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

@Lougle jazz hands for a poo. Glad the olanz coming up trumps again. Can't remember on the mood front, has DD been prescribed an SSRI yet? If not is that the plan? I know increased wfh is the key to unlocking some of those happier emotions but until you're at that point, cld it be a means to an end?

@SotiredNeedHoliday sorry you feel things are at this point. Once a decision is reached to apply for an IP bed, we found it still took some time to happen unfortunately.
2 types of admission - planned and unplanneed.
Planned - the process was CAMHS bed coordinator puts out feelers to locally commissioned Tier 4 units ( all about funding of course- we were keen to look out of catchment to a younger age unit but in practice v difficult to get...) and your DD wld be invited for an assessment ( 3 hour) with the ED team there. If they felt it's an appropriate placement for your DD they'd put her on their waiting list and offer a bed as/when available.
If however in the interim you reached crisis point and needed help faster a call cld be put out for an unplanned admisdion which wld potentially mean taking a bed anywhere in the UK.
Obviously planned is a better option if time frame isn't critical because its so important being within a reasonable distance for home visits which become a huge part of the treatment process.

Happy birthday to both birthday girl DDs here. As others have said, just got to keep hoping that the next one will be (closer to being) ED free and full of cake.

Yesterday for us fairly shitty. Felt like endless stress and obstacles in our path School girl error from me. Driving DD in to school for 10am and forgot the damned snack. Luckily squalid newsagents en route came up with the goods ( yazoo and custard creams) but DD v upset & threatened not to eat any of it because it was so grim in there.
Bigger upset came later over tea. Clamied I'd lied about choice of meal - spag bol' ( I hadn't) so meltdown and refusal. Finally agreed to have a diff replacement meal. Transpires she was v nervous about her first girls' footie team training session - worried nobody would like her ( she knows most of the girls by sight at least) ; wearing shorts was difficult, kept screaming at ne to stop looking at her ( would I dare?)etc etc. She used to get reslly excited befote sessions so sad to see it all become yet another source of anguish for her. Hoping nxt time the nerves will be less. She's also becoming quite paranoid about marks on her body, in particular a scar-like line on her thumb which she's convinced is cancerous and insisted we make an appt for. So gp with dermatoscope booked for Easter hols. Am certain it's nothing but level of preoccupation with it is concerning me.

Dd has put a kg 😲 that takes her to 55kg!! I remained poker faced with dd in the car but did a little happy dance in the car once I had dropped her back at school 😁

That might explain the small cognitive changes I'd noticed around her feeling hungry and relaxing slightly more with snacks.

Obviously still miles until 'normal' but a step in the right direction at least. Dd was very keen to know her weight in the car, I just said it's okay and that she was obviously eating at school so that was good as meant I could trust her a bit more....

Roo sounds like your dd is just really anxious about everything 😕 I think all you can do is keep going. I suffered with pretty bad anxiety as a teen to the point I could barely leave the house and it was grim. I did find things like affirmations helped (I used to whisper 'I am safe, all is well' to myself a lot!!) and guided meditations when I was going to sleep on audio.

Lougle God that olanzipine is good stuff!!

Thanks Roolet12. We had a private psychiatrist appointment today as Camhs has not gone that far for us yet, she has basically said we are in the hands of the NHS if they will admit her or not.

We've been trying a basic meal plan for over a month now of 3 meals and 3 snacks and can't even get the meals all eaten, in this time shes lost 1.5kg and is down to 33.5kg, below 1% of population for BMI. Lougle I can't do the WFH calc maybe when you have time you can let me know? She's 157cm tall and August 2007 birthday.

what are the criteria for admission that NHS uses now while demand is so large?

She tells me she wants to die, she hates herself and can't see any point in life. She also remains adamant she has no problem with eating and is fat and ugly.

It's heartbreaking. I don't know what to do.

We have a camhs physical tomorrow

Ooh missed @exLtEveDallas DD - happy birthday! 🎂🎁🥳

@Roolet12 Sorry your day was so awful. It's horrible. DD1 is on a low dose of fluoxetine, but the Psych didn't want to change too much at once. She's said she may increase that on Thursday.

Great weight gain @Girliefriendlikespuppies! You're on a roll.

@SoTiredNeedHoliday she's 70.91% WFH now. Sorry it's so rubbish. In terms of criteria, it tends to be about physical safety in the first instance. So although DD1 has gained 1 kg this week, the Psychiatrist was mentioning readmission because her mood was so low, she was refusing meals and her blood pressure was dropping when she stood up. Longer term IP units will have their own criteria.

