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 everyone. Just checking back in with some good news. My DD was discharged from hospital last Tuesday. Incredibly, after nearly a year off school and with four hospital admissions this year, she did really well in her GCSEs, which she took from home (needed to be signed off to carry on twice a week as her obs were so bad) which seems to have given her a real boost. She's started sixth form full-time today - hoping she can eat lunch there (she was adamant she didn't want supervision, and the hospital agreed this). I'm starting a phased return to work today. For those of you like @basilbrush who are just starting the journey - it's hideous, but it does get better. This group offers tremendous support, so do check in regularly.

Hi @NanFlanders - that’s brilliant news - I follow your posts with interest and the roller coaster you have been on. Hearing about your DD’s progress has cheered me up on a rather rubbish Monday.

I am not an ED expert at all, but when you think about cooking generally if you want fat not to show it needs to be emulsified - because water and fat don't like to sit next to each other without a molecule to bridge things. Things that can act as emulsifiers are flour, mustard (think about making a salad dressing), egg yolk (mayonnaise), honey, tomato paste.

Thanks @D1ANA22 . Sorry to hear you are having a rubbish day. Hope it picks up. Thinking of you - hang on in there!

@NanFlanders that's fantastic news. My dd was supposed to be starting college but has been hospitalized so it's a really bad way to start the term, but it gives me encouragement to see how your daughter has done so well despite all her struggles.

That's great news Nan I'm pleased for you, is she eating much better for you now?

My dd started college today as well, she seems to have managed really well and had a good day. We broke open the posh chocolates tonight to celebrate 😁

Fingers crossed for new beginnings...

Hi @Girliefriendlikespuppies- she is completing the limited range of food she eats - though came close to a refusal the day she was signed off for sixth form as then didn't have the 'excuse' to eat. I'm hoping the incentive of staying in school will be enough to keep her on it though 🙏. We do need to increase the variety, but focussing on getting her eating outside the house for now. She claims to have eaten a packed lunch in school (which is brilliant, if she has) and we are planning to go away to a shepherd's hut for one night this weekend to trial it. If we can get that to work, then that puts visits to grandparents, holidays etc., back on the cards.

Glad your DD had a good day in college - and good job with the posh chocs!

@HilarityEnsues She'll get there - and her health is much more important. Thinking of you and hoping your DD rallies soon xxx

Glad to hear your good news @NanFlanders and @Girliefriendlikespuppies
Long may it continue.

Hi everyone

I keep going MIA bit sometimes it is hard for me to come on as it is just so exhausting so thanks to everone who answers or offers advice. I am also really sorry I am not getting to read everyones posts but it is all so overwhelming.

I cannot even remember where I had left off but we had to go to doctor again on Friday who is still saying DD is not critical enough for hosptal. I hate GP's. Well I hate my one anyone. Tried to get DD to a new GP but that is really hard too.

She is still barely eating more than 500 calories a day. She is having coffess though made with unsweetened Almond milk and sweetners. I was wondering could I swap out the unsweetended for the sweetened would she know? I am hoping, really hoping that the NEDRC can help on Friday. It is so expensive but it is all we can do at this stage. The doctors, the hosptal etc are just not listening nor do they care. I rang the mental health services for young adults in our local area every day for the past few days and left several messages but they have not even called me back. So I guess the only way to go is private. We are by no means wealthy and this is going to knock us back a good bit but what can we do?

It is an absolute shambles. Our government don't care. And I really just realised this now.

Anyway rant over, so DD at the moment is eating strawberries and zero fat yogurt for breakfast. Some blueberries for lunch and then tuna, cucumber and cauliflour rice with salsa for dinner. A couple of coffees a day with unsweetened almond milk and coke zeros and some water.

Another thing I wanted to ask and I am so shcked about this but I noticed that she wears really baggy clothes around us and if she is out and about but once in her room ( which she spends ALL of her time) she wears little bra tops and shorts. I did not think anything of it until I noticed she had her ring light on. And I think she may be posting pictures online as I read about thos pro ana websites . I just said to her " be very careful of what you are doing while you are unwell as these pictures are out there forever. And she immediatly got on the defensive. It is like dealing with a toddler in an 18 year ols body. I am so worn out already that I just do not know where I am going to get the strength to continue on with all of this.

