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

So, my recap. DD is 17, almost 18. Since the summer we've had three periods of re-feeding required as a result of severe restriction of food (lowest point probably about 500 calories per day being consumed). We are now holding steady on a meal plan of 1800 calories per day but at great emotional cost. DD self harms repeatedly each day and is diagnosed with AN, depression and anxiety. We've had decent support from CAMHS and high levels of interventions but significant concern now is for transition to adults which will be tricky because frankly DD does not want to get better and is only maintaining because so many people are 'making' her do it.

@lougle @exLtEveDallas @TheyseeherRowling @valleyofthedollymix @girliefriendlikespuppies @scr1bblygum @lottsbiffandsmudge @sotiredneedholiday

Thank you! I've managed to get 2002 calories into DD1 today, with no vomiting!! It feels like a marathon, though, and MFP says that if every day is like today, in 5 weeks she'll be 40.8kg, which seems like very little reward for so much effort!!

I'd better recap, too. DD1 is 15 with SN. She's always been picky and has gradually dropped her weight. Lots of requests for help fell on deaf ears until I phoned the GP with her HR being 144. She was admitted on February 1st for 1 week (68% WFH), then spent a week at home. On Tuesday she'd lost 700g despite an average 1700 calories, and narrowly avoided readmission. Now she needs 2000 calories.

Last night was a disaster with vomiting taking her calories down to 990.

Today was better. A real struggle, but 2002 in with no vomiting.

Hi all thanks for the new thread @myrtleWilson !
Not posted for a while. Dealing with half term and no heating and hot water since Sat eve...
My recap. DD is 13 diagnosed with anorexia and compulsive exercise just before Xmas. Hit lowest weight at 35kg on Xmas Eve. Been under CAMHS ED team since just before then. Have a weekly v short check in with dietician (mostly as DD won’t engage at all). Been on a 3/3 meal/ snack plan since then. No real input from dietician except to provide a cal aim and she did check my first plan but then left me to it. So it’s been a steep learning curve. DD has steadily gained weight with a dip a few weeks ago when her secret exercise got even more out of control.
Rather surprisingly the ED team have allowed her to follow an exercise plan throughout (designed by her FA coach) but she had been adding secret stuff in too...I was naive and didn’t appreciate how devious the illness is. I have learnt now.
I feel a bit of a fraud on here because DD eats but she has a lot of anorexic traits around food... very rigid in sticking to plan, won’t eat at the wrong times, is constantly worried about portion sizes, calories, has banned many foods as too unhealthy/ hard. But has bizarre rules eg she eats beef but not pork because so once read that pork was the fattiest meat.
But her exercise compulsion still causes us the most issues. She has big problems around feeling other people are doing more, she will get unfit, we are trying to ruin her future etc etc. Massive flash points when her brothers exercise.
She is currently 86% wfh.
She is on 10mg olanzapine a day.

No fraud there @Lottsbiffandsmudge DD1 was on the verge of readmission on Tuesday and her food diary says "Mr Kipling slice", "Jaffa cakes", "Yoghurt", etc. The point is that it doesn't matter what she's eating or why, if it's not enough and it's deliberate, you have a problem

Oh yes, DD1 is up to 8mg Fluoxetine now. We see the psych next Thursday for review.

Hi all, thanks for the new thread myrtle

My story is dd started restricting food and increasing exercise during the first lockdown, she was then 14yo. She lost some around 7kgs over a few months, we were referred to the Camhs eating disorder team towards the end of the summer last year.

Initially refeeding went well however when dd realised she'd gained weight progress took a big back step and which we're still recovering from unfortunately.

She is now 15yo and I'm trying to get the calories in that she needs in the 3 meals a day she will eat which means relying on lots of hidden extras.

She is also under another Camhs team for ASD assessment and we're almost at the point when they'll finally give an official diagnosis.

Today's been a standard day, nothing new to report really.

Hi all, my recap:
DD is 15, nearly 16 and was formally diagnosed on NYE after restricting and over exercising throughout the first lockdown and hospitalisation on 17 Dec. At her lowest she was 39KG at 5ft6in, she’s now just over 42KG which has been a hard slog.

DD is a volume eater which means she looks like she is eating a lot, but most of her plate is salad/veg etc so she can fill herself up with fewer calories. She obsessively calorie counted throughout lockdown so whilst she is not doing that now, she says she cannot forget what she knows/remembers. We don’t hide calories, but it may come to that if her weight gain slows.

