Support thread 14 for parents of young people with an eating disorder

[Curlyhairedassasin]

New thread as old one is filling up

@Thisnowtoo is she still eating enough or is this going down too?

The behaviour you describe is very common. Recovery is (for us at least) a constant up and down. We have been dealing with AN for about 3 years now and that up and down is normal.

Has anything changed recently? Could going back to school play into this?

So far, she hasn't dropped any weight. But she is finding it a lot harder and on a couple of occasions she couldn't manage a meal.

Yes, she is back at school. She is doing her A levels, though she has taken the pressure off herself a bit and isn't doing much homework.

@Curlyhairedassasin in those 3 years you've been going through this, has your child been WR? Has their mood improved at all?

@Thisnowtoo not really but close. She had, after her second hospital admission, a short phase where she was incredibly hungry and put on a lot of weight in a very short time but it soon came down and 'normalised' when she started eating the meal plan again . So it lasted a month or so. she is currently refusing weight checks. I don't think we are far off - we are cruising somewhere in the low 90s WFH. Her eating is ok-ish but she still needs supervision for all the meals. This hasn't gotten any easier.

How did people cope with the bed rest. We’ve had a hospital admission and now home on bed rest. My child misses school so much and activities. Friends. Going places. It all just makes them so sad not being able to.
do most children just stick to the plan when asked? The meal plan? And do they really gain weight?

@Thisnowtoo this sounds like extinction burst and is really common, it’s when they are getting better and are more weight restored the anorexia suddenly kicks in again.

The important thing for you to do is hold the boundaries really firmly, keep the food going in and push through it.

It is sad and I think it’s okay to say to your child ‘look at how much this illness has taken from you 🤷‍♀️ The quicker you recover and start following the meal plan the quicker you can start getting your life back.’

Yes they should follow the meal plan, have you been given guidance on supervision and encouragement to get the food in? Have you read the Eva Musby book?

Distraction is helpful when they are eating as well, having the telly on, playing gaa as he’s, watching funny videos etc.

I'd not heard of extinction burst. It does fit. I read that it comes with anxiety - which has gone through the roof.

Thanks for responding, again. While not great news, it's hopefully a bump in the road.

Hello everyone, I was on here a very long time ago in a desperate place when my daughter had anorexia. She’s in a more stable place now but I’m trying to figure out how concerned I need to be by her current wfh which is 86… She is very slim build so is naturally a lower weight than the average… but she looks very thin. What do you all think? I know it’s low but how worried should I be?

@Teachermum81 what would her wfh have been pre Ed?

I’m not sure I’m afraid. Probably not that different, maybe a bit higher at times. But she’s never eaten enough due to sensory issues/fussy eating. looking back at photos over the years there are times where she looks very thin but she was a little girl then, whereas she is now a growing young woman (15 yrs).

@Teachermum81 are any of her anorexic thoughts/behaviours back? Is she more lethargic lately? She could be slipping back with pressures of exams etc (presume she is GCSE year) so might be worth referring back to services.

Can I ask in what way services were helpful to other families? Because I didn’t find them to be helpful at all..

I’m also trying to make sense of the different data online. Has anyone noticed that the teenagers nhs bmi calculator doesn’t agree with the wfh guidelines? If I put my daughters metrics into the nhs calculator it puts her at the 11th centile which is says is healthy, and apparently all the way down to the 2nd centile is healthy. My daughter discovered this herself ages ago and has been using it as a reason to lose weight. But the same metrics give her a wfh of 86 which is only one above the general threshold for taking them out of school (or out of PE)… does anyone understand this?

Sorry I didn’t answer your other questions. She is no more lethargic than she always is. She’s autistic and we have been trying to help her lately with her education which has been a nightmare. Changes we have made have actually seen an improvement in her mood and probably less lethargy because of that. It’s very difficult to pick things apart when so many factors are at play. I do get the sense that she has a desire to lose weight because it makes her feel safe.

BMI only factors in height and weight (for anyone 18+). WFH is a combo of height, weights and age. Someone with the same height and weight aged 14 would have a higher WFH than someone with the same metrics but ages 16. the BMI is more static, and WFH is depending on age. I hope this makes sense. If she had the same weight and height a couple of years ago WFH would have been above 86% WFH.

No the nhs calculator for children and teens factors in age.

100% wfh is the 50th centile, so an idealised goal to achieve. If your child didn’t have anorexia it’s fine for them to follow their natural growth curve (which should be similar to whatever they were on in infancy). The MEED guidelines are useful to ascertain whether you need to be worried, but if she has been through the system before and been diagnosed, and you’ve noticed a change I would consider implementing a meal plan if she isn’t following 3+3 independently.

I would be less concerned with the figures and go more on your gut instinct, is she restricting more than usual? Are the anorexia behaviours back? Is she exercising more than usual?

WFH of 86% is very low especially with a history of anorexia…

I totally agree. Don't go off just WFH, and don't even look at BMI.
Is she getting her periods still? Is she tired, cold, lethargic?
Are her behaviours going backwards. Is she eating as freely as usual or not? To be honest you are worried enough to post here, which means your gut probably thinks things are not right. So they probably aren't....

Dd seems over it. Eating unprompted no weird behaviour around food. Started year 12 loving it lots of friends and nice boyfriend.

But we are still under CAHMs for 6 weekly weigh ins as wfh seems stuck. She burst into tears at her last CAHMs weigh in on hearing she was still 89. He said she was plateauing but slightly too low. She’s pretty tall and family members at her age such as my sister were also very thin but did not have EDs.

@TheaBrandt1is your dd eating enough to gain weight? Where did she sit wfh wise pre ED?

If you’re happy she’s better and the clinic isn't helping you can ask to step back and contact them if you’re concerned things are going backwards in the future.

89% wfh is still low and I’d want more weight gain but if you’re happy she’s eating freely and making good choices you can continue to support with this without needing Camhs.

Do they ever allow children to school below 80 percent weight for height? Also, have you ever found that they work out that your child wasn’t destined to be 100 percent weight to height?

@Pearl97 we were never that low. DD was 82/83% at her lowest and was admitted to hospital at that point as her eating had gone down so much. having said that, I couldn't imagine a child under 80% to be well enough for school. DD is now in her low 90s and we cruise along that and ED team are happy with that as she is stable-ish and she was always lean even before becoming ill. Nobody is saying she needs to get to 100% WFH. My non anorexic DD eats like a horse and is never over 95%WFH.

@Pearl97 the guidance we have received is no school under 80%, part time school 80-85%, full time school but no PE 85-90 %. DD was at home on ‘sofa rest’ at 76%. They will also factor in any other concerns from the MEED guidelines.

my daughter is at college at 75% but she was stable at that point for a number of months before she started. There are regular meetings between the school and her caseworker. She’s part-time too so actually only does about 10 hours a week (2 a levels). It’s not ideal and I think most schools would say no, particularly for a younger person.