Eating disorder

[Rasm1]

My daughter is 14 and severely underweight..after visiting the doctor we have been told today her BMI is below 15. She knows how thin she is and hates it, she doesn't make herself sick or anything but the doctor now thinks she's anorexic? Has anyone heard of this form of anorexia before?

@basicallylex Thankyou I have looked it was and definitely see a lot of similarities. I will mention it to her consultant when we are seen again on Thursday. @BeBraveAndBeKind have you heard of this before? It's definitely worth looking up and reading about it

Yes, @Rasm1, we discussed it as a possibility for DS. His clinician said that he met some behaviours for it and not others. He eats a decent selection of foods but in very small amounts. But he's picky about certain textures (mashed potatoes for example) and if he can't clearly identify every ingredient (he picks through casserole like it's poisoned!)

When I say decent selection, I mean that he's covering the food groups. His list of dislikes in those food groups is long! E.g. Fruitwise, he'll only eat apple, mango, strawberries and raspberries and no dried fruit at all.

Yes my daughter definitely has a lot of the symptoms aswel so il mention it at our next appointment.

She isn't anorexic if she isn't obsessing over calories and feeling/seeing herself as fat despite weight loss, isn't afraid of gaining weight etc.

Actually she can be. There is a difference between Anorexia Nervosa and Anorexia. Anorexia is a symptom of many illnesses and isn't always a conscious decision or part of a dysmorphic condition.

This explains the difference well: www.healthline.com/health/anorexia

The doctor is spot on. He should be checking for other health conditions as well things like ASD which often present this way for girls and considering that it may be part of a wider mental health condition.

Sounds like he's doing the right things so far.

I think you need to grasp how incredibly sneaky and desperate anorexia often is

@Rasm1 we seem to have very similar daughters - without our noticing, our teen DD dropped down to 1 meal a day: evening meal with the family at the table. She would finish the meal usually easily (probably because that the was only thing she was eating of a 24hr period) and I didn't notice that she was throwing away her packed lunch or skipping breakfast (she said she would have something from the school canteen).

We (the parents) were so shocked and upset when the eating issue was finally uncovered, along with the inevitable guilt and frustrations.

We're now under CAMHS eating disorder care, CAMHS diagnosed anorexia nervosa even though she doesn't exhibit "classic" symptoms - she doesn't measure calories or exercise excessively etc.

She is struggling on the 3 meals & 3 snacks per day re-feeding plan, but has not continued to lose weight since her diagnosis and our intervention 3 months ago. So a small positive.

She's on the waiting list for an autism diagnosis and psychological help thrifty CAMHS, but the waiting list is so long that we might have to consider private care.

to OP and @BeBraveAndBeKind, and any other parents out there going through this. This is so awful.

Ah yes despite my earlier post @Lovemenorca is spot on. People with mental health conditions which control their eating habits can be very very sneaky

@Cecily75 yes they appear to be very alike..camhs are being fantastic so hopefully things start to improve, continuously checking bloods and 4 ecgs in the past week. She's struggling with the 3xmeals a day as she feels so sick and is so fussy but she knows she has no other option. They have started her on thiamine and forceval vitimans aswel

Nuts are a good food to encourage they are high in calories, small in volume, and can be ‘sold’ to your child as a high protein snack. Full fat milk is another thing to try to get in - even in the form of lattes!

My daughter was diagnosed with anorexia nervosa at 16. We didn’t realise what was going on at first - and actually neither did she. She said her weight loss was exam stress. She was skipping breakfast, binning lunch and eating dinner. Became veggie around the same time. And quite quickly was down to 200 calorie and half a glass of water per day. She ended up taking a year out of education, spent four months on a day programme in London then five months in hospital 200 miles from home. Anorexia is very misunderstood and is a vile and insidious illness - and mental health services are under resourced and overstretched. It can’t be diagnosed by a blood test, it’s a mental health condition with physical consequences, diagnosis is made by a psychiatrist. It might be helpful to look up the NICE guideline and the MARSIPAN guideline so you’re aware of what services should be doing. We had our daughter at home with BMI under 13 and minimal (actually no) support, we didn’t know that she should have been in hospital on bed rest with daily blood tests in this condition, they were literally just weighing her once a week. She’s now 19 and has just started university but it’s been horrendous. I really hope that your daughter can gain some weight and your family do not need to travel this path xxx

@HostessTrolley Jeez that's a scary BMI she got down to and was left at home! Insane.

Was absolutely insane x I had to make threats (to contact CCG/press/MP) to get her level of care escalated, the team in London to whom she was referred for assessment were visibly shocked when they saw her. You trust, as a parent, when you’re seeing the eating disorder team, that they will be following guidelines and providing appropriate care as you believe that they’re the experts, don’t you....

My d fought like a warrior once she got to the point of realising that she wanted her life back. She asked to go into hospital at that point as she wanted to beat this thing but couldn’t do it without full time help. She’s in her third week at uni in London now, and loving life.