Her blood sugars, heart rate and BP have risen and seem to be stabilising, which is the best news as it means they may let her return to school in March. But that will bring its own issues as most of her weight gain is from the snacks that she won’t be able to have once she is out of the home.

Hello, I'm a complete newbie here. Our story is that DD 13 is getting thinner and thinner as she is growing (13 yrs) and not eating enough to maintain her weight. She reads all the information on the back of every food before she eats anything. She has started 'feeding' everyone in the house but she doesn't partake. I'm eating constantly when near her so that hopefully she will see that she is not eating enough, this worked a few months ago and she would join me but now she doesn't even notice. She crys and says shes fat and ugly and it breaks my heart as she is beautiful and far too thin. She gets upset with herself every night before bed, saying shes too fat.
We have a GP appointment today to discuss how we move forward.....

@SoTiredNeedHoliday many GPs don't know all that much about eating disorders. <a class="break-all" href="https://www.google.com/url?sa=t&source=web&rct=j&url=www.hpft.nhs.uk/media/1425/foi-2363-30-11-2016-eating-disorder-service-junior-marsipan-risk-table-attachment.pdf&ved=2ahUKEwi-0J73h_PuAhWHZxUIHYXwCrYQFjAAegQIARAC&usg=AOvVaw3WU_WhQvFt4qCOtQFCagr9&cshid=1613638683362" rel="nofollow" target="_blank">Junior MARSIPAN is what they should be using to assess her risk, so you might want to print that and assess your DD against each criteria, then take it along to show the GP.

Weight for Height is the measure used. It's a comparison between the average bmi for a child of your DD's height and the BMI of your DD. I have an app that calculates it, so if you want me to run her figures, I'd be happy to. Or you could calculate it by using a growth chart.

Welcome sotired although sorry you've had to find yourself here!

Your dd sounds similar to my dd at the beginning of this journey 😕 you'll need to ask the dr to refer your dd to the eating disorder Camhs service. They will request bloods, bp and an ecg, don't be fobbed off by the G.P as the longer the behaviour/weight loss continues the harder it is to recover from.

Camhs will tell you to take over all food decisions and to start feeding your dd 3 meals and 3 snacks a day, these are non negotiable and must be eaten.

Eva Musby is a good resource, she has written a book and there's lots of videos on YouTube to get you started.

Here's our story - 14-year-old DD started losing weight in the summer and her period stopped (but she'd had it less than a year so I didn't act immediately). I rung the GP in October and she told me to contact them in the NY and to watch her in the interim. She seemed to be eating a reasonable amount, just not enough in retrospect. However, at Christmas she became very weird around food and we realised she'd lost 2.6kg since I'd rung the GP which took her from bottom end of healthy to underweight.

Things got referred v quickly to CAMHS and we've had weekly meetings with the therapist and nurse. We're following a plan sent to us by the dietician and it was very hard a first but we've got into a rhythm. She's putting on weight, slowly, but supervising her has shone a spotlight on her disordered thinking. She's now just off 80% wfh and she says her period stopped when she was only about 2kg heavier (don't know if this is true).

@SoTiredNeedHoliday hope you find this board as useful and supportive as I have. I'd echo previous posters - speed is of the essence. It's possible to turn around with early treatment.

@SoTiredNeedHoliday your DD sounds v like mine. A sudden interest in ‘healthy foods’, a lot of baking but not eating, a lot of volunteering to cook evening meals (which I was happy about ), and a lot of watching weird videos on you tube where other people eat a lot or take on food challenges. Apparently all normal AN behaviours although I didn’t know that at the time.
We also used to encourage her exercise as she was an elite footballer.... I started to have misgivings around Aug time and tried to get people to understand (school head of PE, her coach and physio at her football) but because she was eating 3 meals a day everyone was happy....except me... I got tipped over the edge and self referred to CAMHS when she freaked out because I put butter on her toast one morning.
Anyway DD put on 1kg this week after very little in the previous weeks so I am hoping my clamp down on exercising alone and cutting out all the extra little walks she had persuaded me on has helped. And hiding cals in her eve smoothie...which although looks the same as before is 250 cals more as I replaced some of the milk with double cream....
I am sure it will come back to bite me at some point but I just need her weight up. She is 86% wfh now so still a long way to go...
Still a lot of issues with others exercising. She tried a pancake yest (after I swapped it for her lunch dessert) but we paid the price later with a massive meltdown.
Anyway nearly through half term and hoping to have maintained as it’s been hard to pin her down. Although the splurge on a Lego kit has helped to keep her occupied.

Had a small break through today as dd admitted she didn't think she would have developed the ED if it wasn't for lockdown. This is important not least because she is acknowledging she does have an ED!!

