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Morgana Show full post »
ooKoo
Morgana wrote:
I know it sounds awful but I think you will understand, I was hoping she would be sectioned this time.


This time last week, I felt exactly the same - it might sound awful to anyone who has never had anything to do with this illness, but pretty much every one of us here gets how you feel.

Morgana wrote:
or she would be sectioned and given olanzapine


Would it be possible for her to have the Olanzapine anyway?  My D started on it on Tuesday this week, so very very early days, but her anxiety over food has subsided considerably. 

Glad to hear that she hasn't lost any weight over the week of restriction.  Your D has had to make a brave decision with turning it around - I watched my D wrestle with the same decision last week, and it was awful, but so much of a relief once the decision was made.  In fact, I noticed a change in my D, I think that I could detect the teeniest amount of relief in her too - she had no choice, a Section 3 or start eating.

Good luck with plugging those holes...x
UK - South East

19 yo D

Dx AN Feb 2015 (Aged 15). Pre-existing low self-esteen and high anxiety. 

2015: 3 x medical hospital admissions. 1 month in IP which she self discharged from [eek].
2016: 3 x hospital admissions. 
2017: CAMHS CBT. WR, dropped out of 2 different colleges and started an apprenticeship.  Started having grand mal seizures and was diagnosed with epilepsy in Nov 2017. Sacked from job because of this.  Tribunal ensued.
2018 - doing a Psychology degree through Open University and working in retail to pay her way in life. Relapses with eating disorder in June 18 and Nov 18 😢. 

On particularly rough days when I am sure I can't possibly endure, I like to remind myself that my track record for getting through bad days so far is 100% and that's pretty good. [Author Unknown]
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Morgana
Thanks for your reply ooKoo. I am glad your d is taking olanzapine. My d was prescribed it at home and refused, then prescribed it in ip and refused. They can't give it to her without a section, and they won't get a section just for the olanzapine. I just think it would make it a bit easier, it wouldn't be so torturous for her. But there's no changing her mind. In fact I think it was the threat of medication that got her accepting feeds more than the section!

ooKoo wrote:
 In fact, I noticed a change in my D, I think that I could detect the teeniest amount of relief in her too - she had no choice, a Section 3 or start eating

I know what you mean about the relief, d is accepting her feeds today without issue. This is the third time she has stopped accepting her feeds and had to be threatened with a section/medication, it's like she needs that imminent threat to be able to accept the feeds. Olanzapine is the one thing my d fears more than nutrition!

I hope our d's continue and strengthen each day.
 
15yr old d. June 2014 stomach pain. Medical investigations until Feb 2015, referred to CAMHs dx food anxiety. Kept restricting and losing weight until July 2015, medically unstable. Began intensive re-feeding at home. Re-evaluated by psychiatrist, dx Autism Spectrum Disorder and Atypical AN.
Found out it's actually Typical AN.
IP from Oct 15, ng tube Nov. Re-started eating food July 2016. Discharged from IP August 2016 97% weight for height.
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mjkz
How old is your daughter?  What age over there do you stop making medical decisions for them and they get to start?  It just seems so crazy to keep repeating this same pattern with her still being tube dependent but they won't do a medication that could help even with your permission.  Is there any way to go through with the section anyway so you can at least see if the olanzapine works?  Will she try any meds?
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Morgana
Hi mjkz. D is 14 (15 next week!), and at 14 they are legally able to make their own medical decisions, which I don't think should apply when there is a mental illness! I know we are going to be at this same point again in the near future so as soon as she starts refusing feeds again I will push for a section again. But they have to give her a chance to 'turn it around' which she seems able to do at the last minute. 
She won't try any meds. She was prescribed diazapam after weeks of refusing the olanzapine, but she'd heard on the news they are addictive so she wouldn't have them either. It's very frustrating and her progress is sooooo slow, they keep losing time by testing this and that method. Well I think they have tried everything possible, it's quite simple: she needs full observations and full nutrition. Not easy but that's their job!
15yr old d. June 2014 stomach pain. Medical investigations until Feb 2015, referred to CAMHs dx food anxiety. Kept restricting and losing weight until July 2015, medically unstable. Began intensive re-feeding at home. Re-evaluated by psychiatrist, dx Autism Spectrum Disorder and Atypical AN.
Found out it's actually Typical AN.
IP from Oct 15, ng tube Nov. Re-started eating food July 2016. Discharged from IP August 2016 97% weight for height.
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Morgana
It's started already...Ed is planning the next hole and it's option number 2, taking the tube out. I just spoke with the psychologist who said that d told her today she wants to get the tube out so she can go to mainstream school asap. Psychologist was happy that d seemed to be motivated to recover. What, the day she missed being sectioned she's suddenly motivated to recover, after a week of restriction??
My spidy senses tell me she's motivated to get the tube out so she can't be force fed as quickly or easily!

I never used to be negative or suspicious, but really, how can they not see it???
15yr old d. June 2014 stomach pain. Medical investigations until Feb 2015, referred to CAMHs dx food anxiety. Kept restricting and losing weight until July 2015, medically unstable. Began intensive re-feeding at home. Re-evaluated by psychiatrist, dx Autism Spectrum Disorder and Atypical AN.
Found out it's actually Typical AN.
IP from Oct 15, ng tube Nov. Re-started eating food July 2016. Discharged from IP August 2016 97% weight for height.
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K63
Hi Morgana, hope your d doesn't pull out ng tube and if she does that they will re insert another one. My d used to open the wardrobe door and exercise behind it as she was inside bed in a two beaded room while IP . She managed to exercise while IP for 4 1/2 months it took a while post discharge to stop this. She was also commenced olanzapine but refused to take it staff and her dad and I tried so hard to convince her but no way would she take it .she said she wanted to recover the hard way without help of medication how bizarre is that. Thinking of you it's such a difficult time .
Daughter started restricting in February 2014, tried re feeding at home hospital admission 4 1/2 months weight restored started restricting post discharge, back on meal plan full supervision weight restored april 2016. Starting to hand back responsibility for meals it's scary. 
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mjkz
Quote:
I never used to be negative or suspicious, but really, how can they not see it???


