Support thread 9 (!) for parents of young people with an eating disorder

[Girliefriendlikespuppies]

Thought I better start a new thread, can't believe we're on to thread 9 😳

Hope all the regulars find it!

Also, I suggest that as soon as you have the diagnosis, you set in motion an application for DLA. It will take ages to process but will be backdated to your application. It isn't means tested. You are probably still reeling, but there are considerable financial costs to anorexia - time off work for you and DH, travel costs to appointments, meal plans etc.

Grey see if your Gp will sign you off work, I got signed off for around 6 weeks initially to get the FBT started and then for another 6 weeks a couple of months down the line when things went backwards for a bit.

Imo it is impossible to do FBT and work as you need to be supervising your dc pretty much 24/7. Each meal and snack can take a long time and when you're not sitting with your child encouraging them to eat you'll be preparing or planning the next meal.

Every single mouthful needs to count, I'm similar to you in that I like a plan and once I worked out the quick way out of this hell hole was to get the weight back on dd, I established a meal plan based on how much double cream I could stuff into everything!!

I added double cream to porridge, soup, scrambled eggs, every single sauce imaginable and at one point we were going through a tub a day.

The good news is this worked in as much as dd regained the weight, her mood improved, the desire to exercise reduced etc.

Recovery from an ED is rarely a straight line though and there are frequent bumps in the road which is normal.

My advice as someone three years down the road is.

Go through your dds phone, check what she's been looking at, check her apps and check her search history. Ideally take her phone off her for a few weeks while you get FBT established. Otherwise put restrictions on the phone so she can't check calorie contents, weight loss tips etc.

Be kind but firm, do not negotiate and do not back down. 'This is what you have to eat, once you've eaten all of that we can watch s film/play a game/ do crafts etc' Repeat this as many times as needed for as long as needed.

Get rid of any scales in the house, insist your dd is blind weighed, ime no good comes of them knowing their weight.

Tackle fear foods early on, if they're going to get upset at least make it count imo.

Do not feel guilty, it's wasted energy and this is not anyone's fault.

Look after yourself, hold onto one or two things you enjoy and find the time to keep doing this.

My child has been having blood tests fortnightly. We were hoping to move to monthly but last time they said creatine levels were high but this time they are better but now has high urea. My dd is fed up she’s been having 3 meals and snacks and we don’t understand why these issues weren’t there in the beginning when she was hardly eating but are coming up now. She is feeling why bother if she still having to have blood tests as she finds them painful. Anyone else had this? Would just drinking a lot more water help? She has water with her meals but I know she could drink more so will start with that. Had email from therapist to say we will need to discuss her exercise or her eating more but she’s not overdoing it just two hours a week running and 2k park run (9mins) which is less than before her illness as shes dropped another sport. I really don’t want her feeling she’s doing everything she can and still more is required. She is starting a new school soon and it’s all going to be too much. I think I will suggest leaving as is and drinking more water until she’s settled at school before adding more food. I don’t want to push her when there is too much change for her as she can’t cope with new things. She is 104 wfh now but they feel she needs to sit higher according to her charts but has been putting on around .3 kg /fortnight. I just wonder if this is urea thing is a common thing with this Illness?

Thank you all for pushing me to go to a&e. I was in complete denial. He's been admitted with an eating disorder. His community referral appointment is the 28th September and the gp assured me he would be fine until then. A&e are really pleased I brought him in.
Anyone know how long he might be here?

@Proseccoismyfriend really glad you went. I would not have gone either if it wasn't for this incredible supportive bunch here.

DD was 3 weeks. Some stay just in for initial re-feeding which is weeks (but not days). some are moved onto eating disorder wards and stays there are typically much longer. Months usually. It really depends

Is he on a general ward?

How are your feeling?

Waiting to be moved to a ward. Feeling a bit numb if I'm honest, can't believe we are here and this happened so quickly.

Proseccoismyfriend

So sorry your ds has got so ill but he's in the best place he can be to get well. Sending you and him love ❤️

@Proseccoismyfriend It is a shock but you're in the right place. We were admitted to paeds ward direct from first booking in appointment at CAMHS and I share this not to freak you out but to forewarn you. We found the hospital focused on fixing the here and now -so a two week re-feeding plan. Then we were discharged but still weren't properly in the CAMHS system so surprise surprise DD lost weight gained and we were readmitted. On the second admission we had to be very pointy elbowed about having CAMHS come in to the ward to see us as we knew we'd be ping ponging in and out.

