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

[Curlyhairedassasin]

New thread as old one is filling up

Just to add, I wish I had taken her out earlier when she was sick and prioritised recovery over GCSEs.

My daughter had been out of school for a whole term - she was 75% WFH to start. She was allowed back part time (1/2 a day one week, 2 halves the next etc) when she hit 80% but that was because she had finally started putting weight on and it was coming up to the holidays and another 6 weeks off. She's been back now full time for 4 weeks and fingers crossed it's all working and she's up to 89%. She even does netball once a week. We are planning on going away at half term, she's still very controlled in her eating (the right amount of calories and no more) and we use scales for a lot of things - are we being mad?

@littlemissy12345is your dd having any input with the food you’re giving her? Does she watch meals being prepared?

Ideally she should be well away from the kitchen and not have any clue about the food you’re preparing for her so she wouldn’t know if it’s been weighed or not iyswim.

Unfortunately allowing them some control over the food just stores up problems further down the line imo.

They have to trust that you know how much food they need and weighing food is not normal or healthy 🤷‍♀️

@Pearl97under 80% is very low so unless they are eating really well, gaining weight and taking steps towards recovery I wouldn’t imagine they’re well enough for school.

Ime Camhs def looked at where my DDs height and weight sat pre ED and used that as an indicator for where she needed to get back to. In my DDs case it was over 100% wfh.

I think everyone's situation is different.
Dd never stopped going to college and that was definitely best for her (wfh 76% at it's lowest).
She really wanted to get better but unfortunately had to wait 7 months to start treatment that worked for her (not helped by camhs wrongly discharging her ).

Yes. We are still weighing all dds food after being discharged two months ago from inpatient unit. She would not eat if we didn’t and she knows exactly how much there should be

My DD 13 is in school around 3 days per week at 75% WFH. She was at 70% at her lowest. If her weight doesn't increase at the weekly checks then I'm aware school will be off limits. No sport at the moment, isn't allowed to walk to school and was on sofa rest for a few weeks. Being allowed to school is what motivates her to eat which might be why CAMHS have allowed it.
It's utterly utterly exhausting and I've been a quiet reader on here and have greatly appreciated the insights of others and to know others are also going through this.

@Anothersetback glad you found treatment that worked. Can I ask what the treatment is? I like FBT but im not sure how much it helps my DD - maybe im being impatient. My daughter wants to get better too and is getting more and more exhausted with it all.

What are people's experience of their DD/DS eating with their dads (ive presumed we are all mums here but maybe im wrong?)
I'm desperate for one meal off and work will only accommodate this for so long.
DD would have lunch w DH until two weeks ago (sandwich in car at school lunch time) but now refuses. What would you do in this case? I could put my foot down but am worried that means she just wont eat.

Thisnowtoo,
Dd refused parental involvement and at 16 they can say that (never mind whether when they are such low weight they can truly make an informed consent...).
So she started with CBT-e. Later she said it was a bit formulaic and I think a big part of it was just clicking with the right person rather than the method of therapy itself.

Unfortunately I don’t think this is sustainable, it just enables the ED.

Avoiding fear foods, allowing them food choices, letting them leave food, letting them in the kitchen, allowing more exercise than they should, ignoring behaviour you know are ED related etc may work in reducing anxiety initially but longer term just keep them stuck and unwell.

I am guilty of allowing some of the above behaviours and it’s a bit like making a deal with the devil unfortunately. My dd is ‘well’ now, living the life of a typical 19yo however STILL (5 years from initial diagnosis) leaves a small amount of food on her plate. The ED still has this hold over her and it’s very frustrating.

The worry that they will stop eating completely is what they use to keep the care givers in line and not push too hard but you do have more power than you realise.

@Thisnowtoo DD refuses to eat at home with DH. There have been short spells where when ate with him supervising but really, it's just me. She is now eating at school with supervision from staff. She is only building up now to full time (eating in school was a pre-condition for moving from part time to full time). When she was part time she ate at home with me (I can only work part time due to the needs of my DDs).

Would school be happy to supervise the lunch? If not, and she is not eating with DH, I wouldn't allow her to attend full time. Is eating lunch something you could use as a carrot for accessing a full time education.

@L0LLIPOP I fully agree with girlie, what you are doing is enabling the ED. You really need to find a way to break that cycle. It's neverending otherwise. It's incredibly difficult to break out of it but unless you do, DD will not get out of the ED. Do you have an ED team you could ask for support in this?

Yes I’ve got tough with awful nonsense ED foods like cucumber and fucking rice cakes. After school snack is now sourdough toast with avocado. We try and reject any evidence of that awful time. We control good Dd eats what she’s given including gnocchi etc. Don’t trust her yet.

@Curlyhairedassasin Glad its not just us! School might provide that support but DD wouldnt agree. I think i need to accept its on me to do.
I was wondering if its another ED control symptom that we should tackle. We are trying to tackle those one at a time. More keep trying to pop up. It's like some twisted whack a mole game!

I have been lurking for a while on this thread. Reading everyone's experiences has been so informative, although I know you all must have been through sich difficult times. My DD is 15 and has been restricting what she eats for many months. She has lost a huge amount of weight. I didn't have a starting weight for her but she was probably above average although we never said anything or made an issue out of food. After many months of GP visits she finally was given an urgent referral to the Eating Disorder service after she lost 6kg in six weeks. She is autistic and has a long history of anxiety.

She was assessed this week and has had an ECG. Her wfh is low - 75 - so bedrest has been advised. We were told to start three meals and three snacks per day but not given any guidance about meal planning. She has eaten what I've given her today with quite a lot of resistance, but she did it.

