Support thread 10 for parents of young people with an eating disorder

[Lottsbiffandsmudge]

Hi guys
Here is our new thread. I will add a link to it in Thread 9

@Damsonsky sorry you find yourself here. I'm pretty new here my ds 10 has an eating disorder always a fussy eater probably arfid but due to weight loss has tipped into an.
I'd suggest talking her to the gp, asking to be referred for some support. Is your daughter aware of your concerns? Maybe sitting down and asking or explaining why it's a worry. My son didn't have any weight to lose, he was naturally thin so he's lost it very quickly by skipping treats and saying he was too full for pudding within about 5 weeks we were admitted to hospital from a&e, gp wasn't too concerned as he's very active and we were on a waiting list for a paediatrician whilst he lost between 2-3lbs a week.

Hi Damsonsky

You're right to be concerned. Although her weight isnt dangerously low, an already slim teen skipping puddings and treats and steadily losing weight is a red flag. Have you managed to initiate a conversation with her about how she's feeling? Restricting can often be due to anxiety or a feeling that she's losing control in areas of her life. Is she happy at college with good friendships etc? At the early stages dealing with the root cause of why she's feeling the need to restrict can really help. Like Proseccoismyfriend says if you are finding this continues then it's best to get a GP appointment so she can be checked physically and possibly be referred to the eating disorder service.
I very much doubt any of this is due to your own weight and your slimming journey so please don't feel guilty about that. Teen girls generally aren't that interested in their mums looks. It's more likely to be anxiety, peer pressure/comments, social media, friendship issues, education issues etc or a combination of the above.

Sorry to hear everyone's difficult news, although it sounds like there's glimmers of hope.

My 18 yr old ds is doing a weekly weigh in with us and I'm pleased to say that he's slowly putting on some weight (the cream, butter, peanut butter, cream cheese & mayonnaise seems to be doing the trick). He doesn't look any different though, maybe a little less gaunt in the face.

Still needs to put on 6/7kg at the very least but feel some hope that he's heading in the right direction as not heard back from the ED clinic (except for a phone call from the dietician, which wasn't particularly helpful).

He is still exercising too much but that won't stop yet as it's his coping mechanism for the ocd, let's hope the meds help this.

Feel slightly, ever so slightly, less anxious about the international trip this week.

A friend's daughter stayed with us this weekend, she was in an ED clinic around April this year but now she's making good progress and ate so well with us.

Keep up the hope, ladies x

@damon what you are describing is very much what was the start of my DDs eating disorder. It took another 6 months for me to really twig what was going on so you have done well to notice.
Lots of teen girls (mine is 16) go on diets (she didn't need to) and so initially my worries were brushed off but the thing that clarified it as an eating disorder was the huge amount of distress in being asked to eat that garlic bread for example.
Categorically there is definitely no sure way to get your child to be AN so please don't point the finger at yourself. My DD says it's ironic that she has it rather than her best friend because her BF's mum is always telling her BF she is fat (:she is not!) and so lots of other factors come into it.

@BagpussSaggyOldClothCat I think you nailed how I feel about the ED at the moment. Routine and consistency manage to keep things chugging along but that also takes huge efforts and sacrifices by the rest of the family.
Does anyone have any ideas on how you challenge routine gently or introduce more spontaneity without causing an overwhelm?

So I had a meltdown at the dinner table last night. It’s not supposed to be me! DD13 is being, well, 13 and is pushing all my buttons. DD11 (the one who’s underweight) grasses up the big one for getting off the bus early every day so she can faff about in town. This means the little one is walking nearly two miles to school every day when she’s not allowed to exercise or be in school all day because the walk between classes is too much. You literally cannot take anything for granted. I’m so angry, and sad, and tired.

Damon you are right to be concerned as that's quite a significant weight loss when she was a healthy weight to start with.

That said at 17 you're in a really tricky position as they are generally v independent. You can try talking to her, explain why you're worried and point out that weight loss is not healthy. Explain that continuing to lose weight will make her v ill and possibly tip her into anorexia.

I would ditch all talk of slimming world and avoid bringing low calorie snacks etc into the home. Your diet either needs to be done completely under the radar of your dd or ideally stopped until she is eating enough.

