Support thread 11 for parents of young people with an eating disorder

[GrannyRoberts]

Hi all, here is our new thread. I will attempt to post a link on thread 10.

Yeah an ecg would definitely put my mind at risk, she's up and said she had on in the night so off we go

It was just a walk in centre

Food wise she has stopped eating and just 'can't' so I've been forcing her 😞lately
She only ways because she's forced too
So lunch's at school are bad as I can't monitor - she tells me ' she tries '

After getting the nhs guidance sent to me from the ED clinic last week, we are trying for the 500calories for breakfast lunch and dinner and 200 snacks x3 in the day

Last night she managed 1800c in a day so that's the most she's had in ages - I haven't been calorie counting until now and haven't made her eat - she literally picks at her food
Until now where I've been reading here

This mornings break fast was 450c count so we have a plan but obviously her body has been struggling this week hence her symptoms ( and for much longer most likely)

@summertimesadness24 If she has been severely restricting for a while then you need to be careful during refeeding due to potential electrolyte (I think) imbalances. Every HCP we have come across has taken the risk of refeeding syndrome very seriously so please be careful and get medical help at this stage. A&E should do an ecg if you tell them she has been having heart palpitations. This is so frightening for you both but you are getting help for your daughter and you will get a lot of support on here for yourself. It’s a long road but as we’ve seen time and time again on this thread recovery is possible - just bloody hard.
@GrannyRoberts thanks for the new thread

@Shanghai101 thank you - it's so scary as now I'm thinking I shouldn't be feeding her so much ? 😕hopefully she can get one today x

Sending love @summertimesadness24 I also feel ecg is a good call in a&e a month is a ridiculous amount of time to wait and after our admission we were seen a lot faster by the ed team. They really are the best people to get your daughter well.

I shudder to think the time when I noticed DD has lost some more weight (camhs wouldn't tell me obviously) and I got DD to drink a big bottle of protein drink. She ended up with I suspect gastric paresis and vometing. ..and another trip to A&E...

Gosh, I understand how others have mentioned ptss. I should pull out of here as it brings back bad memories. But also lots of good advice.

@summertimesadness24 my DD gets palpitations too, she goes clammy, pale and says her heart is hurting - heart rate is about 120 or more during these episodes. We have been told it’s likely to be panic attacks and her ecg was normal (she didn’t have an episode while hooked up). Sending solidarity!

If anyone ever wants to enquire about CBTE happy to talk otherwise I will leave here

Talk about our personal experience

@Slowlyimproving I'm interested in CBT-e but I also appreciate this is bringing back bad memories for you, it sounds pretty horrendous. If there's a website you'd recommend, that would be great but otherwise I'll just have a look around the internet.

My daughter says her heart also hurts and I don't think hers are related to panic attacks as her last one was 930 last night and then this morning

She also describes it as ' getting out of breath' which is what she had this morning

We are checked in a&e waiting to be seen

Thank you to all who suggested to come x

Been triaged. They are doing an ECG and a BM

Been handed this form and now waiting....what's a BM? Sorry for daft question

BM means a blood sugar check - finger prick. If hers are low it will explain some of her symptoms.

Ah ok makes sense
So if both tests are ok we will be discharged?

4.8 was the result of blood sugar so she said that's normal

So I take it it's not to do with low blood sugars so obviously something else?

Eyelashesoffire
Look for Fairburn from Oxford who developed it and Graves who adapted it for adolescents (I bought his book).
I think they have to be a bit older and willing to engage. DC just liked the person which I think is very important as well.

Thanks so much @Slowlyimproving , I hope you have some time and energy to recover from this ordeal. DD is still resistant to the idea of anything being wrong so I think we're some way from 'willing to engage' 😬 but I will research, it's my way of preventing overwhelm for myself!

So ECG is normal
Being sent home

I am so over this ED! Dd13 is not at school at the moment as we still need to supervise her 3 meals and 3 snacks and also have countless appointments so I’m just overwhelmed by it all. Met the eating disorders psychologist last week. Hospital gave us a strict eating plan and the number of snacks on the list that she just refuses to touch is challenging in terms of managing the requirements . Credit where credit is due, I did manage to convince her to agree to 2 new things from the list and she had one or them for supper last night(evening snack). How to others deal with this as I’m really starting to struggle with it all.

@summertimesadness24 / glad everything's looking ok and you're on your way back, that's really positive.

@Cantfindthewordsddstruggling - omg I feel you!! It's like having a baby again in terms of just the constant supervision and having to totally grasp at straws to work out what's happening inside this little person!!! While they are being really teenagery and mean!! Hope you get a rest this weekend xx

@GrannyRoberts - I just wanted to say 103 is amazing - that's such an achievement! My dd went on a residential just before Xmas and it was good in some respects but very hard in others. The leader of the trip is very compassionate and has worked with several other girls in the past with ed, but my dd really struggled to eat and we had agreed beforehand that the leader wouldn't draw attention to it. She also had a huge meltdown on one of the nights. Before she went I just decided to write off the calories and just give more before and after. I think it's worth giving them the opportunity to do stuff, but also accepting that it's probably going to mean fewer calories over that time. I loved your ideas @BagpussSaggyOldClothCat for the notes and taking a soft toy, I wish I'd done that when my dd was away!

@Cantfindthewordsddstruggling

I have a 13 year old who wax diagnosed a year ago, also out of school for a while.

How much is she eating currently? Do you know her WFH (weight for height).

In practical terms, do you have support like a DH who can share the load of meal support? I worked from home for a long while but ran into issues at work. I think quite a few here took time off work (extended sick leave) to establish the eating of 3+3. Once my DD was able to manage 3+3, we were manage to re-integrate her into school with meal support. We have a very supportive school which is hot on attendance so they were happy to create a rota to supervise snack and lunch. It's a really hard slog esp at the beginning.

we had a small breakthrough today. She agreed to eat home cooked dinner (rice and veg cooked in olive oil). The refused the snack afters and the portion was not massive but it must have been the first home cooked meal since June last year! I am trying not to get too excited but so so happy 😁

I haven’t posted for a while but read everyone’s experiences and they all echo with my DD. With regards to care and the early stages of the ED - I can only say keep going day by day, any blips I treated as feedback rather than failure (easier said than done).

My DD’s story started with her restricting during lockdown, diagnosed AN Nov 21 - hospitalised for 10 days and FBT at home (DH and I sharing the load). Weight restored in July ‘22 and discharged from services in January ‘23.

DD has comorbodities - I treat her now as having strange eating ‘habits’ rather than focussing on an ED disorder. I have PTSD and carer burnout, I’m needing to turn away from living my life in crisis mode. I want to thank everyone who has commented and shared their experience - you made me feel less isolated with really helpful insights, much more informative than CAMH ED services could provide.

After two years I am stepping back from this thread for my own sake. Wishing you all the strength to deal with your DC when they need you most and when the ED detests what you are doing..

Take care everyone - look after yourselves.

@Curlyhairedassasin omg that's amazing news!!! 🍾 I'm really pleased for you!!