Teen Eating Disorders - Thread 5

[myrtleWilson]

Welcome everyone,
Our last thread can be found here
www.mumsnet.com/Talk/eating_disorders/4279530-Teen-Eating-Disorders-Thread-4?watched=1&msgid=111172926#111172926

That we're on thread 5 in about a year is a reflection of the incredible increase in mental health issues, including eating disorders amongst young people over the last couple of years.

With that in mind, we thought we'd try to include 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

People to look up on social media
Hope Virgo
Ro-Recovering
James Downs
Cara Lisette
Adam Fare
BarefootRebel
Ilona Burton

Girlie hope Covid is not too bad for your DD

Betty - great news on a gain!

dark how are you doing?

@LizzieDarling with your DD's self harm and 'rage' - are you getting any support from CAMHS - in our area it was called Intensive Home Support & separate from the ED team. They'd come out to the house and work with DD around distraction techniques and a self care/keep safe plan. Initially we were a bit sceptical as the techniques seemed to be aimed at younger teens (DD was 17 at the time) but once they got to know DD they were able to adapt methods to suit her needs.

One of the best things they did was to get her to identify her green/amber/red states - what did she notice about herself when she moved to amber (how did her body change, what were her hands doing) and then the same for red state. They they worked on what she could do to help herself when she was amber/red (so for example what distraction worked best at amber and what worked best at red) and then what we could do (or not do) to help her when she was amber/red. It really helped and I admit I was surprised. I've shared somewhere on this or another thread examples of each stage and happy to do so again if that would help you.

How have you got on @Peanut82 ?

So sorry you're in A&E @Peanut82, so grim.

It's really encouraging to hear about success stories on meds, thank you. Dd is starting on 25mg, seeing the GP again next Thursday to see how she's getting on.

@myrtleWilson that sounds like exactly the sort of strategy dd needs. I was actually reading back through the old threads the other day and I took a screenshot of your dd's plan, her experience sounds very similar to ours. Unfortunately there's nothing like that here, but I will email dd's psychologist and ask her if we could come up with a plan that would work for her. She says her anxiety is paralysing at the moment, heart pounding, mind racing, etc. all the time which must be exhausting. Sometimes it just overwhelms her. We have a prescription for Xanax for when it's too much. It's hard giving her all this medication. Before anorexia she barely even needed paracetamol. Having said that I'd give her anything that meant she feels like herself again.

When I was reading back old threads I was taken aback at the amount of food she's going to need to regain her weight. She only started on a meal plan a month ago, and she's made a lot of progress relatively speaking, but really my toddler nephew is eating more than dd. I have teen boys and they get through a lot of food, but it tends to be very vegetable/pulse/wholegrain based, I'm going to have to change my recipes to pack in the butter/cream/red meat.

@Peanut82 I feel for you, we were in A&E last week, bad enough in normal times, but add in Covid and it's really tough. I hope they were able to help you.

Hope your okay peanut.
*
Lizzie* on the fb group (who are very militant on the FBT approach) they talked about 1000 calorie snacks today!! For some recovering teens they need an astonishing amount of calories, some up to 10000 a day. I think we probably all underestimate how much food growing teens need.

I think I manage to get around 2500-3000 calories into my dd most days by cramming a lot of added fats to everything. It's probably not enough tbh and I think she is still hungry some evenings although would never admit it 😥

@LizzieDarling it's so daunting at first. Soon, you will see so many opportunities to fortify foods. For us it was definitely a turning point when we realised that we were never going to get there by quantity of food but instead focused on calorie density. A simple example is that duck eggs are 130 calories but chicken eggs are only 70 calories. It's still '1 egg'.

It's also so individual. Unlike lougle, there's no way dd would ever eat a duck egg as she knows that it's nearly double a hen egg in terms of calories. I've not been able to hide anything or pack extra calories in. She's just too aware.

Agree with NCTDN, I could never get any smuggled calories past DD. The few times I tried to add fat I got caught and it broke any trust between us. I don't think she's ever had more than 2500 calories in a day.

