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

Glad it was better @Lougle. Fingers crossed for a better day today for all. X

And Happy M.D to all of us here

Happy Mother's Day everyone 🌻❤️

DD1 didn't eat dinner (well, ⅕ eaten) hasn't eaten breakfast and had chest pain this morning. Systolic bp went from 91 sitting to 79 standing. So I've taken her to A&E.

So sorry to hear that @Lougle, do hope DD checks out ok and they're helpful. Let us know how you're/she's doing.

Yes happy Mother's Day to all us warrior ED mums - we deserve many many medals!!

Lougle I'm so sorry to hear dd isn't doing well, a&e is the right call, let us know how you get on, sending unmumsnetty hugs.

Dd bought me breakfast in bed with a nice card and flowers, she's a good girl. Felt slightly weird that I had to then get up and make her breakfast as i wouldn't let her make her own!!

Sending love to everyone today
Lougle extra unmumsnetty hugs for you lovely

Lougle that sounds like your only option. This awful disease, it takes away all common sense from those with it.
I hope you get the care needed and DD is receptive.

We're back from hospital. Her BP was more stable at hospital. They got her to drink squash mixed with Diarolyte and one of the nurses had made chocolate brownies for the staff and managed to get her to eat 2 of those. They did a blood test then sent us home with open access until Tuesday, when she has her EDT appt.

Oh gosh @lougle, what a fun Mother's Day you've had. Really sorry but it sounds like you've handled it all so well. It's so incredibly frustrating isn't it? I find myself humming 'did somebody say just eat' six times a day.

In some ways, DD is different from many here in that she eats three meals and three snacks, eats more or less all foods other than meat, doesn't mind eating in front of us and occasionally others. She just doesn't eat quite enough and is so bloody thin. Her thinking is disordered (guilt, knowing calories, obsessing over healthy food, saying stupid crap like 'bread cleanse').

Today we went on a bike ride and she complained of feeling cold but refused to zip up her coat because it makes her look enormous. FFS a) nobody's looking at you and b) you're 43kg.

Valleyofthedollymix great your DD can go out on rides etc! I can't wait until we can get back doing some exercise. I am doing everything as DD at the moment to help her with the battle.

Lougle glad you are home again, I hope DD sees a little that she needs to eat and drink? Do you think the A&E helped her with that?

afewtoomanychoices I found these two places recovery clinic & Schoen I have no experience of either though. Also the London centre

@Lougle glad you made it back today and DD stable. Hoping she's managed to do a bit better today with meals....? (And hoping you maybe managed a glass of something to calm the nerves!)

@afewtoo i think the Schoen clinic is tge same as Newbridge i mentioned before. Run by the Schoen group? I spoke to them when researching diff options for DD - tfey were really helpful. Distance was too dar for us. Knowing now what I know, nearing the ebs of DDs IP admission, I'd say that being as close to home as poss is key to the process/leave/visits etc being way more manageable. Worth holding out for.
@Valley...not zipping up and semi freezing to death sounds familiar! Can also recall bike rides where DD wouldn't sit on the saddle for the duration of the ride...

@Valleyofthedollymix glad she enjoyed the ride, although a shame she won't zip up. Would she wear base layers?

Thanks for all the support. DD1 ate 2 chocolate brownies at hospital. I made her eat another at home. Then she wouldn't eat at all after that because she was having roast dinner for tea. But then didn't eat much of that and is saying she feels really sick, will vomit, etc. So only 943 calories today, 650 of which were chocolate brownie.

I'm so fed up with it all.

I'm not surprised Lougle, fwiw I think you're doing so well.

Valley my dd needs 'reminding' to do her coat up/put a jumper on/not to open windows I think it's ED behaviour in wanting to be cold (burn more calories.)

We've had an okay day, we had a take away roast for lunch which dd did okay with and had chocolate brownie for pudding.

We forgot her snack on our afternoon walk so she refused it when we got home (will only eat the snack on the walk 🙄) but she had a couple of scones and Oreos for tea.

Hoping calorie wise that's not too bad but suspect it's less than normal 😕

I hope you don't mind me jumping in, I have been lurking for a while.

