Teen Eating Disorders - Thread 6

[myrtleWilson]

Hello everyone, and welcome to anyone looking at these threads for the first time..

Here is a link to thread 5 www.mumsnet.com/Talk/eating_disorders/4360801-Teen-Eating-Disorders-Thread-5

We've seen such an increase in young people facing eating disorders and these threads are testament to that.

With that in mind, we thought we'd try to include at the start of each thread some resources that have helped us along the way to date. No one resource will be a panacea but hopefully this list will be a useful starting off point for any newcomers and a reflection for others. It is our first go at sharing a list of resources on a thread so it won't be perfect!

www.beateatingdisorders.org.uk

anorexiafamily.com/?v=79cba1185463

www.youtube.com/evamusby

www.youtube.com/channel/UCa7G1P5WQopVMc9qTSP_lgA

www.orri-uk.com

www.nhs.uk/mental-health/feelings-symptoms-behaviours/behaviours/eating-disorders/overview/

www.stgeorges.nhs.uk/wp-content/uploads/2019/01/Junior-MARSIPAN-Risk-Assessment-Framework.pdf

I should add, I know it's the ED. She's always been a lovely girl - I do believe she'll get well and we are never giving up!

I think you need a contingency plan Nan so something along the lines of if refuses to eat what you give her, she gets something else which is higher in calories, if this is refused could you offer her the supplement drinks?

If that doesn't work you plate up the food, budle her into the car and drive to a&e.

The hope is she will start to eat on the way there but if not follow through and get a&e to fully assess her.

Ultimately if you can't get her to eat at home she needs to be in hospital (regardless of what they've said.)

You have to show the ED you are on complete control and are not messing about.

The self harm and head banging is awful, I found that very distressing and difficult to deal with but again you have to do what you can to keep her safe so physically restrain her if necessary.

Tbh as with everything parent related it's always easier to advise other parents!! I certainly have not always got it right, I let dd drop two snacks a day fgs 🤦‍♀️ but I did have a bare minimum I would accept iykwim and would absolutely follow through if she didn't eat that.

I was also able to compensate for the snacks by ramping up the calories in everything else she ate.

You have to dig deep and be fierce against the ED monster, once it realises you will not back down life does get a bit easier.

I know sounds crazy but your dd wants you to force her to eat, she is bloody hungry!! The bastard ED will throw everything and more at you but if you stand strong it will eventually get tired.

@NanFlanders I will add our experience in the hope that it can help you and your DD. We mimicked what the hospital did for my DD, 30 mins to complete a meal (and dessert) and 20 mins for a snack. If she refused then after the time she had to have one fortisip drink to replace a snack and two fortisips to replace a meal. Eating part of a snack then she still had to have the full fortisip and if she ate the main meal but not all of the dessert then one fortisip. The hospital used the word 'complete' a lot with my daughter to really hammer it home to her to finish what was in front of her, she would try and negotiate when partially eating a meal but soon realised that partial eating meant full fortisip anyway.

She hates fortisip (because it is so calorie dense and liquid calories are a fear for anoretics) so would eat the meals / snacks, also I think the fortisip reminded her of hospital which she hated. You can get the fortisip on prescription from your dietician.

It was extremely hard, I would sit with DD for the 20 mins and then bring the fortisip to her room. She would throw them around and I would replace, there was no giving in so the ED had to surrender - we experienced head banging and a full range of emotions but it did get better as we remained consistent. A straw to drink the fortisip would help.

@Girliefriendlikespuppies is further along this journey than we are and has more experience, I hope that you can take something from what our dealing with our DD.

I'm not sure if Dark is still lurking as she went through very similar with her dd? However once she started getting the calories and fats in she was a woman on a mission and her dd turned around fairly quickly.

This initial bit is the absolute worst, it was certainly the worst time of my life. I can remember making an excuse to go to a local shop just so I could sit in the car and cry.

@Girliefriendlikespuppies and @D1ANA22 Thanks for your advice - much appreciated

Hi, really sorry to be joining this thread but so grateful for all of the advice that I have read from those also going through this horrible journey. My 15 (soon to be 16) year old daughter is under CAMHS for an eating disorder; she is also autistic so advice from anyone in a similar situation would be much appreciated!

