AIBU to worry my daughter may be developing an eating disorder?

[ShouldIworryornot]

Sorry, long, head not in right place right now, can’t work out what’s relevant and what’s not 😥.

My 18yo daughter left home for uni in September, she’s loving it, doing well academically and enjoying the newfound friendships as well as hobbies and societies. Up to Xmas, all perfect.

Then a long stretch came of 3 months when we didn’t see her other than online and not much. I did notice she looked slimmer in the very odd pic she’d sent thru.

Then at the end of March she called me crying her eyes out (for over two hours), very anxious (never ever been anxious before), saying she’d been eating little since Xmas and running lots and lost 7kg in 3 months, (claimed 1,400 kcal, only 2 meals à day) and that it had been really hard she was very worried she’d gain the weight back if she stopped and how to avoid that happening.

Luckily she was coming home 3 days later, when we went away skiing, whereupon I could see she was avoiding calories as much as she could, would choose a lunch of salad w feta despite it being cold and skiing 4 hours a day. Would then play pádel after that on 2/5 days, and went running before skiing on another one. She ate normal dinners which I cooked at least, and the odd pudding.

Back home now and she continues to run every day and eat as little as she can get away with, although not alarmingly little but I suspect underfuelling; I wake up thinking about this, torn between trying to gather more data and rushing to do sth about it asap. She confirmed she did not gain any weight while away, unsurprisingly.

She’s 165cm tall and has gone from 59kg to 52kg. Says 51kg would make her underweight and she doesn’t want that. She looks slimmer that she used to, obviously, but not unwell; apparently hated being “not big but with a tummy”.

Today she walked 10k steps and run 7k. she ate 2 eggs for breakfast, no bread; pea soup w à slice of bread for lunch, 2 kiwis as she says she’s constipated; 6 Itsu gyoza w undressed salad for dinner, insisting she’d snacked on chocolate before dinner and wasn’t hungry, tho no one saw that.

For all I know, I could be staring at a huge ED developing in front of my very eyes. But she says she’s v happy and I mustn’t worry because weight matters 7/10 to her but health matters 10/10 and she is not ill.

YABU: she’s is just working out how to be slim n fitter than ever like she’s working out a lot else right now.

YANBU: get her help NOW (but what? Psychologist? Psychiatrist?)

If anyone has been thru this, please tell me honestly if you think EDs are in fact stoppable? One friend confided recently she saw EVERY sign in her daughter from day 1 and was still unable to stop it, child now in hospital due to low weight.

OMG for background I have always been overweight to obese, and worried about health with a horrendous perimenopause that has rendered me prediabetic. This is all absolutely my fault. I’ve always said to her I didn’t know that being overweight could make me so unwell and was naïve to ignore it until my 50s. I thought I was helping her avoid my fate, but instead I’ve given her an ED, haven’t I?

Oh, I see what you mean now, I thought you meant in general. And @Edatuni that was not a pointed attack at anyone, however much it may feel like that. We all are doing our best. 😊

From experience as the struggling teen, you have a huge impact!
I hated my parents drawing attention to my weird eating/purging habits, but ultimately i was happy in their company, and that of my sister. I eventually grew out it.
Please know that your motherly love and support makes a difference!

I hope she’s doing well

Hope it goes ok at the GP tomorrow @ShouldIworryornot. How are you and your daughter feeling about it?

She says she just wants to know if her heart is ok so she can go back to running. She’s completely unconcerned about anything else, says she most definitely doesn’t have an ED, did so while wincing at the green tea she drinks but obviously dislikes. I pointed it out and she said she drinks it because it’s good for you.

She’s eating more or so I’m told, keeps going out to dinner to catch up w local friends in the holidays, so v hard to tell.

I know the GP wants to do an ECG, but I am hoping for her BP being checked (87/57 when I check her today w my Omron machine at home, pulse 57) and some bloods done too.

DD now saying it’s up to me if I want to come in tomorrow, she’s not bothered. Part of me wonders if it’d be a more open conversation without me. But it might be my only chance to listen in even.

@pinedrawer i am so touched that you wrote to wish us well.

@Mummyoflittledragon that video is so informative! It also made me cry. “The world is full of struggling but it is also full of overcoming”. Here’s hoping for that for all of us and our children. ❤️

You do need to go in. Your dd will tell the GP a load of flannel.