Lougle I can't help but feel your DD would benefit from enteral feeding. I have 2 DC with an atypical ED who also have additional needs (medical and developmental). They both have overnight enteral feeds which take the pressure off. I was sceptical when it was first suggested for DC3, I thought they were jumping to it too quickly. My concerns were unfounded. DC's oral intake increased, it took the pressure off and stimulated his appetite. Some DC with additional needs just can't take in enough.

Hi @EDNC I think that would help. I don't know how we would get there. She's very clearly telling us that she just doesn't care about food. If we could have a 'food is for fun' approach, it would take the pressure off her. But right now all I'm saying is 'calories... Need to eat... Haven't eaten enough....'

My DC still have 3 meals/3 snacks and we still use the 'magic plate' with no bargaining/negotiating etc. but their plates are removed after 30 mins for meals and 20 mins for snacks and if they haven't eaten much I'm not as worried.

For us DC's medical team suggested it (ED service rejected referrals as atypical ED). If no one is mentioning it for DD I would ask outright, and if not why not and when would that be reviewed. I find HCPs generally oblige when I ask for something directly.

Happy Mother’s Day all. I’m really sorry for all of you that are having such a hard time at the moment. Things aren’t too bad here, I’m cautiously optimistic that we have turned a corner. Good job really as the EDT and our docs are starting to ‘fail’ us a bit.

I found myself wondering about overnight tube feeding the other day (not for DD, she’s not at that stage) just in general as we have had a child join our school who is fed this way. I was thinking that it could be a good idea for some of the worst cases, as I have seen a definite improvement in DDs mood and logic/brain function as she has put weight on - it’s been easier to speak to her and use reason to get her to eat more, rather than speaking to the Anorexia who just wants less.

Welcome @ednc - thank you for sharing your experience and I hope you find the thread useful.

lougle my heart aches for you - I know that sense of absolute despair and wondering what can propel you forward. I hope ednc input may give you some additional advice.

valley I did snort a little at your a) and b)... The a) is interesting isn't it - the relentless of the ego of the ED is quite something and a difficult battle partner

We're doing 'ok' - DD is amazing me on an hourly basis - her determination to try to keep up the momentum in her efforts to be in recovery is nothing short of herculanean. Today, she managed breakfast (as usual), she made her own mid morning snack of pitta, hummus and crudités (all fear foods), ate a tuna bagel for lunch (fear food), had granola and yoghurt (granola = massive fear food) for mid afternoon snack. Had a family roast chicken dinner, including 2 roast potatoes and a Yorkshire pudding and then for supper a mini apple crumble and custard (mega fear food level) Am in absolute awe of her.

Thats not to say we're all "yay, anorexia is gone" - it is so hard for her but she is smashing it, she's still self harming but at the moment is able to curtail that quicker than previously. Plus, she is still massively triggered by photos her friends post on TT/Insta etc...Tomorrow, she is going on a walk with Dh and is intending to pick up a snack at Starbucks - that is new territory.

I am not under any illusion that we won't have a massive backlash at some point, but for now it feels like the anorexia is more uncomfortable than ever before. And I suppose I post this because only days ago I felt a dread in my body that things were very much going in the wrong direction...but we keep on keeping on don't we, with hope.

This thread has been and continues to be such a resource and a refuge - thank you all!

@myrtleWilson she is rocking this!! I'm amazed and so happy for you

@EDNC can I ask whether your DC have a clear clinical need for Ng feeding, or if it was just a decision made based on their ED?

DD1 has some sort of genetic condition - brain malformation, epicanthal eye folds, skin that reacts really easily to pressure/rubbing, historic epilepsy but in remission for 12 years, possible ASD - but no clear diagnosis. Her faltering weight has been going on for years, though (I have posts on here going back to when she was 6/7), but nobody paid any attention until she was 68% WFH and with a heart rate of 144.

I completely agree that an NG or even PEG feed would make your dds life so much easier Lougle especially given her other health needs and learning disability.

I'm back to work tomorrow which also coincides with weigh day, not feeling confident about either tbh.

Oh and meant to say that is amazing news myrtle, it really does sound like your dd has found some determination to take on the anorexia and beat it. It really is inspirational.

Can I just scream? Breakfast impossible. Wouldn't choose, wouldn't accept any option. Screaming and yelling to stop going on about food. Said she'd pour a smoothie down the sink and throw pancakes in the bin. In the end I said she had to have 2 chocolate brownies, which she ate. But she can't live on chocolate brownies!!