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 that all sounds really shit and stressful, I almost feel like your dd would benefit from an NG tube that you could use when all else fails.

My dd has been up and down like a yo-yo today, literally don't know where I am from one min to the next.

It's exhausting 😫

@Girliefriendlikespuppies sorry you're DD is so up and down. It is so draining.

Re. DD1, I have often felt the same over the years. She wants to eat, she just can't get the volumes into her. An NG tube would make life so much easier! She even said to her Consultant 'Why can't you just put a tube in my tummy, then I wouldn't have to worry about eating?' Looking back at posts from 2012/2014, she was only 81% WFH then!! I've been saying for years that she's underweight and falling down the centiles.

I am up at stupid o'clock, having a terrible night. One of my stupid cats was trying to get into DD2's bedroom because he likes to sleep on her bed, but she shut her door because he keeps her awake by jumping on stuff. He was mewing and whining and scraping her door until midnight. Now I'm just so hot and my mind is racing. I've just read my Bible in a Year plan for tomorrow though, which was good.

I'm planning to make chocolate brownies tomorrow. The recipe makes 18 brownies at 300 calories each. I might cut it into 21 instead, so they're 250 cals, as 300 might fill DD1 up too much between meals. I was debating substituting some ground almonds for some of the flour, but apparently you have to be a bit careful because you need the gluten in the flour to bind the mixture and it can be a bit greasy. The recipe only has 100g flour anyway.

Hi desperately need advice. We had another shit day on the AN rollercoaster yesterday.I think even we were shocked at how CAMHs treated us.

Our Main FT keeps missing our sessions and is unable to attend dd’s weekly team meetings. Interventions and changes in treatment they suggested happen aren’t happening. We’re getting zero advice. They said they’d be treating her with ASC in mind but don’t.We get no feedback from any of the meetings about her. We raised our concerns amidst deep worry re the team starting to say they may not let her go back to school on the 8th( she’s gcse year) as not following plan well enough or gaining.They’ve also started mentioning IP, Olanzapine but with no clear plan just vague things for us to look into and try. 🤔Weigh in Fri at hospital so cutting it fine.

FT then said they’d call a big meeting as we said we needed a clear plan ahead, feedback from other meetings and advice on how to feed her as still don’t know. They said a back to school meeting was also needed.Big virtual meeting was supposed to be Thursday morning and my sister was coming too. By 5 last night we’d heard nothing, not a time, no links in email,meeting confirmation or a list of attendees( crucial as we said we wouldn’t be discussing medication without the psychiatrist there). DD’s school had heard nothing.Our 3 bosses were on hold. I send an email asking what was going on. I get a reply saying it may happen, it may not and they may send a link some time tomorrow. Still no time of meeting in the morning.I work in a school and have no access to phone all day.Basically they expected me to drive to work, drop the children I work with after somehow working out the time of meeting by telepathy, drive back and attend meeting. All potentially by 9.00,9.30,10????We sent a strident email saying it clearly needed to be postponed and how unhelpful that was for dd.

CAMHs will be attending hospital weigh in virtually on Friday and I’m so scared about that appointment as feel I may want to rip off heads. They all band together.
I’m scared CAMHs will try and get rid of us( my dd’s school have said they can’t). I want to make it clear to hospital( who have threatened escalation as can’t keep having her on paed ward) that we’re not getting what we should but they will just cluster and say you’re getting loads of support. It all looks good on paper.

Help!!!!!!!It will be me against 9 professionals/students
and a recalcitrant stroppy dd who always makes me look crap in hospital meetings.

I should add the outcome from this meeting is likely to be a 5th admission or dd being sent home to limbo land. School don’t want her until deemed well enough by CAMHs. We can’t get the weight on with the above from CAMHs.😩

Oh scr1bbly I really feel for you - your CAMHS seem to be letting you all down left, right and centre. I'd escalate this to the team manager in CAMHS or your named Dr support - rather than your key worker.

