Teen Eating Issues/Disorders Support Thread 2

[myrtleWilson]

Our first thread is almost full. Here is our second - a place to seek and share advice, to lament and scream with rage and sadness, to celebrate each other's successes as we navigate the choppy waters of supporting our children with eating disorders.

All are very welcome, whether you're at the start of this journey or a more seasoned traveller.

I'll link this thread to the first one and then I thought it may be helpful if on joining this one we did a quick precis of our current situation.

www.mumsnet.com/Talk/eating_disorders/4016379-teen-eating-issues-support-thread?msgid=104736115

Thanks you Valleyofthedollymix that is really helpful. The receptionist was so adamant and I tried everything, that I would make a complaint etc. I asked to speak to her manager but she wouldn't put me through. the receptionist said "i know to you it seems urgent, but its not".
As my DS is eating a bit it makes me think I am overdoing it sometimes especially at the start of this process.

However I've done the nhs BMI check and it shows she is in first centile and underweight
Also thank you exLtEveDallas & Lougle
Girliefriendlikespuppies I'm looking up and trying to workout how I can self refer

Hi all, very new to this situation so would really appreciate the perspective of others.

We have known for a while that our 12yr old has been having some issues around their sexuality and gender identity, but we've had lots of open discussions around it and thought all was progressing ok. However, we've now discovered that she has been lying and deceiving us about how much she's eating and with all the chaos that is happening at the moment I'm ashamed to say it took us a while to realise how bad it was.

We're trying to keep a closer eye on things, but it's a real struggle to get them to eat at all. Some days, we can only manage to get them to eat a small bowl of rice. They say that it's not a weight thing - they are hungry and want to eat but just can't bring themselves too. Any advice how we can help them would be greatly appreciated - my husband and I are really worried and feel totally lost!

@SoTiredNeedHoliday

Thanks you Valleyofthedollymix that is really helpful. The receptionist was so adamant and I tried everything, that I would make a complaint etc. I asked to speak to her manager but she wouldn't put me through. the receptionist said "i know to you it seems urgent, but its not". As my DS is eating a bit it makes me think I am overdoing it sometimes especially at the start of this process. However I've done the nhs BMI check and it shows she is in first centile and underweight Also thank you exLtEveDallas & Lougle Girliefriendlikespuppies I'm looking up and trying to workout how I can self refer

@SoTiredNeedHoliday I don't suppose you have a oxygen Sats probe at all? I finally got into the system after months of trying because I checked DD1's pulse rate when lying and standing, then phoned the GP and asked them to confirm that they were happy with a standing heart rate of 144. They then said 'take her to A&E' and once at A&E triage I said 'GP sent us.'

Sometimes the only way is to present at A&E.

@SoTiredNeedHoliday DD always ate what looks like a reasonable amount - 1500 calories, for example, looks like proper eating to adult eyes. However, they need masses and masses at this age. And if she's first centile, you are definitely not over-reacting, I promise.

@Motherofgingers I'd reiterate the above advice - please get a referral through your GP. It's not something you can do on your own and I kick myself for not having done something when I first rang the GP two months before things properly got going. Is she on the autistic spectrum? I only ask because there's such an overlap with eating disorders, gender issues and autism.

Thank you @Valleyofthedollymix, I'll get onto our GP practice this afternoon. She isn't on the autism spectrum as far as we are aware, but her school has recently raised concerns about her brother and I know these things can run in families, so that's an interesting point.
We have avoided asking her to weigh herself as we're trying to avoid making that a 'thing' so have no idea if she is already underweight - though she has always been very slender. Is that something that is good to know?

Welcome mother although sorry you've had to find us. As valley said I would get onto your GP ASAP, they will probably ask re weight loss so if you have scales getting an idea of your dc current weight would be useful. However the GP should also invite your dc in for height, weight, bloods, bp and an ecg.

Is it your dd having gender issues around wanting to be a boy? I only ask as I believe it's fairly common for teens with gender identity issues to develop EDs and especially for girls this can relate to not wanting to develop breasts and a more female figure.

Well the appointment with the dietician went about as well as expected, dd was very rude to her, wouldn't engage with her at all and at one point told her to fuck off and left the room 😳😫 At least she could see what I'm up against...

I don't think the dietician was particularly surprised and said to me it's all a totally normal reaction when telling someone with an ED they should be eating more.

DD1 told a few nurses that she didn't care about their f-ing eating plan

@Valleyofthedollymix

Q to everyone - how much do you monitor phones? I hadn't realised that DD had been using My Fitness Pal to log calories and stick to under 1500 back in the Autumn of last year, when the weight loss escalated. It also turns out she follows someone called Anna Archer Fitness who quite clearly has a disorder of her own and all about volume eating - like dd of *@exLtEveDallas*.

I don't want to confiscate her phone because it feels like a lifeline to friends in lockdown. But once they've looked at food stuff on tiktok the algorithm will keep pushing it.

