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

Hi All Its been ages since my last post. My DD (14) is going fairly well, she was maintaining at 85%, but now she has started growing again and her WFH is falling due to height increase.

She's so scared of getting very ill again (that is a positive) but she's equally scared of eating any more than her usual meal plan.

Compounded by the fact that she was to go Veggie which means her portions need to increase to get the same calorie intake.

We are trying though and we're determined we will get to 90% wfh which will be enough to make sure she stays healthy and gets all her growth in during this vital time.

Nothing is easy with this illness.

@Valleyofthedollymix @Girliefriendlikespuppies @myrtleWilson @NCTDN @Peanut82
I just head there is a special today on LBC radio Here focused on children, teen and young adults mental health, the impact of lockdowns and the lack of help available.
I thought you all might want to listen in or even call in to give your opinions. People need to know what our children are going through and how tough it is to get help for them.
Its sometime between now and 4pm

@Vespanest

I have name changed for this and this is in no way a criticism and I am fully aware you do what you need to do and you are all inspirational. I am involved with ED support and also have a DD with anorexia. This is a wonderful place where you are supporting each other but it is also an open forum that those with anorexia can read. Anorexia wants your children (and adults) not to trust those trying to help so openly talking about deceiving in regards to food is feeding the anorexia for those who search the internet for any information that gives power to the anorexia. Again this is not a criticism it’s just to be mindful of the dangers that this will not just be read by care givers and for someone with an ED having trust can be a make or break in recovery.

This. I would also like to add that research into the aetiology of eating disorders overwhelmingly suggests that they are biopsychosocial in origin. FBT is an effective and evidence-based treatment, but I have noticed a tendency among some of its proponents to emphasise the 'bio' to the exclusion of the psychological and social. I think that can be a means of self-reassurance - if it's all biological it doesn't matter if you deceive your child, you don't have to worry about psychological elements of refeeding, it all becomes simpler. But I'm friends with many women who were left traumatised into adulthood by this approach, and who don't feel able to be open with their parents. A lot of them continue to struggle with ED in a more hidden form (bulimia is depressingly common) and the sad thing is their parents think they're all fine now and the ED was left behind in the teenage years. If you lie to your kids, there's a very real risk they end up lying to you and feeling unable to share their worries. I understand it's done from a place of love, but if you spend any amount of time among adult ED sufferers, you'll find sadly unintended consequences.

Tbf I've never lied to dd, she eats what I give her and has never questioned it. She is happily working her way through a tolberone now so 🤷‍♀️

Sotired nice to 'see' you, glad to hear your dd is doing okay. Do you mean your dd wants to go veggie? Personally that would be a strong no if it were my dd unless she was in strong recovery and had been for a long time.

I've managed to hurt my wrist and ended up in a&e this morning, it's not broken but all strapped up and I can't use it. Makes cooking a bit tricky 😩 why is nothing ever easy?!

Oh no girlie what a blooming nightmare! There’s always something isn’t there? Great to hear your DD is tucking into a tobelerone. Sure I’ve spelt that wrong.
Not too sure about my DD - we’ve had 5 days off her ADHD meds (appetite suppressants) and I think they could make a difference. It’s not very clear cut though. Back on them yesterday and today and appetite definitely worse. We are back at ED clinic on Thursday and I’m not sure whether we should carry on with or without the adhd meds. Whilst she’s home she can do without them but back at school she’ll not manage.

ComplexNeeds we have the same dilemma with ADHD meds. DD is weight restored now and ADHD now becoming the dominant problem but consultant unwilling to put her back on them due to hunger suppression. I was wondering if there were any alternative meds without the hunger side effects - has anyone mentioned anything to you at all about this?

