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

[greydoor]

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

just checking in and thanks for the new thread @greydoor !

Thank you greydoor x

Thank you @greydoor x

Checking in! Thanks greydoor

Thanks for the new thread. Some good news today, found out DS has been offered a place at an alternative education provider starting in September. It’s apparently outstanding at supporting learners with SEMH needs and he’ll
be in a class with only three other students.

That's really good news - sounds like a good move x

Thank you @greydoor x

How’s everything going @sammyspoon have you been seen by the ED clinic yet?

@WoodenTrain that’s fantastic news

Great news

That's such great news WoodenTrain Routine and education are so important for those suffering mental illness. It sounds like he'll have plenty of individualised support with that ratio.

Has anyone noticed that your children feel sick?

Just because mine has been complaining of stomach pains and sickness and actually being sick
She does have a cough but the GP said it's viral and making her feel sick

I wonder if it's her stomach getting used to food again ? She's having around 2,500 calories - yesterday was more 3,000 and she was doing around 1,000 and a month or so ago it was zero and then some 300-500 days so can maybe put it down to that?

She's managing ok with the meal plan and has been on the higher end of calories

Obviously this has been a build
Up over time - the hospital got us to 2,500 on discharge which was over 2 weeks ago

I need a hand hold, we're attempting a restaurant for the first time and his anxiety is sky high 😔

*Summertimesadness24&

My dd felt uncomortable when she starting eating properly again but was never sick. I'd be really vigilant that she's not trying to get rid of food.
Sounds like she's doing so well though. There are some nasty viruses around at the moment so hopefully it's just that.

Proseccoismyfriend

That sounds really stressful. Can you possibly cancel or is it a special occasion?

The clinic had set him a challenge to eat in a restaurant/socially. He's managed his pasta so we're going to quit while it was relatively positive and do dessert at home. I don't know if I need a stiff drink or a lie down in a dark room.

Proseccoismyfriend

I hope you're OK. He did so well. Hopefully you can build on today's progress and try again soon.

We tend to just eat out for lunch as there's less expectation on dd to eat a full meal and it's more relaxed. She's comfortable with Costa or Mcdonald's.

She's nowhere near ready for restaurants with the risk of portions looking too big, what she's chosen being off the menu, having waiting staff giving her too much attention or talking about what she's ordered etc. It's a minefield isn't it x

Thanks for the new thread. We’re still in purgatory and have dipped back under 80% wfh. CAMHS and A&E say it’s an eating disorder and she needs input from the specialist team, ED team are saying it’s not and I need to seek an opinion from CAMHs. I cried on the phone and said that is what I have done, we literally have nowhere else to go, so they are discussing with the MDT (again) about whether they will accept the referral. I’ve spent most the morning crying, can’t get anything done and I’m at the end of my rope.

Glitterfarti

I'm so so sorry your poor dd is being failed so badly. It beggers belief how many parents have to beg and fight for decent care for their very poorly children. No parent wants to be in this situation but they make us feel like we're making a fuss about nothing, while we sit and watch our children get more and more ill 😢
I really hope you get the referral and some proper treatment for your dd ASAP x

Absolutely shocking, I've just gone through something very similar
Push push push for ED help

We've had shocking care with resulted in me talking to pals
With advice from some on here which I'm so thankful for - my updates are on the previous post no 11 and from 19th feb when we had a camhs app and was admitted to hospital with a huge battle - it was soul destroying
But my DD is out and doing great
It's so bad we have to go through this battle
Sending solidarity hugs

I'm just glad that pals helped - I missed that bit.

@Glitterfarti - could you try getting your MP involved? I work in the NHS and this certainly seems to get things moving where I am. It's an absolute disgrace how your dd has been treated.

@Proseccoismyfriend oh well done to you all getting out! We have tried a few times and it's been various shades of miserable, not fun for any of us... but it's surely a step towards normality...

@Glitterfarti I can't believe it, you've been pushed to the side and completely disregarded. I watched an online webinar with some eating disorder specialists mainly in arfid but the general feeling from parents about getting ed support was terrible and a post code lottery/luck. Your dds anxiety and health isn't going to improve without food support.
Ds would like to go out again?! I'm pleased it's gone well, there were several times I didn't think he'd finish his meal and visually it wasn't what he was expecting so he's coped very well. I'm drained and in bed.... missing 'normal' again.

Proseccoismyfriend
That's brilliant that he wants to eat out again.
I can understand too well how drained you feel, eating out is supposed to be a treat, but for families with ED it's stressful.

@Glitterfarti really sorry. This is absolutely shocking. Have you tried PALS? It worked for me a few times.