I am concerned though because the team have decided they are unsure if she meets the criteria for an anorexia diagnosis despite her weight loss and very restricted eating patterns. This is because she cannot explain to anyone why she is restricting her eating but it doesn't seem to be overtly guided by worries about body image. I asked what support was available if she doesn't receive a diagnosis and they said basically nothing - just back to GP care. They are monitoring for a couple of weeks and then doing further assessment but I am worried we will be abandoned with no support.

So sorry to hear how worrying. When we found out we got an urgent psychiatrist appointment via Dh bupa but we would have paid otherwise. The psychiatrist was a specialist in ED and quite literally saved Dd in two zoom sessions. She pressed all the right buttons with her by being very tough.

Then CAHMs who were also very good but didn’t see for 6 weeks but with the psychiatrist and following the Musby book method we turned it round. Dd has no other conditions though and they are all different but this worked for us. She also could not explain why.

@SisterMargaretta we were in this position for a long time prior to diagnosis. It’s a horrible limbo - what eventually worked was watching a short animation about AN (on BBC Teach website) and asking her direct questions after each section of the story, we also suspect neurodiversity may have made it difficult for her to recognise and articulate what’s going on.

regardless of diagnosis though, you can google a meal plan for 3+3 (pick one from an NHS Trust) which will give you an idea of quantities. Be careful to start (the snacks can be a glass of milk) but it’s as much about reinforcing a routine of eating at regular intervals as it is about calories in.

Sorry to hear this @SisterMargaretta . This makes me so cross on your behalf.
My DD was diagnosed with AN and it was never about body image. She was trying to remain fit in lock down for her sport and went too far, lost too much weight and then developed AN. It does not have to be about body image.
Once the weight is lost the AN thoughts will take over. How and why the weight loss occurs is almost irrelevant. Your DD now has AN, and needs to gain weight to start her recovery. Many sufferers cannot articulate their thoughts and feelings about their illness. My DD still won't discuss it ,5 years later. She can't really explain it. But I can tell you her AN was very real. Please be very assertive and advocate strongly to be diagnosed and treated. My DD did not speak to her ED key worker for the first 5 sessions. It is so not unusual!
We were not given a meal plan either. I made one up using meals she had always eaten prior to illness, and added snacks.

@SisterMargaretta I'm sorry to hear of the experience you've had. It might be beneficial to try and talk to the ED team without your daughter present. She clearly has AN and it could be very harmful for her if she's told she hasn't.
My DD13 has no body image concerns and a total lack of awareness of how thin and ill she is but was given a diagnosis. Having someone in authority explain the dangers to her and how she has to eat 3 meals + 3 snacks a day is what helped us. It's far from easy and they need a huge amount of calories to regain their health and weight. Wishing you luck and strength, it's a really hard journey for all of the family

@SisterMargarettai echo all the other posters, it is beyond frustrating to hear that ED teams seem to have so little understanding of anorexia. Anorexia is really a biological illness caused by weight loss, for some that weight loss is caused by a desire to be thinner but for a lot of others it can be caused by recent physical illness, accidentally not eating enough and doing too much activity, anxiety and any other reason for a teen to lose weight.

We weren’t given a meal plan either, I designed my own based on what I knew dd liked and what I could add enough fats and calories to.

Have the principles of FBT been explained to you? Have you been signed off work (if you work) this is not a quick journey and likely to take months of feeding your dd to get her well.

Autism can work to your advantage, my dd is also neurodiverse and so once the rules and routine were established dd did stick to them.

Has your dd had her bloods and other observations checked? Her wfh is v v low so id want regular bloods to check for refeeding syndrome initially.

Have you checked your dds phone? Id be tempted to take it away at this point as the temptation for your dd to look up ways to avoid weight gain will be very high.

My dd also never verbalised what she was doing to the ED team but she did want to be thinner as she thought that would make her more popular. She absolutely would not have told the ED team that though!

Thanks very much to everyone who has responded to my post. Nothing much was explained to me at the assessment but I have read up enough to understand the basics. DD has eaten her snacks and meals today although nothing with that many calories yet. Just trying to get her to eat that many times a day is a battle. They said nothing about refeeding syndrome but I've looked it up myself. I agree that being autistic does mean she is more likely to follow the rules (if set by someone other than me). I do need to check her phone and laptop carefully. She is having her weight monitord next week, then further assessment to see if she fits their criteria for diagnosis. I spoke with someone from BEAT who signposted some resources about what to do if I feel a bad decision has been made.

My DH and I both teach full time which is very difficult for supervising her eating. I work quite close by so at the moment am supervising breakfast before I leave then coming home during my lunch break to make sure she eats lunch and one of us is having to video call to check she is eating a snack. I think we will probably have to try to take some time off though, somehow, which is a whole other stress.

Thanks again for all the tips and advice.

Also, ECG was done Monday. It said "mjnor abnormality but the report said nothing needed tk be followed up. I couldn't get bloods booked in until the end of next week. I don't know what it's like in other parts of the country but here there is an online booking system.and there are often no dares available for several weeks.

@SisterMargaretta i honestly think you’ll need to get signed off work, i was signed off for nearly 2 months to get dd started on refeeding.

It really is still time job to get enough food in to them as well as to check they are resting enough and not compensating in other ways.

Anorexia is a life threatening illness and in the same way you wouldn’t worry about taking time off work if your dd was diagnosed with cancer this is no different.

It’s worth getting the Eva Musby book for guidance on how to approach FBT.

Also minor abnormality on the ecg rings alarm bells, you might want to take dd to a&e to get all the health checks done. How many calories are you getting into dd roughly?

@SisterMargarettaI'm a full time teacher too and found that even though my husband was at home I needed to take 2 months off work to supervise meals properly. She would do anything to avoid it if we didn't watch like a hawk. When I tried to work I was just in the middle of a battle been her and my husband. It ended up being unmanageable. I was signed off by the doctor to support her.