@Snuggleworm Didn't want to read and run, but hopefully the NEDRC will be more clued up than your GP. I don't know about buying sweetened milk and hiding it. I only did the hidden calories thing one (and then only butter in mash) and it has taken months and months to get trust back. (I know others feel differently and have had good results though). My DD wouldn't eat anything made from scratch in case I'd added something. My daughter's team advocate the short-term distress of knowing what is in food, over pulling the wool over their eyes, as it then convinces them the anorexia voice is the only thing they can trust. Could you replace all the yoghurts with something like Yeo Valley wholemilk yoghurt? My DD will have that as it's organic and there is a big dose of orthorexia with her ED. Avocadoes are also okay with her. The toddler thing rings true, sadly - their brains shrink with AN, and it's suddenly back to meltdowns and trouble with emotional regulation.

@NanFlanders Thanks for getting back to me. No she won't eat anything at all except those zero fat yogurts,strawberries, blueberries, celery, cucumber and tuna fish. So the list has gone down from what she was even eating a couple of weeks ago

Delighter to hear your daughter is doing well. I have not read all your posts as I am so new to all of this and only at the start of what looks like a long long road to recovery

That sounds so difficult and exhausting snuggleworm. If you know any of the website urls you should be able to block them through your router settings. I'm not sure how this works of she's got data on her phone.
I can relate to the toddler behaviour. It's completely draining.

Nan are the ED team etching her weight? I'd make it a condition if not been watched at college eating lunch that she continues to gain weight. Any weight loss means instant supervision of lunch. That worked for us anyway as dd was desperate to avoid me going into school to watch her for some reason 😉

Snuggle I really feel for you, the situation you're in is awful. I personally would be sneaking in calories any which way you can. I never really considered it a break of trust as it's only the EDs trust I'm breaking so 🤷‍♀️ It's not dissimilar to giving someone with dementia there's meds stirred in to yogurt.

Anorexia is similar to other brain based conditions like dementia and schizophrenia, the brain is not functioning normally and they can not make an informed decision on their treatment so parents have to work in their best interest.

I also note from this small mn group that the children that have done well and in some cases completely recovered tend to be the ones where the parents crammed double cream into everything!!

Snuggle can you buy ff yogurt and decant it into the low fat tub? Yes to swapping the sweetener.

Hi @Girliefriendlikespuppies. Yes. Her appointments have been reduced to once per week - one week we'll have a whole family appointment, and then the next DD will have a session with one therapist, while we have one with another. But obs will be taken every week and adjustments made if she's not gaining. She did lose 200g today, but agreed to a small adjustments to the meal plan - one extra fruit and morning porridge made solely with milk (currently with milk and water). I do think she is eating actually, as she has told her closest friends about the ED now, and has been going to a nearby park with them to eat lunch, but she's been burning a lot going from bedrest in hospital to walking to school. If loss continues, then we will have to supervise.

As we're doing this on our own until DD13's initial psychiatrist appointment on 29 Sept, I could do with some advice as I feel a bit at sea here.

There have been a couple of meals DD has point blank refused - last night it was a Hello Fresh veggie carbonara type thing that she had previously enjoyed. It led to a huge emotional outburst and I tried to get though the meal with distraction etc but it didn't work. She hated me, I didn't understand. She also doesn't want to eat with anyone but me but I'm trying to push back on that (although v worried about my son picking up on it - he was at after school club last night but maybe I should be shielding him from mealtimes?)

Eventually I made her a huge pasta pesto with a full tin of tuna which was actually greater in calories, and she managed with that. I find it very confusing. Obviously I know it's important to get the calories in, but is swapping the meal going to make it worse? I didn't want ti be too harsh as first day back at school and managing me taking her out at lunchtime was a transition she'd had to deal with.

At the moment I'm leaning towards the foods I know she'll eat but I can see how restricted this diet is (even though it's enough calories).

Is it ok to proceed like this until the appointment?

Sorry, many questions in there

@LittlePickleHead you will probably get lots of conflicting advice on this one but, given that cognitions improve with adequate nutrition, and your DD ate pesto pasta with tuna (which is a balanced meal), I would be more flexible and then gradually add more 'banned' foods. It would be different if it was courgetti with tuna and no pesto, but in this case it might help build trust and get her to a healthier place physically and then she will be able to improve mentally and engage more with treatment etc.

