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?

Hi everyone, hope you're all okay and Christmas Day wasn't too stressful.

Mixed bag here really, Christmas Day was nice and dd loved all her presents but it was very noticeable how she couldn't just help herself to a Christmas chocolate. That said the positives were she ate her Christmas dinner and had homemade tiramisu for pudding, she also had a glass of Prosecco and seemed to enjoy it!

We had a Boxing Day walk at the beach Ystd and I had to threaten turning around to get dd to finish her lunch which she grumbled about but then did eat it (well enough of it to satisfy me!!)

We're back home now after being at my mums since last Thursday and I can see dd has relaxed a bit. Think she finds being away from home really stressful.

Hope you're all doing okay?

That's sounds great, @Girliefriendlikespuppies. DD1 did ok. Lots of comments about being fat/not needing much food, but generally ate ok. Presents are really hard to find for her that suit her learning disabilities but don't completely baby her. The biggest hit was a National Geographic archaeology kit. A block of sand with hidden gemstones in it. She loves it! DDs 2&3 wanted to join in, so much so that they happily cleaned up the stones as DD1 excavated them. They've all used gift vouchers on a set each. Totally unexpected and it's the only thing, since getting ill, that DD1 has spent more than 5 minutes doing, other than her tablet.

My dd loves those kits lougle she gets one every year and it's always a favourite gift. This year she didn't actually ask for one for the first time but I bought her one anyway and she still loved it 😁

Hello all. I have been lurking on this thread for the past two months. You are all so incredibly brave and strong.
My DD (16) started restricting her eating 2 months ago. She has lost 2 stone in that time and is now 7 stone. I have tried everything I could think of myself to help her and I have failed. I’ve referred her to CAHMS and we have her first GP appointment tomorrow.
I’m terrified I’m going to loose my baby girl to this.
Is there anything I should be asking the GP specifically for tomorrow?

Hello @Maryfloppins - welcome, the last couple of months just have felt like a whirlwind for you. I hope you have support - remember the old adage, you can't pour from an empty cup....

In terms of GP appointment, aside from getting her observations done, I'd be asking the GO to expedite the CAMHS referral you've already made. Ask about whether your daughter's restrictions and rapid weight loss may mean she's reached criteria around "re-feeding syndrome" if she has that will trigger a hospital admission for supported refeeding (the concern bring if food is not introduced under medical pathway, ongoing potentially devastating damage could be done to your daughters body.

Beyond that, I'd ask about ongoing support the GP can offer whilst you're waiting for camhs assessment.

In camhs they use a family based therapy model (Google Maudsley fbt) essentially, you follow a meal plan of 3 meals and 3 snacks and the parent is in control. As you've been on the thread a little while you'll have seen posts that include the difficulty of doing this, potential kick backs from the eating disorder via your Dd in form of aggression or self harm, but hopefully you've also seen posts giving each other ideas and tips.

Camhs services/interventions do appear to vary but two points to note - my feeling was camhs say do x and come back and tell us how x is going (x being for example the 3x3) a bit like a surgeon saying try taking out their appendix and let us know how it's going... so you have to also be ready to stand up and push on doors until they are opened for you.

I think at the top of this thread we created a list of helpful resources so do have a look but otherwise tell us a little more about what's going on (if you're ready to)

Typos and autocorrects galore but hopefully the gist is there!

Hi Mary you need to make sure your dds physical obs are done so bp, bloods and an ecg are urgently needed. Severe food restriction can lead to some very scary physical health problems.

How many calories a day is. she getting at the moment? If less than 500 I'd bypass the GP and go straight to A&e.

If you're on fb join the EDSUK fb page, there's lots of useful resources on that page especially on FBT which is the main treatment for restrictive EDs. The basic premise for FBT is that you take full control over all food related decisions, your dd eats what you give her and you use whatever leverage it takes to get her to eat it. Your dd needs 3 meals a day and 3 snacks and you're aiming for around 3000 calories a day for decent weight gain.

It is a full time job, your dd will need to come out of school/college and will need someone with her 24/7. She probably will kick off, scream, shout, tell you she hates you, break things, threaten suicide, try and climb out of windows and generally behave in very shocking ways. You remain calm, consistent and persistent. Food is medicine- she has to eat it.

Just had a depressing conversation with dd, she hates her body, wants to die but is scared of not knowing what happens when you die, she likes having an ED as it's apparently pretty cool to have one these days and doesn't understand why anyone would not want an ED. Also the only thing that matters is what you look like and if you're not thin and pretty you might as well not exist.

Ffs, I honestly can't see how she's going to recover mentally when it's so entrenched.

She also talked about recently feeling more detached from reality, she said she feels like she's is in a dream. Im wondering if that's a fall out from being more stressed over Christmas, her anxiety levels have been high. Anyone else's child described feeling like that?

Hi @Maryfloppins how did you get on at the GPs?

Sorry to hear that @Girliefriendlikespuppies- has DD explored any of these thoughts in her therapy sessions - they sound to me very much related to her self esteem or perhaps her need to be 'ahead of the curve'? DD definitely saw a competitive element in her ED - if she thought other people were more clever, more popular etc then she held onto the thought that she could out beat them at not eating (not a long term sustainable strategy obs... )

The 'dream' also sounds a bit like when my DD went (and still does a bit) into a dissociative state - I think for us this is where the ED team became less useful and we needed more focused support on her underlying mental health issues - unpicking why, in case of DD, she feels sadness is a weakness... the adults MH team she is now attached to I think offers a better way out than being with the ED team as DD felt that being in the ED team just kept her with an ED if that makes sense?