As for eating more, how do you know? And how much more? And even if it is more, it’s very unlikely to be enough. I suggested your dd would need at least 2.6k calories to maintain weight. And the evidence you’ve seen is very little food consumed and your dd choosing diet foods. She may just be eating something small, eg just a starter or a Caesar salad etc. She may not be finishing her plate. Who knows.

And if you ask your dd what she’s chosen, will she tell you? I am all over what my dd eats and it’s not easy because she isn’t telling me spontaneously. I’m building a picture, asking at the right time so she will probably tell me etc.

Good luck for today, definitely go in with her as your dd will lie and minimise what she’s doing to herself.

Green tea is to aid weight loss…

Hope it goes ok with the doctor later. The more you post the more it sounds like she does have an eating disorder, sorry to say that. EDs are sneaky, so I only 'counted' food eaten if I had actually seen it going in. My dd developed ingenious ways of avoiding or discarding food, hiding it up her sleeves or shoving it into cushion covers when I wasn't looking, 'pouching' into her cheek then spitting it out later when alone, wiping any sauce on furniture, scraping off spreads and wiping under the table. At its height I had to literally watch every mouthful going in and still had to check for new strategies she developed. At the start she would send me photos on her phone of food she said she had eaten, but it was increasingly evident that she had not.

So it's entirely possible that she will tell the doctor that the only problem is you - my dd also said this, that she wouldn't have any problems if I would just stop being so ridiculous. She managed to convince the camhs person we worked with and they colluded along with this, which made things much harder. It finally started to change when we saw someone privately who called her out on this.

i wanted to echo something else another poster said about the myth that EDs are about control. This is a dangerous and completely outdated theory, doesn't have evidence behind it, and certainly doesn't point to an effective treatment approach. EDs are 'neurobiological', triggered by weight loss, and creating strong but generally universal patterns of behaviour. They bring psychological symptoms, certainly seem to heighten anxiety, and the person with the ED can become very obsessive and controlling about their calorie intake, but EDs are not caused by controlling mothers / parents. Sadly this idea is one that is still wheeled out by badly educated professionals. I'm a health professional and was taught this in my basic training 25+ years ago.

Treatment for EDs mostly has to start with strategies to increase intake and gain back weight. A starved brain is much less likely to be able to rationalise or reflect, and so therapy until brain recovery has happened can less effective, although I know there are some who have been able to use it - those who have some insight into the troubles they experience.

Eva Musby's book and website is good if you haven't already seen it, as is the beat website. We did the 'developing dolphins' course from beat which was good.

Sorry, that's a long ramble! Such a hard thing to be facing, but there can always be a light at the end of the tunnel.

Tx @Mummyoflittledragon . I did go in. I thought it went well.

GP asked DD a lot of questions about whether she skips meals (she does, and answered honestly), how often does she run, how long has her heart rate been low etc; then she took bloods, pulse (66 but doc said typically nervous) and BP (100/80 said expected too of a young person) and sent DD for an ECG, which happened 10 mins later (unbelievably). Results for bloods and ECG to be discussed next Tuesday.

GP’s plan, she said, is to understand DD’s physical state first and discuss how she feels on Tuesday. She told DD in no uncertain terms that she thinks she’s not eating enough which is likely to be affecting her heart, and that it’s wonderful that she has no extra symptoms like dizziness, fatigue, etc, but she’s probably close to getting that and could in fact become very unwell. Asked her to eat 3 meals a day and at least 2 snacks, with examples, and report back how that feels, any concerns, any overwhelm etc and take it from there at next Tuesday’s appointment. Spoke to her about how her body was starting to show signs of starvation and how her organs could little by little shut down one by one. She said “I would love to see you continue your running, but not w this heart rate”.

DD was calm during the consultation but cried afterwards, said it was awkward that I seemed so quiet (she’d asked me to), that the doctor and the ECG nurse were so nice that she felt everyone was treating her like a sick person and that was very strange, and perhaps slightly condescending. I responded that she’s always been so healthy and strong and had no experience of what bedside manner looks like, and the if she wants to not have to see doctors and nurses and feel any of that or similar, it’s in her hands and she knows what she needs to do. She is brokenhearted that she can’t run and has been asking me how she can explain this to his running buddies back at uni, and will they think she’s “weak”.

I have to say I was v happy with the GP’s way to explain this could get quite serious, and with the tests offered.