That said, her weight gain has been glacial.

@LizzieDarling - what sort of food is your DD into? I know others disagree with keeping things 'healthy' as that feeds into an orthorexia/eating disorder, but DD just won't have any fatty or sugary foods. We have a bespoke eating plan that panders to her slight faddiness but when she follows it, she puts on 500g a week so long as she doesn't exercise too much. If you're interested PM me and I'll send it to you.

I think the risk with not challenging the fear of high calorie foods is that progress will be slow/non existent. Your child is sort of sat in purgatory, not getting any worse but not getting better either 🙁

Thats not a dig at anyone as I'm also guilty of not rocking the boat by not pushing dd to finish food or challenge any of her 'rules'.

The fb group is very much they eat what you tell them to and the higher the calorie and fat content the better. This is because all evidence that's been done shows the quicker you can get the weight back on the better the long term outcome.

I feel that there has to be some middle ground and while some kids definitely do just need weight gain to recover that's not the case for all kids (my dd included.)

As always with ED there are no easy options or quick fixes sadly.

Nc if your dd is anxious about calorie content would removing absolutely everything from packaging make any difference? Will she eat home made foods like flapjack which can be loaded up? Thinking about the duck egg example when cooked I can't tell a duck egg from a chicken egg so if you dished it up in a cooked form do you think your dd would notice?

@LizzieDarling glad you found the safe plan and hope it works (the best distraction for us - aside from the grounding exercises - was holding the ice cubes - DD could hold them for such a long time without seemingly caring - I suppose a visible indication of how strong her enmeshment with the anorexia/psychosis was.

Its a funny one ED isn't - there seems to be a common-ish pathway/set of behaviours and a commonish- pathway of treatment but it has to be tweaked around foibles - and the foibles aren't even consistent within one person! My dd needed to have trust in us not to put more calories in food by adding cream etc - if we had I do think it would have pushed her backwards. However, with exercise she wanted us to be much more interventionist and wanted us to take complete control...

DD noticed every slight tweak! Luckily we're past that now and we need to trust her to eat as much as is required
If I'd sneaked things in any trust would have been lost. I debated using a sharpie to hide all calorie content on packaging but in the long term decided that would help her. If she'd been younger I probably would have done.

I hope @Peanut82 is ok- not heard anything since she put they were in a&e...

Yeah def Myrtle I think trust is a complicated issue in itself, my dd can 100% trust me to do everything in my power to get her well. I couldn't care less if the ED doesn't trust me 🤷‍♀️

Hiding calories in my mind is no different to hiding any other medicine in food that someone with a mental illness needs.

That said for me it's not been hard to do as my dd stays out of the kitchen and generally doesn't question anything I give her. She prefers it hidden imo, for example if she sees butter on toast she can't eat it however if it's melted into the bread that's no problem.

I think you have to know your child, don't you? DD1 has learning disabilities and her issues have never been about calories because she hasn't really got a grasp of what that means. So I had no issue with bulking up calories. Her thing was that she didn't like to eat a lot of food because she had no appetite.

DD1 has gone down hill a bit lately. Weight is ok, but she's sleeping whenever she can in the day and not motivated to do anything. She's also become paranoid about being watched by strangers and some other stuff. The psychiatrist thinks it's a way of expressing her general anxiety and low mood. So we've increased her fluoxetine to 30mg per day, but if that doesn't help, we'll reduce the fluoxetine back down, then switch to sertraline.

The first few months as parents you react with instinct and necessity. One families methods can lead to success and the same method can be detrimental to others. The trust comes into its own if your child doesn’t make a recovery quickly, in the long term and as they approach adulthood the adding of cream, fat and sugars becomes more difficult and leaves them with a false impression of what is needed to maintain and if caught a break in trust with one they need to trust the most. We as a family had to compromise on foods, DD is a vegan now and still has lots of red list food but for her it was the only way to get her to a healthy weight. You do what you have to do in lots of respects and then heal any damage done after. luckily I was never caught in the early stages and stopped when DD accepted she needed to restore.