What therapy is your DD having at the moment and could you push for more intensive support?

Thank you for your kind words. The GP was lovely, did obs, sent her gift a blood test snd is contacting the specialist day unit regarding a referral.

Appointment again in two weeks for follow up.
She’s eating approx 700 Kcal at a guess .
She seemed relieved after the GP visit, possibly pleased about the referral which makes no sense to me.
She ate a small meal after the appointment though which was reassuring.

Hi all, I haven't had chance to read the whole thread. But I feel like I need to talk to parents in a similar position. I've just had a phone call from my dd doctor with the results from her ecg. They've found something, and the doctor explained briefly what it was but I was in shock so I couldn't take it on or understand what she did say. All I know is dd is getting referred to a paediatric Dr.

My dd back ground is she is 16, a vegetarian (wants to be vegan). She has severe emetaphobia, which has resulted in OCD and anxiety which she has been referred to calms, had group therapy for the ocd and then discharged. I repeatedly told the Dr at the time of referral that I was worried about her eating and weight but they dismissed this as not the main issue.

This was about 2 years ago, fast forward to now and a couple of weeks ago I caught site of a young girl walking towards me and I just saw a pair of terribly thin legs, I looked up and it was my dd. I phoned the drs that day we've had blood tests which showed iron level of 3, and bmi of 1st percentile. She weighs 35kg and is 151 cm tall.

Now we have the heart issue, which I haven't told her about. She heard me on the phone and I said they didn't mention the ecg results.

I feel lost, her dad isn't in the picture so it's just me.

Will she be ok? I feel so angry with her which I know is so unhelpful but when I try to talk to her about it she engages with the conversation with me but she has the attitude that she is much more aware of the rights and wrongs of eating, she is very academic and is predicted 9's in her science gcse so any input I give her is met with an agreement but I know she's just placating me and feels she knows best.

Myrtle** yes dissociative state sounds right, she isn't getting much therapy at the moment 😕 nothing from the ED team and a fortnightly CBT session which doesn't seem that helpful unfortunately. The ED team want to discharge her which I'm in two kind about, on one hand they don't offer anything useful on the other hand it's useful to know they're there if I need them!!

Her CBT will also stop soon as the therapist is leaving the team 😩 I'm not sure where to go for help next, would it be the normal Camhs team?

Mary that's good the Dr listened and dd took it on board. Do you know her current weight? Working out her weight for height will give some indication of what activity she should be doing.

I wouldn't wait to be seen by Camhs, you need to start FBT today, the more weight she loses the harder the recovery will be.

Cross posted with you Zing!

Sorry you find yourself here, that weight sounds v v low to me, have you worked out her wfh? I suspect she should be on bedrest... everything I posted for Mary Ystd at 20.23 applies to you as well. If they're worried about her heart and she's still restricting her food I'd take her straight to a&e, she needs monitoring and the refeeding process should be done in a clinical environment due to the risk of refeeding syndrome.

I'm on my own with my dd as well so I know how scary and overwhelming it all is.

What is wfh please?

I was tempted to keep her from going back to school as I know when she's at school her ocd as well as her food restrictions will stop her eating. She's scared of germs as well as food so won't eat in an environment like school. She has to be able to prepare her own food to make sure it's done hygienically.

I don't know what happens now, or how long it will take for an appointment with the pediatrician.

@Zingzow weight for height is the percentage of how heavy your DD is compared to other girls of her age and height. Given the details you have given, if she is just 16, her WFH is 75% and if she's almost 17, her WFH is 73%. Under 70% is very high risk and 73-75% is still very, very, low. DD1 was on bed rest and wheelchair until she was 80%.

Ok, thank you. She turned 16 a couple of weeks ago so 75%.

At the moment she's not going anywhere and has spent most of the Christmas holidays watching films with me so hasn't done any physical activities. She's been really clingy to be honest. I think the drs appointment may have been a bit of a wake up call

Zing at that wfh you definitely need to pull her from school and given the concerns re her heart I'd take her to a&e. She needs to start the refeeding process, I appreciate what you're saying about the other anxiety issues but some of those may be linked to the anorexia, a starved brain can't function properly and anxiety and ocd are common in a starvation state.

I still in a bit of shock really. Would the Dr not have asked me to take her to a&e if they thought she was in danger? Would the hospital admit her if I took her in?

I can definitely keep her off school when it starts back as this should act as an incentive as she's desperate to do well in her gcse's.

No Drs unfortunately have v little training in EDs, I'm hoping Betty or dark might be about as they've been in a similar situation quite recently and their dds ended up in hospital.

If you Google the junior marsipan checklist this will give you a starting point, I'd also urge you to join the FB group as they have an a&e file as well as files on the principles of FBT which you need to read.

@Zingzow GPs don't know much, tbh. DD1 was 68% WFH and my GP was going to 'have a chat with the dietician'. I phoned up and said 'her heart rate is 144 when she stands, is that ok?' and she was then sent straight to the hospital and admitted for 9 days.

The big issue is that when you start refeeding a starved person, their electrolytes can go seriously out of normal values and it's the electrolytes that keep the heart beating.

Sorry posting while walking.

That's why she needs hospital review - her blood may be ok today, but when you start insisting on food, that's when it needs careful monitoring.

Thank you for all your advice so far, I'm trying to read as much as I can. How do I find the Facebook group?

It's the this one zing

Thank you xx