Teen Eating Disorders support thread 3

[Girliefriendlikespuppies]

Thought I better get a new thread going!

Please come and join us if your teen is struggling with an Eating Disorder. We are a kind, supportive bunch of parents looking to support each other through the dark days of caring for a teen with an ED.

@Lottsbiffandsmudge amazing weight gain, it gives me hope one day we will all be able to follow your success.

@sm701 the fear of eating and then ‘loosing control’ is very normal with AN. My DD watched food videos, baked (but didn’t eat), wanted to go food shopping etc a lot at the start. The food videos have reduced a bit but she still sometimes watches them. We banned her from cooking and baking. She admitted to me recently that baking would just stress her out now as she eats my cake but doesn’t want to know what’s in it.
I think the ‘loosing’ control thing can best be dealt with by having a meal plan and sticking to it but using it as a minimum base line. The carer taking control of the food should mean the patient can relax a little as they won’t be ‘allowed’ to over eat.
I am so sorry it is so hard for you and your dD at the moment and I agree that you sound very much in the worst throws of AN, just as my Dd was in Nov/Dec/ Jan. I am also sorry olanzapine doesn’t seem to have helped although it probably has but maybe not as much as hoped.

@Lottsbiffandsmudge that's a great weight gain, well done.

DD1 spent 2 hours at school today. She's asked to go for longer but I will need to chat with school about food supervision.

Hi all, so just to give a bit more of an update. Yesterday was manic with people in and out to speak to us constantly. DD has her own room which is a good thing at least as there is a little bit of privacy. A nurse has to sit with us while she eats. She has a strict 30 mins to eat her meal otherwise she has to have an equivalent calorific drink instead. She is then not allowed to go to the toilet for an hour after each meal. She hates all the restrictions and it makes her very anxious but she understands the need for it. She is 100% compliant at the moment and is doing everything that is asked of her. She is eating everything in the timeframe and I can see it is a struggle for her. But at the moment still no dessert or snacks have been introduced so we shall see how she is when faced with them.

DH brought up some things for the both of us earlier. One of the items he brought up was a skirt that DD ordered that she’s been waiting on for a few weeks. It is a size XS, the smallest size available. She really loves the skirt and decided that she wanted to try it on. I could tell just from looking at the waist that it is going to be too big. DD said that just from looking at it she would assume that it would be too small for her. So there’s clearly still some body dysmorphia going on. Anyway she tried it and as I thought it is way too big on the waist. DD admits that it’s way too big and she wouldn’t be able to wear it how it is. So this has become her motivation. To fit in the damn skirt! I’ll take that! 🥴😂

Have spoken to school about her not being in this week and she has been able to join some of her lessons via Teams today from her bed. This has actually been really positive as a distraction for her. Just have to wait and see what the plan is after the 5 days. We are taking each meal and each day as it comes. 🤞🙏

It sounds like they've got you doing all the right things, @Rollergirl11. Fantastic that she's complying, whatever the motivation. Just a word of caution, though, DD1 was also super compliant in hospital because she wanted to get out. It was much harder once she was out.

@Rollergirl11 so pleased to hear that it's going well. The hospital sounds like it's doing everything right. Our issue in a way is that DD has never been bad enough for hospital so we've sort of dragged ourselves along in a compromised way. Maybe hospital would have been the shock she needs as she's still mostly in denial.

@Lottsbiffandsmudge I think you were very brave and utterly correct to poke the beast the way you did. I wish we had as that sort of weight gain feels like a distant mirage. We are going to be very firm about banning her from the kitchen (it's not like we live anywhere palatial so this isn't easy).

@sm701 really hope lunch went well. They do apparently think about food the whole time (out of hunger/habit) and this in turn makes them feel even worse as it makes them think they're greedy.

Roller have they done bloods and an ECG? If so you might want to check if the ED psychiatrist can check them out as they will spot abnormalities that the general Drs might miss. I'm so glad you posted and took our advice, hopefully your dd will be on her way to recovery now.

It does sound like she's got some motivation there roller which is really great news. I will echo Lougle's comment about compliance in hospital versus out of that environment. My DD ping-ponged through in patient re-feeding support in hospital a few times and one of the factors was the difference in relationship. DD felt she had to do what the medical staff were requiring of her, whereas with DH and I it was different. Thats not meant to dampen the good news you've had but more a heads up for possible shift on discharge.

Reading some posts today have taken me right back into memories of when we were in the worst of it. It is now about 3/4 weeks since DD last self harmed but reading upthread I was transported back to one particularly bad night when the noise her head made off the wall was horrific - I remembered gasping out loud and fully expecting to see buckets of blood.

All I can say is when you're in the midst of it, a more positive future really looks like the faintest glimpse of the surface of the ocean whilst you're stuck on the ocean floor with hardly any light reaching you. But, it can get better. I suspect recovery for my DD will take many many months and we'll lose our way at times but it is a better place than we were in.

