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

[Curlyhairedassasin]

New thread as old one is filling up

Mummyoflittledragon,
But obviously if dd, like mine, refuses the HCP to talk to parents, then they won't.. (Once 26 years old).
You can have a one way conversation, I would email the HCP with my concerns. Standard reply was" Thank you, but we can not discuss with you anythingregarding your dd"

Sorry, not 26 years but 16

Thanks all, so much to think about here. It’s really hard at 16, nearly 17 when they have such a large degree of independence and legally I have no rights to her medical details. Hard to navigate under “normal” teenage scenarios, let alone with an ED. I haven’t had scales in the house since forever, but I know she weighs at friends houses etc regularly, and that’s hard to police. I like the ideas of putting information into the system, even though I can’t always get feedback. Need to think through further how I acquire the tools to help some of you have mentioned in a way that doesn’t cause a backlash from dd. (And yes to the person who asked she has put on 3kg and not collapsed since). Thanks again for everyone taking time to write and share, it’s so much appreciated

Anothersetback
Yes this is true. I hadn’t thought about it in this way. My dd is 17, almost 18 and the ED coach will continue to work with us as long as we require. She isn’t bound by the constraints of the consultant and in this regard, does not need dd’s consent to talk to us. Much as she was trained and worked for many years as a MH nurse, she is clear she is not acting in a medical capacity.

As for skills, there are books, courses, specialist dieticians and ED coaches @Morereadingthanposting

I also have one that won't go above 45kg, I wonder if that's some magic number they pick up from tumblr or somewhere
If you are at the actual maudsley i would be extremely careful in how you interact with staff

Idk about the weight as dd has never been aware of her weight. It’s just so tiny. I am wondering if that is to delay periods / puberty.

We are nowhere near Maudsley, but why would you say that? I thought they were held in high regard.

You would think so. I found they had very odd and entrenched beliefs about family systems and absolutely couldn't distinguish between cause and effect (e.g. you are stressed and anxious your child is going to die ergo you have always been stressed and anxious and that's what caused the ED). I even went to a session where a family therapist described EDs as having a useful role to tell families where the real problem was e.g. unhappy parents.
They dress it up in modern language about being person centred and bodily autonomy, but as far as I can see the underlying beliefs come from the 70s

Oh I see. Apportioning blame is really unhelpful, as is fixating on one specific thing. The ED coach did ask for information on any triggers we could think of. Reducing stress around these triggers is something we then have worked on. For dd there are a number, eg her medical condition, which makes her feel different, more widely not wanting to feel different. At no time has she apportioned blame. What she said was that a sufferer holds a lot of anxiety for at least a year before the ED starts. This was absolutely true with dd.

Hi everyone. Joining you all here sadly. Recent referral to Camhs for my DD15. So we’re along for the ride. 😓. We are on holiday this week which is hard. My question is- how do you deal with the stress? The taking hours to choose a bloody sandwich and the stares off strangers. How do you deal with the pain of looking at your child in a sun top?

To add to my post we are managing 3 meals plus 2/3 snacks a day. She has accepted she is ill. She wants to get better but the noise is very loud in her head . It’s all new to us and we are still waiting for our first appointment with camhs. Anyone in Nottinghamshire have experience of the teams there? I’ve been going deep into the EM book and these forums and it’s scary.

oh @Raspberrysins I feel your pain, it is so sad to see the changes the ED has made to our children's bodies. Take heart in knowing that as she gets well that will change, though in my experience DD may not like the change! always a new challenge on this journey

Re the time choosing a sandwich, the advice is to take choice away from the young person, as the ED voice will be telling them every choice is a wrong choice. Carers need to present food as a decision made, calmly stating it's the right thing for them.

I know that's easier at home, we went away a month into dealing with this and there were times DD was involved in choices then as I couldn't think of another way, but you should limit that if you can. I found a brief advance discussion helped, preparing for any choices and ultimately making that choice myself if it wasn't resolved quickly. We also went separate ways as a family if needs be, DH and DS went for what we would normally do when away, DD and I went elsewhere to avoid an 'audience' and, in some cases, back to our room to eat familiar agreed food from home to keep the intake up and reduce the pressure when we were out and about.

