When is low weight ok?

[Glitterfarti]

DD is 12 and slim. Last summer we were worried about her low weight and got a referral to ED team, after much fannying they discharged her but said she couldn’t do any exercise or go to school full time due to low weight. She hovers about 83% wfh, nothing we do makes any real changes to this. She’s “not hungry” or when she does eat, there’s always a lot left even though it looks like she’s eating. We haven’t had a normal life for a whole year and she’s missed so much school (we collect her at lunchtime). She doesn’t fight me over food, just takes so much time to finish we get bored and leave the table then I see how much is left later. Today she won’t eat because she’s hot. Is it ok to just be a skinny build (about 6th centile now, is quite tall and was 25th centile as a toddler)?

I would wonder why an ED team would discharge her if they felt she was too underweight to do exercise or go to school!! This sounds insane. If you were referred in the first place then clearly there was a concern Did the ED team follow through with a diagnosis of AN or give you an eating plan to gain weight? I think you are asking the wrong question in -is it ok to be a skinny build? The answer may well be yes however she isn’t eating and losing weight and that isn’t ok in a growing child. Can you go back to ED service?

Thanks for your reply @sunglasses , no diagnosis - she doesn’t say she thinks she’s fat so they say no ED cognitions. We were never told how many calories to aim for or given any kind of meal plan. What we were given was the percentage bands for no exercise/no school etc then essentially told to go away. I self referred back in around Easter when she was really lethargic and lost a lot of weight over a week, but got told they couldn’t do anything (and was told off by a Triage Nurse for weighing too frequently) so tbh lost the will to fight it so we’ve not been checking at home very often, and I’m not as on top of milkshakes etc as I was.

Have you entered her height and weight into the nhs bmi calculator for children and teenagers? Is she within the healthy weight range? Is she ND?

Sorry for all the questions but we went through this with DD when she was 12. She was on the 3rd percentile and just within the healthy weight range, so GP wasn't concerned. She is autistic and has poor appetite and is a very picky eater. It did improve a bit when she went through puberty, I think her appetite kicked in. She's now on the 9th percentile at 16!

@JohnnySoda , currently on 6th centile, no ND. This is the confusion because on centile she’s ok, but having dropped from her growth curve isn’t, and according to the weight for height calculation, that’s not ok either. It’s so difficult to navigate!

So it doesn't sound like she has a diagnosable eating disorder (no ed cognitions) which will be why the ed team discharged her. But there are other sources of support. Go back to your GP and ask for referral to a community dietician, and to a paediatrician.

This is really concerning as you have described her being uninterested in food, losing a lot of weight in a short space of time but not given any help. This is not someone who is naturally slim and eating what she needs to sustain her energy demands and grow. Any child losing weight should raise concerns as especially given her age she should be gaining for puberty and potentially big growth in her body and brain in the next few years. I’m confused by your comment that you don’t get any help or meal plan but then later you say you’re not on top of the milkshakes etc? Have you had advice on feeding her for weight gain or not?

No guidance. I started upping her calories by dosing her with double cream in milkshakes/smoothies etc if she wasn’t able to eat a proper meal, and we were keeping a closer eye on how much was going in but it’s exhausting and nothing is changing, so I’m just putting food in front of her at mealtimes like I do to other DC and letting her get on with it.

I have asked for a referral to a paediatrician @Domoda, the GP said “what are they going to treat”. My DD was at this point self harming and asking me things like “will I put on weight if I swallow air?”

Disordered eating is highly correlated with ND. The pubertal time is a very common point, and the transition to secondary fit this to come evident. Maybe go back to The GP more generally about her MH and not her eating and ask for a CAMHS referral.

Sorry but I think that's an ED. My DD has had treatment, and we've learned so much as a family.
If she's self harming she's in mental pain. And that can easily trigger an ED.
My DD went through a self harming phase when she started recovery from the ED. As if one replaced the other.
It's agonising seeing your beautiful child listening to voices which will harm her.
My DD who is in her mid twenties had treatment at Orri in London. Very expensive, but this evil illness had been hanging around far too long. We're not out of the woods, but slowly we see improvements, and she's properly back at work now.
Your DD may be too young for Orri tho - DD's contemporaries seemed to be aged from 18-80!

Also at your DD's age she needs to be building bone density., If she's underweight that's hard. Her periods may not come too if she's underweight. So to answer your question - there could be harm being done.

That sounds like an ED. Did you tell them that? Ideally if you can afford it I think your best bet would be to find a psychologist who specialises in treating EDs in her age group or a group program, sometimes run by universities, treating ED. My DD doesn't have an ED, but has self harmed and had suicidal ideation and the right psychologist plus medication (dont know if this is applicable to ED) has made a world of difference. She's a little younger than your DD. She's naturally skinny and been sick a lot recently, drawn out respiratory illness and not eating much which Im keeping a weary eye on.

Your GP doesn’t sound very good. All the things you describe would give your daughter a diagnosis of Anorexia Nervosa. The treatment is first and foremost food - 3 meals and 3 snacks a day building up to around 2,500 calories a day. There is no point in any talk therapies or counselling until the brain is healed which maybe 6,12,18 months down the line. Unfortunately giving her food and letting her get on with it won’t work. She most likely ‘can’t’ eat in any way independently at the moment. My DD couldn’t make any decisions around food and almost needed permission to eat and lots of support. The parent needs to take over all responsibility for planning and preparing meals and snacks. It can be really exhausting and you need some support. Can you be referred back to the eating disorder clinic- Is it NHS or private? Can you self refer??

If she's 6th centile for BMI (being tall is taken into account) then that's perfectly within normal range, why is she unable to exercise or go to school full time? Those things could really support her MH. My DD (aged 10) is usually 3rd centile but drops to 2nd or lower if she has a big poo. She weighs less than her 8 year old sister but is full of fun and energy. It doesn't sound like it's the same for your DD...

Having no appetite can just be normal for some people but the lethargy, weight loss over a week or so and the questions about swallowing air are not normal. I would be looking for a second (private, possibly) opinion and questioning ND due to the strong link between autism and ED in teenage years.