Support thread 12 for parents of young people with an eating disorder

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Suddenly noticed the old thread is almost full and thought I'd make a new one.

@guineapigsrule sorry that you find yourself back here. My thoughts are that you will be better equipped through your own practical experience and observations to deal with this now.

We are in a similar position, I am sure DD17 has lost weight and has missed a period this month - I cannot get to weigh her and she wears baggy clothes constantly - as you say I don't believe the thoughts have ever left her.

Take care of yourself.

Thanks @Nomoreplease23 that's a good way to think about it. I'm ahead of the game to some extent.

Take care too

How is everyone?

Not having the best of time. Hanging in there... how are things at your end? Is he still eating @WoodenTrain ?

@WoodenTrain hi we’re ok at minute managed to speak to ED team and they have sorted for my DD to see another lady on Fri and me and my husband are going to see the lady my DD doesn’t get in with and someone else to discuss moving forward so my DD is very happy with that. She has met the other lady before and seems to like her. How are things at your end?

@Mumofellie That's great news! Hope the new counsellor makes all the difference. @WoodenTrain - how is your DS?

@Curlyhairedassasin Sorry you’re having a hard time.
@Mumofellie Glad you are getting to see some one new, hopefully they’ll be a better fit.

Not really sure what’s going on with DS. He had a few days of eating way over his meal plan, I think in an attempt to make everyone go away. This brought concerns about refeeding syndrome with him suddenly eating so much but he refused any observations or bloods so it’s just been a case of keeping a close eye on him.
However, the past two days he’s gone back to restricting. Not really sure what’s he’s thinking/feeling as he’s not talking to me (or anyone)

@WoodenTrain - it's so hard. I found the extrem up and downs in the early days mentally a lot harder to cope with.

DD is eating but not the full meal plan. she is maintaining a weight high enoigh to attend school full time. but not gaining at all. Mood extremely low a lot of the time. And now SH started. We increased meds recently but no effect. do increased again now.

For those with DC on ADs? Which ones are you on? DD is on Sertraline (alongside Olanzapine). I don't think it's doing anything for her mood. Anyone having experience with a different type?

@Curlyhairedassasin so sorry your not having a good time at min hope things get better soon.

@WoodenTrain ow bless ya I really hope things change soon for u what have the ED team said??

@NanFlanders thanks me too she’s met with her before a couple of times but she’s new and doesn’t really say anything but my DD goes in to the app and always says hello to her but she doesn’t anyone else so I’m hoping that’s a good thing 🤞 she gets on with her and she feels she can talk to her

@Curlyhairedassasin DD on Sertraline and has found it miraculous for mood BUT she has to go up a couple of doses to get a therapeutic effect. She started on 50, but is now on 100. You can go up to 200 though. She has also taken fluoxetine, but that made her a bit manic - stayer up all night studying and had strong urges to self-harm. Everyone is different though - I found fluoxetine very helpful for depression myself and didn't have any side effects.

Thanks nan, it's good to hear. We started on 50 and been there a long time. Then 75 and mood got worse. Recently upped to 100. Maybe we haven't just reached the sweet spot yet! Psych said 100 is a standard dose. Hopefully we will start to see an impact on that. I just feel so helpless.

DS also had issues with SH on Fluoxetine, which is why it was stopped.
CAMHS are currently suggesting Mirtazapine but he’s refusing. Mirtazapine increases appetite and weight gain is a common side effect.

Wooden** have they suggested olanzipine for your ds? That can really help with the intrusive thoughts and voices that come with anorexia. It sounds like your Ds can manage them for a few days but then they get very loud again which is why he goes back to restricting.

Hi, could do with a hand hold really. Currently on the precipice of a relapse with DD. I think in hindsight she's been showing signs of it. It reached a peak this past weekend. She refused all evening snacks and went to bed without her Olanzapine. The following morning she refused breakfast and morning snack, using the same excuses as she did at the start of the meal plan (have brushed teeth/it's too late etc etc). And this morning she has said she will have fruit only so she can build back up to the plan, but then has walked away without eating anything.

DH and I are completely spent. We've been through so much and it's like the last couple of months never happened. DH is on the verge of a nervous breakdown.

Has anyone else been through a relapse? How the hell do we handle it? We're so broken and exhausted. I'm waiting for a callback from her care co-ordinator but I'm so scared, both for DD and DH. And me. I swear if anything else happens I'm going to have a stroke. I'm so desperate and so sad.