I also get that the book and forums can be scary, try see it as forewarned is forearmed. Not all young people experience everything you will see here, and lots make at least a partial recovery quickly. I found knowing how this could go gave me strength to persevere with those early difficult meals, and to take comfort in every tiny positive step.

You just deal with the stress and the pain when you’re not with her as much as you can unfortunately. It’s heartbreaking seeing them so emaciated. I got myself some therapy. And we have an ED coach on board.

Dd still hasn’t really accepted there’s an issue a couple of years on, albeit she just kind of goes along with it and therefore accepts at a subconscious level. So that’s really stressful. On the positive side, your dd is aware there’s an issue with her eating and from what you’ve said, talking to you about it.

@Raspberrysins sorry you find yourself here. I don’t have experience of Nottinghamshire services specifically but we are just over the border in Derbyshire. My daughter is 14 and currently in inpatient treatment in Nottingham. Feel free to message me privately if you’d like to talk more about this area specifically.

Hi @Raspberrysins I'm fairly new here too. We're about a month ahead with our 15 yo. We're in a different part of the country to you but have found cahms good so far.

Honestly, even only a month on I feel less constantly churned up and awful. Like your DD mine is eating 3 meals and 2/3 snacks too. It feels better knowing we are tackling it and have support from CAHMs.

As a previous poster has said, don't give her a choice when it comes to food. Less stress for all of you.

Take care of yourself too..I've kept on taking time for myself. I haven't always wanted to but I feel better keeping busy. I think it's reassuring to DD as well that routines are kept.

Sorry to see all the new joiners. It's not a club anyone wants to be in!
I agree about removing choice when it comes to food or at least limit it to "this or that". The brain doesn't work properly when it's been starved of food.
We found the help from CAMHS ED team invaluable and really helped bring our DD back. We were referred and diagnosed in August and have just been discharged. She's absolutely not quite there yet but we know what needs to be done and we keep plodding on.
The illness really takes a toll on normal life. It's relentless but it is possible to recover.

Thanks everyone for your advice and support. I get the no choice thing but I’m not confident to do that. Eg. At the airport we’re all choosing a sandwich. DD chooses one - it seem ok to me- chicken salad baguette. With an apple. She won’t have crisps. But then crisps are shit anyway aren’t they? For breakfast it’s a buffet. She had egg and toast. Then fruit. I think these choices are ok. But it does stress her out and takes AGES

In the ED world, we don’t make judgments about certain food types. All food is food. And your dd needs to eat a lot to put weight back on. And within reason, what that is isn't that important. A baguette and an apple, if the baguette is a decent size, is actually not a bad meal. However this is still not enough to get your dd to gain any significant amounts of weight. And the quicker she can gain weight the faster she will recover. So normal food rules are turned on their head.

It’s good she’s taking all this food. Egg and toast and fruit are really good and balanced choices. If she continues to eat the 3 meals and 3 snacks regularly and starts to recover, she will be able to eat more quickly as time goes on.

@Raspberrysins you're in the very early days and are away on holiday so it'll be difficult to implement things. Your DD is doing very well to be eating the meals and snacks. I'd use this time to read all you can and once you're home and have the support of CAMHS you can implement more structure.
Choice is much harder to avoid when eating away from home. Planning ahead can help avoid them standing in front of food aisles for what seems like hours. Send one adult ahead to buy sandwiches for everyone, rather than you all going in and choosing. Let her look at the menu ahead of going to a restaurant so she knows what she'll pick. She knows what's at the breakfast buffet so agree what she'll have before even going down to breakfast.
I suspect she'll need to up her food intake significantly but that can be focused on once you're back home. Best of luck

You need to make the choice for her 🤷‍♀️ it’s kinder to take the choice away as the ED will beat her up wherever she decides.

Crisps are definitely not shit and with my dd I pushed her hard to get her eating crisps again. All food is good food, there are no shit foods.

All your old beliefs around food need to disappear, what your dd needs now is high fat and high calorie foods.

So for breakfast I would pick her the eggs on toast with a croissant or similar rather than fruit.

Lunch would be a baguette with a cake and crisps.

Avoiding fear foods just prolongs recovery imo.