We were in a slightly similar position as in 'on paper' support looked good. But in reality (due to stretched services rather than lack of care) we/DD were not getting the care/service promised. Before the CPA meeting we emailed saying we wanted a session at the start of the CPA without DD present (DD was aware of and in agreement with everything we were going to say but she didn't want to be present so to keep her out of line of fire so to speak). We wrote out all the bits we wanted to say, counted up appointments promised v appointments delivered, did a timeline of engagement and how DD was faring. Because we'd written out our 'lines' before hand we were very 'on it' and able to push back/refute any mixed messages coming from CAMHS side.

If you want to write out your side, I'd be happy to read it - sometimes a second pair of eyes can help - when we did it, DH did the initial draft and I edited.... I'll dig out our version as we divided it into 3 sections and see if those section heads help at all?

@Scr1bblyGum sorry so tough right now. Pretty appalling that CAMHS treatment is so disjointed and you feel stuck in this no man's land. I can relate to your sit. It sounds as though paeds are in agreement with you, that yet another admission is not the longer term answer to DDs situation, yet community treatment under CAMHS isn't helping your DD to move forward. So can you shout loudly and use one of the consultants to back you up heavily on this? Hard though it may be, might now be the time to push for an IP place for your DD to break out of this unproductive pattern?? Placements don't have to be for months and months - a few of the patients at our DD's unit have been there for 8 weeks or so just to reestablish a feeding programme again when all else has failed. ... really hope today is more positive for you.

I think you need to be the squeaky wheel. Phone again and again. Email.

I phoned CAMHS on Thursday, Friday, Monday, Tuesday and yesterday. The lady said 'oh I took your last call...' and I said 'I'm sorry, but I'm going to keep calling until I get somewhere.'

Make them embarrassed that they have no answer for you.

I've just phoned the GP again. The dietician sent a letter on 26/02 to say 'DD1 isn't managing her nutritional intake orally, please prescribe Actasolve Smoothies'. Yesterday, the GP said they hadn't received it. Today, they've said 'we only received it on Monday 1st March.' So I said 'Right, and is anything being done with it??' 'Phone back later today and see if it's been actioned.'

The pharmacy has already told me it's likely to be a special order, so could be a week until I get it once it reaches them. So helpful.

Hi all,

Dd has been referred back to CAMHS today.. here we go again! I am more informed and will advocate for her more strongly this time I hope.

@Lougle I can't tell you how many times I've thought sod it let's just NG feed dd. She got as far as a pre-op for a gastrostomy when she was 3, then seemed to turn a corner. 8 years later she isn't 'fixed' and I don't know if she ever will be.

It does seem like a kinder option re an NG tube especially if there is a learning disability thrown into the mix as well. I suppose there's a risk that they may become too dependent on the NG though and it becomes a longer term thing...

It does feel a bit impossible to get the amounts of calories in needed for proper weight gain orally though 😕

Dd seemingly in a better mood today, think she's getting excited about going back to school.

Scribbly your camhs team have been shit inconsistent since the beginning, I think I'd put it all down on paper and put a formal complaint in.

I'm just a bit deflated. We're 3 weeks post discharge and she's still got 8kg to put on before returning to school. In fact, we're still not at post discharge weight yet.

On a brighter note, I made some brownies today and cut them into 48 pieces, so that each piece is 200 cals. She's had 2 today, so we only have to get another 500 calories into her for dinner and snack.

Just when I was seeing a smidge of light at the end of the tunnel I’ve notice cut marks on dds arm 🥲

@lougle that’s a massive result x

Oh jojo that is not good at all

lougle - it took us a while to remember to be the squeaky wheel, also to use the crisis line - we kept on thinking "no, they'll be rolling their eyes at us" whereas it worked - not every time but most. And, using the crisis line almost always triggered a call from on duty CAMHS person (if not own KW) the next day. Not that I'm suggesting use the crisis line to generate contact - but it logs in their system that you needed to use it. Worried - better armed is a good description of how you go into each wave of engagement - better informed, better advocate etc

girlie - I hope easing of lockdown will help. I think it will for DD. Her KW is planning to take her out to a pub/cafe once we're into April to help her learn/practise socialising, not being self conscious eating/drinking with others, not being scared to order food/drink.

scr1bbly eve lotts - how are you doing?