@EdwardTheBlueEngine the first line med for adhd is methylphenidate which is contraindicated with a history of anorexia. So that’s probably why your Dr isn’t prescribing. There are other stimulants but I think they all have the side effect of suppressing appetite and/or weight loss. You could ask about non stimulants to help her adhd. The ADDitude website is useful btw. My DD has successfully been on medikinet xl for around a year. Her appetite has dwindled but because she’s fussy, tiny and skinny we didn’t really notice. She then started concerta xl at Xmas to give her a longer day (12 hour release rather than 8) and that’s when I really noticed her skipping lunches and having just one bite dinners, cutting her food up really small & pushing it around her plate, etc etc. We stopped concerta xl immediately and went right back to square one with immediate release methylphenidate (4hrs) thinking it’d wear off by lunch ready to eat and a second dose after lunch. However, just a half dose of immediate is putting her off food. I’m unsure if this is just a placebo effect or true. It’s frustrating as she needs to eat but also needs the adhd meds. It’s all blooming trial and error. My eldest also has adhd and she’s been trialling for 2 years now as so many options increase her anxiety.
My DD has just written a pros and cons of stopping ADHD meds and has said the pros outweigh the cons - she’ll eat better, gain weight and be able to return to school & sport. The cons list was longer but she feels the pros are ‘bigger’ - I think the main pro (for her) is doing her sport. That sounds positive doesn’t it?

@ComplexNeeds really positive and great she can think so rationally about it all!

Thanks for the detailed reply, it sounds as if there aren't any options then for meds that don't suppress appetite, as I thought. DD has been on quick release methylphenidate for years and it always affected appetite. Now she is really struggling without it, feels a failure etc which is feeding the ED. We seem to be in a endless cycle here! Crossing fingers your dd manages ok without the meds....

@ComplexNeeds and @EdwardTheBlueEngine just coming on quickly to say there are alternatives to stimulant medication for ADHD. There is a drug called Intuniv (Guanfacine) and also Strattera (Atomoxetine). They are both non-stimulant and work in a different way to Methylphenidate and lisdexamphetamine in that you have to take them every day and they take a while to start working. Stimulant meds start working immediately and leave the blood stream quickly so are more flexible if you don’t want to take them every day. Intuniv actually increases appetite so is a good solution for patients who cannot tolerate the stimulant meds. However they are not quite as effective for concentration as the stimulant kind so they always try those first. You could also try mixing the two, say taking a much smaller dose of methylphenidate alongside the Intuniv. This is what our consultant has suggested for us for the future if my son ever needs to up his dosage. Might be worth mentioning to your doctors?

Hello everyone, it’s been a while since I’ve been on! I will come back with an update. Just wanted to quickly respond about the ADHD meds and appetite.

Thank you @Rollergirl11 I do think if we can sort out the adhd meds it’ll shine a light on any ED. But the fact she’s thinking gaining weight is better than being able to focus seems to suggest that she’s not got the typical AN thoughts.

@Complexneeds I absolutely agree. I think the meds are totally muddying the waters for you. Unfortunately I think your DD needs a period off the meds so you can monitor her eating without them being a factor.

Having one child with ADHD and reduced appetite through meds and the other child with Anorexia, they both experience issues around food but I can clearly see the cause. My DS’s reduced appetite is purely because of the meds as he is ravenous when not on them. It is a physical response. With DD it is all psychological.

With an ED the first few months of refeeding are really hard because they no longer experience hunger cues anymore and they have pain, discomfort and bloating when they start eating sufficiently again. They have to eat through all the discomfort and eventually they start to listen to their body and feel hungry again. ADHD medication would totally interfere with that process and I think it would be impossible to start refeeding.

Thanks @Rollergirl11 yes I think we do the next few days without meds. We are back at the clinic on Thursday so I’m hopeful they’ll have ideas.

Thanks @Rollergirl11 I am going to be straight onto the consultant to ask about those meds! Not sure why they have never been suggested to us....

I’ve been recording DDs food on MFP (best I can) and on the days she’s not had the meds she’s had 1000 calories more. That’s just regular normal food with no additions etc. as per the clinics instructions not to add. Interesting isn’t it?

