DD14, suspected ED. Feeling overwhelmed.

[Whooopthereitis]

Since late summer, my active naturally slim DD has had a focus on being “healthy”. While I wouldn’t knock good intent, it’s become apparent there is more to it than that and she’s losing weight. She continues to eat breakfast, lunch and dinner - though who knows about lunch at school as hard to monitor. She has cut out snacks. I estimate eating about 1400 calories a day, which clearly isn’t enough for a girl who does a sports or dance activity 5 days of the week.

Following two teachers raising concerns about her weight loss with me I feel like I’ve been burying my head in the sand. I have made a GP appt for Friday, but feel totally overwhelmed. Should I try to stop her usual sports activities before then? We’re due to go on an active holiday next Weds - does that need to be cancelled/rethought? She’s due to go on a school ski trip in December - will that be at all safe/possible? Perhaps I’m catastrophising; but although she admits she could eat more and DH is supportive that we get GP input I feel like I’m the only one taking this seriously.

Any advice on what to expect from an initial GP appt and in the following weeks would be gratefully received.

FBT worked well for us. We just said kindly but firmly we were in charge of food now and it was supervised breakfast snack lunch snack dinner. She didn’t like it but after an
initial fuss she did acquiesce. It was made very clear that her social life would end if she didn’t go along with our eating rules. The horror of having to hang out with us and not her friends was a good motivation. Cruel to be kind.

They are all different though you need to find what works for your family.

@Whooopthereitis sorry been out all day, re school the options are; you keep her off school for a few weeks until FBT is well established and she’s gaining weight. You ask the school to supervise lunch and snacks (this is v school dependent). Or you go in to supervise lunch.

With my dd I made a deal that she could eat lunch without supervision as long as I was happy with her weight. She was so mortified at the thought of me going into supervise her lunch it outweighed the fear of actually eating it 🙈😂

She needs to stop the sport, weight loss in teens puts there heart under a lot of pressure which is why she needs an ecg. I would tell her she hasn’t got enough reserves for sport at the moment, once she is eating more and regained the weight she may be able to start doing some low cardio exercises.

My dd was the same and at the first ED Camhs appointment they told her categorically she could only do 15 mins of gentle exercise a day. Up until then she’d been running 5 k a day plus other exercises.

Her pulse was already dangerously low and she narrowly missed hospital admission.

Thanks @Girliefriendlikespuppies. we actually live very close to school so coming home for lunch is even possible. Let’s see what comes of the appointment. After a conversation tonight she’s open that she needs support; just scared about it. She even tolerated my insistence that she eat a snack before dinner. Baby steps.

She sounds similar to dd. After visible weight loss and concern voiced by other caring adults we went to the gp. Gp was pretty hopeless and advised eating more 🙈.

We got home and dd admitted she “couldn’t eat”. So it flushed out the issue. We then read the book and got cahms and a private psychiatrist. Her weight was so low cahms were talking about hospital. The psychiatrist was an ED specialist and was also extremely concerned. We did magic plate and No exercise whatsoever I drove her to school. Regular ECGs

Two years on she’s right at the bottom of her bmi. Her eating is good she has stuck with magic plate routine. We are still wary and not complacent she’s still too thin but just about healthy.
;

How did the GP appointment go @Whooopthereitis ?

Thanks @Weightlossworried Felt like an anticlimax really! GP was kind and calm; happy with everything (BP, heart rate etc) other than low weight (measured today as 38kg). Bloods being done on Monday and referral made. DD did well - explained things from her perspective as best she could.

Now a bit of limbo until next week. In the meantime we’ve been taking a lead on her food. So she’s managed 3 meals today (not full lunch and dinner, but a good crack at it) plus a couple of small snacks. Some tears in between times as feeling uncomfortable being full; but a hot water bottle has helped. Small steps and early days…

Hi OP, sorry I don’t have any experience of a child with an ED but I was diagnosed with anorexia at 14 and eventually was hospitalised at 19 so I’m hoping I can help a little bit.

I was made to keep a food diary, although in the end my parents filled this in for me as I only ate around them to placate them anyway. There were lots of blood tests, lots of weigh ins, and I saw a psychiatrist and a counsellor too.

Just some things to watch out for because I was sneaky as anything: I agreed to stop exercising but I didn’t, I used to pace around my room for hours to burn calories. I would literally stuff food into my pockets when they weren’t looking at me, so it would appear like I’d cleared my plate when I hadn’t. I knew that lemsip would give be a bad stomach so even though there weren’t any laxatives in the house, I still had access to something that if I drank enough of would have the same effect. I didn’t eat a single thing at school, which my parents knew so in the end the dinner ladies had to keep record of whether I got anything or not! So I bought food but gave it away.

