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...

Little** I had to take two periods of extended sick leave from work, especially in the early days there was absolutely no way I could work and look after dd. FBT is a full time job and it took all of my energy and focus.

Yes to monitoring the phone, I would be very suspicious of any change of passwords and definitely insist on having them. Don't be afraid to not give the phone back, I took dds phone off her periodically for various reasons and she was always happier without it (after the initial strop.) There is a lot of pro anorexia content out there especially in places like instagram and tiktok.

Personally I'd be wary of a private psychiatrist, do they have ED knowledge? There's so many 'professionals' out there that do not have up to date knowledge of treating anorexia and unfortunately end up doing more harm than good 😕

@basilbrush am pleased that the GP was thorough and I hope a referral comes through. Hope with any future GP appointments you're able to see her again.

The rest of the day sounds tough on both of you so be kind to yourselves today (not easy with an ED ever lurking)

@LittlePickleHead agree that changes to phone usage abd passwords are worrying. I put a 'spy' type package on DDs phone. I could track where she was and also see what sites she was accessing. I think it was called Famsafe. It did block some sites she wanted (such as her schools website!!) But I told her that it was thag or no phone. I also logged in periodically to double check. She was looking up calories, fitness plans and all sorts.
@basilbrush glad GP was thorough. Your DD will feel worse. The ED feels threatened. So will be making her miserable. The 'needing more time to cope with stress' and her not wanting to go above 1000 cals are a deal she ha struck with the ED to keep it happy. Please don't make deals with it you need to help your DD stamd up to it by supporting her through what will be tough times. You can't bargain with the ED.
Once the ED is called out behaviour and distress often worsens considerably.
And FBT is a full time job. I couldn't work at all.

And just to add on the work issue.... if one of our DDs was suddenly diagnosed with cancer and needed full time treatment hardly anyone would not ditch work in an instant. This is as life threatening and as long term....
No one is irreplaceable at work, they would still carry on if you got run over by a bus tomorrow!
You DD is irreplaceable.
I know that sounds harsh but thinking like this can help with conversations with employers.

I just don't really know where to go next. DD thinks I've been tricking her with food and that she's now fat (I haven't been weighing her as triggering but she's put on a few lbs of estimate and is looking a bit healthier). So I'm now having blank refusal

The private psychiatrist is an ED specialist but I don't really know what other route to take. The GP seemed very doubtful about her getting seen by CAHMS any time soon and so wrote the referral letter. We've still had to wait a month for the appointment.

Her mental health has deteriorated during that time so now I'm unsure what to do - back to GP? Hope that the private psychiatrist is ok? We're pinning all our hopes on this appointment but there is a sense of us being outside of the system.

What would you do in this situation? She's presenting as a-typical at the moment as is probably just at the bottom of heathy (although determined to try and lose now).

I feel so alone. I don't even know how to broach the conversation with work. Do I need to get signed off myself by the GP?

Hi @LittlePickleHead here is my (unprofessional lived experience advice) Hoping I have these details correct?
Your DD is 13 and a dancer? She is not eating independently at school?
Where are you with dance? Is she dancing still? If she is this is your leverage.
Make a meal/snack/drinks plan write everything on it. Start at the cals that she is currently eating in a day. Ensure there are 3 meals and 3 snacks at at least one dessert. Start with foods she tolerates well. Try to keep meal times consisten so she eats every 3 hours or so.
Sit with her and explain the plan. Say that if she wishes to keep dancing she must complete the plan. That you know that will be tough but you are there to help her. To get the eating done. Ask her to treat it like a chore list explain that you do not expect her to enjoy it but that it must be done.
She will find it very hard. You will prob have to support through each meal. Not be reassuring her verbally as such but by being there physically and understanding how hard it is for her but firmly not allowing meals or snacks to be missed

There is no point trying to argue logically that dance needs x calories etc. They cannot use logic.
Keep reiterating that you know she is not well, that it's your duty as her mum to help her get better that this is the way to get better. Explain that if she cannot eat the plan you cannot safely let her dance.
Do her dance teachers know? My DD is an elite footballer and we got her coach onside and another person saying no food no training was immensely powerful.
The psychiatrist may be able to offer medication (we found olanzpaine immediately helpful) and another voice backing you up.
All CAMHS do is provide you with the knowledge of and empower you to do FBT. but it can be done without them. My DD hardly saw CAMHS but I used them as support and to check I was on the right track.
Over time the calorie level needs to go up. But get into good habits first.
Have you joined the FB group EDSUK? Beat also have helplines.

And yes GP to be signed off for stress

Your details are correct, yes.

I have tried to use dance as leverage (she's just started it at GCSE and has til now been motivated to get high grades) but she's now saying she doesn't care if I stop her.

I've got a meal plan that she can see but she's now saying that I've tricked her and it's too much and she'll end up fat. I've said my role is to make sure she's healthy and can continue to dance, meet her friends etc and to date it's worked ok but she's now saying she doesn't care. I negotiated on breakfast today and got her to eat something but not what was on the plan.

