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

@Proseccoismyfriend We have cancelled so many holidays. Depending on your ED team (ours have been good), you might be able to get a letter to say your DS is not fit to fly. Otherwise, do you have travel insurance?

No time of the year is easy when supporting someone with an ED but I agree that Christmas is especially hard.

@Proseccoismyfriend you asked upthread about your Ds looking in the mirror - this can be a frequent ED trait called "body checking" - mirrors, windows, tv screens, all and any sort of reflective surface will suffice for a body check. When DD got to the point of wanting to recover she covered up the mirrors in her bedroom with positive quotes etc as she knew despite her best intentions she'd glance at the mirror so may has well have some aspirational statements on there. It is hard to 'manage' because there are so many opportunities to do it but once you're alert to it, you can at least try to distract etc

Sorry @Proseccoismyfriend on re-reading your post, were you asking about the body checking or the wanting to tell you something as an ED trait - huge apologies if I've mom-splained something you didn't need explaining 😳

My daughter lost all her friends at secondary school mainly from being absent but retained one good friend through messaging/meeting up in holidays, then went to college, and made much better friends. Secondary can be a bit of a nightmare, even if you don't have an ED/absence in the mix.

Hi @myrtleWilson that's reassuring, now you mention it I've noticed him checking in the reflection of the oven or window too. The Ed team really hope he can start karate again soon so I'm hoping that'll be another incentive he's also hopefully getting full days at school from January providing he keeps heading in the right direction. When you think this shitty illness can't get any worse and you realise how much it keeps taking.
We are waiting for a letter from the clinic so hoping that helps, he's so disappointed he can't go so having that to look forward to would be nice

@Proseccoismyfriend we had one 'holiday' this year and that was staying with close family in Europe. In a house, fridge, kitchen and it was hell. On the way home we got caught on the air traffic chaos that cancelled so many flights and spent 2 days and nights on the airport. There was hardly anything DD would eat. I still have not recovered from that trip. if he struggles that much with eating I wouldn't go, even if he is fit to fly. Is his ED covered by travel insurance and can you cancel?

I can't ever imagine us going out again for a family meal, he can start off ok then half way through the struggle begins or when I say he's left too much. I know they're right and even if he is fit to fly the hotel setup, the things we were going to do don't fit around an Ed and we'd be setting him up to fail and undo the good we've finally achieved. I never got round to sorting the insurance so it's potentially a load of money down the pan. That sounds so selfish, his health comes first and we wouldn't want to go without him but we skipped other breaks this year to afford it and it's all we've talked about and planned since January 😔

@Cantfindthewordsddstruggling we haven't had much specific meal plan advice (can't see the ED dietitian) so I've been winging it a bit. It's also a bit complicated because DD won't eat half the things on a typical vegetarian meal plan. Would it be helpful to say what I'm doing? We've had to go up to 3000 calories a day, which has been an ordeal but thankfully is paying off, now up to 94 WFH (from 86 at one point). Her mood is better now as well.

I've made American pancakes with additions to the batter (syrup, melted butter, cream and greek yogurt) served with nuts and ice cream, I reckon around 800 calories each. I'm very lucky she will eat this, for now anyway. Lunch today was fried cheese sandwich, lots of butter, plus crisps and nuts. Personally I've found things like ham and tuna difficult in terms of bumping up the calories. I've thrown any ideas of a healthy diet out of the window. Very little passes her lips that hasn't had butter / oil/ cream added. I'm even adding oil to oven chips. I can focus on more healthy eating when we can just maintain her weight.

Proseccoismyfriend

We had to cancel a holiday due to dd's illness and BA gave us a voucher for the full amount to use within 12 months. We just had to provide a letter from dd's Psychiatrist to say she was unfit to fly.

Unfortunately I'm not sure we'll be able to use the voucher so will try pleading with BA to extend it but we're probably going to have to let it go.

@Curlyhairedassasin that holiday sounds hellish 😞. I really feel for you. Our holiday was tricky and we didn't have the hell of being stuck in an airport!
@Proseccoismyfriend hope that your Ed team come through with a letter and you can get a voucher from the airline. It is quite demoralising how much this illness takes from you and the whole family.
@myrtleWilson that's a handy reminder to me to get rid of the mirror in DD' room, thanks!

Just for info, I have taken my dd on two trips abroad which were difficult, but we did get insurance. I went to a specialist company and it was much more expensive but it is possible, you have to disclose the ED, any MH issues, hospitalization and also state that you have been cleared to fly so you couldn't fly against medical advice as it would invalidate the insurance. My dd was allowed, begrudgingly, by the ED team to fly.

I would say though, that she enjoyed both trips and did get something valuable out of it, but she has a different type of ED than many on here (bulimia) so will eat a variety of foods, that's not the main issue (although she was underweight, she was stable and that's why the team allowed her to fly).

I thought it might be helpful to know you can get insurance, as it took me ages to find one that would cover her and if I remember rightly it was about £130-150 for a few days trip!

