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kazi67

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Reply with quote  #1 
My 19 YO d who has been doing amazingly well
Every one bangs on about “State not weight” well she has been socialising, planning for future (enrolled in 2 courses) did another one online
she has been happy, back to her old “self”
We have all been so happy to see her “come back”
Weigh in yesterday (against doctors advice) as my gut instinct said I need to know (we do a weekly weigh in) doc said don’t worry for a few weeks (he had the luxury of going on holidays) unlike us who we have cancelled trips as just didn’t feel we quite ready and extra stress etc
So I felt like I’d been hit by a bus when scales showed 2.9 kg loss in 1 week
Back to square one [frown] Well not quite but 3 months hard work [frown] feels like down the drain all that cooking shopping etc
I know what I have to do but this illness just sucks big time!!!
Needed to vent
Sadly We’re all in this together right
seaglass

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Reply with quote  #2 
You are never back to square one as you are armed with knowledge and wisdom and fight and you know that state is great even if weight is down.

Holidays are always hard. Routine is lost. You drift a bit. And recovery is never linear.

So, yes, there's been a biggish dip in weight. Start again and dig deep and do what we all do and reset your energy to feed well and do all those little things to add up to regaining weight. Make each bite count. Go for bagels over bread, choose high calorie snacks, add rapeseed oil, cream and butter to whatever you can. Add in an extra smoothie/hot choc/milk drink to each day.

You're never back to that all paralysing, scary, confusing place post diagnosis. Because all you've learnt so far means you have the knowledge and strength to get things back on track.

It's hArd, it's exhausting. You can do it. We will cheer you on and pick you up if you stumble.
mjkz

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Reply with quote  #3 
So sorry Kazi but so glad you weighed her.  Seaglass is so right and we're all here to help support you as much as we can. It still sucks though.
kazi67

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Reply with quote  #4 
Thanks Seaglass and mjkz
Holidays are definately hard even though we cancelled a planned trip to keep life “calm safe and predictable”
I’ve had my crying day my d was as shocked as me I think when we saw the number on the scales
And yes so pleased I did decide to take her to another doc for a weigh in (even though d was very cranky about that)
Funny thing was last night I served a good size steak plus a sausage and chips cooked in butter and garlic on the BBQ and she ate it all up [smile] so that’s a good sign
She is as devastated as me I think
We have had a good talk and hopefully this is a learning curve for her to see how much more she must eat if she wants to participate in “life” fully/normally
Thanks for the support!!! xx
Torie

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Reply with quote  #5 
Kazi - I don't doubt that your d lost some weight this week, but I'm skeptical that she lost THAT much in his tone week. Weird things happen with scales sometimes, and perhaps she was weighed on a different scale this time, which could compound the unreliability.

I suppose another possibility is that she wasn't able to trick the scale this time for some reason (it's possible she had been water loading or hiding weights in the past).

Whatever the reason, I'm really sorry you had to get run over by that bus.  Sucks.  

You're doing great.  Keep swimming.  xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
kazi67

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Reply with quote  #6 
Hi Torie
It was a different scale so I did think to allow a kg for that also not too sure about the water loading as she doesn’t always know the time/day I make the appointments but will keep that in mind
I guess I just freaked out (im super anxious most of the time) and as I really don’t get much support/help from anyone so I thought omg she’s been purging or using laxatives but I looked for these in her room and couldn’t find anything
I Thought bcause I’d taken my finger off the pulse, she/ed had taken advantage, as we have been a bit relaxed on the supervision over holidays [frown]
Anyway she seems to b eating well today
I’ll keep swimming and supervise more closely [smile]

Torie

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Reply with quote  #7 
Kazi - It will be okay.  Progress is not linear with this vile illness, and whatever the explanation is, you will have your d back on track soon.  

Delighted to hear she is eating well at present!  You're doing great.  Keep going. xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
tina72

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Reply with quote  #8 
Hi kazi67,
there is nothing lost. You realized it soon and you know what to do. 3 kg is not nothing but it is possible to get back in some weeks. And maybe 1 kg is because of another scale. So take a deep breath and than go on refeeding. You will not lose her slipping down the rabbit hole again.
You have a really good instinct that you got her weight! Great!
I send you a big pack of power and a huge hug from Germany!
Tina72
kazi67

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Reply with quote  #9 
Hi Tina
Thankyou for your reply/support [smile]
This forum has been a lifesaver for me!
From the doc sitting there asking me what should we do? After the weigh in [frown]
I’m sitting there crying shaking my head, gutted
I get on the forum and now feeling strong and ready to take on ED
Bring it on!
D ate steak again for t last night!
My d at the start of this went “vegetarian” and hadn’t eaten steak in past 6 months now 2 dinners in a row
Go take a flying jump ED!
Just hope this also gives other parents hope! We can beat this
I remember another doc I went to for a second opinion on something and she asked me “did I think I had done too much for d”
I walked away thinking what was the alternative? Let her starve to death???
Seriously without this forum I hate to think where we would be right now
So thankyou all again for your kind,encouraging helpful words
You all are amazing parents xx
AUSSIEedfamily

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Reply with quote  #10 
Dear kazi67,

Feedback not failure.