Hi all, I hope I can join here. I am typically v bad and keeping on long running threads! My dd15 An since Nov 2020. Self harm and suicidal ideation. She was recovering weight until a pretty dramatic suicide attempt in Oct involving police/ambulance in a public place. Admitted to a tier 4 unit with no support for ED. Back home (but still officially an inpatient) because she eats better with us. However since Christmas it is getting worse and now this week is fluid restricting. Last 2 days about 300calories and about 400ml of fluid. She is v weak and wondering if we should go to A&E. she has a medical appt tomorrow afternoon but I won’t be able to go to that so she won’t have blood drawn.

Any advice?

Yes to a&e Imip, definitely take her.

Sorry @imip I'm not particularly experienced, but I would say A&E would be needed if she is weak and restricting fluids, she may need a drip to rehydrate her. Would she drink dioralyte? It really helped my dd when she would only drink fluids.

@myrtleWilson your tip about ice really helped dd the on Friday when she was very stressed. Thanks so much for sharing that

The calories/trust issue is such a dilemma and as pp have said so dependent on each families dynamic. We are still far from the point of being able to hide anything in dd current meagre rations.

Less than 500 cal for two days = A&E. Sorry it's so hard.

Thank-you. We took her to a&e (also on the advice of her inpatient unit that she is actually not an staying at - what A waste of money!).

She had one cup of water ad then we left. She is only eating a small biwl if Cheerios per day 29gm exactly.

If they didn't admit her go back imip. That's not enough to survive on.

Poor you imip, it sounds like you're being let down. Agree with everyone else that you need to go back to A&E.

Re. hiding calories in food, completely agree with what's been said here that it's a very personal thing and what works for one family can be a disaster for another. I'm incredibly envious when I hear of kids eating 800 calorie pancakes as that would be so much more efficient than the less calorie-dense route we're taking, but you do what you can.

Afternoon, May I join please?
I’m not sure my DD3 (12) has an ED or not. I can’t get a GP appointment so have one booked the nurse on Friday. The receptionist was adamant that the nurse can refer. If so, how long does it take to get an assessment please? Also any tips on how to persuade DD that we need to at least assess.
I think she has ARFID she eats barely nothing, skips school lunch (including when it was packed). Has literally 2-3 mouthfuls of whatever at bfast and same at dinner. Has a few moams or a strawberry pencil but always says she’s not hungry or is full.
She does dance/gymnastics every evening for 2 hours. Weighs (I think) 28/30kg and is 140cm tall. She doesn’t talk about her body so I’ve no idea what her thought processes are but I am concerned.

Hi complex you definitely sound right to be worried. How many calories do you think she's getting a day? An ED service will likely suggest stopping all physical activity and implementing 3 meals plus 3 snacks a day.

If she doesn't eat at school she may need to be kept at home until established.

The nurse needs to check her bloods, bp, pulse, height, weight and do an ecg.

@ComplexNeeds

Afternoon, May I join please? I’m not sure my DD3 (12) has an ED or not. I can’t get a GP appointment so have one booked the nurse on Friday. The receptionist was adamant that the nurse can refer. If so, how long does it take to get an assessment please? Also any tips on how to persuade DD that we need to at least assess. I think she has ARFID she eats barely nothing, skips school lunch (including when it was packed). Has literally 2-3 mouthfuls of whatever at bfast and same at dinner. Has a few moams or a strawberry pencil but always says she’s not hungry or is full. She does dance/gymnastics every evening for 2 hours. Weighs (I think) 28/30kg and is 140cm tall. She doesn’t talk about her body so I’ve no idea what her thought processes are but I am concerned.

Hi @ComplexNeeds your DD is very underweight, although I think you have realised this? If she is almost 13, she's about 81% weight for height (WFH). If she's just 12 she's about 85% WFH. That's using 30kg. If she is actually 28kg she's between 76-78% WFH dependent on how close she is to 13.

Has she been losing weight rapidly, do you think, or just not eating enough to compensate for the level of exercise?