We shall see how the next few days go. I suspect they won’t be easy, and there will be tears, but I will have to hold firm on the need for fuelling if she wants to run. DD says she’s taken on everything she’s been told and she will do
it, but I’m still not breathing that easily…

Taking one day at a time. Like many here, I imagine.

Tx everyone, especially if you read this all!!

Hi OP, I've been thinking about your situation. If I were in your shoes, I think I would go all in fighting this disease. If it means she doesn't return to uni until she's better, so be it. I would throw everything at the illness - I'm not sure what treatment is available, but I would get whatever I could, including a period of in-patient treatment at a rehab, if such a thing is available to you. Eating disorders are very serious as you know, and it's scary the amount of physical damage that they can do, which can sometimes last even after someone recovers. I would take this disease by the horns and wrestle it to the ground, as far as was possible. I think this is a family emergency, and I would treat it like one.

Your poor DD. Eating disorders are horrendous.

ETA: Her denying that she has an eating disorder, when her heart is being affected, is all part of the illness.

Sending you and your family hugs xxx

That's such a positive update @ShouldIworryornot . The GP sounds really clued up and I think you handled it incredibly well yourself 💐

Glad the appointment went well and it does sound like your dd is starting to understand that she is ill.

Will your dd let you take control of meals and snacks for a while? This is the main treatment for EDs (FBT - family based treatment) the main care giver takes over all food related decisions, the food is plated up and given to them with the expectation they have to eat it.

It has a good evidence base behind it and success rate.

Do you have scales in the home? I personally would remove them for now unless you are blind weighing your dd to check if she has gained or lost more weight.

Thank u @bigboykitty. Here’s to many more.

Thank you @Girliefriendlikespuppies. I doubt it as she’s not been diagnosed with anything. DD says she’s worried about her heart and is going to eat 3 meals a day n 2 snacks and it doesn’t worry her (we shall see about that if she puts on weight).

I am wondering what happens if her ECG comes back normal? Nurse thought it was fine but details from
doc on Tuesday. Would that mean she was never unwell only too focused on food? Are ECGs fully conclusive? Anyone had experience of ECGs in this context and what happened? And how do we bring up her heart rate (I think with food!)

sorry so many qs

I’m glad it went well. In answer to your questions, an ECG is performed to check the heart is recovering correctly. When a person restricts their intake, it can temporarily cause a long QT wave. This is where the heart takes too long to recharge between beats. If the heart needs to beat in this time frame, the heart fails. Ie stops. This is why it important to keep the heart rate down - ie no strenuous exercise - when restricting. It is not permanent and resolved by returning to normal eating levels.

As for if an ECG is conclusive, it simply gives a snapshot of that particular moment in time. If (as the nurse intimated), it comes back as normal and your dd continues to restrict, she will still be at risk of developing long QT. If your dd has been eating ok the past few days, that potentially could have been enough to return to normal. Or she may not have been affected enough… yet. Idk. I’ve spoken to a cardiologist about this with dd and he said it would resolved pretty quickly. But it is difficult to tell exactly what that means.

And yes, low HR is also resolved by eating. Is your dd getting colder than normal btw? Showing Reynaud’s type symptoms - red/purple/white hands/feet or swelling?

As for your question about whether or not she was never unwell. There are some red flags for ED here. She sounds unwell.

And I know the GP has said otherwise. However, the protocol is 3 meals and 3 snacks, not 2 snacks.

Did they take bloods? This is important when they’ve been restricting food.

Oh that sounds like a really well informed and compassionate GP, sounds like she did a great job and you too.

I think there is probably a clinical skill in interpreting the ecg in the context of what's been happening. When my dd had the first ecg we had to go to the hospital for it and there was a really brusque person doing it who just commented that it was "fine but slow, but THATS what you'd expect" while side eyeing my dd. She had numerous ecgs after that, they also always took lying then standing blood pressure as I think that can be an indicator of potential difficulties.

3 meals and 3 snacks is the standard, technically we did 3 meals, 2 snacks and dessert every night as the last snack. We still do this, and generally my dd has a mini pot of haagen dazs icecream, they are brilliantly full of fat and calories in a tiny pot so don't feel like a lot.

it's really good that your dd has a goal in her running, and I'd be squeezing all of the leverage I could out of that, with a plan that she could eg do one run per week if she gains x kg, and gradually increasing.

for my own dd we have had to be quite assertive in holding her at a healthy weight, above the 50th centile for her age and height, for a long time before we saw her starting to be able to make independent steps in recovery, but some
of that is also about maturation, she was much younger when she was first diagnosed.

hope the next week goes ok.

