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.

Also DS still weighs 40kg he’s not gaining any weight. How much are teenage boys supposed to gain each week?

<a class="break-all" href="https://www.google.com/url?sa=t&source=web&rct=j&url=www.rcpch.ac.uk/sites/default/files/Boys_2-18_years_growth_chart.pdf&ved=2ahUKEwiX-8H_q5_wAhXTNcAKHUlGBdgQFjAAegQIAxAC&usg=AOvVaw2JvigPQTc_d7-qeKGwyras" rel="nofollow" target="_blank">Boys growth chart

Between 14 and 17, a boy on the 50th centile will put on 16kg, which works out at just under 500g per month. But you have to remember that your DS is already about 10kg underweight, so to be average weight at 17, he'd need to put on around 25kg, which is more like 700g per month.

Ideally, CAMHS look for 500-1000g per week during weight restoration.

So he should’ve gained something by now then

Yes. It sounds like he's eating enough calories to maintain his weight, so he needs to increase his calories by around 500 per day to gain 0.5kg per week.

Hi All I hope the morning has started off ok. Ours was fine for the first hour but now the negative thoughts are back. Distraction, distraction..... We've already gone through the whole 7 series of Brooklyn 99! The episodes are 20 minutes so it helps distract and also helps her gauge how slowly she's eating. I've never watched so much tv, but it's what she thinks works for her.

Lougle I had a similar question to NelleBee we have had about 800g increase for 2 weeks then this week 0 increase. The diet has been the same but she has done about 4 30 minute slow walks with me, would that be enough to make the difference? She's still below 36KG and at below 1% of the NHS BMI site

How many calories do you think she's having, @SoTiredNeedHoliday? It could either be that she is on the cusp of maintain/gain with her intake, or that she's growing and that's taking the spare calories, or that she's undergoing body repairing, which is taking the calories. Also, as they gain weight, they need more calories just to maintain, so what was a great surplus when they're extremely underweight, becomes a modest surplus. Regardless, the answer is more calories, which is easier said than done.

DD1 went to school today for tutor time and a visit to the school animals, 40 minutes. She's really tired now, but it was ok. I've phoned the autism assessment place and they've said she could be waiting until August 2022 for assessment.

I've just had my two weekly session with the ED psychiatrist, she's happy enough with progress. Suggested pushing dd to eat out a bit more so this wend will aim to have lunch in town. Once restaurants are open will have dinner out one night as well.

She's waiting for confirmation of the autism assessment and said that once they've got that they will look to taylor dds needs more specifically.

I know CAMHs frequently get a bad rap but honestly I feel really lucky with both dds Camhs teams, I can't really fault them. They're not perfect but given the pressures they're under they are very good.

Mind you if we don't get a diagnosis I may change my tune 😉

Good luck with the diagnosis @Girliefriendlikespuppies.

Sympathy to @NelleBee and @SoTiredNeedHoliday on weight plateauing. Although I do think that weight gain won't be linear but as long as it's heading in the right direction (which isn't happening for us, it's up and down in tiny increments but essentially staying the same).

General question: what do you do about phone use and monitoring? DD's always spouting crap she's learnt from tiktok ('it's greedy to eat past feeling full', 'everyone hates cow's milk') and I think the algorithms are now very food orientated. But I'm loathe to take it away as it's how they socialise and making friends is an issue for her. In addition, we might be taking her out of school for lunch if she doesn't gain weight which is going to further hamper her friendships.

girlie - great news - we do a challenge jar, we've written down various challenges and then every day DD pulls one or two out (some of the challenges can be done on the day in question - others may need a bit of planning).

Challenges include - eating out, mom/dad picking food for me at a restaurant, eating ice-cream tonight, eat sushi - so both challenging specific fear foods and also pushing on food related behaviours. It works for us as it takes the onus off DD (although she was involved in the writing of them) - that may help as a way to push your DD a bit more. Also, repeat challenges - a challenge done once doesn't become embedded behaviour. Some of the you-tubers I've mentioned previously do videos of challenges - 'a day eating fear foods' 'a day when I cook for my family' 'a day of free pouring/not measuring etc'...

