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?

[LakelandLassie]

Hi Peace How are things today?

[PeaceOfWildThings]

Not too bad yesterday. As I was saying to a friend, she and I have had a season ticket to Hell for so long these trials are becoming familiar territory, we could be tour guides!)

I visited DD2, she wants to come home, was very unhappy to start with. We made the best of it, and I did my best to reassure her that she's there because she needs to be.

DD1 has been really upset about it, really feels for what her sister is going through.

[PeaceOfWildThings]

Spent the weekend going over to visit DD2, or gather/buy/clean/fix things she needs there. She's been pretty bored and still wants to come home, but is compliant and is eating/drinking all they give her. She's on a very skimpy diet (everyone admitted with such low weight is, to avoid refeeding syndrome). She may have lost weight since she's been in there, so hope she can get bigger portions soon.

[LakelandLassie]

That's good news that she is eating what she's given! Maybe the desire to come home will give her a little incentive to eat? Having said that; incentives haven't really worked too well for us
How are you feeling? Hope the chest infection is clearing.
Its good that your friend can support you- even if its just someone to have a moan to! I think we need that sometimes

[PeaceOfWildThings]

I've been really tired, and could do witha day in bed to rest and sleep off this infection. It isn't too bad, not better or worse. Managed a nap or two and an early night yesterday. My friend has a lot going on in her own life, more to deal with than me really.

How are things working out for your DD, has she been getti g professional help?

[LakelandLassie]

Physically she is in a much better state but the ED still rages at nearly every mealtime. We have a lovely FBT nurse/therapist but I think she is pushing for my D to make more choices around food which I don't think she is capable of yet.
Nothing would give me greater pleasure to see her being able to make a choice around food but she would just choose nothing
I ask "Do you want X or Y for snack?" she replies "I don't want snack thanks" EVERY FLIPPIN TIME!!
She is back at school but not quite full time yet. I go up to school at morning break and again at lunch to feed her.
I guess I naively thought that once a healthy weight again, it would be easier. But its not.
I try to cling to the (rare) improvements in ED behaviours and keep pushing in them calories!!

[LakelandLassie]

Sorry thats sounds a bit of a 'pity post' and it wasnt meant to be!
My D has overcome sooo much in the last 4 months and I am so proud of her.
But i would like my life back please, time to spend with my other kids, for us all to enjoy our food, not to worry about money...
We will get there, just not as soon as I would like!?

[PeaceOfWildThings]

Yes, just to be able to relax and enjoy a normal family meal would be bliss, wouldn't it?
I am having a day off from the ED unit but have a number of errands to run (putting her music on an MP3 player as she's not allowed her phone, sorting out a gift she wants to make for someone, laundering her floordrobe and packing a case of clean clothes to swap with dirty ones.)

Tomorrow I'm going to have the firstbof many 'supported meals' at the MH unit, where I get training on what to do at mealtimes (lmfao, after all these months years of this. ). I will behave nicely and be an adult, pinky promise.

Meanwhile, DD1 has taken to her bed with either a tummy bug or depression. She was in a foul mood with me yesterday, so I've left her to have a long lie in. Will see if she'll have a bowl of soup or something for lunch.

Hope your snack and lunch goes well today!

[Minimoan]

I have posted here once before, about my experiences of being hospitalised (for three years) with severe anorexia through my teenage years. I know that I undoubtably would have died without the intervention, but those early days of experimental ED treatment have left me with terrible memories ... thankfully treatments have moved on over the last twenty years. Since then, I have battled to build a life in 'recovery' alone, as specialist ED services for adults were then non-existent ... you lived or died ... and some of the beautiful young girls I knew, now shine brightly and finally free in starlight skies. I so wanted to prove I could do it ... live a 'real' life ... to reduce the intense guilt I felt/feel over the suffering of my family during those years. But my life is a 'half-life' ... anorexia is my 'secret shame'. I HATE the knowledge that this terrible illness is still maiming young lives full of promise ... and so hope that with the help that is available now for young people ... they CAN overcome. For me it is more complex ... anorexia feels interwined within me ... but I still live and try to keep my hopes and dreams alive. Maintaining some level of quality of life is so important to me ... there MUST still be joy in life to keep hope burning ... often in such simple things ... cosy pyjamas, favourite films/TV programmes (GBBO, Downton Abbey!), cross-stitch, sewing, reading ... even in the bleakest times ... there are ways of giving quality to the lives of those you love, and sparking hope anew ...