Today was DD's final session with adults - she's off to practice what she's learnt for a bit and we'll see how we get on. Part of DD's challenge is that she is so scared of some emotions (sadness) that she cannot express them or be comfortable with them. She restricted eating to the point of extreme ill health rather than be sad. In amidst all of that she lost her ability to self regulate and has fallen into heavy reliance on us as parents. So, I'm terrified that adults has now ceased but actually it is important for DD to not switch reliance on us to reliance on a MH professional... so fingers crossed.

Yes Lougle I can see that is absolutely the driving force for her compliance at the moment and that her motivation may well change once we are home. It’s easy to be compliant when she feels like she doesn’t have a choice.

@Rollergirl11 thank you for sharing your update. My DD feels like she failed AN by not getting admitted. It makes me so sad . Hopefully the stint there will be what you need to turbo charge recovery at home. Fingers crossed for you.
I'm going to take the advice here and get some maxijul to boost yogurt etc. We need to get her out of this fast ahead of the summer!! Will also look up ensure.....

@Girliefriendlikespuppies yes they have been doing bloods and ECG every day. Her heart rate is still very low and that is currently their main concern. Also big disparity between lying and standing heart rate. Her bloods are okay apart from very slight abnormality with her kidneys. It has improved slightly each day but they are keeping an eye in it. They think it could be due to the acne medication she is on so we have agreed to stop it for the time being to see if it has an impact on her bloods.

@sm701 yup the psychology of it is frightening isn’t it? That they actually feel guilt and shame for not feeling like they are bad enough or things are too easy, that it somehow invalidates their ED.

I’ve actually just had a phone call ref the referral to the ED team. They are going to come to the ward on Thursday am. DD is very relieved as she was worried she wasn’t going to get to speak to anyone about the psychological aspect of it before we came home from hospital.

@sm701 Ensure is supplement the therapist prescribed - they're 200ml and 300 calories, and come in vanilla, banana etc flavour. That means they're roughly equivalent to what she should be having for her bedtime snack (200ml milk, 2 x toast and spread) but which we never came close to managing. She treats it like medicine and so far it's really eased the evenings as we don't get into negotiations around desserts v bedtime snack.

I've managed to arrange for DD1 to go to school first thing tomorrow until 10:45, so tutor plus 2 lessons. I have an appointment at 10, so my Dad has agreed to pick her up, and school have agreed to phone him if she is struggling and needs to go home earlier.

On the food front, we're not bad today. I had workmen running a new shower mains cable all day, so I told her I didn't have time to do fancy breakfast. She accepted honey cheerios without too much fuss. A Hershey's bar and 4 chocolate brownie bites for morning snack, then pancakes with butter and golden syrup for lunch. So 2400 calories so far. No afternoon snack as too full from lunch. We'll see if she's awake enough for dinner...

Hi everyone, just trying to catch up with all the posts!

@Lougle do pancakes take long to make? I think that’s something DS would enjoy eating but I’m often pressed for time. Nutella pancakes sound delicious.

@Rollergirl11 sorry you’ve found yourself here but glad your DD is getting the help she needs.

I made a bit of an error. DS asked for cucumber to eat and said he wanted a really big chunk - I gave it to him thinking it was great he was asking for food. Then after that he wouldn’t eat anything else as he was ‘too full’ from his cucumber. I don’t think cucumber has hardly any calories. Next time I shall say yes but only if he also eats something higher calorie. Maybe I could offer a nut butter or hummus to dip the cucumber in?

@Rollergirl11 Sounds like the hospital is helping your DD. I agree with the others you will find resistance at home at some point, so expect it, or even hiding food etc. We very much needed psych contact while in hospital but as DD was on a general pediatric ward their focus was on the heart rate / BP and other general health issues.

Just don't get too excited that as they kept telling us the camhs psychiatrist was coming to see DD but it didn't happen in the 7 days we were in, a specialist camhs nurse came instead and pediatrician but on the positive we saw the Camhs psychiatrist the next week and every two weeks since, plus the specialist nurse every week. Plus the specialist nurse we have been allocated is amazing so hopefully, you'll be happy with yours too.

Looking for recommendations on how for DD to tell her school friends about her AN, in the lead up for a phased return to school. Any good hints?

Actually I just have a question for Mums that have stayed in hospital with their DC’s whilst they are doing their refeeding plan. Did you eat all your meals alongside your DC? I am being offered breakfast, lunch and dinner as well as DD and I am feeling an expectation to accept all the meals. So a hot meal at 12.30 and then another hot main meal at 5pm. I’ve been eating the hot lunch with DD but I don’t want to eat another one at 5pm. It’s just too early for me as I’m not used to eating until 7.30 or so. So I’ve been declining the evening meal and eating something bought from the shop/cafe a bit later. DD doesn’t mind but I don’t know if the hospital staff might think of this as detrimental. Or am I completely overthinking this?!

@Rollergirl11 - when our DD was in hospital DH and I would do 24hr shifts changing over about 2pm. As I recall we weren't offered breakfast so whoever was on the morning shift would go to the hospital cafe after DD's breakfast/weigh in and get a croissant etc and pick up a coffee for DD's mid morning snack. Lunch we were sometimes offered and usually dinner. We tended to bring lunch in with us if we were on the post 2pm shift which could then be eaten at dinner if we didn't fancy anything..