We didn't take away phone etc valley - partly because of her age, partly because of it being a source of connectivity to others (especially as she's not at school) but also because it only reflects what was going on in her head anyway - it didn't stimulate new thoughts/behaviours (although it perhaps reinforced). The upside I guess was that if dd said x says this on tik-tok, we could challenge x without challenging DD directly - if that makes sense. Also, as I've said before, DD started following people in early recovery almost as a 'test' for her own recovery and that all took place on tik-tok. So it eventually became a positive resource rather than negative...

I think it's really tricky with phones valley, my dd doesn't have any social media other than WhatsApp and tiktok. I have similar concerns re removing the phone or these apps and the impact that would have on dd socially. That said when I started refeeding initially (last summer) I did take her phone for a couple of weeks as I used it as leverage (she'd get it back in the evening if I felt she'd made good effort with her food.)

The psychiatrist suggested making tiktok a more social activity so that I watch it with her we have done this a few times. I find it mind numbing tbh but it does reassure me that she's not watching anything too bad on there.

I did see a couple of videos that were food related and one of a girl measuring her waist with string. I told dd if I saw anything else along those lines she'd automatically lose her phone for 24hours and tbf I haven't since.

DS had his observations done at CAMHS today for the first time since 2019. They measured him as 165.5cm and 43kg. Blood pressure was 105/59 and HR 70. They said this was all absolutely fine, he’s on the the 6th percentile which is healthy weight and he’s doing great. They also said the last height and weight they had for him was 148cm and 33kg which was in 2019 so he’s obviously growing really well.
I’m confused as to how they think this he is perfectly fine when he looks so thin and is not eating enough calories. Yes, he has grown since 2019 but although he has always been slim he looks so much thinner now. I can actually put my hands around his thigh and join my fingers and I don’t have large hands. And now he thinks he’s great and I’m worried over nothing.

I measure him as 165cm and 40kg, the GP three weeks ago measured as 163cm and 40kg, the hospital two weeks ago measured as 164cm and 42kg. So he’s somewhere between 163-165.5kg and 40-43kg which is somewhere between the 1st-6th percentile.

Well as I kind of thought would happen my positive post was massively over ambitious and we have taken a few steps back yest eve and today.
Difficult training session at the footie side that left her out on Sunday has reinforced her thoughts of inadequacy and we had a refusal of smoothie yest eve and today a lot of negativity has reappeared today about being unfit. Despite off evidence to the contrary.
She is exhausted and in bed asleep by 9pm. The last thing she said to me was ‘Well I’m not as fit as I was’....
On the plus side she has eaten pizza again today with no complaint and as I stretched my main meal of spag Bol to cover my mum as well (same amount of stuff between more people) I gave her a piece of garlic bread and once I explained she ate it first! She always liked it...
So on we go with the crippling anxiety about her performance and fitness.
She has another match tomorrow with her other club so hoping she manages to enjoy that,
In a rather lovely moment tho a lad she plays with on Saturdays who is also in the opposition team from Sundays nightmare reached out to her on Instagram to see if she was alright as he had seen she was upset after the match. He was really rather lovely and they had a good ‘chat’ he was also left out and only played 10 mins. To look at him you would never think he would be so considerate!
@SoTiredNeedHoliday we have found this. Over Easter we had a really low gain week (200g so not really a gain) and I was quite down.! Nothing any different food or exercise wise KW said the cals could be going into organ repair, growth, kick starting puberty etc etc she said they look at gains over a 6 week period and if the average is c 300-500g they are happy.
We haven’t removed DDs phone ever but I have a monitoring app that alerts me to poss issues. I have set up words like diet and fitness to flag. DD Is is still watching a lot of you tube such as ‘I ate a body builders diet for a day’ and ‘I swapped diets with my mum for a day’ type videos....sigh...

Running his figures through instant weight for height, using this time in 2019 as the date of measurement, I get:

Now: 85.93%
Then: 88.19%

What was he wearing today at clinic? He ideally should have been wearing a single layer of the thinnest clothing possible. Harder for boys, though. DD1 always gets weighed in leggings and a t-shirt.

