Teen Eating Disorders Thread 7

[Lottsbiffandsmudge]

We have managed to fill the previous Thread here https://www.mumsnet.com/talk/eating_disorders/4471980-Teen-Eating-Disorders-Thread-6?page=40

So I thought I would start a new one.

Everyone supporting a young person with and ED is welcome here for advice (non professional but lived experience) and support.

Hoping everyone can find us...

Help I don't actually know my dds weight. She's blind weighed weekly then we discuss her WFH. She's also measured for height regularly as she's still growing. We don't have scales in the house. The first weigh in was a shock. It was with the gp nurse who calculated her BMI on the 1st centile.

You'll find your way. They're all so different. It's taken me a few months to work out how to work with my dd and I'm still tweaking it and learning how to increase calories without freaking her out.

WhyIsThisHappening....what does WFH stand for please? I can only think of working from home 😁.

Wow, BMI on the first centile, that must have been a massive shock for you. Gosh.

I think you are right, we all have to find what suits our children and situation. Trial and error, probably with some shouting and tears along the way. Whatever works 🙏🤞🤞❣️

Oh yes! Sorry it means Weight For Height which is calculated as a percentage. It's was explained to me that we're aiming for between 95% and 105%

AHH, thank you! 😊

Thank you all for your reassurance and kindness especially @Valleyofthedollymix for sharing what your sons said. I have decided to be more organised and have planned in time dedicated of just one and one time with each daughter and also making a more conscious effort to make ever moment better if that makes sense ! Just engaging in the car sort of thing or singing along to the radio together.

Does anyone else get appointment anxiety ?! She always has appointments Monday morning and gets weighed in one of them. The night before I am an even bigger mess than normal ! It was not good today I feel so torn half of me wants to keep her out of hospital and we are fighting hard to do that yet a little bit of me thinks I have nothing else to give and I don’t think she has either maybe through no one’s fault it is the only way she will recover if she is admitted but the autism complicates it further I feel. She is now 75% I am really scared for her heart we have been sent to A&E due to low heart before but never admitted as she gets panic attacks in hospitals ( due to previous trauma in them none Ed related though ) but this means she is hyperventilating so of course when they check her heart rate there it’s high ! I just fear in the night the most

sorry for yet another ramble

I also wondered sorry if you have already done this but I love to cook but am sick of making the same foods ( the ones easier to sneak calories in !) and thought if anyone wanted to share what dinners they have planned for the week it could potentially be helpful ? or just any meals that have been a success at getting calories in !
these are mine for the next few days

• doing a Hallumi and cauliflower curry with coconut milk, spinach wilted in lots of butter and rice
• Carbonara with egg yolk, double cream, bacon and Parmesan
• beef and barley stew with suet dumplings
• prawn Thermidor with garlic bread
• filo pastry parcels with goats cheese, butternutsquash, walnuts and cranberries
• duck au van with lots of cream and butter in the mash

No to locking her in but you could ring the college explain the situation and say you need to bring her home as she's too unwell to be there. What have Camhs said about the loss? Are college aware of how unwell she is?

If she's saying it's just extra activity is she agreeing that you need to add in at least another 500cals to the meal plan?

The fact she was kicking off about the juice is another red flag that she's actually restricting a fair bit (sorry, I hope I'm wrong...)

Love pre ED clinic appointments my anxiety used to be sky high, I think that's normal 😕

That meal plan sounds 😋

My best meals for getting calories in are;

Fish pie, I cook the fish, cover it in a thick white sauce which has cream, butter and cheese in and top with mash potato which also has a lot of butter and cheese in.

Chickpea curry (tin of coconut milk and chickpeas in, can also add double cream if you wanted.)

Cheesy Pasta bake, pasta in a thick white sauce and I crumble Doritos and cheese on top and then bake 😋

I definitely think hospital has a place and sometimes everyone needs that break.

@Girliefriendlikespuppies She's in sixth form of her secondary school, so the school know she was off for a year with AN. CAMHs say they can't advise against school as her obs are good (up to 83% WFH and heart rate normal) and they think it is good for her MH. CAMHS have said to give it a week of complete compliance (as she refused a couple of desserts and a snack the previous week - certainly not enough to account for a 1kg loss though) to see if her meal plan needs to be adjusted. She is adamant she doesn't want to get better. I don't know what sanctions we can use - school want her to go on a pre-Oxbridge (her dream) programme, but she would rather not go than eat in the canteen there. We've just cancelled a trip to Spain (and probably lost all the money) as she wouldn't eat there.

@lovewinter - This recipe is lush: www.bbcgoodfood.com/recipes/creamy-mushroom-pasta

@NanFlanders @Girliefriendlikespuppies thanks for the recipes will be trying those next week !

@NanFlanders i know this sounds awful but when D was at school like your D she doesn’t care about anything like trips or grades anymore but we found threatening to go in if she didn’t eat breakfast worked after we followed through the teacher was excellent as well, she got called out of her lesson and had to go to the heads office who said she had been called because she hasn’t eaten adequately and she has to put all her students well-being before any grades or attendee she was mortified. Sadly she soon decided that she would rather not go to school than eat breakfast and due to bad obs she can’t go anymore but may be an idea ?

what heart rate would your teams flag up as I think that Ds team are very lenient with what is ‘dangerous’ I think it’s far too low but they seem to believe she will be ok as it is not erratic

@lovewinter That is a very good idea, actually. DH took up her meds today as she didn't take them and got her pulled out of class. Mortified, but she did take them :-). Heart rate: they pulled her out of school if below 50 BPM. Has been hospitalized at 45, 42, 48.

