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

Thanks @myrtleWilson I think our team may be similar, and we've met the dietician - I know there is a psychiatrist in the background somewhere as the support worker said she had spoken to them, but we haven't yet met them - from the advice given here, I think that is our next step. I've not heard of an IHT or similar and will ask; they did give us a few suggestions of other voluntary organisations providing support services at our first meeting but they all have very lengthy waiting lists.

Hi worried when I was a teen I had disordered eating related to anxiety. It was different to how dds ED presented as I didn't want to lose weight and didn't actively restrict food. I lost weight on a two week college trip abroad and the weight loss sent my anxiety through the roof.

What helped me was taking all the pressure off when I ate so making mealtimes as relaxed as possible (food on laps in front of the telly) and eating what I wanted when I did feel able to eat. My mum had no idea how to help me and it's frustrating to look back at how much I struggled and for so long (it took nearly 2 years) when all that was needed was to gain around a stone in weight!!

However as I said I had no interest in being thin and wanted to feel better so that might not be the right approach for your dd.

I've just found a video on my dds phone of a very thin woman giving an abs workout 🙄🙄🙄 when does this illness ever just fuck off?!!

Thanks @Lottsbiffandsmudge that makes a lot of sense about needing to get over 100% to recover even if they then lose a bit afterwards

So my dd has got an urgent assessment at the EDS tomorrow! Thank you for all your advice and help.
What should we expect from the appointment? Do I need to prepare or take anything?

@bringmethehumous we were so unprepared for our first meeting with the ED service. DD’s medical obs were taken and we met a psychiatrist who took lots of details about DD’s life and current situation. The process took two hours. Our DD was very sick - she was sent home with us on strict bed rest, visits to toilet only and no stairs. No school. They gave us instructions to provide three meals (two with desserts) and three snacks a day, with drinks such fruit juice and milk. Once the ED was exposed it kicked back and it was difficult / impossible to get DD to eat. We continued like this for two weeks and weight and heart rate fell. I don’t want to alarm you, but be prepared - it was really tough and traumatic for all of us. DD was admitted to hospital for 10 days refeeding which kick started her recovery.

@bringmethehumous Glad you got your appointment. Well done for pushing for your girl and hope she gets the support she needs xxx

How are you doing Nan?

Good luck at the appointment tomorrow bring it's possible they may want to admit your dd straight from the appointment. My dd came very close as her heart rate was very slow.

They will do all physical okay, take a detailed history and tell your dd she has to eat what you give which needs to be 3 meals plus 3 snacks a day....

Do not be surprised if your dd goes ballistic, my dd sobbed throughout and then wouldn't speak to me.

Thanks for you kind messages and information. DD just had her weight, height, vitals and bloods done this morning. They were checked by the senior clinician and they said she was ok to be at home. We were given an appointment for tomorrow am to do history etc. Interestingly they measured her as 4cm shorter than we had previously believed she was - also makes me much shorter as she towers over me and she is apparently my recorded height! Wouldn’t worry but that’s quite a difference for her BMI…
she didn’t make any fuss about going but was quietly furious and then had a massive meltdown smacking her head off the car window saying she’s abnormal and just wants to die on the way home.
I am sad that I feel disappointed she’s not being admitted to be fed when I should feel glad she’s well enough not to be.
I also feel hopeless about getting her to eat any more than she does at the moment as she is so determined not to.

Hi @Girliefriendlikespuppies. Hospital have decided DD will be in for some weeks. They want to avoid Tier 4 if possible, so will be keeping her in Alder Hey, but offering her DBT on the ward. She's getting some nutrition in via NG tube and (usually) 2 snacks a day, and noticeably calmer. Last night I was really sad for her as her friends were all posting pics of prom, but today she actually managed a few spoonfuls of Quorn curry. I was so proud of her! Trying not to get too excited, but it's been so long since she'd eat anything she doesn't know the exact composition of. It's been a very good day! How are you doing?
@bringmethehumous Good on you for getting her the appointment. She is in the system now, so you should start getting help. Maybe ask for her height to be checked again tomorrow? Mistakes do happen.