@Blinkityblonk that is a lot. we didn't manage to find cover for the ED at all and just chanced it with the EHIC card. between us (family), we have a quite a few conditions to declare. we get them all covered but nobody appears to be willing to cover anorexia.

Just for future reference I found a good quote with staysure £204 for USA that included all of us with no other conditions. Not many companies appear to cover eating disorders

@Proseccoismyfriend not sure if I got that right, do they cover Anorexia?

Yes they would cover it, it was late and I didn't read all the small print so worth checking. The quote jumps up if they have been admitted to hospital with the Ed within the last year.

DD17 was discharged from the ED service in January 2023. She has a three days overseas trip coming up with college - I have told her tutor that she was under the eating disorder service - as she is discharged I’m worried that I maybe shouldn’t have raised this as it may cause concern with the college trip insurance policy. If so she is covered on our family policy anyway - I know little about how insurance works?

If she's discharged I suspect it won't make a difference, I think it's so much higher and harder to cover in case they would need to be admitted when away and then the risk/cost involved with getting them home. Hopefully the further into recovery it's not needed or such a high level of cover won't be required

Never thought about travel insurance.....
I did have a look this morning at Staysure. It was also mentioned on I think money saving expert forum . They ask about mh condition in last 2 years. But there is also an option to actively exclude it from the insurance cover. It halved the cost...
DD still under camhs but also hoping to travel in the summer on her own (will be 18) and should hopefully be discharged by then.....

One of the questions they ask is about hospitalization in the past two years, so if your dd or ds has a history of that then this will be taken into account, that's the same for MH disorders as well. It's not just about what is happening at the time of travel.

I got the separate insurance as my dd does occasionally need to go into hospital for checks, and has a history of this, so I don't want her abroad and then not able to have good care or to be able to be transported home on a medical flight. I also stopped her travelling to a third place due to poor health care in that country, and also, right now she needs to be nearest the hospital that knows her and not somewhere without her records.

She is not usually an inpatient, but she just needs a lot of health checking e.g. if her enzymes go wrong, or to check the heart. All is usually okay, but I don't feel going to other countries who wouldn't be able to deal with that is a risk worth taking right now- she has been better. It also depends if she's travelling with a family member which makes it easier.

Don't assume a family insurance policy will cover anorexia unless it's declared, it won't!

@Nomoreplease23 unless you declared the AN when taking out the insurance, I doubt she would be covered. We always have to declare a few conditions which pushes up the premium a bit but undeclared conditions are not usually covered. Having said that, if she is going to Europe, there is always the GHIC (or whatever it is called). But it has been hit and miss for me and the kids. Some doctors/hospitals just don't seem to know what to do with it.

The GHIC card works in Europe for emergency care, the reason I took out insurance as well is that it doesn't cover medical transport, so if your teen got ill out there with anything ED related (which might happen to us) then I'd want them moved home for treatment, not treated in a country that doesn't have their records and wouldn't know what to do.

Hello , sorry not seen your other posts but wanted to say my dd is 11 and was diagnosed with AN. It’s better to get a diagnosis and her get better but again I haven’t seen your posts so not sure what’s gone on up til now. Have you checked her phone ect, at 11 they do know all about calories they look things up ,look at labels , I didn’t even know this until I checked her phone it’s very sneaky. Anxiety is very much part of an Ed. Hope she is ok it’s so sad to see them like this. X A bit of hope for you my dd does now eat lunch at school with her friends so it can get better. I was told although it’s horrible for them to have this so young it’s actually much easier to get it under control than them having it in later teens

Thank you @Curlyhairedassasin - yes her AN has been declared on our family policy (and we have claimed when holidays have been cancelled due to DD’s illness) - I will bring this to the colleges attention as I imagine the package college trip insurance will be limited whereas ours is quite specific - anyway she says she never wants to go on holiday with her parents ever again 🙁

I feel like we are turning a corner. I don't know how long this will last, I dare not hope too much. But DD is 94 WFH and she is happier, laughing, the most noticeable change is her facial expressions have returned. I hadn't realised that in AN their facial expressions are flat. She seems to want to get better, to have a normal life. School have chosen her to visit an Oxford college in Jan. It's just a small group so she's really pleased, I'm hoping just the idea will spur her on. I don't think it would actually be a good environment for her.

The improvement has been since we've been doing 3000 calories a day and had consistent supervised lunches. That amount of calories a day was pretty difficult at first but it seems to be going better. I'm so exhausted but I'm off work now for Christmas so hopefully will recharge my batteries.

My question is is it normal to have relapses or is it totally possible just to keep plodding on towards recovery from here.

Yay eyelashes that's great news 👏🏻 I found 3000 plus calories was what seemed to help dd move forward as well.

They can definitely have relapses, I think they key is not to hand back control too soon and keep pushing them forward.

In your case I would definitely want to get your dd to at least 100% wfh with a comfortable buffer.

We're okay here, plodding forward, dd seems okay but I am aware that lunches seem to be very hit and miss.