I have so many questions / things I don't know, but to start with ones I am struggling with most. Firstly, I (think I) understand how WFH is calculated; my daughter is currently 84% (up from 81% at first assesssment) and on restricted activity - but how do we know what her 'ideal' WFH would be? CAMHS are insistent that she should be at 100% but this seems to be way more than her healthy weight would be - she has always been slight, even when eating well, so 100% seems unrealistic and also unhealthy for her. Surely not all children can be 100% WFH as this is based on an average? I am more worried about her thoughts and attitude towards food than her %WFH but that is all that CAMHS seem to focus on.

Secondly, any further advice on how to 'make' her eat would be so helpful, particularly how do you carry on when your child is phyiscally gagging and shaking? Waiting until she has calmed down just seems to mean we miss a snack/meal, and then the eating disorder has 'won.

Apologies for the long post!

Hi @Worriedwithquestions , sorry that you find yourself here. I couldn't leave your question unanswered although sorry this is brief - from experience CAMH aim for 95% to 110% wfh and then the aim is to maintain within those parameters - but every sufferer is different. Don't give your daughter a target weight or wfh as that feeds the ED (i.e. a rule to not go above that weight) - and always consider having a tolerance, i.e. if your daughter is 105% then that allows some flexibility if she does lose to then get back to 105%). Wfh is based on averages, and we are all individuals, Eva Musby has a good article online with regards to BMI and wfh that is worth reading (i.e. one size does not fit everyone). I have read that aiming higher - say 110% does help the malnourished brain to recover better - as food is medicine then it makes sense to have more, this also builds in tolerance for a weight loss.

With regards to making her eat, have strict time limits to complete, have a substitute supplement drink equal to the calories equal to the meal not eaten and be firm, calm and consistent. We found that perseverance eventually beats the eating disorders resistance.

I suspect my DD is autistic, was this a recent diagnosis for your DD in adavance of the eating disorder.

Hi worried sorry you've had to join us.

The wfh is based on the average child, you can look back in red book at previous growth charts to see whereabouts she fell pre ED. When the dietitian reviewed my dd she looked at the red book but also heights that I had recorded on the side of a door frame.

My dd was on the 70 centile for height and weight consistently pretty much since she was a baby so I knew we'd have to overshoot 100% wfh.

You may have to let go of any preconceived ideas about what's healthy or not though, any fat phobia or bias around what's a 'healthy' weight will allow the ED room to grow.

I think distraction is probably an understated but incredibly useful tool to get them eating. So let them watch telly, listen to music, play board games or talk about anything that interests them.

As soon as my dd started to eat I'd immediately start gabbling on about something to distract dd, she still has the telly on now when she eats.

I suspect my dd is autistic as well and what I found helpful was using her love of routine to my advantage so the same breakfast at the same time for example.

I did allow her dog walks as I felt the benefits outweighed the risks even at the height of the illness, it also gave me leverage as something that I could stop if she'd not eaten enough.

Thanks so much @D1ANA22 and @Girliefriendlikespuppies I haven't given my daughter a target weight and try not to focus on that myself, but the CAMHS worker talks about needing to be 100% WFH at every meeting we have, so my daughter has already picked up on there being a target... I don't think she has ever been over the 25th centile for weight (we rarely weigh ourselves though) and is only 50th centile for height, so 100% just seems the wrong thing for the CAMHS worker to have us aiming for.

Distraction and routine are both helpful suggestions - I know at weekends our routines go out the window, which doesn't help in terms of fitting in snacks as well as meals. She's not keen on playing games, but we'll try watching TV and trying to have conversations that are not about eating - I currently find myself reminding her to eat throughout our meals, otherwise she just sits there.

Glad to see that we are not the only ones allowing some 'sneaky' exercise - I feel so guilty for allowing it, but equally see the difference that allowing some exercise makes to her mood.

I am struggling to stay calm and consistent when she completely refuses to eat (or drink), particularly when she needs to be getting ready for exams/her sibling needs to get to school etc. Hopefully this will get easier once her exams are over as there will be less time pressure.

She was diagnosed as autistic last summer, before the ED became apparent (although I think it was creeping up on us then), but we had concerns about it since she was much younger.

