Parents of children with very low weight/anorexia, support

[PeaceOfWildThings]

Am Inthe only one?

I've looked on b:eat and there are no support groups for carers in my area. Am I the only one who could do with a thread where we can support one another here on Mumsnet?

CalmIt am thinking of you both. Keep.us updated. I'm glad in a way that she has got help, of course, but via A&E suggests something must have come up for that to have happened. Thank you for updating us when you are in the thick of this. It all helps us on here.

Stuntnun Welcome aboard! It's good that you are aware...keep going back. (In know whatbyou mean about supplements..we have stacks of those.)

So sorry Calmit. Hospital feels like such an awful milestone but as Poppy says, it could turn out to be a turning point. I think we all hope that at every new step and there are plenty of young women out there who've come through it all in the end. I've spent a lot of time reading this weekend and I'm finally beginning to believe a) that it's not my fault b) that it's not my daughter's fault and c) that she will get better. Thinking of you lots. x

Hi Stuntnun. As someone who's been blaming myself for not getting help soon enough I can promise you I think you're doing the right thing dealing with it early. I spent years hoping it would go away and worrying that I'd make it worse if I paid attention to it and I regret it now. I'm very new here but have already found it hugely supportive. Hope you do too.

Hi everyone, dd is out of hospital. Sunday evening she glazed over, became unresponsive and fell when standing. She was admitted at 12.3am. Bloods showed low phosporus and potasium, as well as low heart rate and low pulse.

She had endless obs and visits from various staff and was discharged at 2.3o this afternoon. Nurse in charge said she was stable and didnt want to keep her in as she knows dd can eat and she would rather dd once again try at home before being taken in for initial 3 week feed up, its a tough regime by all accounts.

Dd much better today, although emotions all over the place.

Hope today has been good for everyone and welcome Stuntnun.

Hello *

Calmit sounds scary but the right thing, hopefully it might be the scare your dd needs. I don't know. While eating thing is so complicated.

Clare I can't believe I've only just realised my DS is terribly thin, just seems to have crept up on us. Things are feeling more positive but I wonder too whether I should have done something sooner.

CalmIt thank you for the update. I do hope you both sleep well tonight, and as dry said, it might be a wake up call for her to decide to eat. I can only imagine what you've been through though, and what it must be like to be going home now.

I've started to try to add up calories and I don't think I'm giving miniWildThing 2500 kcals most days. I'm going to have to reassess everything. Weigh in for her tomorrow...

Hi everyone, hope you are all ok

We went to the dietitian today and oh my word!! Basically dd should be eating the sort of thing she would be having if she were admitted. Here's the example she gave -

3 x toast with butter
Chocolate muffin
Sandwich
Scone, jam, clotted cream
Lasagne, chips, peas
Dessert
Flapjack

2500/3000 calories approx.

Just brain dumping now, does anyone think a separate thread with high calorie foods would be a good idea?

Yes that would be great.

I am keeping up with the thread...things are ok here. I just feel like I'm holding my breath, if that makes sense, and am tense a lot of the time. Seem to spend all my time taking DDs to appointments and doing meals and then waiting in coffee shops in between!

Peace, glad things ok today, one day at a time eh? Feel like you, endless appointments....today, hour to hospital, appts running hour and half late, hour back home, tiring, draining.

Going to start a calorie thread.

Looking forward to the high calorie thread Calmit Hope you've had a good day. We've had a quiet day but we have our first appointment at the ED clinic tomorrow and I feel sick every time I think about it. Not sure whether I want a diagnosis or not. Large part of me still wants them to say 'Oh it's not a major problem - she'll get over it' even though I've been thinking that for four years and it clearly isn't something that's going to go away on it's own. Amazed at the amount of denial I can still muster in the face of all the evidence.