Hmm I'd double check the height bring it wouldn't be unheard of for either the measurer to get it wrong or for the child to some how manipulate the numbers. Also watch for things like water loading and putting weighted down clothes on before being weighed. If you aren't getting the food into her explain the concerns to staff and also do not be scared to put dd in the car and take her to a&e.

Nan yay for the eating the quorn mince, well done your dd ⭐️

We're plodding on, I'm v busy with work and getting ready for going on holiday next week but dd has nothing to do 🙁 Mood is very up and down.

I'm trying not to stress about going on holiday (Portugal) next week. I'm hoping a holiday will do us both some good...

@NanFlanders I am sorry your dd hasn’t been able to go to prom - that must have been so tough for you both. I am happy to hear she has eaten some quorn curry today - is she vegetarian?

@bringmethehumous Yes, she's been vegetarian for about 3-4 years, so I think it is prior to her illness. She has tried veganism, but I'm sure that was about restricting - and she needs calcium for her bones - so hospital are not allowing that.

Ah @NanFlanders sorry about prom - this illness is so damn isolating and really removes all the nice things in live from them. I hope she continues to make progress in hospital and you avoid T4.... sending love!

@NanFlanders I follow you on this thread and the amazing support that you give to your DD. I didn’t want to read and dash, but to let you know I and others are thinking of you both. I hope today goes well.

@D1ANA22 @myrtleWilson @Girliefriendlikespuppies - thanks so much. I always get so much inspiration, ideas and support from all your comments. Hang on in there folks!

@NanFlanders our dd is vegetarian (except for fish fingers!?) and has been brought up in a vegetarian household so I am glad that is considered ok.
We got dd’s height rechecked and it was wrong by 3 1/2 cm. She was adamant that she hadn’t manipulated it but it’s sorted now anyway.
She has lots of B vitamins to take and will be weighed, have vitals and bloods 2 x a week until she can be seen by a senior clinician. It should be in c.2 weeks. We have been given a book on FBT but told as she is so underweight we should only be aiming for 1/4 of the calories stated - but not for how long or when and at what rate to increase them.
DD is in a permanent panic attack, Dh refusing to even read the book, Ds furious with me that I didn’t get dd hospitalised (he is so scared) and I returned to work yesterday as I was told I needed to be signed off sick if I wanted any more time off. Ironically, I developed a cold during the day - tested when I got home as my vulnerable mum is visiting and I have Covid! Feel horrible and self isolating. Does anyone know how covid affects people with anorexia?
it was really hard seeing everyone’s prom photos this week. My dd had refused to go anyway as she is so socially isolated but I was unexpectedly upset by seeing what her healthy peers looked like and trying to imagine her in a dress.

@bringmethehumous did the height change make her wfh better or worse?

@bringmethehumous our DD had covid in the midst of Anorexia, although she hadn’t been diagnosed with AN then. At that point she had not received her jabs, her ‘appetite’ dropped but she recovered from covid quickly. Can I add my experience and this is not to alarm you. Refeeding at home once the AN is exposed was really difficult, sitting with DD to eat a rice cake for an hour is physically and emotionally draining. Both me and DH took turns, we had to. Our experience was DD was so ill then looking back hospitalisation was inevitable - we forced admission as CAMH had no available beds, I stayed with her in A & E until she was admitted. It was the turning point to begin her recovery. Your path maybe different but please have this in mind.

Also I wasted emotion on why did this happen, what did we as parents do wrong - seeing DD’s class friends enjoying life upset me as she is suffering - but this is our family battle and we are not the only family going through this - we hope and pray that DD’s life will return to some kind of normal, in the meantime we do everything we can. It is tough but you are not alone.

Hi @bringmethehumous . Our DD was also very underweight, but they ramped up the refeeding pretty quickly - half the meal plan on day one, 3/4 on day 2, then the full thing on day 3. The hospital also prescribed thiamine to guard against refeeding syndrome (could ask your GP maybe?). Make sure she is actually taking the vitamins - they are really important and we found loads in our DD's bedroom. Also, she needs to be eating in a tee shirt and leggings - I thought we were watching our daughter like a hawk, but we have found so much crunched up, pocketed, or half-chewed food in pots in her room. Sorry you find yourself here. Good luck with the next couple of weeks.

