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.

@Girliefriendlikespuppies omg I would not be happy with that corset thingy!
@SoTiredNeedHoliday how is the olanzapine going have you noticed any improvements? We noticed them quite quickly but then they wore off and we had to up the dose.
@Valleyofthedollymix sorry to hear about the loss- my moods are affected by the weekly weigh in so I do sympathise. I know weight gain wont be linear but it's hard to take when you seem to have spent all week managing food and exercise...
On that note @Lougle we are weighing tomorrow too and I am already nervous as I am quite sure DD has done too much this week....
However in positive news DD ate pizza at lunch for the first time since diagnosis. Pizza for lunch in school hols was a regular thing for us. As she wont engage with discussing fear foods our KW said last week to just start challenging her with no debate so I just put it on the meal plan... I was expecting a lot of kick back but didnt get any. She had a whole pizza but had a third each of different flavours incl pepperoni. C 680 cals. Which is more than the lunch it replaced. I had a bit of anxiety after but I just said that it was the right food for her when she asked me 'if I had worked out the cals properly'. So I will have it on every week now so she gets used to it. I'm really proud of her. It's a food she has always loved.
Yest bike ride with DH went well except he put his back out so he is now in a lot of pain. They should have come back when he did it (half way through) but DD wouldmt have any of it.... so altho the diet is going quite well the exercise not so much.
Good vibes to all

@Lougle Sorry we cross posted! I would be disappointed with school too tbh. They should be on these things quicker.
And sympathies with he other thing. Bureaucracy is such a nightmare...

I did DD1's obs today in lieu of clinic. Weight gain is good: 1kg up today. Just shows that she needs the calories. She averaged 2950 cals/day this week.

BP was less reassuring.
Lying BP (on waking): 109/63 HR: 77
Standing BP: 96/57 HR: 120
After 2 minutes: 97/71 HR: 102

So a massive jump in heart rate on standing and a moderate drop in BP. We'll see what the psychiatrist says, if she contacts me.

Lottsbiffandsmudge the olanzapine is going ok but I am not noticing a much if any of difference, the one thing is the mornings are a bit easier but by lunch she's totally miserable, cranky and fat again.... She's only on 1.25mg though so maybe it's too little?

Lougle I'm also having school silence, it's so frustrating. I've contacted them 3 times since 8 April!

How do you all deal with the "I'm fat and ugly & have no friends" drama that clearly feels so real for the patient but is so not real in the real world? For DS she won't believe anything I say so talking whilst she is spiralling isn't helping....... I don't think we've ever had so much crying in our house

Lottsbiffandsmudge well done on the pizza!!!!!!!

@SoTiredNeedHoliday I find the same - breakfast is ok, lunch is tricky and dinner is really hard.

I think with the 'I'm fat' comments, you need to just say something bland like 'I'm sorry you feel bad' or avoid it altogether.

@SoTiredNeedHoliday if you are noticing a difference in the morning its working. That was our major difference breakfast became a little easier. We stated on 2.5mg (weight at that point c 39kg) and went up to 5mg after a few weeks. I would maybe ask about increasing the dose.
The biggest thing I have learnt about DDs distress is that talking doesnt help. When she make assertions like this I just say 'I am sorry you are feeling like, that it sounds very hard for you' and then shut up! It doesn't stop the distress but it validates their feelings and then they have to deal with the thoughts themselves. Reassurance isn't helpful. They have to learn that such anxiety will come down on it's own over time. It's good to say something like 'I can see this is hard for you. I want to help you fight this illness and won't give up until we have it beaten' but the most powerful thing I have found is to just be there without staying much. Being physically reassuring (hugs, stroking etc) if that is tolerated. And yes the meltdowns can last hours but with this approach they are getting fewer and less lengthy. And weight gain and olanzapine will help in most cases.
DD has put on nearly a kg this week which I am pleased with. 95.8% now.
@Lougle hope the phsychiatrist calls

thank you both, really helpful comments that I am going to try and put into action today.

Good luck! Tbh it was mind blowing to me that saying less helped more than all my rationality. Once I accepted that logic was not helpful it all got a lot better. This illness is not remotely logical is it!
The leader of our Beat support group shared a really useful thing about reassurance and how it isn’t helpful. You know the whole ‘Am I fat?’ Or ‘Is that the right calories’ type Qs.
I know easier once by saying something like ‘I don’t believe you are fat so we will have to agree to disagree’. Or ‘these are the calories you need’. And move on. Then do not reassure again. It keeps the anxiety at its peak rather than letting it fall by itself. There was a graph that sort of explained it.
I am learning so much about how my actions (which are always from a place of love and wanting to help) cAn actually be counter productive.
It also means I don’t get drawn into those circular arguments / conversations for hours at a time. It’s pointless as you are really only talking to the ED...and that doesn’t deserve my time.

Sorry it should say ‘I now reassure once’

I tried it in the car today, DD was getting all agitated looking in the mirror and all the usual things started being said along with tears. I just said 'i'm so sorry you feel like that, I can't see what you're seeing though'. And then I was silent the rest of the trip. She didn't kick off at full force, she was a bit upset when we got home but I just sat with her quietly.

She ended up not melting down and eventually being able to eat a normal lunch.....small wins

Great progress! Well done.

DD1's school have asked her to go for a tour of the school and a chat with head of year on Friday. Then we have her EHCP annual review on Tuesday afternoon.

Great news sotired ! How does DD feel about that lougle

DD is officially no longer under CAMHS and tomorrow she's dropping a volunteer application form off in a shop in town - trying to build back her independence before hopefully a summer of much more fun than last year and then return to 6th form in September

Great weight gain Lougle, I wonder if the bp/pulse issues are just the body trying to catch up? Has she had an ECG?