@NelleBee sorry cross posted.... that is so annoying. Why do they feel the need to say that kids are ‘in the healthy weight range’ when clearly there are other things going on. My DD weighs 42.6kg and is only 156cm tall so your DSs weight still seems low to me.
What centriole has he been following throughout his boyhood/ childhood do you know?

@Lottsbiffandsmudge it still sounds like you are doing well with her, even if she's dipped. You are balancing everything amazingly. A hard slog, I bet.

It still isn't easy getting DD1 to eat enough. She's self-diagnosed dairy and gluten intolerances. She yelled yesterday when we asked her to eat bread with her dinner.

Meanwhile my youngest who is on the 98% percentile is currently screaming he is starving (he had croissant for supper an hour ago). Makes it really hard when I’m simultaneously telling DS3 no you can’t have more and DS1 you must have more!

@Lougle he was wearing his school uniform which was just trousers and a polo shirt. He took his school jumper and coat off.
So although he has grown overall his wfh has decreased? I feel like if I wasn’t constantly feeding him and nagging him to eat though he would probably lose weight.
When he was born he was 91st percentile (9lb2!) but by four weeks old he was on the 9th percentile as I could not get him interested in feeding. He was a dream baby and slept through the night from a couple weeks old. In reality he just never asked for anything, ever. He would appear content to just lie by himself happily for hours on end. I used to have to set a timer to remind me that he needed feeding. Of course he was my PFB so I naturally assumed his great sleeping was a result of my great parenting until DS2 appeared! But I would say he was on the 25% percentile for most of the time between 0-5%

He’s so funny though, I’d love to know what goes on in his head. He told me today he’s worked out why he is thinner than most people. It’s because he doesn’t eat as much. I thought that was kinda obvious but if it wasn’t I guess it’s a good connection to make if it means he eats more.

@Lottsbiffandsmudge what monitoring app do you use? I feel like something like that would be good for us. We’ve not had difficulty with ED web searches but I did discover he was telling people he is Trans on discord so I banned that and have a block on it. I have occasionally wondered if the weight is deliberate in order to keep his body more female but then at other times his thought process don’t appear to be that deep if that makes sense. So hard to know what he thinks or feels as he just struggles so much to express himself. Since I stopped his access to discord the trans stuff has dropped off a lot. He seems content with being a boy right now.

@NelleBee

Yes, the issue is that 2 years ago, he was on the 31.24th centile for weight and the 66.37th centile for height.

Now, he's gone up to the 39.36th centile for weight (+8.12) but gone up to the 83.81st centile for height (+17.44). So proportionally, he's stayed in the same broad centile band for weight, but his height has jumped up across the centile lines. The idea is that it all evens out when they slow their growth after a spurt, but that can only happen if he's eating enough.

Just realises my previous post should’ve said he was 25th percentile for most of the time aged 0-5 years (after that I didn’t keep track)

The typical pattern is out then up - huge increase in appetite, get a bit of a belly, then shoot up and stretch out. My D12 is showing a belly and revenous, but I know she's going to shoot up in the next couple of months.

@Lougle ok, that makes sense. Thank you.

Yes, this is what I say to DS2 who is short for his age but quite chunky. He keeps worrying he is fat (he’s really not) and I keep telling him he will grow talker soon and it’ll stretch him out. I’m not sure he believes me.

Yes I second the request to @Lottsbiffandsmudge for the name of your monitoring app. I put DH onto this sphere as our household tech manager but he doesn't seem to have done anything.

Your story about the boy from football made me well up! I love teen boys, they're so much more sensitive than they're often given credit for.

@myrtleWilson do you remember any of the names/handles (argh so not social media savvy) of the tiktok recoverers you found useful?

@NelleBee my daughter is 166cm and 43kg. And definitely too thin.

The app is Famisafe. You have to install it on their phone and yours, I thought I had done it covertly until DD tried to sign into her hockey club with the QR code and it blocked the site and she rang me and said. ‘FFS pls allow that Famisafe app to recognise the hockey club sign in site’ ....
So prob best to get it agreed by your kids!!