Support thread 10 for parents of young people with an eating disorder

[Lottsbiffandsmudge]

Hi guys
Here is our new thread. I will add a link to it in Thread 9

Sorry you yourself here. Sounds similar to my dad 11 who started by throwing lunch away. I ended up picking her up for lunch each day then talking her back to school. There is no one rule to be honest all children are different. Ours has been allowed to carry on excersize throughout as its balance between mental and physical health she’s always done sports and loved sports. It depends on the wfh and how much they are eating. It will all be monitored. I will say she has snuck up to excerzise 5/6 times a week now but has four snacks. Her therapist says if she gives up sports in favour of not eating then she is allowing the Ed to win and I agree with this. I would rather her do sports and be happy instead of eating less. It is still hell getting her to have the fourth snack. And I can tell you 7 months in it’s not any easier her anxiety and meltdowns are worse than ever but she is weight restored. It’s a very lonely and depressing illness , it goes up and down. Right now she seems to be struggling and taken ages to eat her food. It’s all ongoing and takes a long time. Also I will say some have the view of tackling the fear foods right away but we worked up to three snacks she still hasn’t had fear foods but has reached a safe weight now, Eva mendes does say once they reach a safe weight introducing fear foods can be easier. Not that anything is easy with this shitty illness and it’s very lonely no one will understand what you go through each day.

Hi, we had bad news this week. DD has osteoporosis age 20. Waiting to see bone specialist but have been told in the meantime to increase calcium, Vit D, introduce strength exercise and obviously- feed body properly. I have been telling her for a long time that this would happen but tbh hadn’t expected it so soon and she’s back at pre AN weight too. It’s a terrible shock. Has anyone got any tips for how to help counter bone density loss?

@Waythroughwoods really sorry to hear that. I don't have much advice beyond what you've listed. My mum had osteopenia, she was advised to eat a lot of cheese and any dairy! She went onto drugs quite soon. I hope the bone specialist is good and you get to see them soon.

Sorry to hear that @Waythroughwoods I don't have much knowledge but I suspect the bone specialist will suggest IV bisphosphonates to bring her bones up to the level they should be. Milk, dairy in the meantime. Can I ask how long your daughter restricted for or how long weight restoration took?

Thanks for messages. Yes I think she will need the medication. Trying to find out how long to see specialist- we may have to go private unfortunately. It took 6 months to get the DEXA scan.
@Proseccoismyfriend she’s been restricting for 4 years now. She has always eaten so has never dipped low enough for hospitalisation but since being at uni, she’s been more restrictive. She’s been about 5-7lbs below her healthy pre AN weight for about 3 months. She usually gets back to pre AN weight in holidays and then dips at uni. Reached her pre AN weight 2 weeks ago.

@Waythroughwoods So sorry to hear that. Thinking of you and your DD.

@Waythroughwoods no experience. This must have come as a shock. I think it's something many of us worry about.

Is this reversible at that age? I hope you get the right treatment quickly.

Heartbreaking conversation with DD tonight. A major focus for her recovery was to get out of the ED unit and lead a normal teen life. She is still eating, but hasn't been gaining weight as quickly as expected (some struggles with exercise, choosing lower cal options), so her discharge date has been put back a couple of times. She is making heroic efforts to get into school three times a week (I get up at 5 to pick her up and get her to school for 8.30), but after nearly three years absence (pandemic, off from Jan in year 11 and missing almost all of year 12 and having to redo the year with younger students), her old friends have moved on and joined new friendship groups. She's seemed to have a nice friendship school prior to the pandemic though she says she felt she struggled to fit in due to what we now know were autistic traits. But now she feels everyone hates her. People are pleasant to her but she's not in any of the WhatsApp groups and isn't being invited along to social gatherings. She's tried suggesting activities to others, but no-one seems to take her up on it. Before becoming ill, she was a keen chorister and musician and was in cadets (and was on a pre-Oxbridge programme) but has missed so much she has fallen behind all her peers, so doesn't want to re-engage. Now she's saying that when she was starving she didn't care about being out of the loop, because at least she was skinny. I'm so terrified of a relapse. How have your DCs managed to reintegrate socially?

@NanFlanders my heart broke reading your post first for you and Dd and because it took me back to where you are now.
I hope I have a story to tell which may give you some encouragement but I'm also conscious that I'm in a privileged position of being on the other side so I don't want to give you a Pollyanna answer without reconnecting to the fears you have. Let me gather my thoughts into something more helpful! Plus I'll talk to my Dd to see if she's ok with sharing her perspective on the journey she's had on last year xx

Nan, obviously everyone is different but dd changed schools. A sixth form college may have more flexibility, and also a range of wider range of ages of the students.
Obviously it's something new and too be honest dd's AN became worse. However I think that's not because of the change but despite the change.
She also joint a completely new club. This was partially because she had to give up on her sportsclub but again it was a "fresh start".