Do not talk about your own weight or being fat as a negative but instead try and be as body positive as possible, I try and say things like 'everyone's body is different/my body is strong/I like my body just as it is'

I would also ditch the scales or at least hide them so she can't weigh herself. It was the frequent weighing of herself that started my dd into wanting to lose weight.

If things don't improve or they escalate you'll need to speak to her GP and try and convince your dd to see them.

Be prepared for complete denial from your dd though as that's v normal for someone with an ED.

So sorry for everyone still spinning on this merry go round.

I'm just wondering how everyone has managed to keep going as a carer when everything feels too much?

In addition to DD14's illness (stuck, or going backwards) my DS10 is dealing with extreme anxiety which has now become school refusal - he was so distressed this morning he scratched his own face (which is really triggering given DD's SH - Ds Isn't aware of this). He's already had a camhs intervention and was doing so well, but getting a new teacher after the summer has sent him back massively.

DH has been made redundant, and his DF has terminal cancer and is going down rapidly. We're the only family that lives nearby so it's falling on DH to shoulder a lot of the responsibility of caring/checking in. He is struggling to cope which means he isn't in the best frame of mind to cope with the kids issues, and frequently becomes frustrated and angry. Meaning I feel I have to step in and take over all the kids stuff so it doesn't escalate.

We have some runway with DH's severance pay, but as I've already taken 5 months off work I can't take any more time off as I won't get paid and we'll have no income at all.

After this morning eventually getting DS into school I just can't stop crying. I've had to miss all my work calls this morning. I've got a call with my manager to let her know what's happening, and work have been amazing so far, but it doesn't change the fact I have to keep going.

I just feel like im going to break under all the pressure and I wonder how I've managed for both my kids to be struggling so much and want to hurt themselves. I always tried to be a good parent but I've clearly messed up massively

@LittlePickleHead I can't reply properly I'm at work but your message popped up. You are amazing and haven't messed up, make yourself a cuppa and be kind to yourself, until you've walked this path you really don't know how hard it is and you have other worries with your husbands father & job.

LittlePickleHead You are a good parent. MH issues can hit anyone at any time for a million reasons. However I understand that feeling of wondering where on earth I went wrong 😔
So sorry to hear of DH's redundancy and FIL illness. A lot to cope with on top of everything else. My FIL has been ill for some time now and DH is doing increasingly more care for his parents. It's a huge drain on him emotionally and I can't really be of much support as my priority is DD.
School refusal is incredibly hard to deal with. So sorry your DS is SH because of it. I went through it with DD. A change of teacher is huge for a child with anxiety. I really hope school support him well and have good strategies to make him feel happier going in such as going in before or after the crowd, which did help my dd. The FB group 'Not fine in school' is helpful.

I didn't think I would ever be posting in a ED thread. But here I am. My DD16 is so slim, always has been but since September I have noticed she doesn’t seem to eat very much at all. She never has breakfast, has lunch at sixth form, I checked her account tonight and she only eats a fruit pot from the canteen at lunchtime. Dinner she prepares herself as she is vegetarian and doesn’t want me to cook anything for her. She doesn’t eat bread, potatoes, meat or crisps, all very healthy tiny bowls of food. Tonight I got a call from her sports club coach. They are very concerned about her, she has no energy and couldn’t keep up with her peers, which is a drastic change from where she was a month ago. She said she felt faint and was taken aside to be spoken to, she got really upset and said she hadn’t eaten all day. They gave her some biscuits and talked to her and then called me.

She came home and didn’t say anything about what had happened tonight, I didn’t tell her that they have called me. I asked how it went and she said fine. Another mum has messaged me an hour ago asking is she ok, and they are worried about how slim she is.

I have no idea how much she weighs, but I would say she is between 6 and 7 stone. She wears baggy clothes, joggers and hoodies. Her legs are like twigs.

I will fill out the form for the doctors in the morning, I just don’t know what else to do or where to go to start getting some advice and help for her. 😞 I am so worried.

