Support thread 14 for parents of young people with an eating disorder

[Curlyhairedassasin]

New thread as old one is filling up

Can anyone advise on applying for DLA? One of our CAMHS team mentioned it to me the other day, I’m going to ring tomorrow for the forms. Daughter is currently in hospital and most likely moving to a residential unit once medically stable.

@SendTheNextOneIn DD gets DLA. I would suggest you Google the 'Cerebra guide for DLA'. It's prompts you through all questions and what to consider to put down. Make sure you add as much evidence as possible (CAMHS, ED team, school, EHCP if you have one).

Ring them for the forms. They will send it and if you complete within 6 weeks and the claim is successful, the starting date will be backdated to the day you rang (otherwise it's the day the forms are received). and be patient. it takes about 6 months for current claims to be looked at.

@SendTheNextOneIn Our Pip was stopped when DD went into a residential unit for more than 4 weeks, so this might happen to you - do challenge if they try to do this. Alder Hey told us that under-18s should still receive Pip - there are usually considerable costs involved in visiting. We got quite a lot of back pay in the end.

@SendTheNextOneIn how old is DD? DLA is only until 16. Afters, it's PIP.

If she is under 16, then DLA typically stops after 4 weeks in a residential setting but not whilst being impatient at hospital - inpatient treatment doesn't usually affect DLA.

@SendTheNextOneIn Good advice there. Be prepared to find filling out the forms upsetting. I found it really sad to write down all the ways her illness affected her and us as carers. We waited 11 months to get it: keep chasing it till once you have it.

we had that problem too. PIP stops after 4 weeks in hospital for adults over 18 but is paid for 16-17 year olds while they are in hospital. (There was a legal challenge but only for 16-17 year olds). DLA is also paid for the whole time they are in hospital. The government website is good and also the disability rights forum.

I wish I didn’t know this…..

Thanks all. She’s 13, 14 in January. I think it’s highly likely she’ll be in longer than 4 weeks so I may not bother claiming. Just seems like a lot of hassle for something we might not get for a particularly long period of time when I just want to focus on getting her well. I have a friend who works for DWP and I know it’s not the same but you just hear horror stories of people being overpaid benefits and then having to go through the process of paying it all back so it feels easier to just not bother!

You don't pay back DLA. That scandal is about carers allowance. Is she is an eating disorder unit or on a general hospital ward (the latter should not matter).

She’s currently on the general ward in our children’s hospital. But we are progressing with an ED unit referral as she is just losing weight at home and she’s decided she wants to be admitted into one instead

Good luck @SendTheNextOneIn keep talking. General children’s wards are hard as the doctors aren’t trained etc. we’re here xx

I hope everyone is doing ok. And I’m so sorry to see new people come to the thread. I haven’t posted for a while and I’d like some advice please after my day yesterday. This is about my dd’s 2 long term best friends. They are both 17.

Friend 1 She has been losing weight and the family have a lot going on. I saw her yesterday and we talked. So much more weight loss. Then I had to speak to her parents as I think there is a possibility she could have long QT. She’s been waking up sweating. Then her parents told me she is being monitored by the GP for anxiety as her heart rate has been incredibly high and erratic.

I want to know how urgent this is. For me, if it is long QT, there’s a possibility her heart could need to beat before it’s recovered so there’s a risk of death. I have told them to get urgent bloods and ECG. She’s eating possibly around 1000 calories a day 2 or 3 times a day.

Should she present at A&E? Or should she be getting an urgent referral to CAMHS? Bearing in mind CAMHS were pretty useless here, very slow and we urgently got the ED coach on board, who told me I saved her life, not sure that I’d advise that for her.

She really wants to eat without external help. And that’s a tough gig. She is extremely stressed but aware of her weight loss and wants to reverse it now that she’s on a break from her boyfriend. He doesn’t eat much and I think she’s basically copied this. Neither does his sister. He’s been living at her house until 2 days ago, when her parents kicked him out.

Her eating was already disordered before she met him, like a lot of teens. I’ve told her parents what needs to happen eating wise. But that she can’t go on 3 plus 3 until they know what they’re dealing with because of potential refeeding syndrome. The girl has a plan in her head from what we’ve talked about of what and when to eat. And she really wants to eat, to put the weight back on. The more I write the more I think she just can’t do it alone. Even with her parents helping her. She may just get fed up and take an uber to the boy’s house (he’s back with his mum) or to see his young adult sister, who also hardly eats.

There is a lot more to this. She needs to get away from this family for a lot more than just food related issues. But that alone is enough.