The change in DD1 is just amazing when she's on olanzapine. She's had 0.625mg today. A bit of a faff, because I have to take a 5mg tablet, dissolve it in 20mls water, then only give her 2.5ml. But it's worth it, because she's not too sleepy and she came downstairs to ask me if it was snack time earlier. Yesterday at snack time she told me I just wasn't getting that she didn't want to survive.

Busy day today. I have a call booked in at 12pm from the Young Carers organisation to get the other 2 girls some support. Then i2i coming at 12.30pm.

Thank you Lougle Physical safety must take into account their mental state then? And she's certainly not in the realm of reality at the moment.

Sorry all that I am being a bit self-centred at the moment, I'm finding it really really tough.

@SoTiredNeedHoliday do NOT apologise. I can totally relate to your level of stress and anxiety here. I'm no WFH wizz kid like Lougle but did a calc that I think wld place your DD at 70.8% wfh assuming a birthday mid Aug and 33.5kg as today's weight. A median weight for her height/age wld be around 47.3kg. So she is at a v low level I'm afraid and I'd imagine would def be eligible for IP admission v soon ( be it general ward initially or straight to specialist bed) esp if there is little prospect of her eating improving at home. In DDs IP unit they liked patients to be on a wheelchair doing no activity/ walking about at 70 or below.
Its no wonder her mood & cognitions around being ill are so distorted. Her brain is clearly going to be v starved at this level. Once she hopefully gets some more intensive support you'll see a marked diff in her mood, I'm sure. I know its incredibly heartbreaking hearing her say those things but that will change in.time, I promise. She just needs much more intensive help by the sound of it. Hang in there and take one day at a time.
Good luck with CAMHS appt - if they note physical concerns you'll be sent to paeds and the process will go from there. If necc they'll look for a bed whilst she's in gen ward & if anything that shld speed things up.

@Girliefriendlikespuppies fab weight gain. Cream rules.

@Lougle olanz got us out of a hole too. Its a b good drug! If eating resumes upwards path & mood benefits, you may not even need higher dose of fluox??

About to collect DD from school. Hoping she's managed her P.L. ( at least I remembered to bring it today!)

Oh bless you sotired don't apologise, it's totally understandable you're struggling your dd is really unwell. Remind me if she's on any meds? What is she eating generally in a day atm?

Lougle I reckon with the olanzipine and weight gain you won't need to increase the fluox and in fact your dd may not need at all if the food starts going in.

I2i is done. Absolutely exhausting sitting there analysing DD1's emotional responses. I didn't have to do much, but DD1 was so flat. Lots of 'don't know' 'shrug', etc.

@Lougle that's always tricky when they won't say much..my DD is the same and often looks to me while speaking so I have to try really hard not to talk for her. Maybe when she's more fam with them she'll open up a little? ( or a word or two more in my DDs case@)

Might check out Young Carers thing you mentioned. Was it helpful? I worry about DDs sister sib - she's the only one who (thankfully) hasn't had an E.D so it's been tough for her in many other ways..

DD managed her first lunchtime at school today. Ate most of what was in there which, within time constraints, was pretty good I think. Round 2 tomorrow.
Brought her straight home from lunch there, only to be screamed at and called a "stupid prick" multiple times at the top of her voice. My crime? I'd washed a jumper she's worn almost continuously since being discharged. Anyone else find their DDs get obsessed with certain items of clothing ( & wont even take them off in bed?) Am sure it's an A.N, safe thing..

@Roolet12 shame on you for promoting hygiene! The Young Carers group is in Winnall, Winchester. They have a primary group, a y7-9 group and a y9-12 group. They do a exploration programme, which helps them to explore their feelings/experience of being a young carer, and activities.

Oh God I think I might have overdone the calories in dinner tonight as I feel really ill like I might actually throw up 🤢 dd did well with it though (really hoping I'm not coming across as smug, am fully aware it could all go to shit in an instance!!)

Roo your dd sounds a bit like my dd with regards to clothes!! My dd wears one outfit outside of school, t.shirt, leggings and a hoody. She gets very upset if I dare wash them or haven't washed and dried them quickly enough 🙄

My only neurotypical child has done a lot of work with Young Carers over the past year or so. It is hard for them sandwiched between two siblings with high needs and they’ve found YC really helpful.

@Roolet12 I have exactly the same with the clothes he would never get changed ever if it was up to him! Gets upset when I wash his bedding too.
@Lougle how do I work out wfh % if he’s December born 163cm and 40kg?

