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...

@Girliefriendlikespuppies oh my gosh how awful for you. It is devastating to be let down by the people who are supposed to help. What are they proposing for the next 3 weeks. You can’t wait that long for their support. Fighting the NHS is such a hard part of this fight.

I'm so sorry to hear that, how frustrating. You must have been so geared up for it.

I have no advice on milk drinking. Haven't even attempted that.

Thanks lots and valley 💐 I had a bit of a meltdown on the phone to Camhs and they got me an appointment with the psychiatrist we saw last week.

It was okay except she couldn't get zoom to work so could see me but I couldn't see her 😕 anyway I did at least get to talk to someone. She agreed re referring to dietician and agreed that the more 'authority' type figures that tell dd she has to eat/drink the better. She also said the ASD Camhs team will sort out some cbt type talking therapy, not just about the ED but other issues as well.

It all sounds great in theory I just hope it's not a long wait for any of it!!

@Lottsbiffandsmudge I would have been very upset, too. I'm glad they're sorting something for you.

Oh Girlie how awful I really feel for you.I find dealing with CAHMs a massive part of the stress in all this.

There is an ASD team??? Nobody has mentioned that to us. How far along are you re the ASD thing?

@Valleyofthedollymix thank you. Since 7th DD has added 4 pieces of wholemeal bread per day (2 toast for breakfast and a sandwich at lunch) and since 13th a chocolate bar after her evening meal.

Between 7th and 13th there was no real weight gain (She showed a gain, but they weighed her again after she’d been to the loo and it disappeared), but yesterday’s weigh-in showed the kilo (she was 39kg in Dec and 40.9kg yesterday). She now has 3 meals and 4 snacks a day.

@Girliefriendlikespuppies I would have cried too. When DDs case worker was sick they replaced her zoom meeting with a face to face meeting with the psych. We are obviously very lucky in our area.

Scribbly dd was referred to deaf Camhs about 3 years ago (she has milld hearing loss) I honestly think if she didn't have hearing loss we would never have got an assessment 😕

So in that 3 years she's been seen by them twice and last week I had a mammoth zoom consultation with their psychiatrist. At the end of that she said dd scored very highly for ASD so should get a diagnosis. However they still want to assess her in school which will obviously hold everything up.

I think the system is so broken for assessing children for ASD, I'm amazed anyone gets a diagnosis tbh.

Considering the percentage of anorexics who are on the spectrum it’s just appalling.

There just seems to be so little understanding and there should be. It’s been evident for a while that the 2 can often coincide. I think our team is trying it’s best but the understanding and knowledge isn’t really there. I find the whole CAMHs ED set up so disjointed. We’re dealing with various people in CAMHs,GP staff and hospital staff. I still don’t know who is charge of dd, it feels as if our poor FTs have been lumbered with the job but no idea if that is correct. If you send emails to the CAMHs admin team they don’t get replied to. Our FT are the only ones who reply to questions and even then they can’t reply to all of them. We haven’t had any professional tell us their thoughts re dd. I think they’re leaning on FT and meal support to puzzle her out. Not one professional really seems to understand AN and poss ASD as a package. How can dd beat this if the professionals treating her don’t have clear procedures for children like her? How are we supposed to support her?It just feels she gets misunderstood continuously. The masking of her low mood, the inability to be cajoled, her rigidity, the sensory issues, her inability to express feelings....

Going to push for a psychiatrist appointment. She said on discharge meeting she’d see her in the new year. Surprise surprise we’ve heard nothing.

You're so right @Scr1bblyGum - my husband's niece is being assessed for ASD, three years after being hospitalised for an eating disorder.

We had our first appointment today with the paediatrician attached to the ED unit of the hospital. The bad news is that she's lost weight. I don't know how as we've been following the plan, mostly, and I'm pretty sure she's not purging.

The good news is that she's got an appointment with the therapist and to get re-weighed at the beginning of February. I don't know whether this expedition was due to protocols being followed for ED or because she's so bloody thin (she weighs a similar amount to yours @exLtEveDallas).

Other good news is that her heart is fine and she seemed to understand that the feeding plan is a prescription that the doctor has ordered and she should follow as if she'd been given antibiotics.

She was very calm and articulate. I had to pull my mask up to try to hide the fact that I was crying. I said how annoyed I was with myself for not doing something sooner and the lovely paediatrician said that's what all the parents say and not to blame ourselves.

I’m so tired I’ve barely slept more than 4 hours for a fortnight.

Sorry to hear of troubles for some of you - don't worry about a cry valley - I've done that in sessions before.

We have had as usual an up & down week. In general headbanding has reduced but we had one night in the last week with a massively scary headbang off the wall - the noise it made shocked us all - including DD. In contrast to that downward trend, distress and delusion seems to have increased - last night DD was in a state and was convinced calories could be absorbed through her skin..

That said, we had a good therapy session today - seem to be joining some dots about why is underlying the ED.

Alongside the need for control, DD also suggested a connection between a sense of inferiority and imposter syndrome. DD said that she's been "average" all through school until 6th form where she found her place and was doing extremely well. The sense of being good at something could be unsettling and that she doesn't deserve it, plus a sense that she could be exposed as a fraud. One of her recurring messages about the ED is she needs to be more sick before getting better, and that she's constantly worried if she does get better people will doubt that she was ill at all.