@HostessTrolley

Is she a healthy BMI? How are you coping with her away? Do her flat mates know her history?

She’s at the bottom of the healthy weight range for her height, she lost a bit of weight across her A levels but is slowly regaining it. I have to step back and give her the space to manage this herself, as she will be at uni for six years on a demanding course (medicine) and it’s kind of part of the recovery process that she learn to recognise, admit, and manage it. Mentally she’s in a great place, very open and honest. She’ll say that she knows she needs a bit more weight but she’s regaining it at a pace she can cope with, and wants to get it on before they get near exam/assessment time as, for her, being both low weight and stressed at the same time would be a dangerous combination and she wouldn’t want to fall into restricting as a coping mechanism. Her flat mates are lovely, I’m not sure how much she’s told them, but they’re bright kids with eyes lol. There is a girl in her study group that she’s bonded with who has a similar history. She’s eating well and having snacks and alcohol at the moment. Her personal tutor is aware and she had a long discussion at her occupational health appointment about what support is available and how to access it if she needs it.

It’s hard for me to step back as it was a really traumatic time but I have to do it. She was discharged from all services a year ago, just before she started yr 13. We’ve agreed to meet a minimum of monthly so I can see how she’s looking - she’s in London and we’re an hour outside so it’s easy to do. I’ve said that this is not because I’m expecting problems, but because I need to be able to relax. We’re going for dinner/theatre next week as I got bargain tickets, and she’s sent me lots of Snapchat pics at various freshers events and she’s looking good. She’s also seeing her boyfriend, who’s at a different uni an hour away, most weeks. I’m pretty sure he’d text me if he was worried.

As a parent your most basic instinct is to feed your child, it sucks when they can’t eat and with anorexia it’s often not even a choice they’re making for themself.

She sounds amazing @HostessTrolley ❤️

Thank you x she’s grown a lot as a person although it was a crappy way to have to do it x

Where abouts are you?
With my daughter I bypassed the GP and CAMHS as I wanted to move things along quickly. I was able to self refer to the Children's Eating Disorder Service (CEDS) in my area, NW London. Things moved very quickly, we were seen within 3 days and got a diagnosis of Anorexia Nervosa (sub type restrictive eating). We have weekly sessions with them, her BMI has improved and her heart rate and blood pressure are now out of the danger category.
A fantastic book which has helped me immeasurably is Anorexia and other Eating Disorders by Eva Musby. It has really practical and useful tips on dealing with an eating disorder as a parent of teens.
Best of luck. It is a long and stressful road.

We got through the first few months with the help of Ensure Compact drinks. She saw them as more of a medicine rather than a food source and was happy to take them to supplement eating. This got us out of the danger zone.

With us doctors, consultants and camhs have been fantastic, blood tests and ecgs being carried out 2-3 times per week and weekly appointments with camhs..now on a re feeding program which is causing serious arguments but it needs to be done. Sometimes I feel my daughter doesn't understand how sick she is, wev now been told if weight drops or stalls at all then she is going to be admitted to hospital.

sorry to hear you're going through this.. as others have mentioned, avoidance of textures and of food mixed together (like casseroles) is a classic feature of autism spectrum disorder - underdiagnosed in girls as they tend to present differently than boys - anxiety is often a feature - and they often have digestive/gut symptoms too. Puberty can be a trigger as autism often comes with a fear of transition/change. Just offering as a thought. Hope you get to the bottom of it as soon as possible xx

How are things @Rasm1?

@BeBraveAndBeKind now being seen by camhs twice a week instead of once, eating plan not going great..weight going up but very slowly, this week only 600grams, last week only 200! How's you?

Great that CAMHS are so on it! My mantra for the slow weeks were "it's not great but it's better than a loss"

We're going back to clinic this afternoon for a meeting to decide if they're going to continue treatment or discharge him out into private specialist CBT. He'd lost nearly a kilo the last time we went and his BMI was back to 14.3 which is what it was last November. They don't know what else to try because it's not a classic Anorexia/Bulimia/ARFID.

He's been better since the last appointment though and I've seen a change in his effort and mindset. We went to the supermarket this morning and he choose steak for lunch, which he wanted to cook himself and he's eaten it all so I'm hoping this is us turning a corner at last. It's certainly the first time in a really long time that he's show any real interest in food.

@BeBraveAndBeKind sounds like we are def battling similar conditions and cahms are happy not to stick a label on her yet as I think they are still unsure what's going on. I encourage her to pick out her own food when I'm doing the shopping just to see if we can broaden her diet, eating doesn't seem to be a problem in the evening, it's the whole day up until that point is so difficult. Leaves me soo drained and our whole life has been taken over by food and watching the time x

@BeBraveAndBeKind at our meeting this morning they actually discussed CBT with us , makes a lot of sense