@Valleyofthedollymix I installed an app called Famisafe on my and DDs phone. I did it covertly as I have her phone code.... It provides me with info on her usage and alerts me to potential ‘explicit content’ but you can set words to trigger that such as diet, exercise, health etc....it does trigger some very benign stuff as well. It monitors SMS, you tube, what’s app messages and Instagram...but my DD does not have tiktok it may well do that as well. It also gives a usage report so I can see if she has used say a timer which sometimes means she is exercising. And it also has a location tracker...which is useful if they run off (as long as they have their phone on and with them). It isn’t free but I have found it quite powerful. My DD is still watching weird you tube vids of people eating vast amounts of food...

@Motherofgingers I echo everyone else. Try to get them to the GP or self refer to CAHMS (that’s what I did as my experiences with our GP practice are similar to @SoTiredNeedHoliday in that they have historically been very unhelpful - I had a cancer scare in Oct 2019 which was very badly handled and I have lost faith in them- I only use them now to get repeats for DDs olanzapine and they arranged the blood tests and ecg. But the nurse at the ecg insisted on weighing DD which was a nightmare- we weigh at home on the same day every week).
I pushed my concerns under the carpet for a while so to speak and lost valuable time.
You could start family based treatment anyway before seeing any one which basically involves 3 meals and 3 snacks a day. Basically take over all food control. Make a plan with them. And try to get them to eat. The mantra is ‘life stops til you eat’
I did not know DDs weight when I referred her - I just knew something wasn’t right.

I accidentally broke DD1's phone (genuinely - I was trying to replace the charging port that she'd knackered and missed a jumper when I took the screen off, so it tore). We then had a conversation about whether her phone was bringing her happiness (she's really not getting the idea of texting, etc., and sees every text message as an intrusion into her life). She decided that she didn't need a phone.

But she still watches rubbish on youtube on her tablet.

Just checking in... welcome gingers - Am sure, you'll find this thread a source of support - I know I really value it.

What a day - first thing DD had a good session with care co-ordinator focusing on body image - LOTS of work to do there as her poor self esteem and body issues are longstanding and ingrained. Then a bit of a meltdown followed by a good session with the IHT nurse. Meals throughout the day progressively got harder until we hit supper - which started at 7.30pm and concluded at 9pm with a massive meltdown and oodles of self harm. Hope tomorrow is a better day..

I'm sure we must burn calories with all the effort that it takes to get the food in??

DD1 said she would have 'air' for her snack today. Then, when we let them have sweets she said she only wanted 30 grams. Dinner was a mixed bag - cheeseburger eaten. About ½ her chips and all the onion rings refused. But she did have orange juice and 20mls of Fortijuice. So we scraped in with 2001 calories after tonight's snack.

DD ate some oven chips tonight without complaining! She was hesitant, but just went for it.

I need to get more carbs in her because her blood sugars keep dropping. I’ve emailed her KW and she is going to try to bring it up next week. Everything else is going ok at the mo so I’m going to try to capitalise on it.

Hooray for oven chips @exLtEveDallas!

I've just been number crunching with calories and it's all very interesting. According to the TDEE calculator, DD1 needs 1410 calories daily to maintain. So last week, with an average 1800 calories daily, she should have put on 350g ish. But she lost 700g, taking her 1kg adrift of the estimate. It just shows that you can't rely on 'calories in/calories out'. She had her period the week before last, so I wonder if some of the weight loss is cyclic.

It's a long slow slog this, isn't it?

Lougle I think in the early stages weight gain is pretty hit and miss as the body uses up quite a lot of calories in repairing all the things it hadn't been able to for ages!!

Dd did well with dinner, we had fish and chips and she pretty much ate the lot!

I'm starting to wonder about reducing her weigh ins, I think we both find them quite stressful and I'm not sure if there's much benefit to them atm 😕 As long as I'm happy she's eating enough to maintain and I'm not concerned she's loosing weight ?? I might suggest monthly weight checks and see what they say.

My DD had severe AN 5 years ago and narrowly escaped an inpatient admission. I'd definitely say go with your gut and self refer to your local ED team or CAMHS without delay, most GPs don't realise how serious things are and any delays can mean that the ED becomes entrenched. We did the Family based therapy. I'd say my DD is 80% recovered, AN always hanging around to try to get its evil foot in the door. Help your Teen Beat an Eating Disorder by Locke and Le Grange was hugely helpful - every word resonated with me when I read it and it gave me the tools to help get my DD well again but it is such a slog. You just have to take it one meal and snack at a time.

Hi everyone
I’m new - wondered if I could share my story as not many people know about my DDs anorexia in real life

In April - beginning of lockdown - it suddenly became obvious to me that 12 year old DD wasn’t eating any snacks between meals and her meal size was shrinking. Her 15 year old sister eats like a typical teenager and because we were all at home all day the difference became really obvious. I talked to DD and she made a comment about her body feeling like it wants to punish her. I instantly knew this was serious. That night she spent 2 hours crying over eating a bowl of fruit!
I googled our nearest eating disorder clinics and luckily we are really close to the Maudsley Hospital and you can make an online self referral. A doctor called me back the next day and we started online family therapy treatment 2 days later.