DD ate another sandwich today - she says she is thinking constantly about sandwiches now and her brain is firing all sorts of fears at her - her brain/body doesn't trust her because of the multiple starvation events so is sending her messages saying "are you going to let us have another sandwich tomorrow". She's not yet got back hunger cues but she is talking positively about entering recovery. Another sandwich planned tomorrow and on Saturday, pasta with a sauce which is a MASSIVE challenge.

Hello
I wondered if I could ask for some advice?

Hi @Stilllivinginazoo of course!
@myrtleWilson your DD is really making some amazing progress!
@lougle it’s hard to have to look at all the weight in one go....it’s too demoralising, but great news on the brownie front. My DD made fairy cakes on line with her friends last Fri and hasn’t touched a single one...
@jojo sorry to hear that.
OK day here. DD has agreed to try a roast dinner on Sunday which will be the first since her brothers birthday in Jan. not sure I can persuade her to have gravy but she is committed to tryin the roast potatoes and parsnips as well as the cabbage and chicken.
She has agreed to a revised exercise plan to allow her to go to school. We will see if she can manage it. But I will be holding firm and the first crisis won’t hit until Thursday so hoping we can get 3 and a half days in before that bullet has to be bitten.
She is 89.6% wfh but honestly her mood seems so much better, she is now between the 9th and 25th percentile for weight for her age and she was always a 9th percentile baby so I hope that actually she is more near her natural weight than the wfh shows if you see what I mean. I am still aiming for more weight to give her a cushion and hopefully allow her periods to start and for some boobs to grow and more height....but I think we are seeing off some of the malnutrition effects brain wise.
She is no where near better tho. She keeps checking her stomach almist constantly and I always remember her threat that if she lost her 6 pack she would never believe a word I said again.... she won’t keep it as it was as she only had such a defined 6 pack as she was so thin...
And she is still querying the amount of butter on her toast, the volume of.milk in a cup,etc etc but she is a lot easier to live with.
We have agreed a trial of her eating her snack independently at school and all her friends are on board and will report back to their mums whi will report back to me if they have concerns. She knows that if the weight goes down she will have to stay off...
She asked me yesterday in horror if she had to get to 7 stone and I replied well yes as you are going to be a woman at some point and there isn’t that many at 7 stone! She kind of took that...

Lots how olds your dd again? My D said the same about getting to 8.5 stone as if at that weight she'd be massive!! From age 16 right through to my 20s I was around 9 stone and I think dd will be similar, it's just getting her to see that that is still a slim albeit healthy weight for our height/build.

I'm also seeing some small positive changes, it's hard to put my finger on it but dd seems a bit more like her pre ED self iykwim. There's glimpses of her anyway!! It still feels incredibly fragile though and I'm so scared that any tiny thing could set her back.

I'm so pleased for you myrtle it really sounds like your dd has decided she wants recovery.

Really positive steps, well done all of you!

I tried to encourage another snack but DD1 said she was full and tired. We're only 50 cals down on target today, though, so that's an improvement.

@Girliefriendlikespuppies DD is 13, year 9. I was 8.5 stone from being fully grown (age c 15) until I had kids. Even now I am about 9 stone 10 ( and that is up from my usual weight because of all the cream I am eating.......) and I am now over 50. She is the spit of me body shape wise but much more muscly than I ever was so I would expect her to need to be more than 8.5 stone when fully grown as muscle weighs more.
I have said to her that there is no target weight as it needs to keep going up - the curve on those grow charts is steepest between 12 and 14 and then slows down. So we are right in the part when she should be gaining around about 5 kg a year anyway!