Nan, my heart goes out to you and your dd. It's incredibly hard as a parent watching them struggle with friendships, and even harder when ED is in the mix and eating can be affected by their self confidence. My dd had a great group of friends before lockdown and ED but now has just two friends who, although are good friends, still do a lot without her. It doesn't help that dd can't eat out of the house so the usual teen hang outs in mcdonald's, costa etc don't work well. They've also got part time jobs and have money whereas dd doesn't and that has caused a divide, although I try to give dd as much money as I can so she can keep up (we are STILL waiting on PIP decision). They will be off to uni next Sept and I worry how that will affect dd as she becomes further left behind.
I really hope things get better for your dd and a kind friend sits up and takes notice of her. If only teens knew the power they have to really make a difference in someone's life by just being kind and including them.

Nan - apologies for the delay.

My Dd's experience of returning to school (to the teen life she wanted) sounds similar to yours. She didn't have a close knit group of friends, she was two years older than them and soon noticed that maturity gap. Her own year group were supportive of her ED whereas this new group didn't really know/connect so there was lots of diet based chat in the common room which triggered DD.

At the same time, she struggled with the workload, some of that related to the sheer level of effort she had to put in to concentrate due her severely depleted cognitive function and also because she was comparing her ability to before she became too ill. She was getting stressed about reaching the levels she was able to achieve previously (a-levels were her thing so much more than gcses - she'd found her niche)

That combo meant the school environment became toxic and the anorexia saw its chance and grabbed it - with some relapses. Eventually dd thought it through and said she wanted to leave. I surprised myself with how quickly I came round to her way of thinking (although I still had private 'woe is me' moments about the future she wasn't accessing)

Two years later she's happier, healthier, switched on, interested in the world, has two jobs (personal trainer and working for charity which is an umbrella body for other local charities), she's using her brain, even in early days of new job she's coming up with ideas and executing them, experiencing new levels of independence.

I share all that background because for Dd, it feels like there were two sliding doors moments - one was forced upon her when the anorexia took control. A pathway to one future was shut off then. The second sliding door was when she decided, having tried to pick up the original/initial path way, that she knew that future wasn't for her and so picked a new pathway - I guess we don't know that lies down the road but for the moment she's on firmer ground underfoot that she's been on in years.

I guess, I'm saying - how important is it for Dd to persevere with trying to reconnect with the footsteps she never got make on her original pathway or would it be better to take a little stroll elsewhere - connect with new friends her age through different hobbies, volunteering etc. Dd had a crazy job in a bar/restaurant with loads of people her own age for about a year and it gave her a new group of friends, socialising opportunities. Then she decided it wasn't the healthiest environment so she moved to retail where she worked with older colleagues who were her mother hen and now she's where she is. Although she was happy to leave both environments, they did both give her something she needed socially/emotionally etc even if only for 9/12 months...

Given the 'focus' your DD has put on the 'getting back to where I was' as a drive for leaving the unit, I can imagine she (and you) may not want to have the "is this right" conversation yet with the fear that without that drive the ED will slip back in. But perhaps doing some future visualisation activity may help - not so much of "what am I doing" but more of "what matters to me" - We did similar exercises with Dd about how she wanted to feel - so 'happy' 'able to be spontaneous' 'strong' etc etc and that could be used to open up a conversation of how you could be those things in different settings...

I've rambled but most of all sending love!

Wow @myrtleWilson what an incredible post. I realise I have definitely had a strong desire for everything to go back to 'how it was before ' This has given me so much to reflect on. So lovely to hear your DDs journey into health.
@NanFlanders heartbreaking when there are added knock on effects of the illness. Teenage years are difficult enough without these curveballs. I hope she finds her new tribe.

Oh Nan it's so hard, my dd has struggled with friendships and now has a really small group of mates. Has your dd got any friends outside of school? Any family friends with teens a similar age?

I guess all you can do is offer reassurance that once she's in strong recovery she will be better able to reconnect and make new friends.

My dd won't be going to uni and I'm a bit worried about how she'll cope when all her friends go 😕

@myrtleWilson Thank you! What an amazing and inspirational post. And many thanks to your daughter for allowing you to share it. Sending lots of love back to you both.
Thanks also to @BagpussSaggyOldClothCat @ReineDeSaba @Girliefriendlikespuppies @Temporarymember : really appreciate all the replies.

Nan i was thinking about this and wonder how much is the anorexia trying to write a narrative of 'I'll always be your friend' 'I'll never let you down'

Maybe after years of this shit I'm just cynical but to me sometimes when dd talks about how hard life is for her I feel like she's uses that as an excuse for holding onto the ED iyswim.

I think it's worth reminding them that everyone has to deal with difficult emotions, loneliness, resentment, jealousy, anger, frustration are all human emotions and it's normal to feel these difficult feelings.