Looking forward to the high calorie thread Calmit Hope you've had a good day. We've had a quiet day but we have our first appointment at the ED clinic tomorrow and I feel sick every time I think about it. Not sure whether I want a diagnosis or not. Large part of me still wants them to say 'Oh it's not a major problem - she'll get over it' even though I've been thinking that for four years and it clearly isn't something that's going to go away on it's own. Amazed at the amount of denial I can still muster in the face of all the evidence.

Clare, started that thread. Let us know how appoinment goes, good luck in that you will get very good advice.

Try to sleep, any doubts, write them down to talk about tomorrow. X

Rant warning. Had assessment at the Eating Disorder clinic this morning. Having elicited that DD is seriously under weight, thinks about food constantly, wants to lose more weight and doesn't think she'd mind if she starved to death they decided that she doesn't have an eating disorder but that we need family therapy. Gist of it is my son and husband need to pay her more attention and I need to talk less. Oh, and we have to take control of her eating, keep her off the internet, search her room for illicit substances and make her put on weight but we have to do all that bit without a diagnosis of any eating disorder and without the support of the ED team. WTF. On the one hand, it would be nice to think she doesn't have an eating disorder, but on the other hand, how am I supposed to convince a 17 year old that I need to basically follow the Maudsley plan when she hasn't got an eating disorder? I haven't spoke to her yet but I can hear the words 'see - I told you there was nothing wrong with me' already.

Rant warning. Had assessment at the Eating Disorder clinic this morning. Having elicited that DD is seriously under weight, thinks about food constantly, wants to lose more weight and doesn't think she'd mind if she starved to death they decided that she doesn't have an eating disorder but that we need family therapy. Gist of it is my son and husband need to pay her more attention and I need to talk less. Oh, and we have to take control of her eating, keep her off the internet, search her room for illicit substances and make her put on weight but we have to do all that bit without a diagnosis of any eating disorder and without the support of the ED team. WTF. On the one hand, it would be nice to think she doesn't have an eating disorder, but on the other hand, how am I supposed to convince a 17 year old that I need to basically follow the Maudsley plan when she hasn't got an eating disorder? I haven't spoke to her yet but I can hear the words 'see - I told you there was nothing wrong with me' already.

Gp first thing tomorrow?

have you spoken to dd yet?

That's the point dancingqueen no one will be monitoring her - we're on our own. They feel her not eating is more related to her previous self harming than to a 'real' eating disorder. But she's still underweight and still needs to put on weight. I suppose the family therapy will help but I don't know when that will start. Haven't spoken to DD yet Calmit Need to talk it over with partner tonight first. She has eaten well today so that's something.

Clare I'm shocked at this. How can they have said all of this and that she doesn't have an Ed? Perhaps the Ed is a reaction to other stuff but she is still seriously under weight and this surely means she has an ED?

I just filled out the questionnaire to take to our first CAHMS assessment on Monday ......how the heck am I supposed to remember when DD first sat up? Said 2 words? What does this have to do with her not eating 14 years later?

Clare, very glad that your DD ate well yesterday.

Family therapy is very rare to come by through the NHS, especially so early on (we're being referred about 18 months/2 years on from first seeing them about the ED). Like any therapy, you have to engage with it to make it work and the more participants willing to do that, willing to make some changes, the more a family gets out of it.

Different parts of the country treat eating disorders so very differently, it's one of the reasons I wanted to start this thread and put 'or with low weight' in the title. Obviously we can't diagnose or treat here though! We can offer some support, and gee you on to keep doing the best you can. I don't know what to say about them telling you your DD doesn't have an ED. I'd be feeling so crushed and alone with it if they had said that to us. DD1 often says she didn't need them to recover, she could have done it without them..but completely misses the point that she hasn't recovered!

Dry I'm not sure if I filled one of those forms in for CAMHS ...have vague memories of writing 'at expected age for this milestone' and 'within normal range' all the way down, so maybe that was it. I think it was for some national study or other.

How are things with your DD now?

We didn''t have forms like that, we had loads of questions with the sometime, often, never answers.

How are you Clare?

Despite lots of effort on her part, dd only managed 3oz gain...the struggle continues.