From my parents perspective, they were also fantastic liars. If I asked how many calories something had, it was always a low number. And they would throw away the packing so I couldn’t check. I know that’s more difficult with phones/computers, but it did work for me. What also helped was nobody watching me whilst I ate (I know this sounds strange), so my dad would make me a round of toast and sit at the table with me, but he’d be reading a book/newspaper so he wasn’t focussed on me at all. It would sometimes take me hours to eat one piece of bread, but those calories were better than no calories. They never, ever commented on my body or weight and still don’t. Any attention to it made me so wildly uncomfortable that it pushed me further back into restriction.

You sound like a lovely mum and she’s so lucky to have you xx

Don’t stop the sporting activities. They make her feel good, socialise and it’s a break from her phone and social media. Exercise is a good thing.

It's vital that you get support in place as early as possible op. Tough love is the way forward and it's bloody hard. Depending on how things go you may need to be prepared for a lot of appointments; at one point my DD had regular appointments with a key worker, a dietitian, a psychologist and clinic visits for weight and blood tests, plus a different clinic bloody miles away for ECGs. It really took over the whole family's life for a few years.

I see what you mean about the anticlimax @Whooopthereitis but that sounds like a good outcome. The GP obviously took you seriously. Is she being referred to an eating disorder team?

Well done on taking charge of the meals and snacks. Keep pushing. Lots of distraction if she gets upset both during and after the meals - TV, card games, colouring in. Whatever helps!

I disagree with @Jk987. I assume they don't have much experience of eating disorders. The normal rules don't apply. The faster she restores the weight she's lost the better because the longer this goes on the more entrenched the ed habits become. Plus exercise might have become something disordered for her now - a compulsion to burn calories rather than something that's good for her mental health. You've already said she's not on her phone or on social media.

You're doing all the right things. I hope the referral is quick. We were seen in about 10 days I think and a nurse from the ed team called us before the first appt to offer advice and support.

Jeepers 38kg. And a low heart rate. I presume the GP has done an urgent referral to CAMHS. I absolutely agree @Girliefriendlikespuppies and @Weightlossworried. You need to stop sport now. No compromises here. The dance teacher and other practitioners should be refusing to teach her if she’s this low weight. A low heart rate is an indication that her heart is struggling. Raising the heart rate puts enormous pressure on the heart. There is a risk of her heart not being able to recover quickly enough. And if this is the case and her heart needs to beat before recovered, it will fail (stop).

It’s great that your dd complied and ate the 3 smaller meals and snacks. And it’s ok that she didn’t eat full meals and snacks. That’s not advisable when you start refeeding anyway as this puts a lot of pressure on the body. Just keep getting her to eat what she can and helping her with her mild stomach pains. Mild stomach pains are very normal. It’s the body getting used to more food, the fullness feeling being strange. And the physical discomfort of the stomach stretching as it will have reduced in size.

Thanks @Mummyoflittledragon gp was happy with heart rate - but appreciate the concern and info.

Exercise wise we’re into half term so naturally stops activities for a couple of weeks - so that makes that discussion easier until we see a specialist. We’ve not had tears at mealtimes; just in between - she says she’s overwhelmed at the amount of food she’s going to have to eat, would rather do things gradually (last few days have felt like a shocking change for her), and doesn’t like the feeling of loss of independence if I’m making food decisions for her. But we talked/sobbed through it - she mentioned she’d just like to click her fingers and be back to where she was 3 months ago. So, I’m encouraged that she wants to get back to a healthy weight and state, it just feels like a mountain to climb. And, when she’s properly fed and calm she’s one of the most determined people I know - I’ll try to harness that for good!

We found normal rules went back to front. All that used to be good is now bad.

We watched reels over meal times .- great distraction.
We grew to hate fruit and veg. Discouraged those. Flapjacks not watermelon.
Dd used to ask for a lift to school pre ED. During it she wanted to walk to burn the calories 🙄it was us insisting on driving her. Normal rules no longer apply now.

38kg is awfully low is she very short?

Not particularly short - 158cm. Always naturally slim; highest weight that I’d measure (pre ED symptoms) is 44kg; so not much wriggle room to lose any.

Another one here with naturally very slim DC. Any weightloss in a younger teen is concerning, as they are still growing. It is really hard, but I would try to hang on to some positives - you have a great relationship, the bands of a healthy weight at 14 are wide and she is eating something and regularly. I'd try and see all that as a foundation you can build on rather than a house you need to burn down. You need your resilience and positivity.

I've had two kids with very different eating problems, one recovered, one not. For the recovered one they were very much younger and cooperative. You can do a lot with fortifying foods for someone who does eat and eats stuff that doesn't come out of a packet - whipping cream into yoghurt or hot chocolate, mixing cheese into savoury food, things like dried fruit too are highly calorific. I had a cheat sheet of ways to add 50cal to meals in ways which are unnoticeable. You might want to aim for 100-150 instead, but the principle might help. Some typical teen foods are surprisingly low calorie - doritos and noodles come to mind. At the other end of the scale, something like fresh custard is amazingly dense. You will find the fixes you need.

Its also worth remembering that the hunger teens get at 13-15 can be relentless and terrifying and unsatisfiable even under nornal circumstances.