Hi @Dinnerisburnt sorry you find yourself here but welcome..lots of great posters will be along with advice.
It's quite clear she has an ED. Other than the weight loss and restricting she is controlling food prep (classic ED) and if she has recently turned veggie that is also a classic sign.
Firstly it's really important you get her to the GP. It sounds like she has been eating very few cals for a while and this can have a really bad physical impact, esp on the heart. She needs full blood tests, sitting and standing BP and heart rate, an ECG and also a referal to your ED services. You may be able to self refer depending on the area. I'd look into that, but still get her medically checked ASAP. If you can't get in to the GP urgently (today) I would take her to A&E. I don't want to alarm you but rapid weight loss and eating v few cals for even a short time can have very serious implications v quickly.
I'd take her out of school (is it half term next week there?). She needs to stop sport.
Explain how worried others and you are (it adds weight to the argument if 3rd parties have 'noticed', its not just stupid mum making a fuss) and that she is not eating enough to sustain herself. And needs checking out.
Then explain that her eating needs to change. Starting with 3 meals a day as a min..she could be at risk of refeeding syndrome so she needs those physical checks before you really ramp up the cals but she does need to eat more immediately too.
There are useful books by Eva Musby and the Beat website is very useful.
Once the ED is called out in this way if will really ramp up the opposition. Expect massive resistance. I thought of the ED as a terrorist in my DDs brain..it sneaks along quietly achieving weight loss until it is called out and then it fights back to keep the weight loss going, by any means possible. Hysteria, violence, aggression, duplicity, lying etc etc. It finds your buttons and presses them.
Once it is clear she is not in immediate physical danger or at risk of refeeeding syndrome the ED services will instigate a food plan which will consist of 3 meals and 3 snacks a day. There's no pont waiting for the referral and wasting time. You can instigate this yourself. (Which in reality with Family Based Treatment (FBT) is what you would be doing anyway).
I used meals I knew she would eat to start with and added snacks she would tolerate. And then gradually increasd portion size, widened the range of foods and hid extra cals.
Red meat and diary products are best to help the weight go on. If she has only recently gone veggie I'd knock that on the head.
I have to dash now so hopefully others will be along to add to this rushed response.
You are in the right place for help and advice.
But get her medically checked ASAP. A&E if necc.

Obvs the GP needs to also check weight and height!!! How did i forget that!!!

I agree with @Lottsbiffandsmudge she definitely needs checking out medically. I was amazed at how quick ED took a hold of my daughter.
Sports need to be stopped, she's not eating enough for her to be able to participate, it's one of the first things the ED clinic told us.
ED will fight back massively once called out, my dd was like a different person with the things she said and did.
The main thing is to feed feed and feed some more, as I said you'll get massive resistance. Food is medicine

@Dinnerisburnt Lotts summed it all up. Not much to add just adding to really consider the a&e option if GP cannot see her. My DD lost a lot of weight over a short period of time (talking 3kg over 3 weeks). This sudden rapid weightloss can (and did for us) cause electrolyte changes in the blood which in turn affect the heart (hence the need for ECG, bloods, blood pressure check, heart rate). Our case escalated that quickly that we were taken by ambulance to hospital and admitted to HDU. I don't want to scare you. Just make you aware. Sounds like your DD is very unwell. if in doubt, a&e is not an overkill.

She will have to stop all sport and depending on weight, may have to stop school too and be on bed rest. Just be prepared.

I agree with the others - it's an urgent GP appt this morning or A&E - you need immediate medical checks and then support to tackle the ED. Am sorry you've found yourself here but as you can see from the threads - there is huge support and insight.

Thank you both for your reply.

I think she has ortherexia. She ticks all the boxes.

I am filling out the doctor request form online. Will ring Beat when they open. I am sending her to school whilst I get a plan in place this morning.

@Dinnerisburnt, I’m so sorry you find yourself here. I too never thought I’d be writing on an ED thread, but your story sounds almost identical to ours. My DD14 started exactly like this is March/April. I took her to the GP who fobbed us off saying she didn’t meet the threshold for a referral. Over the next month she lost more weight, so we saw a different GP who referred her to the ED team. Sadly on her first appointment in August she was admitted to hospital for total best rest and refeeding due to low blood pressure. She was around 5 and a half stone. After 2 weeks she came home with a meal plan, but as she is not gaining enough weight, she has now been admitted to an ED clinic where she’ll have 3-6 months treatment. It’s heartbreaking to see her there away from family, but I’m hoping that her recovery is quicker there.
I’d be very careful feeding your daughter without having blood tests first due to refeeding syndrome. My DD is still having daily blood tests and ECG’s despite having 3 meals and 3 snacks since August. Insist that your GP makes an “urgent” referral as I’m convinced our story would’ve been very different if we’d got help early on.
This is a very cruel illness that steals our innocent children, brace yourself, and make sure you accept all the help you can