I'm feeling a bit anxious about the dietician review tomorrow, I'm not sure why but I worry someone will mention to dd that's she's gained weight which would cause another massive backwards step 😣 I'm sure she won't say anything and it's just my anxiety playing up!!

I can already see improvements in dds mood and thinking with the small weight gain she's had so am desperate not to go backwards this time.

@Girliefriendlikespuppies that sounds like a big breakthrough!

Today has been so hard. From the moment we talked about breakfast to the moment she ate her last snack. 1995 calories in but at great cost, tbh.

Sounds hard Lougle but well done in getting the calories in, I tended to find once a battle was hard fought but won the following day was a bit easier... Hope the same is true for you.

We had a tricky evening/night as I think dd might have another urine infection 😕 it's only about 3 weeks since her last one. She was in a lot of pain in her abdomen and lower back last night, I knew it was bad as she took paracetamol and even had a gulp of milk so could take ibuprofen as well!

Have to take a sample down to the Drs and will talk to the Dr later. Dd is also using 'I feel ill' as an excuse not eat as much 🙄

I keep think I might have spotted a couple of you on the fb page, never sure whether to make myself known and say hello or whether that makes me look a bit stalkerish 😬🤣

Lottsbiffandsmudge yes our DS's do sound similar. Mine is very sporty was a competitive cyclist, now is captain of the A lacrosse team etc. In this lockdown she hasn't been doing much exercise, actually to the point that I really struggle to get her out for a walk or some fresh air. She's reluctant as she thinks shes 'ugly' and getting dressed is a nightmare as when dressed she complains that she's fat etc and meltdown before we can leave the house.

I thought I was getting somewhere with the GP as I had to register with a more local one (long story), anyway our old GP said she should be seen quite urgently. When I called for an appointment at the new GP the receptionist said it wasn't urgent and she'd have to wait more than a week for a phone appointment..... then there will be waits on blood tests etc as well. I only wanted to get a referral really but she wouldn't even put me on the list for a call back. She wouldn't even let me speak to a different person on reception. Anyway what a deflating morning.

@SoTiredNeedHoliday I would phone back and ask to speak to the practice manager. If they say no to that, ask to put in a formal complaint. Tell them you think your DD is medically unfit.

@Lottsbiffandsmudge I'd be more than happy to say hi. I know some people like their privacy, but I only post what I'm happy to share.

That's rubbish sotired i think in some areas of the country you can self refer to the eating disorder teams so it might be worth looking up your local team and checking.

I would also keep a note of every behaviour your dd does that concerns you and calculate roughly how many calories a day she's getting. Have you got an idea of her current weight and height?

Then keep on at the Drs until they get sick of you and do the referral!!

It's so frustrating that there are barriers to getting this help when all the evidence shows early intervention makes a huge difference.

Hi @SoTiredNeedHoliday
The receptionist at our Drs surgery was quite off hand when I first called and said she couldn’t make an appt ‘due to Covid’ but I mentioned my worries to the nurse when I went in for a smear of all things and she jumped on it really quickly - DD had an appt 48 hrs later for full bloods and a chat with the doc... and 24 hours after that she was in hospital!

In your case I’d be tempted to call back and make a nuisance of yourself. Or even just turn up.

@Lougle which FB group is this? I can see a few when I do a search and you’ve all said it seems helpful.

It's the Eating Disorder Support for parents and carers UK fb group, I've screen shot their logo...

Ahh thank you @Girliefriendlikespuppies I’ll look now :)

@SoTiredNeedHoliday I don't know if it would help to have our timeline so you know what you could demand, but there are very fixed protocols about how quickly children should be seen. Although covid has scuppered that in South London.

27/12 realised how thin she'd become, spoke to a psychiatrist friend who recommended we go through the GP.
28/12 spoke to GP who booked us in for a weigh in on the 4/1 (the following Monday) and told us to book blood tests, which is done somewhere else and which we got done that day.
4/1 the weigh in
5/1 appointment to discuss with GP who said she was referring her to ED clinic.
Same day the therapist from ED run to triage her.
6/1 dietician sent us an eating plan and told us to contact with any questions
21/1 First appointment at the ED clinic with a paediatrician.

Bearing in mind this was over Christmas holidays and combined with Covid so slower than it should have been. But you can see how the (very experienced senior GP) escalated it quickly. I really would just hassle the GP's until they do it.

Do you know her height and weight? The fact that DD was actually underweight (although I don't think had lost that much weight) meant that they acted quickly.

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.