@lovewinter the hospital thing is a difficult one. I know some people have found it has kick started recovery. Although I was occasionally tempted to push for it when it got too much at home I knew it would have been a disaster for my DC as she is hospital phobic. So I often said to her ' I am going ro do anything it takes to keep you at home and out-of hospital' and that did help get food in sometimes. At one point DD wanted to go to hospital as she thought it would help until I pointed out that it wasn't a magic bullet. She would still have to eat abd feel wretched just without the security of home.

@Lottsbiffandsmudge I have to agree with you she is terrified of hospitals has flashbacks and panic attacks when in one and she really doesn’t want to go.

@NanFlanders thank you she has at least been pulled out of school but more due to a large drop in blood pressure when standing up her heart rate was 39 bmp today and no action was deemed appropriate as apparently she just seems to have a low heart rate in the nurses view !

Nan it's a shit situation, i think I would definitely be saying to dd that another loss means no school though. The not getting better thing is complicated as I think they do want to get better but the thought of what that means is absolutely terrifying and overwhelming for them 😕

Interesting re the heart rates, dds was scary low around 42 bpm at her first appointment and there were a few raised eyebrows and mutterings of admission but nothing else. I think I was so in shock about everything I couldn't really process what it all meant, even though I'm a nurse myself!!!

I should add there threshold to sent her to hospital seems to be 35 which in my opinion is far too low or maybe I am just over anxious ?

@lovewinter - I don't want to alarm you, but 39 seems very low. 60-100 is normal. Is your DD eating?(Your meal plan sounds awesome). I've been told mine will be re-hospitalised if she goes below 50.

@NanFlanders The issue is I know it’s low but as a soon as she gets to hospital and starts to hyperventilating her rate is measured much higher so they deem it ok to send her home. She has not had one higher than 44 for what seems like forever now. She is probably eating around 1800 calories which is no where near enough I know I did manage about 2500 a day two weeks ago but we have spiralled rapidly down the last two weeks

Love they shouldn't be looking at the heart rate in isolation though? Has she had recent bloods, ecg etc? Have you got a copy of the marsipan checklist (I think it might be called something different now..?)

A heart rate of less than 40 is a ridiculously low number for them to act on - she could be in heart failure by then!!

@Girliefriendlikespuppies she has bloods weekly and an ecg weekly, she has some abnormalities such as liver function warnings and low white blood cell count and red blood cell count, her ecg comes back the same each week as very low but in their words ‘ as it is normal for D’ they are not worried

@lovewinter I'm not a health care professional (though I think @Girliefriendlikespuppies is?), but 39 is NOT normal for anyone. Some athletes have low BPM, but that's in the 50s, not the 30s. Added to liver function warnings and low white and red blood cell count - can you escalate to her consultant? When my DD was in hospital, they moved to NG feeding the day after her BPM fell into the 30s during the night.

@lovewinter my experience with DD was the same as @NanFlanders - my DD is an athlete but when her BPM was in the 30's and she was admitted to hospital and monitored through the night and there her rate fell to the point that cardiologist had to attend, the heart monitors were off the scale and I worried if she would make it to the morning. My advise would be to push the medical professional's hard, in my view they made a lot of mistakes with DD and I wish I had spoken up more - I was in a state then but looking back that in itself should have fired me up to speak up for my DD - I am her best advocate.

@lovewinter thanks for posting your meal plan, always helpful to see what other people are doing meal wise.

this week for us is
macaroni cheese
veg curry (freezer surprise, I think it was tikka masala), tandoori halloumi, creamy black Dahl and parathas
risotto
fricken casserole and mash (beef brisket for the non veggies)
something and chips
stir fry
something with pork steaks/fricken

Ive realised that I gave her halloumi in her wrap today as well which means she is going to moan about double halloumi and probably refuse to ever eat it again 🤦🏻‍♀️

At the moment I am not loading dds food because she was maintaining on not enough food and I want to get her eating her meals not thinking she can skip breakfast, eat half her lunch and dinner and still be ok. When we were in the early stages though I was adding butter and cream to everything!

It does seem strange that they’re not taking your dds heart rate more seriously. I’m not very knowledgeable about the medical side of things but all I can say is if something doesn’t seem right to you keep pushing. I’m rubbish at doing this myself and I do think it’s slowed things down.

I could do with some advice from the group about going away this weekend.

It's my nieces christening on Sunday, they live quite far away so the plan has been to stay with my mum Saturday night then go to the christening/lunch after then come home.

DD has indicated she wants to go - seeing my family is a safe space for her, in fact she's also asked that we spend Christmas with them and try to stay over half term too.

I've been focussing on the positive fact she wants to go, but last night she said shes now feeling anxious in case she gets low and is unable to eat with them. I've said I'll find out what the food plan is but I'll also have a think about other things we can do to help.

I'm at a bit of a loss though. I know it might not be a good idea to go, but at same time I don't want her to withdraw completely from normal life, particularly when it's something she wants to do

Does anyone have advice?

@Moomarre I’ve stopped loading food as we are at 104% wfh and want DD to eat normal meals to get back on track. Does your DD have snacks and desserts? We continue with these as she has resumed activities, PE etc but I do think when to back down on snacks, if we should?

@LittlePickleHead my advice would be to go - my DD has social anxiety but we have seen that going out in public and meeting family and friends has reduced the fear. For her eating - have plans in case there is a refusal, but in my mind DD cannot hide away from the world - that is what the anxiety and ED want (and sadly it was hiding away during lockdown when all this began). DD has to face her fears with our support.