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?

@Lougle have you got an app for wfh?

[quote Lougle]@Reallyimeanreally2022 74-75% WFH, depending on which end of 17 she is.[/quote]
Thank you
And I’m sorry
What does it really mean?

She almost 18

@NCTDN yes, you have to have unknown app sources enabled on your phone because it's not on play store. <a class="break-all" href="https://www.google.com/url?sa=t&source=web&rct=j&url=m.apkpure.com/instant-weight-for-height/weightforheight.geneticdigital.co.uk.instantweightforheight&ved=2ahUKEwiY8YqizafzAhUNa8AKHX4sCsoQFnoECAUQAQ&usg=AOvVaw3CHQiZtWvqfCaLsvXLqi6K" rel="nofollow" target="_blank">Instant weight for height APK

@Reallyimeanreally2022 'weight for height' tells you how your child's weight compares to the average weight of a child of the same sex, age and height. 100% weight for height means that your child's weight is average (50th percentile).

It's not a perfect system by any means (Google Eva Musby weight for height for lots of information on that), so generally it's recommended that you consider what your child was like before they had an ED. If they were always 'big' for their age, they might need to go well over 100% WFH to be healthy. If they have always been slight, then they may be healthy below 100% WFH.

CAMHS tend to aim for 95% WFH, but many people with children who have recovered from their ED say they only saw real breakthrough at 110-120% WFH. Also, if the ED coincides with the start of periods, then you have to consider that the pre-ED weight was before maturity, so more weight will be needed.

DD1 is 98-100% WFH (loss of appetite will have brought her down slightly) and tonight we had the first truly difficult meal in a while. It took me right back to 7 months ago when she was admitted to hospital.

@Reallyimeanreally2022 if she's almost 18 then she's around 74% WFH.

@Lougle this is the problem I’m having, they are judging Dd on wfh alone or that how it seems.
I’ve been through the marsipan checklist and she’s in the green.

Just to say sertraline killed my appetite for a few weeks at first, but it did come back and is normal again.

Mam sorry you've had to find us, your son sounds really v unwell. Have they checked his bloods and heart? The problem with purging specifically is it can throw his electrolytes out which can be v dangerous especially to his heart.

I think I'd be tempted to take him to a&e tbh especially if this has been going on a while. My dd never went below 90% wfh but her heart was really struggling at that point and periods had stopped. Everyone's healthy weight is completely individual.

Id also start bracing yourself for FBT which is what the ED team will suggest. It means you take full control of all his meals and snacks (3 meals 3 snacks) all non negotiable and use whatever leverage needed to get him to eat. As he purges you will have to be v strict about him only using the bathroom before food and constantly supervising afterwards (you'll probably need to take doors off hinges.) To get started he'll need to be at home and have someone with him 24/7.

For all newbies there is a fb page that a few of us are on EDSUK, there's some useful files on FBT on there.

Mam also if you have scales in the house either throw them away or hide them. My dd said equally ludicrous things about wanting to get to 8 stone and was obsessively weighing herself every day. Throwing the scales away and blind weighing her has been life saving.

Thanks so much
So the wfh of 74% would my sister be able to get support for her daughter?
Or not serious enough?

@Girliefriendlikespuppies thank you so much for the response. That's so helpful. I don't know what to do about school, do I keep him off to monitor eating and how long do I keep him off for? Had another sleepless night worrying about him

@Bettybarkalot123 I think when WFH gets low it's a worry in itself, but having a higher WFH can lull you into a false security.

@Reallyimeanreally2022 74% is very low. DD1 was in hospital for 9 days at 68%, then on bed rest and a wheelchair on discharge and until 80% WFH. No school. No exercise. Just eating, toilet, sleeping, etc.

@Mamazita I really wouldn't be happy to wait 2 weeks for an initial appointment. At the very least you need to ask your GP surgery to take heart rate, blood pressure (lying and standing) and do a blood test to check his electrolyte levels. But your better plan would be to attend A&E and tell them that he hasn't eaten without purging for x number of days and he's losing weight rapidly.

74% wfh is v low, given how ill my dd was at 90% wfh I can only imagine she'd be dead at 74% 😕

Goodness she’s no where close to that
College (good grades), run 4x a week, busy social life.

She does eat. I suspect it is orthorexia.

Incredibly healthily. No fat at all. She has porridge with water at breakfast, a LOT of fruit, salad with grilled chicken at lunch, more fruit, a fat free yoghurt and then dinner is huge portion of lentil stew and the most enormous pile of steamed veg I’ve ever seen

It’s very odd and we are at a loss

Really that diet is not incredibly healthy to my mind. "Healthy" has been hijacked to have another meaning. My Dd was at college, good social life etc etc but was admitted to hospital on her first CAMHS appointment she was that ill. Your sister should insist on getting support.

@Reallyimeanreally2022 that's how dd started, with her interpreted view of a healthy diet.
On a positive note for those that have joined recently, you seem to say your child has told you they have a problem. That's a huge step. DD was in total denial until hospital.

My daughter is still often in denial, it's a real hallmark of anorexia this refusal to see you have a problem. The tiny chinks of insight she's now showing are giving me so much more optimism as it's almost impossible to 'cure' someone if they don't think they need curing.

@Reallyimeanreally2022 agree with NCTDN about 'healthy' foods and lifestyle. This website is good on this www.notplantbased.com. If your niece drinks non dairy milks, that's almost a sure sign. Also will keep an eye on the sertraline though one would hope that the psychiatrist specialising in ED would know what he's doing. So far we've had 10 days of eating the meal plan, weight gain and no arguments which is miraculous (but probably coincidental).

