teen eating issues support thread

[myrtleWilson]

Hello,
would anyone be interested in joining a thread to support each other as we support teens with eating disorders @MNHQ - I'm tagging you in as am conscious of triggering issues and wanted your ok/ground rules to such a thread..

Happy to share our story with DD if others would feel it is helpful...

I'm worried the psychiatrist will suggest meds for my dd as well, I'm really not keen as I had a terrible experience with taking anti depressants a few years ago 😕

Not that we've even been offered an appointment, I'm going to ring to chase today, we've not had any support from anyone for nearly a month now.

I find the constant ringing and chasing people really tiring, even before the ED I was trying to get a ASD diagnosis so have been doing this for years now.

That's good your dd had a small gain Bella she will kick off but it's just the anorexia showing itself. I don't know if you've seen Stranger Things? I liken anorexia to Will being possessed by the alien, you have to make conditions so uncomfortable for them that the ED has nowhere to hide and eventually leaves. It's bloody horrible to see how distressing it is though.

Oh @DayB1Day that sounds horrific! How do you even cope with that? I hope she has a better day today.
@myrtleWilson just wondering which team you’re under and which hospital. We’re in Durham.

@Bellabluea snap! Acley in NA for CAMHS and stayed on treetops twice...do PM if you want to chat more re people/teams!

@myrtleWilson we’re on treetops! The staff are lovely mostly. It’s very medicalised though. A lady from the ED team called Rachel came out yesterday and she seemed pretty good.

Hi @DayB1Day - DD was hospitalised mid August, at that point she wasn't formally under CAMHS (it was at her assessment appointment that they made the decision for immediate hospitalisation). She was in/out of hospital till mid September. So has been under medical support for 3 1/2 months.

In terms of therapy, she had 2-3 individual therapy sessions between September/October, then that person left, then her care co-ordinator took over individual therapy, one session has been had but she is now off work. Our new care co-ordinator is also our meal support worker and will also pick up individual motivational therapy which she'll have once a week. We don't ask DD about the motivational therapy as it is her space but I know in her one of sessions they did a timeline of her restricted eating/self esteem.

In terms of meal support, we have one person coming once a week for a really difficult meal (dinner in our case) and another nurse coming once a week for one of the other meals.

Meal support nurse basically sits with us as DD eats and talks/distraction but will use different methods of encouragement, reminding DD what the ED is doing and how we're taking over control and will obviously be observing her body language etc.We don't eat with Dd as she needs constant support and distraction and the anger outbursts would mean we'd never finish our own food so her meals are solo. I can't wait for the day we can all eat together again..

The first dinner we did took over 1 1/2hr and so one of the challenges the meal support nurse will be doing is to speed up eating. DD eats very slowly because the ED tells her if she eats quickly she is either being greedy or it is a waste of calories as she ate quickly.

DD's response to the nurse was different than her response to us - she stalled and got upset but didn't have the rage/self harming response she's had with us so thats interesting - and thats something we need support on. The nurse said the support she was giving was at the upper end of what was needed.

@Bellabluea I don't think we've met a Rachel yet but all of the team have been good. If you're at Acley centre for weekly observations we may have to have a MN code signal to see if we can spot each other!

In terms of the tube feeding at treetops - we actually opted for it at one point as DD was in an ever decreasing cycle of not eating, getting more tired, being too tired to eat, not eating, obs getting worse... So with DD agreement we asked for the tube as we felt it would give her a cognitive boost & some energy to be able to eat by herself (which it did in fairness), so whilst at the time the tube feeding can feel like a dreadful step backwards, actually in can be some respite. My analogy on this board is ED is like a game of snakes and ladders - I thought the tube was a snake but actually was a short ladder....

DD has had her appt with consultant today ahead of case review tomorrow. She (consultant) is advising meds too for her low mood - similar messages to yours @DayB1Day - not able to tackle ED without an uplift in mood. We're talking more tomorrow but would be interested in sharing notes....

Hello everyone
it sounds like most of you have had a horrendous week.
I think most parents are reluctant about medication - the only thing to remember is that a brain that is nutrient deprived is not functioning well at all and since the gene for anorexia is linked to the gene for schizophrenia it may explain why these patients can hold onto these very fixed ideas that are so obviously not true.
Hence, if a drug can stop you believing that you are the son of the devil, it can also probably stop you believing that you are not deserving of food or care. Antidepressants can boost neurotransmitters so help brains start to function again.
The drugs are scary but so is Anorexia and the drugs can help quieten down that voice inside the head that says 'don't eat you stupid bitch'.

We only had antidepressants and had to increase to dose. They seemed to help I think and I am glad we started them. They take 2 weeks to kick in at least so bear that in mind when discussing delays.

With meal support - we didn't get that and I would have loved it - my DD was better in front of others and it would have been nice to let someone else shoulder the hatred and anger.

If it makes you feel any better, there is light at the end of the tunnel, my daughter told me that she loved me this morning!

Hi all. Sorry lots of us are struggling. I had the worst birthday ever with near sectioning of Dd because she wouldn’t consent to the tube. They had a social worker and 2 drs trying to get her to say yes. In the end she only consented because I got upset (I never cry around her usually) and she wanted to please me. It goes against all of my parenting instincts and broke my heart to take away her autonomy but actually afterwards she seemed quite chipper and drank half a carton of chocolate alpro. Almost like well they’re going to make me eat I may as well have stuff I want.
She’s been in 8 days and hasn’t been to the toilet for a bm then tonight she text me all alarmed like ‘mammm I think I need a poo what do I do’🤣
It’s a good sign. Means things are starting to function again.
So shit birthday but hopefully we’ll turn a corner.