[LakelandLassie]

Hi Peace
Hope everything is going OK for you and your family.
Thinking of you

[PeaceOfWildThings]

Hi there!

Yep, just dropped some things off at the hospital for DD. She might get to come home for one night this weekend, if she has put on weight, etc. Her bedroom has been due for a sort out, so I've been tidying it up, getting the floordrobe washed. Managed to vacuum in there today! Tomorrow we move furniture around, and I'll order her some new curtains.

Have found many lists she has written of exercises that I guess she had been doing in her room, and lists of food she's eaten with the (over) estimated calories. So I'm putting them into storage somewhere, together with things she isn't allowed to have (e.g. hangman games, herbal teas, low cal sweets or chewing gum etc.) It might be interesting for her to have when she's older. She won't be discharged in the very near future, so we've cancelled out trip away at Christmas. (We've already cancelled trip away for this half term, obviously. We would have been flying back today.)

[Georgethesecond]

So sorry to hear what has happened. How did the supported meal go?

[PeaceOfWildThings]

Well, we've had a few. DD2 is eating, at this stage and extreme low weight that is not unusual. The difficulties are to be expected when she is nearer the average weight (for her age, height, etc) and it is good to have the support of the hospital to deal with what is to come.

[Georgethesecond]

Yes. I hope they are good and can help you through this.

[LakelandLassie]

Yep, I'm finding it harder in some ways now that DD is at (the low end of) a healthy weight. She is terrified of gaining any more weight and the ED behaviours have certainly increased.
We have been trying for her to manage morning snack at school but she admitted that she hasn't been eating it. She is very slow at eating so often runs out of time at breakfast(has to get school bus) and lunch to get anymore calories in.
Other than remove her from school again I'm at a bit of a loss at how to keep getting those calories in.
PeaceHope your DD manages to get a day at home this weekend.

[Minimoan]

I hope that the unit can continue to support your daughter, Peace, and she continues to make baby steps in the right direction.

Lassie, can your daughter take any more calories in fluids to help her continue to make progress?

I wish both your girls strength, with the support of their dedicated families behind them, willing them on ...

[PeaceOfWildThings]

She's home! Has to be in a wheelchair for trips out, as only allowed 2 lots of 10 minute gentle activity a day. We have to continue the hospital meal plan here as much as possible. There's a lot of dairy and carbs!

[Georgethesecond]

Oh my goodness! I wish you strength on the road ahead.

[PeaceOfWildThings]

She's only home for the weekend. Snack last night. We're all up late for breakfast.

[Georgethesecond]

Fingers crossed!

[PeaceOfWildThings]

DD has told me I'm getting it all wrong. Not following the meal plan how she'd like. Have phoned the hospital and they have confimed that I'm not doing it wrong.
She wanted to go out, wanted to go to a place where she ran off last time, until I insisted she'd have to be in the wheelchair. Then she stopped eating her lunch. She has since had a strop, thrown a cup of cold tea over me and my crochet and stormed out into the garden in her socks.

[Georgethesecond]

Oh God. I don't expect you are doing it wrong. She's pushing back so she doesn't have to eat isn't she. So sorry.

[PeaceOfWildThings]

Yeppers. At least DH is no longer in denial and he understands why hospital is the right place for her!

The scary thing is, they are so understaffed I think she might have been sent home because they simply don't have enough staff.

[PeaceOfWildThings]

DD back at the hospital and she lost over a pound over the weekend. They're going to put her on bigger meals, I'll go in for more supported meals too, and she'll only be home for one night this next weekend (if that).

[LakelandLassie]

Aw Peace thats a bit 'bleugh' for you for you all. Rest, regroup and plan your stratergy for next weekend.
You have been at this alot longer than me so please forgive me if I'm trying to teach granny how to suck eggs and also that everyones situation is different. When my Dd behaviour has been 'difficult' I have always made it clear that i love her to bits but I hate what the ED is making her do and that its not acceptable- then i make her clean up!!
I made the decision to cut back on school for a while. I just couldnt get enough food in her in the time and ED behavior was increasing. She raged for a bit but seemed almost relieved this morning. School (and now boyfriend) is a huge motivator so I hope I've done the right thing.
Sending you.x