Teen Eating Issues/Disorders Support Thread 2

[myrtleWilson]

Our first thread is almost full. Here is our second - a place to seek and share advice, to lament and scream with rage and sadness, to celebrate each other's successes as we navigate the choppy waters of supporting our children with eating disorders.

All are very welcome, whether you're at the start of this journey or a more seasoned traveller.

I'll link this thread to the first one and then I thought it may be helpful if on joining this one we did a quick precis of our current situation.

www.mumsnet.com/Talk/eating_disorders/4016379-teen-eating-issues-support-thread?msgid=104736115

Oh and I found this years advent chocs in the bin, it broke my heart as dd used to be so excited about them.

I think my own digestive system is struggling a bit with having so much cream and butter added to everything 😕 I haven't got a gallbladder and I have got a hiatus hernia which doesn't help.

@Girliefriendlikespuppies

We have our weigh in tomorrow too - good luck 🤞🙏🏻

Weigh in here first thing (at home) for us too. I detest Tuesdays.

Yeah, weigh in for us as well. Not until 1:30 though as I’m trying to arrange appts around school (not very successfully though as the KW only offers appts on Tue or Wed afternoons and the dietician is the same). I too hate Tuesdays.

Good luck everyone!

Good luck for the Tuesday weigh in crew!

Welcome jojo - a Christmas admittance must have been so heartbreaking...

Dd's collapses are increasing to at least once per day (was a couple of times a week). Her bloods were done last Thursday so waiting to see if any abnormalities...

But in good news, I think her GP has accepted DD as Group 6 in the vaccination programme. We were very worried that a bout of covid would knock her back in terms of eating capability and that would trigger a round of restricting...

@Lougle when I see how far she has come in a short space of time, it does make me feel better. I’ve got to count my blessings and not try and make her run before she can walk but at the same time not get stuck x

It’s a fine balance and I’m learning every day x

Today’s been a good day x yesterday ended up in a fight when I so desperately want to remain calm and strong x

I hope soon there will be more good days snd I’m inspired by her strength and determination to get better. Whilst I would love this never to have happened we are here and we just have to keep going x

Am I being precious about community care? I was told, in hospital, that on release, DD1 would be seen weekly, with weekly obs, weight and blood tests.

Since leaving hospital on February 9th she has had:
Feb 11th - Psychiatrist appointment. Fluoxetine started.
Feb 16th -Blood test and Paediatrician review. Paediatrician stepped back to allow EDS to take over.
Feb 23rd - blood tests by surgery
Feb 25th - psychiatric cancelled due to illness.
Feb 26th - dietician took obs & weight, no blood test review.
Today - I phoned CAMHS and nobody knows when DD1 will next be seen.

It all feels very disjointed. DD1 is still on 8mg Fluoxetine, as we haven't had a psych appointment. I have no official word on school, just the dietician's view. No plan.

@lougal To all sadly I think the support for parents is extremely lacking 😔 and I’m so glad to have connected with parents who are going through the same thing night and god bless you all and your children who are fighting this awful and cruel illness x

Hi all. Have been following and keeping up with how you’re all doing.Same old struggles here.

Getting increasingly frustrated with CAMHs for a variety of reasons. so hear you Lougle.

Really worried that dd isn’t going to be allowed to return to school Monday. Hospital appointment Friday. CAMHs allegedly trying to organise a big meeting Thursday.

She just isn’t managing the plan and we’re just not getting any advice as to what to do to help her.They also talk the talk but don’t walk the walk. Care so incredibly disjointed. Starting to wonder how we can get her through this when the treatment system in place is so weak.

@Scr1bblyGum is there a particular part she's struggling with? Will she drink supplements?

It's all so hard.

@Scr1 sorry so tough at mo. Where is DD's wfh currently? It's not set in stone and is just their recommendation. ( 85% we were advised but we often took the lead on it..)If you feel that on balance it's more detrimental for DD staying at home, ruminating more, less structure etc then make your case. It's your call ultimately i think. If your DD struggles with sitting down ( ours would not sit AT ALL unless we took her in the car, not even for meals..) and trying to over exercuse, school can be a blessing in helping to break those patterns..Hope CAMHS get their finger out & Thurs meeting goes ahead.
@Scr1bblyGum hear you there...struggle to imagine our DD ever being free of her anorexic cognitions. 3 mths as inpatient, approaching full discharge and they're still v strong..

Sorry, last comment for you @Theyseeher

They I have exactly the same fears for my dd 😕 and I agree with how hard work it is. I've been off work looking after dd for just over 3 weeks now and I'm exhausted, my sleep is shit and my digestion is all over the shop with stress.