FWIW, FBT does have the best outcomes (tell your DH), so great if you can get it to work. But it takes a big toll on the family - including siblings. And sometimes they need more.

Bring ring your Gp and get signed off with stress, it is absolutely impossible to do FBT and work, it can't be done. FBT is a 24/7 job that will take all your time and energy.

Your dh needs to get on board pronto, if this was a conversation about whether or not to force your dd to have chemo to treat cancer I suspect it would go differently. Food is the medicine that will save your dds life.

I had a feeling the height measurement was going to be wrong.

The quicker you can ramp the calories up the better. It is likely you will start to see the ED monster for its true self now it's been exposed so brace yourselves 😕

Hi @NanFlanders dd has been prescribed Thiamine and the other B vitamins against re feeding syndrome.
Her wfh is worse now her height is correct but it is what we thought it was originally so it’s not a surprise. I am just glad we got it corrected.
Hi @Girliefriendlikespuppies I can already see how very hard work FBT is going to be! However, I am loathe to get signed off with stress unless absolutely necessary as I don’t get sick pay (work for an academy) and my Dh runs his own business from home since losing his (well paid) job during lockdown and it is only just starting to make a little money after 2 years. We are already really struggling and can’t afford to lose anymore income. If I can get to the end of term supported my extended family I will at least get paid during the holiday. I have 5/6 weeks then to solely focus on dd, FBT and recovery. Then I can think again come September.
The potential implications of her ED are huge and I am trying not to think about them.
Thank you for all your advice and support it makes such a difference to be able to share with you.

@bringmethehumous Start a claim for DLA (or PIP if she is over 16) immediately. It's not income or employment dependent and can take a while to come through. (I totally know where you coming from about work - I LOVED my job. 3 days off sick in 20 years. Now starting my 4th month stress leave. So sorry this has happened to your family)

@bringmethehumous My DH also runs his own business from home and that has been a huge help - if only to make sure that DD was not alone at anytime during the day but also for him running errands. Food shopping is not the same when caring for an anorexic - having to buy calorie dense foods, I’ve had to re-educate myself about diet and nutrition and shopping does take longer.

When refeeding I couldn’t believe the ED monster turned my pleasant daughter into a foul mouthed, violent, obstinate creature - hiding under the bed sometimes to avoid snacks. A parent had warned me what to expect, I didn’t believe her - I thought her DD possibly had further mental health issues, what she warned me about all came to be true. Food thrown, punches, kicks - furniture smashed - I say this to forewarn you, as @Girliefriendlikespuppies says brace yourself - you may want to consider who in your extended family is able to deal with this at meal and snack time if you are at work - they have to be firm with no negotiating with the ED otherwise food will be missed. It is very hard and upsetting but wholly necessary.

Sorry for the doom mongering, there is no reason why is should not get better but right now you are in the middle of a storm and it takes all your energy, emotional and physical.

I bought Eva Musby’s book, there are lots of practical tips and lived experiences to draw upon - some of it is available online.

@bringmethehumous it's so tough and I remember the early days so well and NOT fondly. If your DH wfh then all the more reason to urgently get him onside. You must present a united front and he will be around more until the holidays. My DH did undermine what we were trying to do quite a lot esp around exercise and it nearly broke us. He was less able to stand up to the ED and so facilitated behaviour that wasn't helpful. I said in the end that if he wasn't able or willing to undertake the research and understand how fbt worked then he must only do what I said he should do. I think he had a lot of guilt and didn't process it well. He was also unable to see the ED as separate from DD and so was worried about upsetting DD or disturbing the peace when actually poking the ED and making it cross is exactly what you HAVE to do. It makes the patient extremely anxious and leads to hysteria and anger but it has to be done. To help him understand i likened it to chemo for cancer. You are killing the cancer (or ED) but the side effects are hideous. ..