I know I have to double down and keep going and I will. But it's heartbreaking for her to seem to just not care about anything. She doesn't even care I've got her phone.

Sounds like a positive start Basil. My dd is upset after every appointment. She hates me for being honest about the amounts she's eating in front of her therapist and the evening meal that day is more of a battle than usual.

Does anyone else have the weird situation of an anorexic child, but more food in the house than ever? Dd asks me to buy all sorts of cakes, biscuits and crisps, which I do because of course I will buy anything that she might eat. She will eat one or two out of a packet, then they just sit there. It's like she likes knowing it's there even though they are foods she struggles with. Same with foods like dairylea dippers, cheesestrings, corner yogurts. We have loads of this stuff but it sits there forever. We went to Holland and barrett and she picked out a load of ridiculously expensive packs of nuts and dried fruit & vegetables but they're uneaten. I've told her I'm not buying anymore while the cupboards are so full but she'll say 'Mum, I really fancy some jammie dodgers' and off I go to the shop, desperately thinking this will be the food item that finally snaps her out of this hideous illness. I know it's not helping and it needs to stop, but I'm weak 😔

Oh and cereal. I've just counted 18 boxes that she asked for. Most are full. And last week she went berserk because dh had eaten the last quaker oats pack in a certain flavour and even though there were other flavours I had to go out at 9.30pm and get a box for the next morning.

Now I've written this down I realise it's obviously another symptom of her illness that has crept in without me noticing until it got really bad 😞

They're obsessed with food. That's part of the issue - it's not like they've gone off food, they're thinking about it all the time as they're so bloody hungry. My DD is the only one of my three who's interested and experimental with food (the others are bland food-as-fuel types) so it was particularly painful to see her not eating it, like a musician with tinnitus.

Watching cooking programmes, reading recipes, watching youtubes of people making food, following food accounts... that's a hallmark. I just did a clearout of a cupboard and had to throw away so many ancient protein bars. You're so desperate that if they eat somethine once or show an interest in a food, you go overboard in buying it.

@LittlePickleHead sorry its so hard. And yes yoj do have to double down. Just keep saying that the meal plan is what she needs and refuse to engage in discussions about trickery. The ED is just desperate to get out of eating.
If she stops dancing she will gain weight on fewer calories which might help speed things up. It would be safer too. But dont change the plan. I'd be asking about meds at your appointment.

@Whyisthishappeningtous totally classic behaviour. If she says she fancies something just say. Let's put it into next week's plan. It's almost better to stick to the plan and ignore requests for 'extras'because this often derails the next planned meal or snack. My DD would be so hungry in the evening she would risk a handful of popcorn and then refuse breakfast the next day and spend hours overnight agonising about the 25 calories.
There is no logic.

Little theoretically they should be seen by an ED Camhs team within 3 weeks for the initial assessment, is it definitely the ED Camhs she's been referred to? I am generally suspicious of professionals outside the NHS as I've had bad experiences with dd however you might be lucky. All the 'you're making me fat' talk is classic ED rhetoric.

Why I wouldn't buy more food but I would make sure the food she's asking for is part of her plan so it gets eaten. If she's asking for it my guess is she wants to eat it but the ED isn't letting her. Yy to the obsession with food, a lot of the time it's all they can think about.

We have more food in the house now than ever before, we also have tons of foods that were rare treats pre ED including chocolate bars, biscuits, crisps and puddings. Dd still needs lots of high calorie foods especially now she's doing very long days at college (8am bus and now home till 5.30pm some days.)

No it wasn't the ED CAHMS team, it was specifically a private referral to a child and adolescent psychiatrist that the Gp gave us as she said the waiting list to be seen by CAHMS would be really long - I assume she was less hopefully as DD had only just tipped into underweight (BMI 17.5) but now I'm wondering if I should have insisted.

The GP basically said the initial CAHMS assessment would be done by a psychiatrist so this would be a quicker route. It sounds like we've been fobbed off though?

Just to add some more thoughts on the work issue, I'm a lone parent, and already had sick leave for something else this year, so I am not in a position to be able to dedicate myself to refeeding, I also had time off due to cancer in the family already, so it's not always possible to shut everything down to do this. I do sometimes feel envious of those in couples, but having read some of the issues with dads feeling out of step or cross or isolated from the child or the disorder, now I'm thinking at least in some ways I'm consistent and calm and that might be easier. It's not easier on a practical level though, because doing any type of supervision of food, the buying, the sitting with them, the support is exhausting (we are not refeeding in the classic sense as my daughter did very badly on it first time around, in agreement with the ED clinic, but I do buy the food and support her during mealtimes/to make good choices). Plus the driving is exhausting as well, to save the energy, so she can still take part in daily life. I'm permanently knackered. I do know other single parents and many of the recommendations are simply not possible when you have other children and only one parent, especially if they work full-time, it took our ED team a while to clock this but are now more supportive, realising that if I burnout like a candle, then the whole thing will be unsustainable.

I think you have been tbh. Can you self refer to ED Camhs? In some areas you can.

