Support thread 12 for parents of young people with an eating disorder

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Suddenly noticed the old thread is almost full and thought I'd make a new one.

@Mumofellie

we always have an AM appointment at CAMHS, sometimes before morning snack. At the tier day unit it was 8:30 twice a week before breakfast.

@Dinnerisburnt thanks for your reply our apps are all over the place that’s y I wanted to go what other ppls apps are like. I personally think it should be more a less same time each week

@Mummyoflittledragon

we started at 72% went down to 65% back upto 77% now. Been on bed rest and no school since day 1. Camhs have agreed 82.5% they will do a fit to fly certificate for holiday and school is 85% and that is half days. My DD was an international athlete which she has had to stop.

Omg @Dinnerisburnt wow! I didn’t realise this…

Edit to add. Your poor dd.

@Mummyoflittledragon we have had lots of positives, her sport made her unhappy, her coach was vile to her. Her bloods are now back to normal and her liver has recovered. She has finally agreed to take the initial ASD test this week, and then the Ed unit will fast track the full assessment if she comes out high. She is so much happier in herself, she laughs and sings now and doesn’t fight me over food. Yes she has missed out on so much, but she is alive and there was a point where her body was shutting down, it’s been a horrific experience.

The holiday bit was a bitter sting…..I can get insurance for her but her psychiatrist is the one that holds the fit to fly document…..and we can’t go without that!

@Mumofellie our appointments change too, they are haphazard. I’m told it depends on the availability of rooms in the building, they can’t just be booked for the same time each week. It’s a logistical nightmare.

@WaitingForMojo I know they are busy and have to for ppl in but need to be more consistent I think.

@Dinnerisburnt just reading through your posts so glad your daughter isn’t fighting you’re good anymore I can’t wait to get to that stage. My DD started at low 60% and she’s still not far from that. My DD stopped college and is starting again in September which our CAMHS know about but they mentioned anything about her having to be at a certain % for her to start in sept. Reading your post I feel we are a long long way away from anything at the minute. I cancelled out holiday this year and changed it to next year as I knew my DD wouldn’t be well enough by July but we are still hoping to go away in UK in August

@Mumofellie you will get there 🩷 one day at a time. I have found a new level of patience has helped me to help DD start to fight this vile illness.

@Dinnerisburnt
That sounds awful. Dd’s riding instructor was vile to her and it was easy for her to stop that as she wasn’t competing, you need your own horse for that. I’m glad to hear your dd is happier.

My dd wants to continue her dancing and is fed up with riding atm as she’s too high level even for the best riding schools without her own horse… not so in France, where they have very large school horses... but she is too poorly to ride anyway right now. We actually have her booked on a horse riding thing in France in august. I only booked her for daytime rather than sleeping over due to her eating already being bad at the time. I think it’s rather unlikely that she will be well enough to go. It’s only a few hundred pounds and we can cancel the accommodation up until the last minute.

Dd also has prom in a month and 6th form induction week the same week. She also has NCS mid July, which is extremely unlikely as it’s staying over. Idk what to do right now. I suppose I’m waiting for some clarity and direction from CAHMS and hopefully from the private ED consultant.

I told dd she would have the best summer break ever, free of exams, and it seems things aren’t going to pan out that way. But yes, the only important thing is for her to stay alive.

To add: dh is in real denial of how close dd is to folding. He doesn’t see me telling her she needs to eat some dairy otherwise she won’t be able to do x or y and the negotiations occurring. He just sees her being able to do it (not even the just about able) and in his head it’s not that bad.

@Dinnerisburnt thanks I really do hope so. DD doesn’t know how poorly she is she thinks she would be able to run a marathon. I think he weight will stay the sam again this week as nothing has changed eating wise she’s not letting me up things anywhere. Hoping she starts to realise when her weight stays the same again that she needs to do something about it. She is very stubborn and if I was to up something somewhere when she’s not ready for it she just won’t eat it. Since she came out of hospital on 12april after been in for just over a week she has been mimicking bed rest at home, we did get her a wheelchair so we can go out and about as I have two younger than her and can’t be in all time especially when they are off school but not I’m wondering if that was a bad idea. I thought it would push her but now wondering if because she is able to go out it’s taken that away

Mummyoflittledragon 81%wfh is really low and the further weight loss is worrying. My dd was over 100% wfh and dropped to 90.% when she was heavily restricting. At this weight for height she was seriously ill and narrowly missed admission.

Your dds seizures do complicate matters though, is she under a consultant you could talk to? She urgently needs bloods, an ecg and lying and standing bloop pressure check. My dds heart went under 40 beats a min at 90% wfh and I dread to think what would have happened if she went lower than that.

I'd also tell her she can't be a vegetarian any more which I appreciate is not easy. I think for some people being veggie is fine but some others just can't get what they need from a veggie diet (myself included.)

Anecdotally everyone I know who is veggie suffers with anxiety....

@Mumofellie , my DD’s psychologist advised against a wheelchair. She said it fuels the ED and doesn’t incentivise them to eat to be able to enjoy the things they want to do. It’s so difficult when you have younger children to also look after so completely understand it gives you the ability to be able to all go out. My DD refused the idea of a wheelchair, she said it was embarrassing and she would rather eat. We are not on 2500 calories a day which we are supposed to be, probably touching 2000 and with limited movement and very little exercise we are able to get weight increases most weeks now.