@LittlePickleHead You haven't messed up. Your DD was unfortunate enough to get a serious illness, and your DS has had 2 years of lockdown and a poorly sister to contend with -and you are there for them both. You are also providing love and support to your DH who is going through major stress and you have the pressure of providing financially. I hope you have some irl friends who can meet for walks and coffee. Try to get some counselling - I got 10 weeks free through an organisation called Talk Liverpool - there may be something similar where you live. Mainly I just sat and cried talking to her about my DD, but I have been more together since. The Samaritans are also good. Also - if you haven't already - you might want to talk to your GP about anti-depressants. I don't know how I'd have got through the last 2 years without them 'taking the edge off'.

Dinnerisburnt I echo what every one else has said. Your dd sounds seriously ill and I suspect will need refeeding in hospital as her risk of refeeding syndrome will be high.

Personally it sounds classic anorexia to me, it may have started off as a desire to eat 'healthy' foods but wearing baggy clothes, refusing all food all day, controlling her own cooking etc is all classic anorexia.

I'd take her to a&e as she needs a full medical check including ecg, bloods etc. Check if you can self refer to the Camhs ED service local to you and refer today. All exercise must stop as her heart could already be in bad shape.

I'm sorry you find yourself here 😥

@Dinnerisburnt Sorry you are here - but welcome. Agree with everything others have said. It's hard to comprehend how they can get so ill so quickly - but I'd say if you don't get a GP's appointment quickly, don't hesitate to take her to A&E. I thought we were really lucky to get an appointment with the ED team four weeks after first seeing the doctor - but in that time DD had gone from 'normal' weight and OBS to a struggling heart. I thought she'd be referred for counselling, but she was admitted to hospital.

Dinnerisburnt

I can't add anything to the great advice you've had already, but just want to say I'm so sorry you're going through this. Please feel free to use this as a safe space to ask for support and advice. It's been a life line for me and I've had better advice here, from parents/carers who have experience, than I've had from any professional xx

@Dinnerisburnt tbh it really does not matter what her diagnosis is the treatment will be the same..
I would honestly take her to A&E if you don't see a GP today or at the very least tomorrow..
Many people have come on this thread worried about wasting the NHS time, or feeling that they are over reacting. In nearly every case there was something very wrong with their DC that could have had lead to serious complications and even death..it is not an exaggeration to say this.
ED sufferers will push themselves on and on regardless of how they feel until they literally collapse. They hide it well but the fact she couldn't 'keep up' yest and was light headed/ faint, and mentioned it, is alarming to me.
Pls get her home in the warm and checked out. And keep her from doing any activity at all (even walking round school) until you are sure her heart and electrolytes can cope.
It is so hard to comprehend. We have all been there.

@Dinnerisburnt welcome to this lovely group of supportive people ❤️ I'm pretty new here my ds only started displaying signs and symptoms in August, he went down hill so fast. I had my head buried and didn't want to believe it could be happening (he's only 10) if this group hadn't of suggested a&e I would never of gone and god knows what would of happened if we'd waited the 4 weeks for our referral which wasn't even the Ed clinic that was just a paediatrician. A&e sped things up and got us moved to the top of the queue so to speak and the right teams involved, we were admitted too due to refeeding syndrome there is still a chance of us going back to be tube fed as he's so underweight but he's gained this week and is making slow progress with what he can eat. Help sooner is what is needed, sending love and strength as the road ahead is so bumpy

@Dinnerisburnt I’m so sorry you are going through this but there is a lot of really helpful advice here. Our dietitian thought our DD had orthorexia due to her food choices but it was driven by a desire to lose weight and over time she slipped into typical AN. I know it is frightening but please take all of the advice above, early intervention usually makes for a better outcome. There are lots of resources to help you understand the illness. Caring for someone with an ED takes a very special skill set. Sending you best wishes for the days and weeks ahead