Friend 2

It was a hell of a long day as dd’s other friend also admitted to her mum after a trip to the doctor (because she’s been fainting in the shower) she hates herself, wants to stop eating and from what I can gather is binge / restricting. The friend then called me in tears and asked to come over because she knows I understand. Her mum then called me very worried to fill me in and ask for my advice.

The friend told me she recently lost 4kg in 2 weeks then put it back on again and has been binge / restricting. I know that’s a MEEDS red. She was a lot slimmer a couple of weeks or so ago when I saw her so she’s obviously recently had a binge.

I’m telling her mum to get my dd’s ED coach urgently on board or get her to another clinic privately. I have info on that too. They have the means to pay for whatever she needs and this is the most expedient route. The doctor told her if she didn’t stop this she’d need a referral but that is going to be much slower as there’s a lack of understanding for what’s happening for her.

I am also going to keep in contact with this friend as her parents also have a lot going on. And I’m texting her mum trying to get her to understand the urgency as there’s also a lot of denial going on there and her dad is just telling her this is something all girls go through and she has to go to work today. She works in the family business.

If anyone has any info on this latter girl, I’d greatly appreciate it. For me, it’s ED coach and to watch for MEEDS red, which I’ve yet to feed to her mum. This is all the more complicated as the girl feeds herself. She has refused to eat her mum’s cooking for a considerable amount of time as she wants western food, which her mums doesn’t cook, and I’ve just realised this is also a control mechanism, which her mum isn’t understanding she needs to eat so there’s probably some kind of battle to ‘eat my food’. I’ve advised her mum to take her to the supermarket today to buy her favourite food. The girl thus far has been expected to fend for herself on this front. Her mum has a lot of issues around weight so there’s not much food in the house and pretty much nothing the girl will eat.

These are both the 2 friends, who’ve been great support to my dd. So it’s so sad that they’re now going down this route because of things going on in their lives.

Does anyone have any experience supporting a yp whose ED started when they are an adult and navigating treatment / caring? Ny DC's team do not seem to want to implement family meals/magic plate and tell me that its for my DC to decide how/where they eat. I feel like I am watching them starve themselves from the sidelines

@unbuckle we don’t do family meals/magic plate 1) failed for her and 2) is less popular with adult services anyway. She talks to the dietitian about a meal plan that provides sufficient calories/ nutrients and then i make it and supervise her eating it. It’s a long way from eating freely but she can’t choose her own food or eat alone. I despair of adult services sometimes.

Me too, mine does not agree to being supervised so it doesn't work for anything, it drives me nuts, they don't gain weight, they're not independent...

Slightly more random question time but I’ll ask anyway. We’re struggling, as you can imagine, to find clothes to fit my daughter currently. Prior to all this she was very slim anyway as she’s done gymnastics since she was 6. She’s 13, 167cm tall and was just starting to fit into adult size 4-6 clothes before she started losing weight. She needs some more clothes (specifically bottoms/joggers really) before she goes into the residential unit in the next week or so and we’re really struggling to find options that fit on the waist but long enough in the leg (all her height is in her legs), and it’s starting to really get her down. Any advice on navigating this for her would be appreciated!

Mine just wears jeans with a belt with additional loops punched in, but maybe that's not allowed in inpatient? Also xs mens clothes turning over the waistband
Hope someone with experience might see @Mummyoflittledragon ' s post x

@SendTheNextOneIn DD used belts and also wore dresses. We also various bottoms etc from h&m from the kids range (girls sizing goes up to 170). I found this is cut slimmer than standard adult sizes. They also do various jeans with elasticated waist bands (in case belts are not allowed).

She’s not a fan of jeans generally, she mostly wears joggers/leggings but everything just hangs on her. She’s also very particular about the style of jogger, preferring straight leg currently over cuffed. I’ll look in H&M again though, their stuff isn’t too bad a fit. Thanks all.

@SendTheNextOneIn i had that problem. Hollister does small sizes and lots of joggers of different styles. I also got her clothes from uniqlo which had smaller sizes than most . Their heattech clothing is good- stylish and warm as she gets very cold. It’s usually well priced too

Thanks @unbuckle In all the turmoil I hadn’t realised dh had a session with the ED coach yesterday evening. So I took 10 minutes to talk to her about the situation. She told me to advise her parents to call 111 and book an appointment with A&E. Her dad hasn’t done this as she isn’t at home atm.

The coach also told me to back away and not monitor both girls (which I didn’t intend to anyway as I am at full capacity here) because I risk putting dd’s ED in competition with the girls because dd’s ED will see them getting all the attention and may well want to get in on the act in a sort of: “She belongs to me, she’s mine, not yours”. And I haven’t contacted her friend because she’s not my child. A couple tried to take our dd from us last year because they thought they knew best with dd and her ED. We had a bit of a quasi hostage situation, where they were telling dd she was their family and denigrating me to our dd. I couldn’t even write about it at the time. They nearly succeeded in taking her. I just can’t support these girls because of what that could do to the families. The love that you have to give to keep a sufferer on track is intense. It would be so inappropriate.