An ED specialist should look at her ECG, they know what to look for.
My DD had an ECG that the GP signed off as normal..once the ED consultant had wrestled it off them, we were hauled into hospital due to long QT phase. The GP had missed it. We had a 2 week gap when DD was exercising when she could have literally dropped down dead.
Please make sure she does nothing strenuous until you have ruled that out.
A long QT phase is caused by electolyte imbalances due to malnutrition.
And also I know I am late to this party but I wanted to say that when my DD was at this stage in her ED she was running national standard 10ks and feeling amazing. It is because when entering starvation mode the body diverts all clalories to the CV system and lower limbs, so the sufferer can walk futher to find food. She is in survivor mode. And very ill.
Glad you have had such a positive start with the GP, but she needs a referral. And bloods taken.

This is so scary.
where do i even find someone yo look at her ECG?

Get the GP to send it to a cardiologist if she/ he is uncertain.

You need to ask them to send the ecg to the ED team to review it.

How are things going @ShouldIworryornot?

bit confused tbh @pinedrawer tx for asking

DD eating quite a lot more, not running, just walking but never on her own as I won’t allow it.

Still weighting herself daily but not gaining, well only 0.5kg. Still BMI 19.1. Resting HR still in 40s tho, low 40s some days, high 40s others.

seeing doc for bloods and ECG results on Tuesday but have had it unofficially confirmed that both are normal; GP unconcerned and everyone around me including husband, younger daughter and GP seem to think there’s no problem and she’s responding to the “fright” by eating more so all fine.

I have asked AI to do deep research on ECGS in ED patients and having got hold of DD’s ECG result I have then run it past the AI; it thinks it’s completely normal including the QT and QTc, though obviously slow heart rate, which it thinks is athletic “mostly” but still a bit too slow for that, so possibly also “some energy conservation”.

I do not want to offend my GP friend because she’s amazing, and I do trust her opinion, but I’m still a bit worried about DD going back to uni - and running (not that I think she’d disobey doctors orders); so on Tuesday’s GP visit I plan to focus on what to do about exercise, but am half minded to take the ECG elsewhere, and in fact pay for an echocardiogram to actually check the integrity of her heart muscle; low 40s is SUCH a slow resting heart rate!!

anyone know a cardiologist that would accept looking at my DD’s ECG?

Just go and see a cardiologist privately. They’ll look at it themselves and conduct their own ECG if they want, which will cost extra, but can be done during the appointment. As your dd is 18, you can try to find one, who is experienced with working with ED patients, or who will find out for you. My dd was 15 when we did hers, so we didn’t have a choice.

Weighing daily is obsessive. Gaining half a kilo in about a week is excellent progress. Do not presume this will continue. My dd gained a kilo as basically her friends took her out every day on rotation for a meal for a couple of weeks during school holidays. When they went back to school, the meals stopped the restriction ramped up. She lost the gain and more.

Daily weighing is another red flag, my dd was doing this and when I took the scales away she completely freaked out. It is obsessive.

I would be asking the GP to refer her to the local ED service and want them to review the bloods and ecg.

I would also be worried about her going back to uni…

Just coming with another reflection on things. Of course being clear about her physical health and heart is super important, and I'd get a private assessment for this too. However, some of what I experienced with my daughter became a 'battle of proof'. She would have lots of things to say which gave 'evidence' that she was completely fine, and the more I looked for concrete irrefutable evidence the more we got locked in a distracting dynamic about who was 'right'. Things were easier recovery wise when I stopped doing this, and just had a boundary, which was 'you are unwell, we are working on helping you get better'. Of course we had a diagnosis of anorexia at this point so I could feel confident in this, and she was younger than your daughter and living in my house so I had much more control.

Eating disorders are sneaky buggers, and even if you get good proof about her heart, it might not lead you down the path you're hoping - I remember a particular day at the start with my dd screaming at me, while looking physically so unwell, that EVERYONE thought she was pregnant because she was SO FAT. There was no possible way this was realistic, looking at her it was obvious she had anorexia or some other horrible illness, but there was no way around her belief.