Anorexia can definitely be used as a way to suppress these emotions and it manipulates the sufferer into believing that empty feeling is preferable to the above feelings.

Recovery is tough in part because those difficult emotions start to resurface.

I wouldn't take it as gospel that what your dd is telling you about her friends is true, it is likely that friendships will be more strained as your dd has been unwell for so long but the further into recovery your dd gets the more she will be able to reconnect.

Trying to get DD to eat 3 meals and 3 snacks a day when at times the only thing she was eating unbeknownst to us was dinner. I am feeling really overwhelmed and would love some lunch ideas as I’ve already done tuna mayo and sweetcorn with cheese sandwiches on multigrain bread two days in a row. I’ve never packed so much tuna mayo into a sandwich before(even made sure I used butter) with a side of veg. Also the dieticians guidance was for 250 ml of fruit juice or full fat milk for each of her snacks, is this typical( snack food plus drink)? Thanks

We're doing 250ml ff milk 3 times a day and also 4 fortini shakes. He was very low weight and really close to tube feeding so it was a life saver for us. My son has arfid so we're limited to what he can eat so I'm probably the wrong one to ask about packing in calories! The dairy is great for helping restore their brain and protect their bones so the more the merrier was my advice. It took me about 2 weeks to get the 3+3 going and even now he is still quite distressed during meals and snacks or angry. We do have little glimpses of him coming back though and in 4 weeks we've gone from 76% wfh to 92%. I'm not sure if anyone has told you but when your daughter is fighting back and refusing meals that's the Ed pushing back to try and keep control, your fighting a demon and the more that goes in are wins for you and means your heading in the right direction

I have been keeping a low profile so will catch up on new messages later but really wanted perspective/advice as we’ve been cast adrift by ED services. Saw GP yesterday to monitor weight, but he (lovely though he is) didn’t know what wfh was and has no guidelines for frequency of appointments. He initially said three months but when I said we’ve been used to fortnightly we are going back in a month.

Anyhoo, her BMI is now 14 so on 2nd centile which according to BMI calculator is a healthy weight. WFH has slipped though, to 83% - we were hoping to get her back to full time school after Christmas. So, do we go by centiles now she’s been discharged or should we still be led by MEED guidelines? I’m so confused, just don’t know what to think about is my daughter ok or not.

@Proseccoismyfriend thanks for the info. I ended up breaking down in the supermarket yesterday and was in floods of tears. It was a pack of ham that got me. Looking at it and thinking that to get the correct serve of meat for her that it would probably require the whole packet and even then I am not sure it’s enough. No idea of wfh but she lost 2 kg in a week(over 4lbs). I don’t think I’ve ever felt so out of my depth before. Really do feel like her life is in my hands and we’ve got a holiday booked over Xmas with family. I want to cancel but DH is insisting we still go.

@Glitterfarti sorry to hear that you and dd are not getting the support that you both clearly need. Hopefully someone more knowledgeable than myself with be along soon to provide some guidance/support

@Cantfindthewordsddstruggling My DD is an inpatient, and they have 4 snacks a day which consist of either Walkers crisps, muller corner yoghurt, nature valley cereal bar or 3 biscuits along with 300ml of ff milk. They also have 300ml fruit juice with breakfast.

@Glitterfarti i am so surprised your DD has been discharged at such a low weight. My DD has gone from 63% to 85% and they will not even consider discharge until at least 95%, at which time she will be monitored in the community for 12-18months. She cannot go back to school or do any form of exercise until she is 85-90%. I would certainly be asking questions why your DD has been discharged from the system. Some of the patients on DD’s unit are admitted on 85%.

@Glitterfarti that's awful, I feel you've just been pushed aside and left to it. Do you have access to a dietician to help support you?
@Cantfindthewordsddstruggling it really is such a lonely emotional time. I'm forever breaking down in tears, I'm finding Christmas especially hard we've cancelled most plan that involved food as we can't put our son in that environment just yet and everyone around me appears happy and looking forward to it and I'm dreading the meal already. We had a trip to New York for new year but he isn't fit to fly so I'm trying to delay it till next new year and British airways aren't being terribly helpful, just another battle I don't need right now

@Cantfindthewordsddstruggling - The milk is absolutely essential. I read somewhere that around 90% of anorexics get osteopaenia. Bone damage is the only physical symptom that can't be reversed. My DD also had calcium tablets for a while. In terms of lunch: lentil soup (home made with coconut milk in), hummus and pitta bread, cream cheese and red pepper sarnies, ham (or Quorn ham -dd is veggie) with Caesar salad dressing in a wrap, cheese. All with crisps, fruit and either a yoghurt, rice pudding or custard pot. Good luck - I know it's hard

@Glitterfarti I'm also massively surprised that your DD has been discharged - especially if she is now losing. We were always told that 95% is the minimum for discharge from services. Can you appeal to her consultant?