Hi all,
Sounds like everyone is on a rollercoaster at the moment, lots of ups and downs. It’s like being in a constant state of readiness, not allowing ourselves to be too hopeful because this damn illness is ready to put the boot in as soon something good happens.

DD has had a great week - a weight gain, some fear foods tackled, a better mood, a better body temp (actually had to turn the heating down!) and is guns blazing for return to school. But I’m more anxious; my head is full, my heart racing, cannot be still. Keep thinking of all the ‘stuff’ I have to do/arrange - and stressing about waiting for other people to call me back/confirm arrangements. I think I’m hiding it successfully, but the old adage about being a swan is my reality at the moment.

So my youngest is 13,year 8
She had always had issues using toilets other than at home, always been funny certain textures
Has very high expectations of herself,not good at making friends.her brother recently diagnosed ASD,suspect she is too
She's restricted fluids to a degree always to reduce need use a "strange loo" .constipation and IBS set in aged 9. Won't take meds to keep things moving once in termtime.
Fast forward to year 7. Wasn't drinking virtually anything in school day,not eat much lunch.isnt a good communicator so I only recently found out about lack lunch eating.periods started so assumed all was well
Beginning year 8 stop eat and drink in school day.one warm day came home and down best part litre in hour.dizzy all night.rang g.p who said may have overfilled cells water.behaviours warrant rebel function/check vitamins etc.blods normal.school agreed reduced timetable and agree disordered eating.still refuse eat or drink until home.no pe or exercise except walk to and from school with bigger sister.attempts get school nurse keep eye failed as couldn't get hold of her(,2 Nd round bloods were ok)over xmas period declared hates feel bloated/full.stopped eat anything breakfast..2 weeks ago wont eat crisps at lunch anymore.no longer eats cake.wiyld rather have couple crackers lots salad and hummus/a sandwich than hot meal.if I cook I've been giving her 1/3-1/2 size portions I attempt eat variety.doesnt always eat all.never has anything after.had app eat disorder service 21 june.haf weight/height,b.p and ECG at docs last week at their request.and bloods repeat

Any advice to get us to June as feels a long way away?

@Stilllivinginazoo welcome to our thread. It sounds like your DD has gradually restricted and probably doesn't even know how she got to this place. You must be so worried.

In teens they tend to use Weight for Height rather than BMI. If you want to message me with your DD's height, weight and date of birth, I can calculate it for you. There is an Android app you can use, <a class="break-all" href="https://www.google.com/url?sa=t&source=web&rct=j&url=m.apkpure.com/instant-weight-for-height/weightforheight.geneticdigital.co.uk.instantweightforheight&ved=2ahUKEwi_xJOjzZjvAhWPgVwKHfuFA-cQFjACegQIGRAC&usg=AOvVaw3CHQiZtWvqfCaLsvXLqi6K" rel="nofollow" target="_blank">here but you have to allow applications from unknown sources in your phone settings to install it, because it's an APK file, not a playstore app.

Don't wait until June to give your DD the help she needs. The first thing the eating disorder team will tell you is that she needs 3 meals and 3 snacks per day. The key to recovery is weight gain. It's that simple. The medicine is food.

If she was admitted to hospital, they would start with what she's eating now, then every few days step the diet up so that she reaches about 2000 calories per day. Ideally, 2500-3000. Animal fats (cream, yoghurt, whole milk, cheese, etc) are essential to repair her brain.

It's a hard slog, but it's the only way to fix her.

Thanks for quick response
She has a milk allergy to complicate matters.ive stopped buying rice milk as lowest calorie and protein.she has soy or cashew mostly(barely has any,I'm trialling the cartons strawberry soy milkshake)
Stupid question how do we get her to eat?she will say I'm not hungry and flounce off slamming doors if I suggest eating anything..

There is a Facebook group called 'EDS UK' that's worth joining. Ultimately, you have to be a bigger pain in her butt than the ED is.