Not sure the staff particularly noticed if we were eating or not tbh! It was more about what DD felt comfortable with - like yours, ours didn't mind...

Overthinking I think! I wasn't given food but I don't think it reflects on you at all to decline. Have they got a microwave? Then you could accept and reheat when you're ready.

I wouldn't think it matters too much in hospital however once you get home I think its helpful to eat with them including snacks etc. We haven't got any scales in the house anymore but I'm assuming I've gained at least half a stone when refeeding dd (not that I care!)

I think perhaps I am just being a bit paranoid then. They are being extremely strict with regards to Covid and are heavily restricting comings and goings to the ward. We are not able to split staying with DD between DH and I because as soon as I leave I am not allowed back and then the other parent has to take over for the rest of DD’s admission. DH cannot do that with his work. They don’t even want me leaving the ward to go and grab a decent coffee from the canteen but I’ve been going anyway. I don’t think they can begrudge me a 15 min break when I have been here all day every day and I haven’t left the hospital!

I just want to say thanks once again to everyone on this thread. I don’t like to think about how dangerous it would have been if we hadn’t sought immediate help and I definitely think this was the right move coming to A&E and not wasting more time.

I have no idea what the timescale is for DD’s recovery, whether it be weeks or months or even a year. DD has one of her best friends birthday next week that combines with the next easing of restrictions. I think a sleepover is on the cards for the 5 of their friendship group. I think the realisation is setting in that she’s not going to be in a position to go to this and as a result she’s now starting to wonder what else might well be impacted by this. I would like to think that she’ll be a whole lot better by the summer holidays but I guess we just don’t know!!

Blimey that's pretty hard roller not being able to leave the ward or share care with your dh. When my dd was 10yo she ended up in hospital with flu which caused her throat to close over (this girl likes to keep me on my toes 😱) and I can remember that feeling of being trapped on the ward 😕

Have they given you any indication of when discharge might happen?

I read somewhere that the average time to recover from anorexia is 2 years ☹️ given we're a year in now (from when dd started restricting) I can see this is going to be about right for us. Hopefully if your dd is motivated and wants to get well (my dd denied there being an issue and did not want to get well if that resulted in weight gain) then it will just be a case of getting a lot of food into her so won't take that long.

@Rollergirl11 It's really hard at this stage of the process to know what will happen and I wouldn't be saying she will definitely be doing anything, it all depends on the plan and how easy or difficult it is for her to follow it. Also what WFH she is and what they want her to get to, be that 100% or lower or higher depending on her weights through childhood.

If DH can get her baby book, the weights recorded in there will be helpful for the pediatrician / camhs team to see to help predict her height.
My DD was WFH 73% when in hospital, she's been home 4 weeks and is WFH 78% now, and that has been with her being pretty compliant on the eating plan (there have been many tears and yelling but she has eventually eaten). She is targeting 90% WFH and I don't expect she will return to school fully until September ..... Hopefully that helps a bit?

In the hospital I ate lunch and dinner with DD, I sorted my breakfast myself, she found it easier if I ate with her. I know 5 pm is early right? Since coming home I have eaten every meal and snack with her as she has needed the support. I eat different things though except for the main meals.

@SoTiredNeedHoliday thanks for that. I realise that each persons journey/recovery is individual but I literally had no idea what to expect. I think DD is thinking she might be off school just for a few weeks. We don’t have all the information with regards her WFH and what her targets will be. I don’t even know who is responsible for doing that, is it the hospital or the Eating Disorder team? So many questions I have that I hope will start to become clearer as we move through this process.

DD has end of year (10)/mock type exams after half term and she will be devastated if she cannot sit those. She is very high-achieving and school is very important to her. But it’s looking more and more likely that she won’t be so have to think about how we are going to manage her expectations going forward.

Part of me swings from feeling so desperately sorry for her to angry that she has done this to herself. I just cannot comprehend what on earth she thought she was doing and how she thought this was going to end up. She’s sat here right now getting stressed and snapping at me because she can’t connect to her school Teams call and how she’s going to miss out on work and I am biting my tongue so that I don’t snap back that she is here because SHE didn’t bloody eat and it’s not mine or her teachers fault! Of course I’d never say it and I get that she’s taking out all her fear on me. But it’s just so hard to understand how we have got here and her be completely oblivious to the ramifications of her actions.

It is really hard roller - you are placed in the position of being jailer, cheerleader, nurse, doctor, verbal/physical punchbag.... do make sure if you can you take time out for yourself. And I found a good cry was necessary every now and then.

DD is in year 13 but in December we made the decision to withdraw her from school. It was a really tough decision but in the end we felt that having 'school' hanging over her was an additional stress - she wasn't physically or mentally able to manage it. Whilst it has had complications (she's not off to Uni like her cohorts) ultimately the decision we made means she is getting the time she needs to recover - school will still be there in September.
That may not be the right decision for you and your DD but don't stress too much if it is a choice you decide to make.