Also, don't assume that your DC can't hide food or exercise even in hospital. DD had to have her door open and was wheeled to the toilet - 2 metres away - she still managed to do star jumps and hid food up her sleeve...

Do ask away about re-feeding in hospital there are lots of us who've been through it....

@Proseccoismyfriend sorry to hear about your ds, that must have been a shock. Sounds like he is in the right place. It's so shocking how this whole thing can take hold of them so rapidly. Sending you a massive hug xxxx

That's so true, I feel as if our world has tumbled upside down in the space of two weeks. He ate well at dinner, the nurses said he needs to eat his way out of here, he's made a good start. His sister and DH came to visit which was nice, just settling down to try and get some rest ❤️

@Proseccoismyfriend another one here who went to the first appointment and dd was admitted on the spot. It was a huge shock but looking back was the best thing that could have happened.
She was in a fortnight and was determined to 'eat her way out'. Your ds is only young isn't he? Are you also staying?

Yes he's only 10, he doesn't fully understand what an eating disorder is or means. He wants to eat but hasn't the appetite for it so for the past two weeks has been picking and now we're in this mess. The gp really made me feel waiting another 4 weeks for the referral was ok so now I feel like I've failed him as I could of come much sooner. Yes staying with him, he's so frightened and the nurse explained how he can and will die if he doesn't eat. Hospital feel we might of been able to nip it in the bud before it's taken a real hold, but for now I'm going to take each day and meal as they come.

Don't feel like you've failed him - any of you do that's normal as I think most of us would've said the same. Dd had a dietician (not Ed trained) who told me not to worry and during this time she declined rapidly. I felt so guilty revise I thought I should have acted quicker. But we rely on professionals to advise.

@Proseccoismyfriend just keep going back to he's exactly where he needs to be now. It's so distressing when the penny drops and hindsight pulls the whole picture together. Not very helpful of hospital to suggest the would've could've s of nipping it in the bud.My DD is 16 and I do hear a lot that younger sufferers can be more easily directed. Sending you strength and hugs.

So I am back from a fantastic trip with my younger DD who I really felt needed a break from the illness. Was a treat to eat out (this is still way off the agenda w DD16) and do things without having to think of the plan or amount of exertion. On the last night DD said I am so happy I could cry. Once we got back she even gave her sister a kiss and a friendship bracelet(their relationship has been so fraught for months)
DD16 has been okay w DH and enjoyed their time but I could tell something was going on so managed to get it out of her yesterday. Noticed her eyeing me up a lot and her mood low. It's something she's mentioned before which is that she compares herself to me. I really don't know how to address this. I have found myself wearing more shapeless clothes as I feel self conscious and irrationally thinking it wont trigger her. We have completely different natural builds and I have always been slight (following my parents' builds) and hers is different. I do not understand why she is comparing herself to a middle aged woman. Of course her perception of her own body is off anyway because of the ED.I just feel very sad for her and that I'm making her feel sad.Hope this makes sense.I worry when she goes back to school she will be doing the same with the other teens. How have others managed these moments?

Brain dumping this morning!...I want to let of steam as DD told me that her best friend's mum was not pleased w BFs GSCES results but told her rather that than my DDs results with AN. Feel so upset that DD being touted as a cautionary tale. Of course we just want her to be well over everything else but it isn't that simple. I feel so hurt and angry.

@Proseccoismyfriend I hope you and your DS had an OK night. Our experience waa similar in that because we had a CAMHS ED appt booked in the GP (and 111) didn't want to know. We knew how bad things were and kept pushing and like you, my DD was admitted to a medical ward due to very low pulse, blood pressure and temperature. We stayed there for three nights until she was stable enough to move to a specialist psychiatric ward. The timescales really seem to vary depending on whether you are there just for initial refeeding (seems to be in the region of 3 wweks often) or admitted to an ED/psych ward. As others have suggested, the timescales on these wards is long, we're 2 months in now and although she is making progress it's very slow. I really believe that if we had listened to the GP and CAMHS and waited for the original appt, which would have been 4 weeks after she was admitted, my DD would not be here today.
I hope your DS is feeling a little better this morning and that his obs are OK. And that you both managed some sleep, He's in the right place and you've done so well to trust your instinct and keep pushing to get him there.