NC for this as I have been following this thread as someone who has recovered (genuinely) from anorexia (12 years ago).

Firstly - you are all doing an amazing job... what you are going through as mothers, wives, partners, daughters, friends (because you have a life outside of caring for your loved one) is incredibly tough.

However, I did feel compelled to write because I can, with certainty, say that it is not as simple as just eating more and it disappears for every child. The previous poster was correct about the psychology side. Treatment focuses on weight to begin with because it is true that it is hard for someone to focus when starved as their brain is not functioning optimally. It is also because they are at serious physical risk. BUT - and this is crucial - for many sufferers, the illness is triggered by a trauma / worry / inherent feeling of not feeling good enough. I was in inpatient for 6 months and we all had different traumas. There are, of course, like some of your DDs who don't, but it did make me despair to see that it was held up as the only option - just eat and recover. Please do not believe that because that works for one child, it will work for another. That is a fast track to relapse if your DD (or DS) has underlying psychological issues.

I say this from someone who has felt the immense isolation, pain and suffering of anorexia. I was incredibly fortunate that, after relapsing, the underlying trauma was identified and I received the correct support. I would urge you to all show compassion to your DDs and be inquisitive... yes they are ill, but they are still human beings who are suffering. They need to be listened to (when thinking rationally and not having an ED fuelled melt down) and they need to learn to trust. Ultimately, many got unwell because they felt they had to turn to anorexia to numb whatever pain they were in.

I would recommend that those of you with older teens purchase a copy of the MANTRA book - it will help you and your DDs.

NC. Could anyone give some advice on how to get more help for teen who has been struggling with eating for 2 years? He is 78%wfh and eats only very small portions. Saw a dietician before Christmas but now signed off. In January he fainted. Had an appointment with GP yesterday, who just said he is fine - but didn't check BP or really talk to him. We are waiting for CAMHS appointment but don't know when that is going to happen. Can anyone offer any advice? I really wish someone was looking out for him.

@Vespanest that is very timely, I hadn't considered that my DD might find this thread.

Things are going backwards here.500g loss on top of last week's 100g loss has tipped us the wrong side of 95% WFH. We have stopped activity for now though we are going skiing next week, no idea how to handle it.

I packed my bag and left on Sunday night, I just couldn't take any more. I shoved DD out of my way and she is now telling all and sundry I pushed her into a wall. DH confirms I didn't but I feel so terrible about it. I have apologised to her and evryone. Meantime, on Friday she punched and kicked DH and nearly tore my nail off trying to grab her school bag. No apologies there despite me gently suggesting to her that she should. Double standards eh?

I hate my life, I've just had enough. I can't see an end to this wicked illness. She's started making herself sick and we are with her as much as we can be to supervise, but she's at school so can't be there all day. I can see the next step is stopping school and OMG the fallout from that will be horrific.

We're already under social services. I am so ashamed I pushed her - maybe they'll take both my girls off me. It could be for the best, perhaps someone else can look after them better than I obviously can.

Hi everyone, esp. @Girliefriendlikespuppies, @Complexneeds, @myrtleWilson and others who were kind enough to be supported when dd (15) was diagnosed a couple of weeks ago. Just updating - so much has happened since then. She couldn't cope with the meal plan over the weekend, so was admitted to hospital last Monday. Still couldn't eat and then on Tuesday night her heart rate dropped precipitously. Moved to nasal-gastric tube feeding, which was a great relief as two days later her heart rate was normal and bloods have now stabilised. After eating all her meals and snacks yesterday, her tube was removed after breakfast today. She then refused lunch and the shake alternative! It felt like the ED had done just enough to get the tube out.... She has just eaten snack and consultant is generally pleased with her progress though and is supporting getting her home (to bed rest and meal plan) on Friday. I'm torn between really wanting her home, and worrying she will refuse to eat again. Apparently she can't be readmitted until her health is badly impacted again. What are other people's experiences? How did you handle things? And - if things do go well - how long did bed rest last, and how did the back to school transition go? Many thanks for any help you could give.

