Teen Eating Disorders support thread 3

[Girliefriendlikespuppies]

Thought I better get a new thread going!

Please come and join us if your teen is struggling with an Eating Disorder. We are a kind, supportive bunch of parents looking to support each other through the dark days of caring for a teen with an ED.

As someone who is thankfully out of the other side of having a child with anorexia (she was discharged from treatment from the Maudsley in February 2021; diagnosed in April 2020 - the Maudsley started family therapy 2 days after I self referred her) I want to reassure you that the healthy diet does come back. We had to introduce her fearfoods which were all “unhealthy” - sweet things, ice cream, cake etc - and she had to eat them a lot to gain weight. Now we’re readjusting to her eating far more normally, so she can have a bowl of fruit for a snack, which is what she would have done before anorexia.

@Girliefriendlikespuppies I’m sorry you didn’t get the answers you were looking for. I know how frustrating that can be - we were given a no diagnosis for my youngest for ADHD. I was so upset after that as I was kinda pinning all my hopes on a diagnosis being the start of solutions to the difficulties we are experiencing with him. It was crushing and I remember thinking well then what the hell is wrong with him? He was subsequently diagnosed with ASD but at the formulation it was noted that he exhibited high levels of impulsivity and inattentiveness that they could not attribute to Autism. So we are now back being reassessed for ADHD. If you are not happy you can ask for a second opinion.

Which areas did she not score in and did you agree? My eldest scored in every area but my youngest did not. Some of the areas he didn’t score in I agree with but some I just think there wasn’t enough evidence. And of course girls present differently to boys and are much better at masking.

Thanks all, it just feels a bit shit really, we've been on this diagnosis pathway for over two years so get to the end of it with nothing is ☹️

Had to tell dd Ystd evening and she was upset and angry. Feels like all the assessments were a waste of time and all her struggles have been invalidated.

I think it came down to the fact that she behaved okay in the school observation, no autistic traits were seen. This doesn't surprise me and I had said to them I didn't think she would stand out at school and school have never reported any concerns. In the ADOS assessment she made a few mistakes in terms of not answering or engaging in conversation typically however they think this is to do with the hearing loss she had as a younger child delaying her socially 😕

Not sure how that explains the sensory issues, poor emotional regulation, the going non verbal when over whelmed, the mimicking animal sounds when out, the black and white thinking etc etc

Feel like I'm going a bit mad tbh.

Nelle that must be so frustrating to be back to the original assessments!

I don't think I or dd could face any more assessments tbh but I'll see how she goes.

Will see what the ED psychiatrist says next week as well as she seemed to think a diagnosis was a sure thing...

I’ve PMed you Girliefriendlikespuppies

Girlie did the assessment use ADOS or DISCO? DISCO has been proven to be more sensitive when assessing high functioning females. If you can cope with further assessments I would ask for a second opinion from someone who use DISCO. If it is relevant to you, anecdotally I have heard online assessments aren't as good as in person, although I haven't seen any scientific evidence either way.

S10w1ane I have replied.

EDNC it was the ADOS assessment...

Sorry to hear about the unhelpful result @Girliefriendlikespuppies . I suspect my DD1 would get same result. Girls are great at masking and blending in then it becomes learned behaviour. It really is difficult to asses girls. My DD2 was diagnosed ASD at age 7. Now age 14 she is unidentifiable as ASD , but I know it's underneath . I'm sure she'd never get a diagnosis now. Hope you can get more answers over the coming weeks. X

@daphnex11 I wish you well in your research, but this is a support thread for exhausted parents dealing with a life threatening disorder. Others may disagree, but I'm exhausted enough, and sick of, talking about this stuff with the professionals I have to engage with. The last thing I want to do is talk to someone who I don't need to talk to.

Also, I'm curious that you say:

"As a young woman myself, I understand how daunting it can be to deal with an eating disorder and would like to know your input toward the well-being of your children."

Are you saying that you have had an eating disorder in the past? Or that because you are a young woman you know how it must be?

Anyway, DD1 is having a rubbish day. The support workers suggested adding one 'orange' food in a day. So I went for cheese in a roll. She was hysterical. Feeling sick, can't do it, feel so ill, you don't understand....' 2 bites taken. 90 minutes later she polished off 2 triple chocolate cookies (640 calories). It's impossible.

Lougle I agree, I'm not sure this is the right place to be recruiting parents. If you're genuine daphne then you'll need to go through the appropriate channels to talk to parents of unwell children not just try your luck on mn.

Sorry you're having a tough day Lougle 💐* *

It’s so hard Lougle. Could you try the new foods soon after the Olanzapine is taken? I’m wondering if the ED voice is quieter then.

We had a shit day yesterday. Severe restriction. Only Weetabix and soup all day. Started on Thursday.Threw sandwich across table, all snack refusal saying she won’t be eating them at all any more etc. Had meds in afternoon. Zero snack after but at tea really struggled but ate some of it and dessert. Then raced out v late to buy choc. I got all excited but very little eaten of said choc .

I may be grasping at straws but maybe the meds help better soon after taking. Didn’t work like that the last 2 days but maybe she has been trying to psych herself up to battle the ED voice and it’s easier after med time.