The State Not Weight thing is about the whole state of the person and has numerous measures for it. Physical, mental and one of the really big measures is Mums spidey/gut feeling senses. This mums spidey/gut sense/feeling is unique and extremely special and there is not a doctor or clinician that can learn it for your child and there is no school or university/college that can teach it for your child.

Great work!!

__________________
ED Dad
kazi67

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Reply with quote  #11 
Thanks AUSSIEedfamily
Kind of doing a happy dance in my head
Cooked up chicken HEAPS of cream, cheese & pasta tonight served up, turn on tv and
D has eaten it all yay!!
Sent d to toilet b4 t and supervised her 1 hour after [smile]
Feeling positive
tina72

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Reply with quote  #12 
Hi kazi67,
great that she ate all that without complaining. You will get that soon I think.
The doc asked you what to do??? If it weren´t such a serious illness, it could be funny.
I told my d that being vegetarian/vegan is not possible for people with AN. No discussion about that.
Than we watched an interesting report on TV about how the soya monoculture for vegetarian food distroys the life space of so many animals. Since than we had no more discussion about that. Producing vegetarian food disturbs birds and insects, too, and they are animals of the same value ethically. Too many vegetarians don´t think it to the end. We think that eating biological produced meat (which is much more expensive here in Germany, a chicken for example costs 35 €) is totally o.k. to eat.
And thank god my d always loved chicken...[wink]

"I remember another doc I went to for a second opinion on something and she asked me “did I think I had done too much for d”
That is the old fashioned Hilde Bruch thinking. You must have done too much or too less for your d. No. Parents do no cause eating disorders.
Do you think she would have asked you wether you have done too much for your d if she had cancer? I am sure not.

So forget all that. You are a great mum and you do everything for her that is needed. Not more and not less.
Tina72
kazi67

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Reply with quote  #13 
Hi Tina

Yes unfortunately you are right about it being funny if not so serious, and also about being vegetarian, but we had kept giving her chicken but I wasn’t really game to try steak but bcause I was so tired out and couldn’t get out of bed that day, h cooked up BBQ and then I just served it to her and I really couldn’t believe that she ate it, but I was very happy
I think doc who was suggesting I’ve done too much think she is suggesting I “enabled”?My d idk? But I read a lot on this forum about others getting the “wrong” info from “professionals” makes it so hard for us parents then doubt steps in and I find myself asking myself if I am doing the right thing as now my d refuses to see physc I am kind of on my own which is scarey
That’s what’s great about this forum we get all this useful advice and you all know what you are talking about
So thankyou all again for all your support!!
You are all awesome! x
tina72

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Reply with quote  #14 
Steak is wonderful and I cheer you that she ate it. I hope she will continue and not get back on that vegetarian path. It is possible, but it is a lot more work keeping the weight with vegetarian food. So we have enough work I think at the moment and I will not lose my power with that.
When I read your h cooked BBQ I had to go to the fridge because I got hungry, isn´t that funny?
Try to get your d see a physician regularly. They are not all bad and it is important to check blood and heart now and then. I told my d that if she wants to go to university in October (and if we should pay for that) she needs to see a physician at least 2 times a year. Minimum if healthy. It is boring we need to make all these contracts but it works. AN people often love rules so if you once fought them through you can work with that.
Tina72
kazi67

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Posts: 108
Reply with quote  #15 
Hey Tina
Definately not following vegetarian diet now! Just slowly stopped and yes very hard to keep up with food on vegetarian diet
BIG bowl spaghetti tonight all eaten up [smile]
I Take D to doc appts weekly for weigh in/blood pressure/and take bloods monthly
If she is low mood and won’t talk about what’s bothering her and I’m comcerned, definately back to docs too
The main things that get her down now are friends that aren’t really friends [frown]
Heartbreaking but just another challenge of this ugly illness
In so many ways we have to be there to support our kids don’t we, but it’s definately worth it
Even though I’m EXHAUSTED!!!!
Will try get some sleep now x
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