It’s been a long and difficult way back for DD but on Friday she got discharged. Since April she’s gone from 28kg to 41kg, and from 140cm to 148cm (she’s always been tiny)

Now that I’ve stopped feeling complete fear every day I look back and can’t believe how awful it was. I thought anorexia would be her whole life. Me and DH used to take it in turns to hide in the bedroom to cry when it was taking her hours of crying to eat a sandwich. Sometimes when meals were really hard the dog would go and sit on her lap as a silent supporter.

Just wanted to show there is light at the end of the darkest tunnels. Keep going. One mouthful at a time x

Great stories - welcome to the thread

DD1 is in a foul mood. I suggested breakfast and she said she wasn't eating it. So I said "It will be Fortijuice then..." and she yelled that she isn't eating anything today because she's angry and she's going to knock DD3 out (charming).

I'll try again soon

Thanks all, it's so good to have your perspective. I've tried to talk to a couple of mum friends in RL and just get back how they can't get their kids to eat properly either, they just eat junk. It's not their fault, I'm probably playing down how bad it's been, but what I wouldn't give to see DD tucking into junk like she used to!

It's interesting you say that @Girliefriendlikespuppies as I certainly think there's an element of that. DD says she doesn't feel like a girl, but she doesn't feel like a boy either - she doesn't know what she is. Although only 12, she started developing quite early and is clearly conscious of the changes to her body - wearing shapeless oversized clothes etc.

Anyway, we managed to get a phone consultation with our GP yesterday and she spoke to both me and DD privately. She was really nice and helpful and has referred us to a local family counselling team. GP said she's happy not to monitor weight, but prefers to do it by eye with her teen patients with ED. Sounds like she has some experience in this area - feeling a bit more hopeful this morning! Thanks for encouraging me to get help x

DD1 had a smoothie for lunch. Strawberry, Banana, raspberry, 75ml whole milk and 105ml double cream. 590 calories in 200ml. I must remember to add the cream after it's all finished in the nutribullet, though. It was so thick it was like yoghurt!

I seem to be finding that her diet is low in protein, despite cheese, milk, cream, meat, etc. I was thinking of buying some whey protein powder to add in to the smoothie?

I'm sure we must burn calories with all the effort that it takes to get the food in??
Lougle, I completely agree!!, I know I've gained a lot of grey hair that's for sure. Sometimes by the time breakfast is over I feel like I've been for a run
This was yesterday
1/2 bowl healthy cereal with almond milk
1 peach
1 piece toast with peanut butter
1 small tub greek yoghurt with sprinkle of granola
beef stirfry with rice (a good portion)
1/2 cup hot chocolate

its almost nothing......

I have private GP appointment Monday the NHS still won't give her an appointment for a week, by then we'll have all the blood tests etc back and hopefully it speeds things up.
I don't have a heart rate monitor that's accurate or I'd be doing that as suggested earlier.

This morning she wolfed down breakfast with no prodding so that was a good start to the day .

@SoTiredNeedHoliday and @Motherofgingers is it useful for me to DM you our eating plan or to paste it here? I think it's a fairly standard one - it goes in three stages (I think it's for people not eating anything but we went straight to the middle phase days 4-7 for about two weeks and now on the full three meals and three snacks).

It feels like a huge amount of food because it's easy to lose sight of just how much they need to grow. I have it printed it up on the fridge and point to it when DD argues.

You can probably google one too. They're very prescriptive and the food is v old school British so we've gone off piste a lot but it's a useful starting point.

She's eating, which is great. How much does she decide what she's eating? If you decide within her limits (e.g. she says '1 piece of fruit', if you swap out the peach and replace it with a banana, you've almost doubled the calories), then you can fiddle with the calorie content.

There is no way DD1 would have half a portion of porridge, a banana, 5 raspberries, 2 strawberries, a handful of blueberries and a glug of double cream for breakfast, but by blitzing it in the nutribullet, all she saw was 'a glass of smoothie', but it was 522 calories.

Wherever the starting point is, there will be a way of notching it forwards. But at some point you have to say 'Enough, you're not eating in a way that sustains you, so I have to take over'. It does help if a professional can start that off, though, so that you're just the custodian of the plan. I tell my DD that I'm in a team with the hospital, so we agree on the plan. Then I just get out the plan.

It is relentless. Now though, she knows I'll say 'you eat, you drink Fortijuice, or you go to hospital...' They are her three choices. Genuine choices. If she doesn't want to eat, I'm happy to measure the correct quantity of Fortijuice. If she won't do that, I'll phone the hospital.

Hi Valleyofthedollymix that would be really helpful. We've had plenty of yelling from DD refusing to eat more etc so at the moment I have said, OK lets see what the professionals as this week (i.e the GP) and we will go from there.

Lougle I think your concept of I working in conjunction with the doctors/hospital is a good one and the right way to go, plus its 100% the truth. We all want happy healthy children/young adults and at the moment this process is the only way to achieve it. Yesterday my DS probably ate about 60% of that food without being pushed.

Does anyone see their teen suffering depression due to not eating enough? It's probably difficult to tell right now with Covid and the depression of lockdown in tandem with winter. I have read that the lack of eating can lead to depression as the body can't think straight and created the needed hormones for happiness etc.

I had put the low mood to covid (it's so tough) but I think that it's probably compounded by being undernourished