Girlie gives very good advice. I just want to caveat it for those with autism &/or PDA. In those cases, you know what your child ate before the ED and it is important to communicate that to the team. There may be foods that they have always avoided due to sensory issues and it is unreasonable to expect them to start to eat them now. Don’t underestimate how hard it can be for somebody with autism to recover from an eating disorder. They may need choice and progress will be slower but recovery is absolutely possible. Some units use the Peace Pathway which is specifically designed for those who are neurodivergent.

Thanks all for the advice and input. It’s hard as we’re on holiday and half board too. DD has always shown sign of autism but is high functioning so we never diagnosed and she wouldn’t consider it anyway. She’s definitely wanting to control everything but also hates not knowing what’s coming. This disease is evil. I’ve seen some good videos saying it’s like a bully living in their head. Anyway I’m not going to dictate too much this week but I am seeing her eat three good meals a day plus (some) snacks. She just managed an Ice cream but I know it was so hard. However we also went on a walk today so the voice probably told her it was allowed 😓. She is a rule follower and will do what the dr says or what camhs say. At the moment we’ve had no advice from anyone except on here and she’s pushing against that. I think she expects it to come directly to her from a specialist rather than her mum who’s been deep in forums on mumsnet. Sorry for all of you going through similar or for a long time. I just want to close my eyes and fast forward 12 months and see her glowing again. I just want one day of not feeling anxious.

I get what you’re saying about the autism @Raspberrysins. You can’t get your dd assessed anyway until she is eating correctly again. It’s good that she is a rule follower. That will be very helpful for your dd. Mine isn’t. She also has signs of PDA so it’s really tough going for her. The others are correct about taking charge of what she eats. Unfortunately because of my dd’s demand avoidance, that didn’t work at all with her.

As for us, dd has come out of relapse. In some ways she’s less controlling. Not in all ways and I can’t get morning snack up beyond a paultry chocolate pancake. And because she’s slowly gaining weight, I can’t rock the boat on that score. The ED coach said to run with it. However if she wants to exercise on any given day, she needs to be eating a decent amount from morning snack and she is complying with this.

Dd has been diagnosed with autism today… I haven’t told her yet as she’s not ready to hear it. She has a lot of ADHD traits and the assessor said she’s quite a risk taker, which I hadn’t really realised the extent… she apparently crosses the road without looking as she assumes cars will stop. She’s nearly 18! I’m not quite sure how to handle this right now. And I’m going to get the ADHD assessment done asap as that’s a pretty much foregone conclusion from what the assessor was saying.

She has A levels in just over a month. I also need to not rock her world too much.

@Mummyoflittledragon that sounds hard. I guess the A Levels might have increased her stress recently and could explain the slight relapse? My DD said it helps her deal with stress. If she’s at least slowly gaining then that’s not terrible I guess.. but I’m not an expert. Year 13 is full of pressure and uncertainty- which uni to go to - if at all? They need to know what’s happening and when they don’t have control I suppose the food becomes default control position.

Hi. I'm an adult suffering from AN. I went away shortly after being diagnosed and it was very stressful on the food front. I'd highly recommend discussing in advance what you're going to eat and if you find one of those anorexia recovery plan things in the Internet it will tell you roughly what to aim for. So breakfast should be 2 slices of toast OR cereal PLUS butter OR 250ml milk AND fruit. Then TELL your child in advance that you are going to get them toast, butter, yoghurt, fruit from the buffet and don't allow them to wander around stressing. No downward negotiations! Do the same for lunch and dinner.

I would add though that this will be incredibly stressful for your child, so I would encourage you to not eat out too often. What helps me is to have a supermarket lunch which is 'safe' (sandwich, fruit, yoghurt) and then I can just about face dinner in a restaurant. Usually I choose the restaurant but you might want to limit it to a choice of 2 or 3.

I need some inspiration please! What do you give your young people for snacks? DD is coming home this evening until Monday. I’m trying to do my meal plan for the weekend. She will have a snack and a yogurt three times a day so I’m trying to come up with some new ideas. She’s vegetarian, but also doesn’t eat eggs, avocado or nuts. I normally give her a cereal bar or some biscuits (according to her meal plan on the ward, snacks should be ideally around 120-150 cals, plus the yogurt). Please throw any ideas my way!