"It’s very odd and we are at a loss"

It's not odd at all. She's basically having water and sugar (fruit), water and indigestible fibre (veg), a small amount of carbs (porridge and lentils), with a tiny bit of protein (chicken). It doesn't matter how much you eat if it's not supplying you with the fuel you need to live life and maintain your weight.

Mam I second everything Lougle said, do not wait two weeks and insist on help now, definitely take him to a&e if eating less than 500 cals a day.

That healthy diet is awful 😞 our bodies need fats and calories to function. Especially our brains which should be coated in fat to function normally. The problem with anorexia is the body takes precedence over the brain when there is a calorie deficit (the body is in survival mode so focuses on essential internal organs) which is why sufferers lose so much cognition.

MRI scans of a normal brain vs an anorexic brain are shocking, the anorexic brain literally has big black spaces where brain tissue should be!!

Food is medicine, high fat foods are the best medicine, weight gain is essential to recovery.

Ignore all the ED thoughts and behaviours - their brain is not working properly and food is the only thing that can save them.

In other news here, dd ate her normal amount for breakfast and hasn't woken up with a headache for the first time this week!! I'm crossing everything that she's now firmly on road to recovery from wherever lurgy she's had this week.

That's great news, @Girliefriendlikespuppies. DD1 asked for toast this morning, to my relief.

@Mamazita I would get seen sooner too. In my (very recent) experience once they see disordered eating patterns and weight loss they take action very quickly. I’m very new to all of this and completely at sea with most of it but I would definitely not wait two weeks for an appointment.

Some bad news here in that the ED nurse called me again yesterday, they’d had a meeting about dds treatment plan (that they were supposed to have had before ringing me on Thursday but hadn’t) and they’re now saying no school and bed rest. Dd is devastated and I’m not sure if it is the right decision for her. We have an appointment on Monday so I’m hoping to discuss it further then. Obviously her weight is very low and her health has to take priority but she’s now saying what’s the point in eating if she isn’t allowed to go to school and they’re making her fail her GCSEs and making it so that school will no longer let her be a head prefect.

@Girliefriendlikespuppies I’m glad your dd seems to be getting over her virus.

Can some of you who are further through this give me an idea of what your dc are eating in a day please? Although my dd has done well at eating what I give her so far there are many things she is refusing to touch and I’m not sure how to get beyond that. So for breakfast she’s been having a crumpet with butter (I butter it twice, once when very hot so it soaks in then once in top). She won’t touch toast or cereal though. For lunch she’ll eat wraps or soft pittas but not normal bread. For puddings she’ll eat rice pudding/custard/ice cream/coconut chocolate pots etc but won’t touch yoghurt…

Hi @Moomarre - my daughter is currently 81% wfh, she’s not in school, our camhs are saying 85% wfh before a return will be considered and then it would be part time! We’re not at all happy with this and feel she should go back within the next week or so if she continues to gain. It’s her gcse year and she thrives in school. She’s very depressed being at home each day and spends all day doing the work they’re sending her.

Her average eating day goes like this -

Breakfast- 2 weetabix, 200ml of whole oat milk, a large banana sliced on top, a tablespoon of chia seeds, 300ml of orange juice. Yesterday she asked for a piece of toast with honey too (no butter mind you)
Snack - nesquik chocolate milkshake and a packet of hula hoops. Sometimes she’ll have a smoothie
Lunch - two poached eggs, avocado on toast, baked beans. Pudding strawberries and oat yogurt. Water to drink
Sometimes she will have soup and a sandwich or a hummus wrap
Pm snack - alpen bar and a drink of orange juice
Tea - quorn chilli and rice, with corn on the cob and I managed to get her to eat some grated cheese but not much
Evening snack - always without fail 300ml of hot chocolate made with oat milk or cows milk and a fibre one birthday cake bar or a small
Scotch pancake with jam.
She will eat all of this.

She’s supposed to have 2500 cal a day but I work out she’s actually having about 2100. Her snacks are about 200 cals and they should be 250 and her pudding after tea is also not enough.
I have a call with the dietitian on Monday to see how we can improve things. She is gaining weight but slowly.

@Bettybarkalot123

Hi *@Moomarre* - my daughter is currently 81% wfh, she’s not in school, our camhs are saying 85% wfh before a return will be considered and then it would be part time! We’re not at all happy with this and feel she should go back within the next week or so if she continues to gain. It’s her gcse year and she thrives in school. She’s very depressed being at home each day and spends all day doing the work they’re sending her.

Her average eating day goes like this -

Breakfast- 2 weetabix, 200ml of whole oat milk, a large banana sliced on top, a tablespoon of chia seeds, 300ml of orange juice. Yesterday she asked for a piece of toast with honey too (no butter mind you)
Snack - nesquik chocolate milkshake and a packet of hula hoops. Sometimes she’ll have a smoothie
Lunch - two poached eggs, avocado on toast, baked beans. Pudding strawberries and oat yogurt. Water to drink
Sometimes she will have soup and a sandwich or a hummus wrap
Pm snack - alpen bar and a drink of orange juice
Tea - quorn chilli and rice, with corn on the cob and I managed to get her to eat some grated cheese but not much
Evening snack - always without fail 300ml of hot chocolate made with oat milk or cows milk and a fibre one birthday cake bar or a small
Scotch pancake with jam.
She will eat all of this.

She’s supposed to have 2500 cal a day but I work out she’s actually having about 2100. Her snacks are about 200 cals and they should be 250 and her pudding after tea is also not enough.
I have a call with the dietitian on Monday to see how we can improve things. She is gaining weight but slowly.

What is her movement / activity like?

She walks the dog for 20/30 mins most days and she does some activity at a club on a Saturday morning.. that’s it!