@Mumofellie I agree with pp, using a wheelchair to take your daughter out might be enabling the ED. A lot of what I have learned in support groups warns against enabling AN I.e. don’t drive for miles to find a special brand of food etc. it’s really hard but I wouldn’t rush to take her out on walks with your younger children as it might strengthen the ED. I can totally understand the logic of getting her out of the house and hopefully seeing what she is missing but if the ED is strong enough then she is just as likely to think that everything is fine and you are the one catastrophising. I hope this is helpful but I understand that you are in an impossible situation

@Shanghai101 @Dinnerisburnt i asked CAMHS about it with her being on bed rest and they said that’s it would be a great idea. Strange how diff places suggest diff things isn’t it

I am very worried. Dh is in denial about the severity of the problem. He doesn’t think it’s that bad and shouted at me to stop listening to MN. Dd won’t eat meat. I wish she would. She is so incredibly stubborn. They both are. We took dd to a cardiologist at Easter but no dd isn’t really under him. We paid privately. As for bloods, she just won’t. The mere mention of needles will give her a seizure. The ecg was fine at Easter. But her weight was 56.5 so 7kg higher.

@Mummyoflittledragon

you might find that your DD’s sport will give her a better chance of being a low weight and still being able to function.

the ED clinic/CAMHS should take take control of your DD when you see them, is it tomorrow? Is your DH going with you?

If she has to have bloods done then they will insist and if they are anything like the one we were at gave her the choice of doing this at home or as an inpatient. Same as all the other tests, our clinic don’t take any nonsense from the patients, they see it all the time.

My DD turned vegetarian a few months in on ana, she does now eat chicken, again the ED unit sorted that out, she wouldn’t listen to anything I suggested.

my friends daughter was vegan and she has turned it around without eating meat. There is no size fits all with this.

@Mumofellie

It really depends on who you see and where you are in the country. I am south east…..eating disorders seem rife where I am. It’s like a conveyor belt at the CAMHS ED HQ.

Given your DD’s very low weight, a wheelchair is a personal decision and probably best for your DD. No criticism from me at all, you do what is best for your situation . I really hope things become more positive for you soon 🩷

@Dinnerisburnt thanks, we’re in Yorkshire. When we go to our meeting there’s sometimes one other person in there but most of time just us. I’m not taking her out all time in it as don’t want her to get used to it and not push herself forward.

@Mumofellie you and the team know your situation and what’s best for your DD better than we do and Dinnerisburnt is right, every situation is unique and everyone is trying to do their best under great stress. I would always take the advice of the team and your own judgement over anything else. Absolutely no criticism intended ❤️
I found MN to be a lifeline in our darkest days

@Shanghai101 thanks and don’t worry I didn’t take anything as a criticism. Everyone’s journey is different isn’t it just glad I have this page to speak with others going through same situations and it’s a great place to get advice thanks u all

It is indeed tomorrow. Yes my dh is going too. I am surprised that dd’s sport is giving her a better chance of being a low weight. I thought it would be the other way around tbh because muscle is higher density than fat. Or do you mean she is literally eating her muscle tissue to keep herself alive? Please expound. Thanks.

@Mummyoflittledragon glad DH is going with you. My DH was in denial when I took DD to A&E, he said she didn’t need to go and had a lovely slim shape. He soon changed his mindset after our initial appointments!

Muscle is attacked once the fat has been disintegrated, dancers, gymnasts etc often have very little body fat but they are very strong. DD had her DEXA scan a month ago and the results are that she has strong bones and no osteoporosis. Her sport has given her that advantage it’s one less thing to have to fix, she can rebuild her muscle once weight has been restored in the future 🤨.

You are correct, the muscle is attacked to keep them alive.

I hope tomorrow goes ok for you all.

That is positive news for your dd and I’m glad your dh got on board quickly. My dh isn’t in denial. He just doesn’t get or perhaps doesn’t wish to see how serious it is right now. He knows without intervention she will die. He just doesn’t see that this could happen in the next few months.

Dd still has quite a lot of muscle left on her legs. Her arms otoh look very puny now possibly because she hasn’t ridden in months and her fat stores are seriously dwindling now. Luckily she did have the advantage of having quite a lot of fat stores at the start. In primary she was on the 99th centile for weight and 95th for height because she ate so much and I was so ill that it was difficult to tackle. I fought to get her weight down to the 95th by reducing her carb intake.

Puberty changed this but she was still well above average weight for height 2 years ago and was losing weight slowly, naturally... she followed me on that trajectory albeit I wasn’t overweight in primary, possibly what we would consider ‘normal’ rather skinny as a lot of kids were back then (which I know is also healthy). I am taller than her and I was rather less than 7 stone at her age so I do know part of the weight loss is natural. But not to this degree.

Dd wasn’t made to be as low as she is and I am aware that the seriousness of the illness isn’t just someone’s current weight. It’s how much someone has lost and dd had lost shed loads. She’s so out of control right now.

I had a dream just before I woke up that I put a meal with chicken in front of her, demanded she ate it and she devoured it. I am hopeful that this is a sign as I feel if she just ate meat she would regain her appetite. I am hopeful for CAHMS today. I just hope she doesn’t have a seizure as that could be game over and hospital.

Thank you for the well wishes. 😊

@Mummyoflittledragon I hope all goes well in your app today and your Dd doesnt have a seizure.

my DD was also overweight in primary school and was also one of the tallest girls. Her anorexia started about 2-3 years ago and she is smaller than all her friends now, I’m wondering if she will grow in height eventually when she is through all this

Hope all goes ok today at CAMHS @Mummyoflittledragon