereas I am not. But I feel much more able to handle a blip if (when?) it happens again because I know I can cope. I also know that getting very emotional in the room with her at CAMHS was really counterproductive and poker face must be the way forward.

@Valleyofthedollymix "If you've ever been on a diet yourself, you know that weight loss/gain is rarely linear or logical. DD's psychiatrist used to say that +/- 250g was a maintenance, anything over 500g (ie 1lb) was a loss or gain. If she keeps either gaining or maintaining then things are heading in the right direction."
I had absolutely forgotten this because I'm not much of a dieter - thank you. The weight change is exactly what the lead said when she got back.

@myrtleWilson myrtleWilson "You've had a real positive from your DD - thanking you for being strong for her - thats so insightful of her and a recognition that she wants you to keep going for her (I know you will anyway).
we called out of hours CAMHS crisis line."

@Lottsbiffandsmudge "After a day of ED running the show with all the accompanying vitriol and self harm and incessant movement. These glimmers kept me going. Your DD is in there desperate for help, needing saving."

Thank you both for reminding me. She was at me today, pecking and pecking at everything I said and eventually I shouted at her. It is really good to be reminded she's not choosing to be like this.

@Girliefriendlikespuppies "in some ways a small loss or maintain I think helps your dd understand that all the food you're making her eat isn't going to suddenly make her gain loads of weight which is what the ED will be telling her. It helps rationalise the situation a bit, to gain weight takes a massive amount of calories and that amount increases with each gain they have."

This is a really helpful reframing and I will think how to use it - thank you x

@BagpussSaggyOldClothCat "I keep hearing about the PPE scandal and the sodding coronation and want to scream.. what about our suffering children? Schools and camhs can't cope and getting help from the GP is a struggle." And thank you for your help with my situation as well.

YES. For me it's HS2. I live nearby and watching ancient oak woods being torn up for this pointless, monstrous vanity project which will be obsolete by the time it's finished. I am a school coach, I work with ESL things like stress, relationships, organisation, planning, exam prep etc and I have clients with depression and self harm issues for whom I am holding the space because it's better they see me than are left in the cold.

@IfYoureGonnaBreakMyHeart "The call next week is to asses her over the phone. It's 45 mins long. She's dreading it."

The call is actually fine, it's mostly yes and no questions and the person doing it will be very neutral. She won't be judged or have to give a long explanation of what is going on.

I dropped off the thread for a few days as it's been dds (17th!!) bday here and it's been pretty busy.

Dd had a nice bday, she requested a Dancing Queen birthday cake which my mum and I made and it went down really well, she even asked for a bigger piece! She liked her presents and had friends for a sleepover which went well.

We're now getting the pushback and guilt but I think it's less than last year after her bday so I'm holding on to that as a positive!

We're almost 3 years in now as the first obvious signs of restriction started after dds 14th bday and although we've come a long way it feels like the ED has cast a long shadow...

Curly I can only echo what everyone else has said, yes to insisting on food, yes to pushing the food in and yes to being right to be worried. It definitely sounds like your Ds is at the start of an ED and some of the behaviours are there already.

I'm sorry you had that experience, ED are highly misunderstood.

ED are known to be strongly genetic and there is a gene that is responsible for anorexia which activates when weight loss occurs. If you haven't got that gene and lose weight the chances are you won't develop classic anorexia with the associated behaviours.

Is your dd restricting or purging? I would strongly encourage her to get the bloods checked, EDs can have unseen consequences for the body and you need to know that the internal organs as well as her electrolytes are stable.

Can you self refer her to the ED Camhs service?

It's never too late for you to look into some counselling to help unpick your own issues around food. EDs are incredibly common, I suspect much more common that the stats reflect as a lot of sufferers just suffer in silence or don't get a sympathetic dr so hit a brick wall when looking for help.

Quick update, going to plan, although he has tried to hide food a couple of times while I was distracted by my other son, but no overt resistance other than the occasional "I'm not hungry". He's finishing what we give him but it takes him twice as long as us to eat the same amount. I've been using music/videos, thanks for the tip.

He's definitely getting more than 500 yes, even before we started being strict, and I think he's probably at the lower end of healthy weight still. Fingers crossed for fruitful conversations with camhs and GP this week.