You also asked your own question. I just also wanted to tell you what the coach said to me regarding my dd once she turns 18. The coach said that as long as she’s under our roof, it’s our rules. Actually it’s the ED coach’s rules tbh that she’s taught us. I am hopeful that my dd will be recovered enough before she turns 18 next year to be able to loosen the reins a lot. But if she isn’t, I do intend to continue to follow this even though it will be incredibly hard.

Neither of the parents of dd’s friends have done as I advised. Because the way we’re parenting dd is very alien to the parents of most 17 year olds. And the coach agreed with all my advice. I explained this to my dd yesterday referencing Friend 2 (I haven’t told her about Friend 1), opening up a discussion again with her that she is being parented very differently from most 17 year olds. And that maybe it does feel controlling to her. However, one day things will change and it will be in the past and not important anymore.

I (well we but mainly me as I’m the big threat to the ED) have been having a lot of resistance to our (mainly my) parenting recently as I’m having to be ‘bad cop’ a lot of the time. And I have been using the example of her friends, whose parents stopped parenting their children some time ago and throw their arms up and say we have no choice and where that is leading. That’s no judgment on these parents btw as we were going down that route last year with the ED. Since having had a couple of those conversations, dd has calmed back down again. It’s been a tough few months or so on that front because she is year 13 so some of her friends are already 18.

Our kids are so vulnerable unfortunately and often lack the learning they would have had at a certain age. To put it into context, at her worst with her restricting last year when we first started working with the coach in June, we were having to treat dd like a year 6 kid because she had regressed to about the emotional age of a 10/11 year old.

Hi @Mummyoflittledragon I think you have to separate your dd from these friends unfortunately and you need to also separate from the parents. It’s really hard but they have to find their own way and your focus has to stay on your dd.

One of my dds friends developed anorexia, the mum messaged me to give me the heads up which was good but I avoided giving any advice as partly I didn’t want that advice getting back to dd. Ed’s are so competitive so I think dd realised early on that the friendship needed to take a backstep as they would just trigger each other.

@Mummyoflittledragon I have to say I fully agree with girlie, was going to post something similar. Just focus on your DD.

@SendTheNextOneIn Bershka is another good option for joggers. They come in different lengths and tiny sizes. There's also a teen section

Thank you for your advice @Curlyhairedassasin and @Girliefriendlikespuppies. I have indeed now backed away. Both sets of parents are in total denial and the parents of friend 1 are in blocked care. I have done and said all that I can. And am now focusing on dd.

I definitely won’t be encouraging the girls to see one another. And it is such as shame. These girls were such support for dd when she was so very poorly. And they’re her long term best friends. Dd seems pretty oblivious to the severity of the situation for them and as yet has little insight into her ED. She thinks it will all work out ok for them and isn’t in a good enough mental state to think to find out how they are. She has plenty of other friends and the friendship with them is naturally drifting currently so I’m not going to tell her outright not to see them as it will likely trigger a PDA response.

The ED coach also told me that EDs can become competitive moreover that if dd saw me caring too much for her friends this it could trigger a response in dd. And I have no intention of caring for them. That would be so inappropriate and necessitate my playing ‘mum’. What I hadn’t thought to do was to say something about this to dd. And the coach advised me to spell out to dd that she is my priority and I’m not the girls’ parents, that these girls have parents. And I have now done this.

Considering how much I care about these girls when they’ve done so much for dd, I can’t believe how incredibly calm I feel about things today. I think accepting that I really have passed on all the advice a trained professional would give and that I therefore can’t do any more is somehow incredibly freeing.

Edit - to add I realised I just repeated myself from my last post. I’m also very tired from it all and am going to be now. Wishing everyone well. X

So DD is officially being admitted to a T4 unit on Tuesday. She’s been in hospital a week and a half and we were really hoping she’d be allowed one last night at home on Monday before going, but ‘they’ve’ said no. She’s beyond gutted. They’ve granted us six hours of home leave instead. I’m so sad for her that she doesn’t get one night in her own room before being away from us for who knows how long.

we have decided though that we are going to completely redecorate her room for her while she’s away.

any words of hope and strength greatly appreciated though, we’re all so sad that it’s had to come to this (even though she’s decided that T4 is what she needs to do to recover, we just can’t manage at home). I’m hoping this will allow us to go back to being mum/daughter though rather than me being mum/doctor/dietician/bad guy.