So far intake has been exactly the same as yesterday except he ate less of his sandwich. I’ve bought some Oreos and ice cream as he used to love milkshakes ‘Krushem’ style so I’m hoping that will tempt him shortly.

@NelleBee I've given him a mid-December birthday just for the app (it requires a D.O.B). He's coming out at 82.63% WFH.

You have to bear in mind a couple of things:

1. A lot of Eating Disorder Teams won't allow children to attend school below 85% WFH.
2. Every day he gets older, even without growing, his WFH will drop, because the curve goes up with age.
3. The WFH calculation assumes a median (50th centile) height, so if your child was on a higher height centile, it will over-predict his WFH (he'll seem less underweight than he really is).
4. If he grows and stays the same weight, that's as bad as staying the same height and losing weight.
5. Rate of weight loss is a bigger factor then absolute weight for height. The human body doesn't do well with rapid changes in weight in either direction.

You can work it out manually, but it's quite a faff.

Olanzapine for the win here: 2259 calories so far today, with dinner +/- evening snack to go.

I do make myself laugh. 'A couple of things....' followed by a huge list.

I didn't know that Lougle that wfh is based on a 50% centile average (although that does make sense!) Dd has been on the 75th centile her whole life (apart from the last year obviously) so I'm guessing will need to go a fair bit over 100% wfh 😕

So because he’s always been very thin his body is probably used to it a little. I think he definitely got taller without gaining much weight as he was a couple inches shorter than me last year (I’m 162cm). 40kg is the heaviest he’s ever been but I’m sure when he was last weighed at CAMHS which was probably about 18 months ago he was 38kg and a few inches shorter and they were pleased as he had gone up from 37kg. He looks much thinner now, I can’t even get trousers for him that fit in both the length and waist. I guess because he got taller.

I think what has got me much more worried than I used to be is the way he talks about food now, whereas before he just had a small appetite and was fussy now he says he doesn’t like the feel of food inside him.

When he was born he was 9lb2 and on the 91st percentile, within weeks he dropped to the 9th percentile where he pretty much stayed. He never even wanted milk as a baby, never cried for it, I used to have to set a timer for every 4 hours when he was a tiny baby because he would easy go all day without a murmur. He was always around 75% percentile for height, not sure about now though.

Yes, he's in exactly the same situation as DD1 and if it reassures you that you're not making a fuss, DD1 is seeing lots of people.

There is some evidence that there is a genetic link with AN, so losing weight for any cause, whether under nutrition or illness, etc., can trigger Anorexia, rather than Anorexia causing the weight loss initially.

Yes, I’m worried people will think I’m making a fuss over nothing. When I’ve brought up being concerned about his weight in the past I’ve always been told he’s within the healthy range. Last summer I took him to the GP because we found he had a lump under his jaw line and I thought he had lost weight. Turns out he has a Ranular cyst which needs to be surgically removed but the surgeon can’t operate until the paediatrician says his heart is ok, and that’s taking ages. But they did do bloods which they said were fine except he had low ferritin so the GP told me to feed him red meat despite me telling him he was vegetarian (he’s no longer vegetarian fortunately).

Hello. I’ve just come across your thread and am new to Mumsnet but really looking for a community to share thoughts and get advice about my daughter’s ED. Hoping this is the place to find some support.

Hi @Spring3 welcome to the thread. Just jump in - there are no rules here

Welcome spring although sorry you've had to find us!

Yes, @Spring3 I’ve only been here a few days but have found it very supportive. Got a much clearer idea of the steps I need to take.

He ate a breaded haddock for dinner so that’s something I guess.

That's great @NelleBee

I was in a hurry earlier. I just want to reassure you again that you're not making a fuss:

DD1 (15) is 41.4kg and 165.2cm. She is 75% WFH. No clear diagnosis, but she probably sits somewhere between Anorexia and ARFID, with depression. She is being seen weekly by a psychiatrist and weekly by 2 home intervention workers. Even with her 1kg weight gain this week, the psychiatrist wasn't happy because her obs weren't good and her mood was low.

For context, DD1 was discharged by the Paediatrician she had been seeing since she was 3 in January 2020, despite her low weight. She was then seen in August 2020 and sent home. CAMHS weren't too interested. We were seen by a dietician a few times, who tried to refer to paeds with no success. It was only when I phoned the GP and said 'her heart rate is 142 when she stands' that we were sent to A&E and she was immediately admitted for 9 days.

Our kids will fly under the radar unless we flap our hands until someone notices or it's too irritating to ignore.

Thank you 😊