Hi Nan

At the hospital we were in they wouldn't discharge her until she could go 24 hours with normal eating (no tube). We knew if she ate less than 500 cals a day we would take her back to A and E (and did do this twice) and she can be admitted according to the Marsipan checklist - are you familiar with this? Bed rest in our case condinued until she hit 80% WFH then she could go back to school, but had to be taken there and back.

The moderators on the EDSUK Facebook Page are really hot on this stuff so might be an idea to ask them and join if you haven't already done so.

@DarkBlueEyes - that's really useful. Thanks. Don't know the Marsipan checklist, but have just googled. What's WFH?

@butterandcheese - not sure where you are but we self-referred to Young People's Advisory Service (Liverpool - but there may be something similar where you are). They couldn't offer us anything formal as we were on the waiting list for the ED clinic, but did tell us about a drop-in which provided a couple of useful sessions while we were waiting. This might be helpful: www.nhs.uk/Service-Search/other-services/Eating%20disorder%20support/LocationSearch/341

WFH is weight for height - it's a percentage based on child's weight relative to the average weight for someone their age and height. So for example if on the NHS calculator the 50th centile for a 15 year old of a certain height was 60 kilos and a child weighed 54, then their weight for height would be 90%.

@Valleyofthedollymix - Great. Thanks.

Hey everyone, just thought I’d come and say hello. Other than my posts in relation to ADHD yesterday I don’t think I’ve been on since before Christmas. Hope everyone is going okay and hello to all the new people. This really is the most supportive thread with heaps of excellent advice!

So DD is doing okay. She’s still hovering around 95% wfh. We are still doing 3 + 3 but she has leeway and a bit more flexibility when she’s out and about seeing friends and doesn’t necessarily want to have to eat a snack. She is eating a normal variety of foods, can eat out in restaurants (although it does make her nervous) and can manage McDonald’s, KFC and Dominos with friends on occasion. I wouldn’t say that she’s completely free eating but she’s definitely doing a lot lot better.

She did her GCSE mocks just before Christmas and really aced them. She is still suffering with high anxiety and is still taking 40mg of Fluoxetine to help with it. She has had some issues with her friendship group over the last few months which has really affected her confidence but things look to be more resolved on that front lately.

She is a lot more sociable again. She has quite a few gigs lined up for the next couple of months and has got her ticket for Reading festival at the end of the summer.

We went shopping for her prom dress last month and she’s found a dress that she really loves. I know she was very apprehensive about trying on loads of dresses but she was surprised how much she enjoyed it.

She has her 16th birthday coming up in April followed by her GCSE’s. I think she has come such a long way. This time last year she had secretly started to restrict during lockdown and her periods had stopped. It took us another couple of months to fully realise what was happening. She still has really bad body dysmorphia and hates the way she looks. She is having weekly therapy sessions to try and tackle her perfectionism and low self worth.

I am optimistic for the future. 🤞

Take care all you lovely ladies and look after yourselves!

@butterandcheese

NC. Could anyone give some advice on how to get more help for teen who has been struggling with eating for 2 years? He is 78%wfh and eats only very small portions. Saw a dietician before Christmas but now signed off. In January he fainted. Had an appointment with GP yesterday, who just said he is fine - but didn't check BP or really talk to him. We are waiting for CAMHS appointment but don't know when that is going to happen. Can anyone offer any advice? I really wish someone was looking out for him.

How much is he currently eating butter? Roughly how many calories a day? 78% wfh is low, is he at school?

You maybe able to self refer to an ED Camhs team, I would go back to the Gp and say you're not happy and insist they check bloods, ecg, bp and pulse.

I'd also start 3 meals plus 3 snacks a day and start packing as much in as possible.