Yay for pizza lots!
*
Ineed* that sounds like progress as well. Yes to less is more on the talking front, there's no point trying to reassure them or make them see it logically (although every now and again I will give it a go!!)

Mind you if I say 'I'm sorry this is hard for you' dd rolls her eyes and tells me to shut up. I think she thinks I'm being insincere. I tend to avoid any conversations around weight or appearance if I can help it.

She has her autism tomorrow, I'm feeling quite anxious about it. I'm just worried they will say she doesn't demonstrate enough traits or something. Even though both psychiatrists have said she scores really highly!!

What a milestone @myrtleWilson! That's a real post of hope

@Girliefriendlikespuppies I felt like that with DD2 (13, 11 when assessed). In the end she scored really highly and it was a very clear diagnosis. One brilliant anecdote was that during her ADOS they asked her if she would get married. She sighed and said 'No, I'll just live with my husky dogs'. They asked why, and she said 'Dogs don't have a big list of demands like people do. As long as you feed them and walk them, they just love you.'

The ADOS is very detailed. They even picked up that DD2 used the word 'ambushed' 3 times during her description of a picture book.

She's still just like it. Earlier she had a muffin. She described it as the 'blonde muffin' because we had some triple chocolate muffins which are dark brown, and some double chocolate chip muffins, which are paler.

DD1 is a little nervous about school, but ok. The KS4 head was telling me different ideas for how they could help her - bespoke timetable, therapeutic sessions, etc. which is lovely, but it did make me wonder why none of this was available prior to her hospital admission. She's been struggling since year 7 and hit a low mentally last August. This could have been avoided.

Just typed and lost a huge post so going to just say 'yay' @SoTiredNeedHoliday. So glad it worked and helped a bit!
Well comment on everyone else later on my tablet when home from footie training! Phone keeps losing everything!

Lougle your dd2 sounds great, I spoke to dd a bit about tomorrow's assessment and asked her how she'd feel if they said she is autistic. She said 'relieved' bless her. My dd would quite happily live on a deserted island with just a couple of her friends and lots of animals- she'd actually love it 😁

I'm hoping she won't feel too anxious in the assessment as I think she'll have 3 of them in there and it is being filmed 😳

Dd had her cbt today and said she thinks it's a waste of time 🙄 she also said her friend who probably (definitely) also has an ED is a 'bag of bones' 😕

@Girliefriendlikespuppies hope the assessment goes well.
@lougle that sounds promising re school. I agree it’s a shame all these measures are reactive rather than proactive... hope your Dd enjoys it.
@myrtleWilson I am so glad things are continuing to move in the right direction. I cannot believe how well your DD has done- I remember how poorly she was when I joined here only last Dec- her turn around and determination to get better is amazing. Go her!

@Girliefriendlikespuppies DD2 says she's going to live on a little island with lots of animals, where she has to row across the water to get her shopping.

So dds had her ASC assessment, I wasn't allowed in so had to sit in the car for 1.5hours. Dd said it went okay although she was nervous with so many people watching her. One of the tasks she had to do was pull 5 random objects out of a bag and link them together in a story. She said the lady assessing her did it first but dd said her story was all wrong and should have been told her way a different way... if she doesn't get a diagnosis I'll scream!!

Anyway sounds klaxon she ate her morning snack on the way back to school, the first time I've seen the morning snack go in since before Christmas

Brilliant for the snack, @Girliefriendlikespuppies

DD2 wouldn't go into the assessment room without me (pre-covid) so I saw the whole assessment. I winced at that part, because I thought DD2 would say something like 'I don't play with plastic toys...' but she did comply.

Hi everyone, had a busy week so need to catch up!

That’s great about the snack @Girliefriendlikespuppies I was able to sit in on my youngest child’s ADOS as we did it on Teams during lockdown. He didn’t like the woman’s story either and picked apart why it was not a plausible story. 😂

DS has eaten dinner the past three nights which I’m so happy about as I’ve added cream and butter to every sauce.

Nelle that's exactly what dd said 🤣 yay for your the dinners going in! We've just had pizza (with extra cheese) and I realised I could add oil to oven chips which must add a fair few more calories so half a pizza with extra cheese, oven chips with extra oil and a whole avocado most of which she ate ✅✅✅

I've also realised she will eat ice cream with her pudding and eat more of it than if I added double cream. So pudding tonight was a large cookie warmed up with ice cream and she ate most of it 😋

Happy with that.

Is anyone else fed up of the grind of constantly pushing Food? DD1 is becoming resistant again, turning down options she used to like. It's so boring.

Oh god @Lougle soooooo bored of the relentless food pushing and the conversations we have to have.

I've tried to take inspiration from all of your fat-smugglers, but she constantly hovers and is paranoid that's what we're going to do. I'm so tragic I've made a separate milk carton to which I've added double cream. And been adding butter into food more as well as being more bullish about putting butter on her toast. Still don't seem to be getting much more than 2000 calories in mind.

We had a terrible night the other day when she said she'd rather die than be 48kg. However, it's been a bit of a tipping point as she now seems to recognise that we cannot go on with this glacial weight gain and needs to accept more food. Which she's doing with less resistance.

@Girliefriendlikespuppies we did the ADOS for dd in y6 - it turns out she doesn't even scrape the bottom of a diagnosis. Being anxious and socially awkward weren't in themselves signs of anything other than being anxious and socially awkward. But I'm still glad we did it.