@greygirl the light at the end of the tunnel is really helpful as right now I feel like we're in a subterranean trans-siberian tunnel. I didn't know that about the genetic link - we've been watching some Louis Theroux documentaries with DD and one on MH was interesting... And whoop x thrice for 'I love you'

@Bellabluea - gosh that all sounds so difficult, do hold on to the point about cognitive debilitation - I saw a difference in DD within a couple of days of her having the tube. GOD the toileting issues with ED's - we appear to have a mini Boots worth of different medications including a load of picosulfate/Senna/alternatives. When we were on TT ward, DH was on night duty the day DD's toilet-ing meds kicked in. I was quite happy to have bypassed that shift!

@DayB1Day wow you’re all going through it aren’t you! We’re also going down the to medicate or not medicate route today so it’s helpful to read your perspectives.
@greygirl that’s really interesting re the gene link. I’m a scientist so I like to read up on it all, I’ll have a look.
Does anyone else get scared for their other children? I have 4 daughters for my sins 😂
My eldest is 22 and in a graduate job, bought a house with her boyfriend, couldn’t be more put together! She has a different dad though.
My younger girls are 9 and 10 and full sisters of dd17. I’m trying to be honest with them but not scare them. Dd(10) had no issues body wise and is very happy and confident but I’m pretty sure she has ARFID because she eats about 4 things. She’ll eat a whole pizza if it’s the right one! Or a whole bar of chocolate but only if it’s galaxy. It’s definitely a sensory thing with her but it scares me.

Popping on to say hi and wish everyone well, although I feel v conscious these days that I've got off relatively lightly with dd2, who has never needed hospitalisation and was eating 800-900 calories a day at her absolute worst (but working out like a dervish)

She's been given the (tentative) go-ahead to return to school full time on Monday (just in time for mocks, which she isn't delighted about!) I'm very apprehensive because she's actually not quite at the weight she should be for this milestone, and because I'm far from convinced she'll be able to eat lunch and morning snack by herself

Therapist is letting her spend break and lunch with her friends, who are well-meaning and will encourage her, but I think she'll find it hard Anyway, hey ho, we'll just have to see how it goes

Bella I would be scared too if I had younger dc Dd's older sister is 17 now and has been eating well since Feb but I'm constantly watching her like a hawk for signs of relapse

Somebody downthread mentioned that lockdown had made everything worse, and this is very much the case for dd

We've just had a heart-to-heart about it all, and she said lockdown made her forget what was normal - when she goes into school now she is shocked to see kids casually snacking between lessons because she has lost touch so badly with her 'before' self

She needs her friends as a touchstone and a reassurance, and I'm so sad that she can't have that (and distinctly miffed - we're in Tier 2 despite being in the lowest few percent of the country for infection - and nearly all of that is 30 miles away on the border with a neighbouring authority)

Wow Bella that sounds really difficult re the tube, I wonder if your dd relaxed a bit once it was done as it was probably her worst nightmare and she realised actually it was okay?! Definitely progress if bowels are moving!!

Day that also sounds really tough re the meds, fwiw I'd be the same re the reluctance to use meds. I think teens brains are vulnerable and Id be very anxious about giving them to dd. That's interesting re the link to schizophrenia though and does kind of make sense when you think about how strong the ED 'voice' is.

I'm the same they I'm aware that compared to others my dd has also been relatively less affected. At her worst she was also having around 800 calories a day and in total only lost around half a stone (although was slim to start with so def didn't have any weight to lose.) At her first ED assessment she was close to being admitted as her pulse was very slow but we did avoid admission.

I feel now we're in a sort of no mans land where dd will eat enough to not lose weight but not enough to gain weight and she is still very controlled around food so would never eat more than she has to.

We have been given a date for her ASD assessment with a psychiatrist though in Jan so that's something.

We're back from CAMHS review and with an additional diagnosis - anorexia and depression. So we're going down anti-depressants route too. Frankly if we can't get a handle on depression then she has little chance of managing to tame the anorexia. The consultant did also say that if weight loss trajectory continues and the existing intensive community based support we're getting (therapy for DD, therapy for family and meal support) isn't doing the job then residential unit may be next step.... So next 6 weeks will be crucial...

they - fingers crossed for the school return and hope the mocks are okay - will the school accept mitigation in terms of performance if needed?

girlie Does your DD still have fear foods or will she eat a range but chooses not to?

Day - Hope the start of the meds go okay

bella hope DD is doing okay this morning? We only have the 1DC so can't offer any advice but I doff my cap to you parents of multiple - I'm struggling with parenting one through this - having the energy to parent others too seems heroic (I appreciate you don't have a choice though!)

Myrtle my friend had anorexia when we were teens and going on ADs was a game changer for her recovery. I really hope they help your dd as well. Dd is in a pattern of eating her meals and snacks but will not eat outside of these times and will not increase the quantity of them either. I can't see her gaining weight at the moment, her main fear foods are crisps, chocolate including chocolate cereal and hot chocolate and sweets/fizzy drinks. She is more likely to eat something if she perceives it as being somewhat healthy 😕 so will eat flapjack but not chocolate cake iykwim.

Enjoy your wine and chocolate day 🍷 🍫

Thats great news @DayB1Day - long may it continue!

How are you getting on @Bellabluea?

Not much to update here - on day 2 of the AD's (taken every other day) so too soon to have any discernible impact. We went to buy a Christmas tree today and will decorate it tomorrow. Never usually have a tree up this early but what with the ED and Covid we thought we'd take some joy and fun how and when we can!