Hi @Worriedwithquestions please try not to get hung up on wfh. All you need to focus on is increasing it. The end point may be 100% or higher or lower but for now your DDs is too low. It's not helpful that the nurse keeps focusing on it. Maybe an email to ask her/ him to leave it would be in order!
For what it's worth my DD was always slight and on the 25 percentile for weight. We had to get her to over 100% before she started to improve properly. A year on from being weight restored she is now lower than that (I don't know what as we no longer weight her) but she has settled around where i would have expected her ti end up ie she looks like the same build she did (although now through puberty) that she has always been. However it took that year for her brain to heal. They need the extra weight to allow for illness, relapses and extra activity. And for healing.
Honestly every day at her higher weight made a difference.
Tey using the sneaky exercise as leverage. We removed our DDs exercise if she did not eat her meal plan.
A written detailed meal plan with everything listed and the times really helped us. Dd used it as a to do list. And crossed stuff off. Which appealed to her rigid mindset (at the time)

Oh and flexibility is not really possible with EDs we were stuck to her routine for months (some of which luckily for us (?) was in lockdown). Can someone else help with the school run for her siblings etc.

@Lottsbiffandsmudge Wise advice, thanks - I will speak to the CAMHs worker to ask her to stop talking about wfh and just focus on gradual weight gain instead. You are totally right re needing 'extra' weight for relapses etc - she felt unwell (tummy bug) recently and she lost weight really quickly; I guess they need that cushion. Will also try removing exercise as a way of encouraging her to eat - although that goes against everything I have always believed (ie that exercise is good!). Quickly learning that all of my principles need to be set aside to allow a focus on her recovery instead. Her sibling can walk to school on their own, it is more the impact on them of family stress around breakfast, as I hate seeing them head in upset by the battles with my daughter. My work is really demanding at the moment, which means I have much less time to spend with them both than I would like, but I am speaking to my line manager about this next week to see what can shift. So glad to hear that your daughter is in a much better place - positive experiences give me hope!

It is so tough. But weight gain is what she needs. And yes to siblings suffering. It is hard for them. My two DSs were badly affected but they are all ok now and back to being friends (as much as 18,16 and 14 year olds ever are!).

Welcome to those who have sadly had to join this thread - but you'll always find some good advice and just as important lots of support.

Just on the distraction front, it doesn't have to just be when they're eating - if you can see a pattern to ED related anxiety then distraction can help then. So for example, my DD would be very anxious immediately before and after meals (ED telling her not to eat beforehand, ED berating her to eat afterwards). We managed it by having distraction activity - playing a game im Tmediately beforehand and then often jumping in the car once meal had finished to get her out of the 'food environment'. This approach works well coupled with limiting meal times - 30 mins a main meal, 20 mins a snack. It gives the ED less time with them. At her worst period DD found mapping out the day from 7.30 to bed time in 30 minute slots helpful - so she knew once breakfast was finished she would spend 30 minutes cleaning the kitchen and then an hour of drawing etc etc. As part of her self harming she would head bang and scratch (deeply) so for her activities that kept her hands busy were really useful.

It does take a while to get understand what distraction works best but main point is that it doesn't have to be just whilst eating.

Next week DD is off to Ibiza for 5 days with her best friend - a bit of anxiety is creeping in about body checking etc but she's taken on good advice from her personal trainer and I'm really hoping she has a lovely chilled out time with her friend, getting some sun on her skin and recognising how strong she has been to navigate recovery to this point....

@peggy08: Quick tip: Can you get some fortisip or ensure? I think you need a prescription. I used to cut off every label as they are 300 calories each. I told DD that they were ‘nutrition drinks’ made for her by the dietician. She drank 2 per day. DD didn’t find out until recently how many calories there are in them. She doesn’t need to have the now as she has gained weight (although has been warned she will have to take then again if her weight dips). But your DD needs so much more than the drinks as others have pointed out.

@AndPeggy08 and @Namechange22temp if you can’t wait for a prescription to get started then I recall that fortisip is sold on Amazon and boots stock ensure. There are also juice drinks (fortijuice I think they are called) that you may also add which are calorie dense. We struggled with DD to drink these, anorexics think of liquid calories - if you can get them in a smoothie that may help if your DD can tolerate such drinks. Good luck.

Just a quick one before I dash into work.

Thanks @Namechange22temp and @D1ANA22 I will look into getting some of that for her.

The GP phoned back on Wednesday after he had spoken to CAMHS. My husband said he sounded in a bit of a panic - I think he hadn’t realised the seriousness until he had spoken to CAMHS. She has been booked in with CAMHS for the 20th June and we’ve booked a blood test and ECG for next Tuesday. The doctor told us that he was happy to see us or my daughter alone again to chat and would have got us back in that day - so I feel like CAMHS have told him he should have done much more in the initial appointment.