Scribbly sorry to hear things are still so hard, I don't think there is a plan other than getting them to eat anyway you can. The only advice Camhs ever gave me re getting dd to eat was put the food in front of her and stay calm - great 🙄 does your dd respond better to carrot rather than stick? My dd does so I use a lot of 'when you've eaten this we will...' type bribes chats.

Anyway weigh in went okay, 300 gram increase.

Lougle would you mind helping me work out my dds wfh please? I think it's you who is a whizz at it!!

Another gem. Was speechless when I saw this in my other DD's French class. This kind of stuff really is worrying in our kids' curriculum. Polite email has been sent to school.

@Girliefriendlikespuppies PM me with her DOB height and weight

Just nodding away about shouldering the burden and how exhausting it is.

We had an awful night, tears, self harm, ongoing struggle to eat, physical and emotional exhaustion all round.

But, this morning... DD has said she wants to get better. She's talking about a realisation that the AN is never going to let her go and the only way to beat it is to eat it (apparently you can get that on pens as anorexia recovery merch!). She's talking about the things she's missed out on - leaving school with her friends, going to Uni along side them, she's talking about feeling sorry for DD of 2020 and what she's gone through. I'd say she's doing it more for us than her (at least vocalising it that way) as I think it is a bit easier in terms of negotiating with the ED.

So, she's not going "all in" but she's asked to have pasta, sausage and sweetcorn (mixed together) for dinner. Food mixed together is a big fear food. And she's asked for a sandwich for lunch tomorrow. She's also following a mantra from Dora (I linked on previous thread to Dora's you tube videos) that if you're eating isn't making the ED uncomfortable you're not eating enough/the right things.

These are huge steps for her and there were happy tears from DH and I at breakfast. Obviously saying it and doing it are two very different things but am seeing the teeniest glimmer of hope...

Hold on to that glimmer then @myrtleWilson. As I was told by another mum whose anorexic daughter is now fully recovered (& has become an ED nurse herself), we can't "fix" them. Terrifying though it is, to a large extent, it's their choice, their journey, we can only support them through that. They have to choose recovery. And it sounds like your DD is starting to allow herself to see what might be....xx

That's amazing myrtle I feel a bit teary reading that!! It sounds like your dd is ready to fight it and get her life back 😃

Good luck with the dinner later.

Will do Lougle, thanks 😊

Amazing step forward, @myrtleWilson!!

I'm really cross. I've phoned again to try and get some idea of when DD1 will next be seen. The lady said 'I'm quite new but I know there are waiting lists...' so I said to her that if people were telling me there would be a waiting list, fair enough. But they told me that on discharge she'd get weekly obs, weekly blood tests and a weekly appointment. In the end I said 'I do think someone needs to have eyes on her, because she's only 70% WFH, so she's by no means fixed '

myrtleWilson that is a huge positive this morning. I hope it stays that way and you see the reality of eating kick in as well as the intention to beat the ED remaining.

I have a GP appointment this afternoon, they called this morning to see if she warrants an appointment and TBH the call was quite deflating, the Dr didn't sound convinced that she needed to be seen, even at a BMI of 14.5 and a weight of 34.7kg and she's 13..... Anyway, I have a face to face so fingers crossed the appointment is positive. DD was crying last night so much, she's fat and ugly etc etc there is no seeing sense this ED is so toxic

Yep it’s tough alright.
Hope the new found determination by your DD translates into some improvement @myrtleWilson
We have no weight gain this week. Very disheartening esp as she has eaten as well as last week when she out on 1.5kg....starting to to think last week’s weight was inaccurate (my scales at home with new batteries... plus I didn’t actually see her wee.....)
Also I have caught her doing more illicit exercise this week and the constant standing is back.... I guess I kind of relaxed last week after the gain and shouldn’t have.
Bloody hard.
Meeting with school at 1pm so will see how that goes.
@Roolet12 my DD has just finished a topic on food and keeping healthy in French too.... it is beeping everywhere....she is doing it on Spanish now as well....

My dds been writing down some thoughts and feelings as part of her CBT and it's all about feeling fat and whether she should die 😓 it's such a cruel cruel illness.

They I really worry when we start watching anything on Netflix about whether there's going to be anything triggering on there. We watched a show called Ginny and Georgia the other week and one of the girls self harmed and another one had body image issues 😣 it did help start a few conversations about how common it is to feel bad and negative about your body etc. Still not sure I should have let her watch it though!!