Our Camhs have said that they will only very rarely consider olanzapine for inpatients and never at home. Is that not the case everywhere? I was prescribed it when I was treated for anorexia decades ago, so I asked Camhs. Mind you, Camhs won’t even prescribe melatonin for DD’s sleep (we have it prescribed by a private psychiatrist)

You poor thing! We went through this with dd a few weeks ago, thought she was going to be admitted to hospital after everything we’ve been through at home. She did turn it around though and I’m not quite sure why.

I think all we can do is keep reminding them that the choice will be to eat the plan at home, or eat it in hospital.

I hope they calm you back and can give some helpful advice.

FBT is so hard on families, I think going back to basics and not letting them take control in a relapse is all we can do, sometimes though it isn’t enough and it’s so hard when you’re burnt out and exhausted.

Did your dd just walk away? What happens if you serve her food and sit her at the table? Obviously not physically restraining her but being extremely firm?

Here, dd is eating the plan but there is so much pushing of boundaries with food and exercise. She tried to do week 1 of couch to 5k (she was allowed to do that once) and got half way before collapsing with chest pains and feeling faint, so she is very upset that she will likely be told no running when she sees Camhs tomorrow.

Olanzapine seemed to be the standard prescription under our service. My DD first hid it, then refused it, but I know others on here have had amazing results with Olanzapine. DD was also prescribed (but also refused) aripiprazole. I don't know why your CAMHS wouldn't consider it - its well-evidenced.

Olanzapine hasn’t been suggested as option. But DS has agreed to try the Mirtazapine - if that doesn’t help I’ll ask about Olanzapine next.

Anecdotally wooden (this thread and various fb groups) olanzipine seems to really help the autistic teens, maybe because their thoughts are so strong and they can be quite black and white in their thinking. I'd definitely ask about it.

@SicilianOrange I'm sorry to read your message. We're in relapse too after a couple of stablish years and it's devastating.

Thank you @guineapigsrule and @WaitingForMojo
It really is devastating and she was doing so well. I feel like maybe she went too fast or something. But then really it’s probably more likely in a moment of weakness she’s looked at TikTok or something.
Ive spoken to her care coordinator and she didn’t seem overly concerned but she doesn’t have to sit there and look at DD’s blank stare. :(

Oh and @guineapigsrule i hope your DC comes through it soon too

Sorry to hear about @guineapigsrule @WaitingForMojo and @SicilianOrange about your DC relapse. I am not sure whether we are having a blip or this is a relapse? DD’s routine has been she eats her breakfast at home (cereal), buys a meal at lunchtime in college and usually a frappe and a biscuit (how much of this she eats we don’t know) - has a snack when at home but has started to only eat 2/3 of her dinner, always starting with the veg and meat, it is the potato / pasta / rice that is left over. Sometimes she has a snack in the evening. Recently I have noticed her eating less and I am sure she has missed her period this month. She was WR in September 2022. We don’t talk about food, DH buries his head and doesn’t see (or is not as alert) as I am, or am I too sensitive? She hides in baggy clothes and we don’t weigh - she is 17 now, what should we do - and what powers do we have now she is 17 and discharged from the ED service (since Jan ‘23)? I am very concerned, how do we go back to 3 plus 3 when she is in college now and quite autonomus, what do those with older DC’s do?

Oh gosh it’s so hard to know where to turn. I know my email to CAMHS sounded very desperate. Did you have any decent contacts with the service when she was under them before @Nomoreplease23 ? I wonder if you could get in touch with them so they could point you in the right direction?

I’m sure someone will be along soon with more appropriate/accurate advice but I know how lonely it feels so I didn’t want to read and not respond.

It’s good that you’re alert though, you know what you’re looking for. I’m sure that will help.

Thanks @SicilianOrange - our experience with the ED service was reactionary, DD was hospitalised for 10 days after weeks of FBT at home failed - DH and I took six months off work (self employed) to support and care for DD who refused to go to the ED meetings, she was weighed by the school nurse and WR to get her teenage life back. She has her life back now but the ED traits never went away but I feel are getting stronger recently. Do I arrange a weight check at the Doctors, she is 17 - is this possible now - does she have to consent? She has not been weighed since May ‘23 and I would be surprised if she has held that weight - I simply don’t know.