Good news@AndPeggy08 , but 20th June is still a long time off...

That's good news @AndPeggy08 but I agree 20th is a long way off. How is your DDs eating?
I would be banning exercise and starting on a meal plan..

AndPeggy08: It's good that she has been referred to CAHMS but agree that she should probably see someone sooner. I would take her back to theGP today if you can. If he is a bit panicked then he will at least chat to her about how serious this is. Anorexics are in complete denial but I find with my DD the more people (Gp's therapists etc) that talk to her the more it reinforces that she has an eating disorder and that it is a very serious issue.

Does anyone have more info on how to calculate weight for height? I have been told that DD is at 85%. She is 164cm and 45kg. Her lowest weight was 38.9kg about 7/8months ago. Pre ED she was always thin, was just under 42kg 1 year ago at 13y old and that was pre ED so I'm told this is good progress.

Peggy the 20th is way too long away, how many calories has your dd eaten in the last 24hours?

As I've said before you need to take your dd to a&e, take the junior marsipan checklist with you and insist all the checks are done.

You also need to start preparing for time off work, you can not get a child well from anorexia and work it's just not possible. The refeeding will take all your time and energy.

Please listen to us.

Thanks all - gosh it shows how naive (and new) to dealing with this I am. I thought we’d done well to get an appointment on the 20th June.

I know it looks like I’m not listening to your advice - trust me, I am taking in every thing you’re telling me and it is utterly terrifying me. I’m not sleeping with the worry. Neither myself nor my husband are in a job where paid time off would be covered. I work for the NHS who are pretty good at allowing special leave but upon scouring the policy, I wouldn’t even get paid leave for her appointments. The reality in the current climate is that we can’t afford not to work - I’m going to have to heavily rely on my in laws to get involved and help us out.

We have taken some steps to help her. I’ve removed the scales, taken MFP off her phone and we’ve put my Cubii in the garage - she was using it to exercise off 200 calories per day. She agreed to go to the Carvery after work with me yesterday ( in her head she was thinking it would be the same calories as a roast I would make her at home but in reality it would be much more - she didn’t need to know this). I offered her a dessert and she debated it for 20 minutes - she eventually chose the lowest calorie dessert on the menu and ate half which I feel is some progress as I didn’t have to push too hard. She did complain she felt guilty and bloated afterwards but I tried to keep her distracted.

Bloods and ECG on Tuesday - so they tell you whether the ECG looks ok straight away?

Im so sorry you all find yourself in this situation - it truly is horrible.

Peggy that does sound like good first steps. You need to start making the food related decisions for your dd though, it's not fair to ask her what pudding she wants as the ED will make her choose the lowest calorie one. You make that decision for her based on what you know she actually really likes.

I work for the NHS and was signed off with stress twice (both times for around 6 weeks) when my dd was at the start of this journey. It was fully paid. I was lucky that my boss was happy for me to be flexible with taking dd to appointments so I could make up any time I missed.

Is your dd eating at school? You need to talk to the school and ask if they will supervise your dd eating lunch. Have you stopped all her sports?

@AndPeggy08 this was our experience and every sufferer is different. When the anorexia was diagnosed with DD it kicked back - she was sent home on bed rest and stopped eating much at all. This is common once the illness is exposed. DH and I could not get many calories into her, it was terrifying. She needed to be an inpatient then but they had no beds. She was very ill so we took her to A&E at our local children's hospital and refused to leave - she was admitted to a general ward and had to be tube fed. I am so angry with the GP, CAMH and don’t trust them - our DD nearly died, she had to get to that crisis point for action and that has badly effected her recovery. I am not being over dramatic, but get her to hospital as soon as possible. And I’ll say I’ve had a lot of trauma in my life, but my DD’s anorexia is the hardest thing that I have had to deal with. And refeeding is the hardest, I know DDs grandparents would not have been able to deal with this, you are not dealing with your child as they are consumed by a brutal, manipulative, relentless enemy whose sole intention is to kill your daughter - watch the you tube clips of the news reader Mark Austin whose daughter Maddie suffered from Anorexia - that gives you an idea of the seriousness of the mental illness. I wish I had known about this thread when DD was diagnosed, you are your child’s best advocate.