I’m so worried and don’t know what to do. Something is going on. She has been very flat, low and withdrawn. Volatile if any questions are asked or we( mainly I)do the wrong thing. Will not speak a word. I don’t know how we’re going to beat this once and for all if she doesn’t talk to somebody. It’s impossible. CAMHs keep fobbing us off. Outreach we’re supposed to be setting something up but it still hasn’t really happened due to the last admission etc.FT says she has to want to talk.I just feel that if the children I work with didn’t want to do the education support interventions we set to help them access the education they need and we just shrugged and said they don’t want to Ofsted would be crawling all over us. She needs support to bloody access it. I’m so tired and haven’t slept again. Any ideas who I approach( not that they’ll listen)?

Hello all
Sorry about bad days @Scr1bblyGum and @Lougle . It must be a thing today because DD is in a terrible place. We've managed most of meal plan but 4 weeks in no weight gain has taken its toll on us. DD is saying awful things (can't carry on, doesn't want to wake up in morning) it's so disturbing. She counts minutes between meals and snacks and can't function. I think she needs setraline but think she needs to gain weight first. Wish my DD would come back to us, I miss her so much .
Big hugs to everyone having a bad weekend. This is so hard.

Joining @Scr1bblyGum, @sm701 and @Lougle with the bad weekends. We can't let up at all because we know how little she's having at school. Bread roll hidden in her pockets, negotiations over every last morsel, constant chopping and changing, rumbled when I put cream in the soup. I feel such a failure as I get sucked into these stupid discussions when it just needs to be shut down.

We started olanzapine on Friday evening. Totally zonked her out, could barely wake her on Saturday which of course meant less time for food. She also seems to be very grumpy, don't know if it's related.

I'm interested in anyone's experience with it? Do you think meals are better tolerated if you take it first (we've been giving it to her last thing)? She's of course googled it and read lots of people complaining about weight gain so claims that she can eat less if she's taking it. ARgggh.

I want my daughter back to. Instead she feels like the worst work project/impossible boss ever - like the brief is constantly changing and your efforts undermined.

If she hasn't put on 300g+ tomorrow then we're going in each lunchtime. Great.

@Valleyofthedollymix three weeks in with olanzapine and the only plus is the sleep. I think it's clouded her personality and I now no longer see 'her' and mealtimes no better. I'm at a loss. The clinic said she may be worse off it. At least she sleeps now. Others seem to have had better results.
Hoping to get her into school tomorrow but .... we need to pick her up at lunch.
Feels endless. I've not slept which is compounding my doom today

To be honest my dd ate much better straight away on it but I think she’d had enough and just wanted to get better. It seems to quieten the voices so she can push through at tricky patches. We’ve had a better day today. So 3 days of shit and finally an uplift. Normally we’d just keep spiralling. I miss my dd so bad too. I don’t think CAMHs have ever seen the real her.

Spoke to support today and reiterated( again) that she needs help to open up otherwise we’ll be back for a 6th admission the minute she comes off Okanzapine. She listened, she always does but suspect it’s all out of her hands.

My dd has hers at 3. She says she has zero side effects.

Valley I wonder if the grumpiness might be because she feels hungrier?

Sorry so many of you are struggling, I can completely relate to missing your dd. I felt like that for months and even now it feels like I see glimpses of her but the ED is never far away 😕

I'm not sure if it helps but I do think with weight gain I am slowly seeing improvements, dd is almost 97% wfh and her mood is much better.

Sm701 my dd said the same re wanting to die, she was having suicidal ideation (had thoughts of jumping off the local motorway bridge 😢) it was heartbreaking that she felt so awful. I worried about leaving her home alone incase she did something to herself.

The psychiatrist did want to try her on antidepressants but I had reservations and felt that weight gain would improve things.

I was fortunate that dds list of fear foods was fairly short and that she will eat three meals a day without too much aggravation. Mind you it's still taken nearly 10 months to regain 6kgs!!

Yy to the grumpiness re hunger. My dd was the same. Now low but volatile.

Sorry so many of you have had difficult weekends.

We were doing okay until today - DD had a day out with friends. But the AN was very loud and some of the people DD was with didn't know about the AN so DD felt unable to ask for food (and of course the AN capitalised on that).

So she came home, feeling ill and guilty, but the good thing is that she told us what had happened and was okay with us fixing it. She could have covered it up but didn't. A reminder for us all that the ED is always there, waiting for an opportunity to reassert its supremacy.

Not today, Anorexia, Not today.

Her telling you is such a positive thing Myrtle. You’ve both so got this.I fear we’ll never have dd confiding in us and is I suspect why we keep boomeranging. Trying to find other ways to support without pissing her off and making false assumptions re what she’s thinking but it’s hard.

Advice Needed DD saw her weight when doing our weekly weight check, the first time she's seen it in a month of refeeding..... it was 34.8 when she saw it previously it's now 36.8kg. Thats still very underweight and she's on the 1st centile for BMI......

Anyway, she's crying and refusing to eat anything and refusing to get dressed etc..... a meltdown basically. She's screaming she's obese and that I have made her that way.
How do I bring her out of it?

Sotired I think ride it out, don't engage in any conversations regarding her weight and keep pushing food.

Are you weighing at home?

@Girliefriendlikespuppies thank you, I'm going to give that a go. I have not spoken to her about the weight yet as I didn't want to 'engage a conversation with the ED'. She's starting to calm down but hasn't eaten yet..... I will keep trying, today might just be a really long bad day.

Yes, we do the weights at home.