I agree here @LittlePickleHead you got her to eat her calories (and more), managed her new lunch routine and ger first day back. That is a great achievement. Well done you!
I would again suggest a meal plan. I did a weekly one. At the very beginning I populated it with meals and snacks DD was comfortable with. After a few weeks I started adding in difficult meals but balanced them with an easier lunch say.
I didn't 'consult' my DD on the formulation of the plan but we did go through it.
When meals are resisted repeat the mantra. It's on the plan. That's what you need to eat.
It really helped.
I didn't do fear foods until much later in the process. Some do them straight away. I am happy with my route. After a year in recovery things are coming back. I wanted to concentrate on getting her back to eating usual meals with us asap.
With regards to your DS does he know what is going on? How old is he? Its v tough on siblings and you may need to speak to his school. My boys were older teens but i still told the school and it was helpful.

DS is 9, and no we haven't said anything to him yet but no doubt he will have picked up on things, particularly Sunday when him and his dad had to eat dinner first as DD refused to go into the dining room until they had gone.

We've played a few games over dinner which have been fun and he's enjoyed so I'm hoping some of the additional family time will help, but he struggled a lot himself over lockdown (was only 6 when we went into the first one) and we ended up with a CAHMS referral due to his anxiety, which still has an effect to a certain extent, so I'm really conscious of trying to manage this with him too.

Good advice to speak to the school, I'll do that.

The lockdowns have really done a number on both my kids :(

Beat have some good resources for talking to siblings. Mine were in year 11 and 12 during the worst of DDs illness in the 2nd lockdown. It was v tough for them and DS1 also has OCD and anxiety so I know where you are coming from.
I would try to explain in simple terms to him what is going on.The ED does tend to take over family life. My boys ended up in school classed as vulnerable during the lock down to escape the often destructive behaviour of the ED.
You may well have to divide and conquer for a bit. My DD only wanted me so I was MIA for a while for both boys. They understand and it has had no lasting effect on our relationship.
Are there grandparents that can help with DS too?
You are doing great

LittlePickleHead

She ate. That's great. Maybe have a little chat about the tuna pasta with her to remind her that she enjoyed it, and suggest it as a weekly meal.

My dd who is nearly 17 just has around 6/7 meals that she's completely comfortable with so we are sticking to those for now just to get her to eat and avoid any upset at mealtimes. She just won't eat at all once she's upset. Her favourite is chicken curry so we have that twice a week.

I do a weekly dinner plan in advance so she knows what to expect. It's on a whiteboard in the kitchen. Even before ED we planned meals for the week to budget for food shopping, so that's just a normal thing for us. It works well. No surprises.

Oh and dd eats with me at the kitchen table and poor old dh is in the dining room next door but the door is open and some conversation flows through. When older siblings are around they tend to eat at different times anyway as come in at different times. Must be harder with younger ones. It's generally only Christmas day we actually all sit at the table together. Dd is stressing about Christmas already, but we'll work something out. It'll be a massive achievement if she actually eats a Christmas dinner, I won't care at all who sits where.

Little for times like that I consider it loosing the battle but (hopefully) winning the war. It also shows clearly how irrational the illness is, my dd has had a meltdown over something and then agreed to something else with more calories before now 🤷‍♀️

Funnily enough we had pasta pesto with tuna last night as well 😁 I gave dd half a garlic bread baguette with hers as well!

I'm enjoying 5 mins peace, dd is at college and its the one of the first times I've had the house to myself in a long time. Bliss ☕️

I'm just getting this out because I dont really have anyone to talk to, well I do but no one who can really understand.

I've had a few down days. We're not making much progress. dd is maintaining or making very small weight gains. Still very low wfh.

Dh bought home some maltesers. Dd wouldn't even have ONE. It hit me so hard just how awful this is. I went to the bathroom and cried.

Mealtimes feel like feeding a toddler with the distraction and me chatting any old stuff to try and keep the atmosphere light and keep the food going in. I can tell she hates it too. I'm sick of talking about food and thinking about food. Going around the supermarket is now just a miserable task. Spontaneity around food is a thing of the past.

I seem to have an almost constant headache and ringing in my ears and keep picking at the skin around my nails so they're red raw (a nasty habit I overcame a few years ago). I feel constantly anxious like I'm preparing to go into battle. I'm perimenopausal too and have terrible periods every 20 days at the moment. Dh tries his best to be supportive but I'm finding myself snapping at him a lot. I'm lucky he doesn't take it personally. It makes me wonder how many relationships crack under the pressure.

Camhs appointments feel like groundhog day. They tell me what I need to do. Dd nods along that she'll do better. We both know she won't without a big fight. We can't go anywhere. We can't have visitors. I'm so scared of saying the wrong thing.

Any tips or help to get out of this slump and this bleak feeling would be really gratefully received.