The problem with seeing a private psychiatrist (apart from the risk they're not following the latest advice etc) is that they're also not linked in with all the other disciplines- the nurses, dietitians etc. When dd first saw ED Camhs she had weekly appointments to have her physical obs checked, weekly appointments with a support nurse as well as seeing the psychiatrist and dietitian as needed. Plus I'm assuming a private psychiatrist is £££.

BMI should not be used as an indicator of an ED in children. WFH can be more useful but also is not helpful on its own (as this thread can attest the range of 'healthy' weights for kids can vary massively.)

Hilarity I'm a single parent and yy to having to do what you can and keep your sanity intact. Part of the FBT advice is to avoid taking your child to supermarkets but in the early days I had to either leave dd suicidal at home or take her with me and cope with the fall out 🤷‍♀️

I also think that's why I wasn't as strict as I should have been about dd finishing food and let some snacks go. I just didn't have the energy or stamina to keep on top of it for days, weeks, months and now years 😕

I definitely took the path of least resistance which meant my dd is generally much better, eats enough calories, is a healthy weight, going to college etc but still can not eat freely or independently and still has a lot of rules around food. I live in hope that her brain will eventually catch up and she'll choose recovery...

thank-you to the comforting words about the illness being genetic. I'm so low tonight. I have struggled with depression in the past and I'm experiencing suicidal thoughts now. I really find it almost intolerable to deal with misery of my dd and the impact on my other children. I just don't know how to get through this.

@fairylights82 I'm so sorry to hear your struggle with this, it truly is a terrible illness. Tonight, is there any chance you could phone the Samaritans or email them:
www.samaritans.org/how-we-can-help/contact-samaritan/talk-us-phone/
I have called them when desperate a few years ago and knowing there was someone on the end of the phone helped me through that night.
You might also find it helpful to call Beat, the ED helpline, when they are open, I have called them a couple of times in the past few months and found them both helpful in terms of information but also very compassionate and prepared to just listen whilst you vent. I have had the phone ring and ring a couple of times, but then called back at other times and got through relatively quickly.
I have sat in the car to phone before now as getting privacy in a household full of teens/children is so hard.
Do you have any support such as your GP or MH crisis team? I ask as I am on anti-depressants which I started taking when this all began, as well as other life problems, and I've found them extremely helpful.

It may be you know all this already, but I didn't want to leave your post unheard tonight because I know how this bloody illness can make you feel. You will fight another day though x

Yes I tried to self refer to our local ED CAHMS team and they've stopped self referrals - needs to come form a GP.

Yes the psychiatrist is £££ and our insurance will cover limited sessions.

Need to call the Gp again today armed with facts/clear ask.

What should I expect? 3 weeks referral? Bloods? Blood pressure? She only got weighed last time (and the doctor called her weight out which was hugely triggering!)

I can't believe I've potentially wasted a month waiting for this appointment and not been sent down the official pathway

Fairy please contact your Gp today and talk to them about how you're feeling. Lots of parents of kids with ED need mental health support themselves and possibly antidepressants. Caring for my dd throughout this illness has definitely taken me to some dark places, it's a terrible illness and the effect on parents is massive.

Please know you're not alone and you can get through this.

@LittlePickleHead - I'd insist on the ED referral. CAMHS generally can take a while, but ED CAMHS should be quicker. We got a cancellation and were seen in three weeks - then hospitalised four days later! @Lottsbiffandsmudge - thanks for starting the new thread

Little it's worth googling NICE guidelines for treating eating disorders in children. The document gives clear guidelines on what you should expect. I just had a quick look and couldn't see a specific timeframe to be seen by the ED Camhs team but it might be in there. My understanding was the wait should not be longer than 3-4 weeks. With my dd from the initial referral to being seen was actually 2 weeks (but that was at the start of covid so might be different now.) It does state that BMI should not be used in children as an indicator of an ED.

And yes the GP should request bloods, ecg and obs (bp and pulse lying and standing). Ask for an alert to be added to your dds medical notes that states she must be blind weighed. Part of the ED referral will ask for those medical assessments to be done first.

The GP will need to check with the ED service which particular bloods they look at and the ED service will need to review them (don't be reassured by a GP telling you they're 'fine' until the ED service have also told you that as they look at the parameters slightly differently.)

Catching up on the thread and sending my support to those parents who are at the beginning of this dreadful illness - please remember that there is no reason why your DC’s won’t start to recover, but it is hard - you are fighting their eating disorder not them so put on your tin hat as there will be a lot of confrontation. Push doctors and CAMH’s hard, we got fobbed off and DD ended up in hospital.

Twelve months on and DD is 104% wfh having gained 2kg over the last month. Nurse wants to alternate dinner time desserts between calorific (we know what these are as we have been having these for months) and not so calorific (eg fruit and yoghurt). Specific diet desserts we will avoid, ie the reduced fat/sugar type of desserts - but I was wondering what choices for these alternate days, i.e. jelly and fruit - I have no more ideas than that? Appreciate some help with this.

@D1ANA22 - poached pears, baked apples with honey, cheese (not huge amount) and oatcakes, frozen yoghurt, Greek yogurt with figs, meringue with fruit and squirty cream.