Thanks @Shewalksinbeautylikethenight. After a shop yesterday I have a cupboard full of dried fruit and nuts ;) She’s just had a breakfast of porridge (that I’d put syrup and double cream into) plus a few strawberries and handful of dried cranberries. So have that as a good start to the day!

Please ignore this 🤦‍♀️ if you have an ED exercise can be fatal.

Oh my brain middle of the night brain confused low weight as low heart rate. But still, 38 kg at 158cm is low and doing a high activity week this week, means she may shred weight, even if you’re getting the calories up. This is how things work. She needs to eat every calorie she should have eaten to regain. And probably more as her body will need that to repair.

158cm is about the 50th centile for weight and the 9th for height. The 50th centile for weight is about 48kg. I appreciate she was never there, but only 4kg below. You have caught this relatively early. But if she’s only started doing this late summer, that’s 2 months max (or perhaps you didn’t notice and it’s been going on longer, not uncommon). If it’s 2 months, that translates as almost a kilo a week. So I hope you can see why her activity needs to be carefully monitored, so that she doesn’t continue on this trajectory.

In the ED world, we talk about weight for height. Based on 38kg and 158cm, this translates as 79.2% weight for height, which is pretty low. Her previous weight of 44kg is 92.2%. So you have caught this relatively early, but as I say, if she continues, she could lose another kilo this week. And you can continue to lose even when refeeding starts.

She’s cooperating. And fhafs great. She’s going to need to regain all the weight. And probably 10% more for full recovery. This means getting her to 100% wfh. She obviously doesn’t need to know this for now. And I think if you are going on this holiday, you should curtail a lot of the activities to prevent her weight from continuing to drop.

Idk how concerned your GP was. However, there are some on this thread, who unfortunately due to our circumstances with our dc know a lot more about ED than your average GP.

Exactly.

Thank you @Mummyoflittledragon Taking it all on board.

38kg is very low, with ED they use something called weight for height (wfh) which is based on averages. A healthy teen bang on average would be 100% wfh. I’m not good enough at maths to work out your DDs wfh but I would guess at it being very low possibly less than 80% which is bed/sofa rest territory.

If you go on the carers of young people ED thread someone might be able to work it out for you.

It sounds like you’ve made a brilliant start and that your dd recognises there’s a problem which is great (lots of teens will not accept there’s a problem which makes everything harder!)

Keep going with what you’re doing, distress is normal sadly and you have to learn distress tolerance which is basically keeping calm, being empathetic (I can see how hard this is for you) but standing absolutely resolute that they have to eat.

Double cream is liquid gold and when I was refeeding dd I put it in everything!!!

@Mummyoflittledragon cross posted! I wasn’t far off with my wfh estimate.

That's a great start @Whooopthereitis It's so good that she lets you make a breakfast like that, it gives you a lot of opportunity for maximising calories. It also sounds like you have a really strong relationship where she can talk to you about how she's feeling, that will really help too. Sounds like half term has come at just the right time as well!

@Girliefriendlikespuppies
I had to google how to do it as I’d forgotten. But yes, you were spot on!

@Whooopthereitis
I’m glad you’re taking this all on board. I know it’s a lot. Your dd’s age at only 14 is on your side. And she’s cooperating for the moment and aware, which are all big plusses. She’s going to need a lot of love and reassurance. And some boundaries against the ED. She’s got to want to eat to do an activity more than she wants to restrict.

And Girlie is right about below 80% being bed rest territory. That’s enforced bed rest for some. Others like my dd stopped functioning. I figure because your dd is naturally slim and had quite a low weight starting point, her body is thus far coping. But there would come a time, when if she doesn’t eat (I know she’s cooperating for now) when it suddenly won’t. And as we have both said, we don’t know how much stress exercise will put on her heart. So prudence at this stage is very much required.

As for eating, it sounds as if she’s working hard to eat and that was a good breakfast with the double cream. High fat dairy to nourish the brain, so anywhere you can add butter as well. Protein is preferably animal source, to replenish lost muscle mass.

What you've done so far sounds promising. I'm glad she's wanting to eat and can see there's a problem. I'm questioning my initial advice around continuing the sport - I was always skinny and always active and I don't think it did me any harm, but I can't ever recall losing weight the way your daughter has. That's a key difference that I failed to give proper attention to in my first couple of posts. At 14 I was probably 5ft 1 or 2, probably a similar sort of weight (I'd guess around 40kg but don't know for sure) but my weight had always been fairly static, not really ever going up or down dramaticaly. I was a late bloomer and all my friends were always taller than me until I had a late growth spurt around 16 and must have grown the best part of 3" in a year and I caught most of them up. I can remember being 5ft 5" and 47kg when I left for university and around 50kg ish when I returned, after a couple of years lifting weights but too much running and not a good enough diet to have made use of the training I was doing.

@Whooopthereitis have you gotten to the bottom of what has caused this recent change in mindset around food?