So we've got some homework for the next week about metaphorically trying on uncomfortable shoes, to plan to do some things that she can point to as an achievement/accomplishment and to say anorexia/eating order out loud (she doesn't do that)...

Normally after a decent session we have a regression so not looking forward to dinner and supper tonight - fingers crossed.

Valley def don't blame yourself, EDS are sneaky buggers and very good at hiding themselves until the damage is done. Dd also lost more weight when she started refeeding originally, I wonder if it's related to the metabolism bring out of whack? She did gain as the weeks went on although we've hit a bit of a wall now 😕

Myrtle your poor dd, she sounds so poorly, I've heard before that some anorexics believe calories can be absorbed through the skin 🙁 it's such a scary illness.

We're plodding on, dd doing quite well with dinner (had pesto pasta and garlic bread Ystd 😳) but still won't eat snacks or drink milk!! EDs make no sense 😐

EDs make no sense - ain't that the truth Girlie

I meant to add to my post re the 'being good at something' that DD alongside imposter syndrome and a fear that she may not turn out to be good at a-levels, the ED has convinced her it is 'safer' to be really good at not eating

Everyone seems to be having such a tough time...😢 our day was ok until DD tried to do her permitted exercise and felt too weak.... she was inconsolable and blamed the meds. I texted dietician and she does not think the meds are the issue... I just think she is physically and mentally knackered from the fight. Then we turned today into a rest day which went as well as usual...
The voice in her head beats her up about getting unfit and she gets to a point where she cannot go on. Then she does burpees until we physically stop her.
The voice telling her she is worthless, will get unfit, has failed, has lost her dreams is so strong that she tries to beat it out with her hands or a wall.... I am at a compete loss in these moments.
This is such a hard fight...

lotts - am so sorry your DD is struggling so much. You are right, it is a hard fight. As expected after a 'good' therapy session, dinner and supper were awful. In the end (after much time had elapsed) we had to hold her drink whilst she closed her eyes and drank it, shuddering and crying with every sip. I know we're not supposed to do that (the drink holding) but she just couldn't....

The voice is so so strong isn't it - it hurts me when it lashes out at me, so goodness knows what our DC are enduring. One day this will be a memory - I think we can only hold on to that thought as we plod on through the hell...

@myrtleWilson my DD plays up after sessions I think the emotional energy required is so large there is nothing left...so sorry to hear you had such a bad eve.
I just do not see how this voice will ever get less. We have no strategies for helping her with it except breathing and distraction which are impotent at these moments. I cannot imagine having such a bully on at me all the time. DD says it gets at her constantly. And as she puts on weight and tries to resist the secret exercise it just gets louder and more determined.
Has anyone else had help with this specific issue...I am not sure how merely gaining weight will help....

I hope and pray lots that the more they ignore the voice the quieter it gets - eventually. Unfortunately I think they have to be weight restored and eating well for a long time before it shuts up completely.

Myrtle tbh I wouldn't think there is any rights or wrongs in getting your dd to eat or drink, if holding the glass or even spoon feeding her makes it a tiny bit easier then don't doubt yourself just do it.

We had a minor victory tonight, dd drank two mouthfuls of milk 🙌 as a reward I allowed her to go on a short extra walk with me and the dog.

We also watched some tiktok videos of girls with autism which was fun and I hope helpful for dd understanding herself.

I do worry about what else she watches on tiktok though 😕 there's a lot of very skinny girls on there....

Purple Ella is supposed to be good Girlie.

I’ve asked DD to stay off TikTok for a while. I don’t think she was getting ED ‘tips’ or anything, but because it is January there seems to be a huge upsurge in diet/fitness/gym stuff all over. She’s unhappy about it, but understood why I asked. She gave it some thought and agreed (it’s how it works with her, if I banned outright she’d rage and still do it, but by telling her why it worries me and what I would like her to do, she feels more in control).

We seem to be doing a bit better. I’d like her to eat more, but the anxiety and rages have lessened, and the fear doesn’t seem to have as much hold - or at least I can calm her easier now. Obviously I’m waiting for the other shoe to drop, but feeling more hopeful at the moment.

Hello all and sorry for ongoing travails.

I felt weirdly galvanised yesterday, less so today. I'm generally very impatient and want quick results in life and that's not going to happen. I realise that the reason she didn't put on weight is that we're just marginally under for most meals - her snacks, for example, aren't coming up to 200 calories. Plus we hadn't been able to face the bedtime snack. On her programme, it's a couple of pieces of toast and 200ml of milk. Anybody got any good milk tips?

Lotts from what I gather, they are incapable of thinking rationally until they gain the weight. So I suppose she might not be able to turn the voice off until you manage to reach that point, but hopefully then. But I don't know, so new to this.

Our bedtime snack is a 400 cal smoothie. 100ml ff mill, 100ml ff yog, couple of strawberries, 1 banana (at least 80g with skin off) 35g oats and 2 tsp honey. Whizz it up. Makes about 3/4 pint in a tall glass. It's the only food DD currently enjoys esti g as opposed to eating because she has to. So much more appealing than plain milk and bread.... I have Hagan daz vanilla icecream which she sometimes let's me put in.... it makes it cold and v gloopy....

My DD finds it easier to drink in eve than eat as well...

Wow that's an impressive amount of calories and as you say, easier to manage than eating something as well as milk. At the moment she considers smoothies to be 'meal replacements' rather than snacks, but I'm getting there.