Whippet I think you need to speak to a Dr re the blood results, my concern would be your dds kidneys and whether there's been any damage to them.

Prosecco well done on listening to us and taking your Ds to the hospital, I'm glad they've admitted him and he is in the right place. Do not waste energy feeling guilty, this is not your fault.

Reine I think it's normal that they compare themselves (less favourably) to other people. My dds a different shape to me as well, I was always tall, slim with no boobs (still got no boobs but am not slim these days!!) whereas she's much curvier. I'm not sure what the answer is other than role modelling a healthy attitude to food, eating without restriction and also being generally positive about your body.

ReineDeSaba

Dd compares herself and says she's ugly. She isn't. It's hard to rationalise with her. I remember having the same insecurities as a teen but must be so much harder nowadays with insta etc at their fingertips. The vast majority of women in music and media etc are still very slim and beautiful which is frustrating.

Re the GCSE results, that must be so upsetting to hear. Some people just have no idea what others go through.
Regardless of her results, your dd sat exams while going through serious illness and that's a huge achievement. I know it's hard but try not to let ignorant comments like that get to you x

Thank you @BagpussSaggyOldClothCat for sharing around your DD. It's hearbreaking my child too won't believe she is not ugly and that the images she compares herself to are just not real in so many ways. Sadly even without EDs this seems like par for the course for most women which I wonder could be why AN is missed.....an expectation from society and other women that all females will and do feel bad about food (I grew up in a male only household and this was one of a few things that was helpful...food was fuel for them though i think now SM has manipulated males' feelings around their appearances too)

I think what hurt me about DDs friend's mum is it is a reminder of the things people won't say to my face...I don't want DD to experience other people's ignorance around her AN but I know that in reality I can't stop it.Ouch!

Right now I'm feeling v scared about her part time return to school (meal planning around this). I am nervous of the stress of her trying to work towards A levels while still trying to restore weight but perhaps even more nervous of how I can support this.

ReineDeSaba

I think we just have to keep telling them, like a broken record, that the social media world revolves around making people feel insecure so they buy stuff. Those people (influencers - hate that term!) with perfect images are just normal people like us who have tons of make up then are filtered and airbrushed to 'perfection'.

The tide is turning slightly. There have been a lot of tiktoks of people removing filters and make up. If I come across those I send them to dd. Dove also have some good campaigns.

Me again! He's ate well today 3 meals and 2 snacks, he looks better. Regularly having his obs checked they're concerned bp & heart rate are low but slowly on the up.
A psychiatrist spent a lot of time alone with ds today and spoke to us as a family, she doesn't think it's anorexia but some form of eating disorder as he wants to eat and shows an interest in food, she doesn't think he has any negative body images and wants to regain the weight. We lost our beloved cat three weeks ago and she wonders if it's the trauma/shock from that. Has anyone heard this before or been in this situation? Is she full of crap or am I being rude?! He really did love the cat she was perfect in every way and used to play with him when he was a toddler, she was always by his side and waiting for him coming home.

My ds (late teens) also lost a great deal of weight through severe ocd & generalised anxiety.

Like your son, he's not worried about body image and loves his food & wants to eat more, but just didn't have the appetite.

Now he eats a good diet but nowhere near enough calories to put on the necessary weight (made harder as he still over exercises to deal with his anxiety). So he's only maintaining his low body weight.

He's just been accepted by an ED clinic so I'm
hoping that they will help him to up his diet.

Trouble is, he feels well, is doing well academically and can exercise quite happily.

In answer to your question, yes, I think his anxiety/upset may have led to his loss of appetite & weight loss.

Thank you, it's such a minefield all of this. I feel like I'm taking an exam that I've done no studying in.
Sending love and luck for you at the ED clinic

Prosecco** I think there's classic anorexia nervosa which is the standard anorexia and develops as a child wants to lose weight so starts to restrict food. This then triggers all the other classic anorexic behaviours.

However it is possible to develop anorexia with weight loss of any cause. Anorexia is primarily a biological brain based illness that is caused by prolonged state of starvation.

There's been various (unethical) starvation experiments done which prove this.

The good news is with the latter all that needs to happen is weight gain and your Ds should recover. Anorexia nervosa is trickier as you're also dealing with poor self esteem/extreme self hatred etc 🙁