Ever wonder if the average IQ is no longer 100?  I think it has to have dropped at least 20 points and mostly in the psychiatric community.  Well one more opportunity for that section and trying the olanzapine and much sooner than you thought.[rolleyes]
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deenl
K63 wrote:
her dad and I tried so hard to convince her but no way would she take it .she said she wanted to recover the hard way without help of medication how bizarre is that.


Ditto. My son said that recovery was meaningless unless he did it himself without help. [tounge2]

Ah well, onwards we plod!

Hope you all have a good (ok) day,
D
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, no progress. Medical hosp to kick start recovery Feb 2016. Slowly gaining at home, seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. 2018 growing so fast hard to keep pace with weight. 2020 Off to university, healthy and happy.
  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal.
  • We cannot control the wind but we can direct the sail.
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Sotired
God,the punishment they deal out to themselves is endless isn't it?doing it the hard way-all about punishment of self because they don't feel they deserve anyone's attention.horrible that their self image is that low.
Re the accepting the tubefeed just in time-could you institute a three strikes and youre out method?this just means if she has pulled this twice before,the third time the section goes ahead regardless of her starting back on the feeds.you and the pysch can just tell her that you can see how much she struggles and that this means she can accept treatment more easily as it's been done to her,not with her.
Ugh I'm not explaining that well.she can justify the treatment to ed,because she can say to it that it's not her choice.i know it sounds ridiculous but sometimes that helps our kids accept things they couldn't otherwise because the anorexia won't let them.once the choice is gone in any capacity it can help them.
I hope that they start treating her effectively soon-those meetings we have to have are exhausting.
Thinking of you hon,
Sotired42
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Elena
I'm just checking in again. How frustrating that they haven't figured out what they need to do, especially when you can so clearly see what needs to be done. And so hard that she still refuses medication. I have trouble believing that at 14 she is considered responsible enough to make decisions about her treatment. So 14 years of age and with a brain disorder and she is expected to know what is best for her, while her loving, non-brain disordered parents have no say, are they all quite mad?? AAAGH!! Feeling frustrated for you.

We are doing ok, not good, but ok, so long as we don't relax and just keep going, we'll probably get there, eventually....
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Morgana
mjkz wrote:
Well one more opportunity for that section and trying the olanzapine and much sooner than you thought.[rolleyes]

Yes that's true! I actually litteraly laughed out loud, so thank you for that giggle.

deenl wrote:
 My son said that recovery was meaningless unless he did it himself without help.

I think my d feels like that too, well, she will when she wants to actually recover! They are so hard on themselves. I can see her thinking any help might feel like cheating. 

sotired wrote:
Re the accepting the tubefeed just in time-could you institute a three strikes and youre out method?this just means if she has pulled this twice before,the third time the section goes ahead regardless of her starting back on the feeds

That is a brilliant idea, and I will definitely ask if this can be the case. Thank you! I know your wisdom comes from painful experience, I appreciate your support so much and always thinking of you.

Elena I am at the point now that I won't accept them trying or testing anything else for a good while now that jeopardise weight gain. Weight gain is the priority and as much as I know she will have to learn to resist the exercise urges and can't stay on the 1-1 forever, she really needs that support now to help gain. Im fed up of them saying that they need to "test things" and "it's more information" NO, enough, surely they have all the information they need at the moment ie she is very ill and needs to gain weight!

I'm sorry to hear a note of despair in your last sentence. This illness seems to go on forever, and morph and slip and slide around like a snake, but we have to believe their will be an end. 
I think part of the problem is that (understandably) once recovered, most parents don't stay around on the forum and it feels like no-one on here is getting better. But of course they do get better, and then they have no need to be on here.
Thinking of you x
15yr old d. June 2014 stomach pain. Medical investigations until Feb 2015, referred to CAMHs dx food anxiety. Kept restricting and losing weight until July 2015, medically unstable. Began intensive re-feeding at home. Re-evaluated by psychiatrist, dx Autism Spectrum Disorder and Atypical AN.
Found out it's actually Typical AN.
IP from Oct 15, ng tube Nov. Re-started eating food July 2016. Discharged from IP August 2016 97% weight for height.
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K63
Hi Morgana, just thinking of you hope your d is doing a little better.
Daughter started restricting in February 2014, tried re feeding at home hospital admission 4 1/2 months weight restored started restricting post discharge, back on meal plan full supervision weight restored april 2016. Starting to hand back responsibility for meals it's scary. 
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Morgana
K63 thank you so much for thinking of us! D is a little better physically. She has gained 1 kilo over the past 2 weeks (0.4kg then 0.6kg after a calorie increase), still with full 1 to 1 obs and now on 3100 calories a day. So still managing something to not gain a kilo a week. It's most likely at night as the nurse on obs is sat outside her room, and they do occasionally go in and observe her for some minutes to make sure she's asleep/pretending to be asleep lol, and they don't think putting someone IN her room would work as she's so skilled she would probably be able to get away with it under the covers even with someone sat next to her. So now the plan is to increase the calories until she is gaining a kilo a week. 

She's stopped saying she wants to go to mainstream school, so not at risk of taking the tube out now. I'm sure she thought about it a lot and has just refined her night time exercise methods.

She keeps asking the staff to have the obs removed, and gets very animated when they explain why not. There is a plan in place for her to gain a kilo a week and they'll reduce the obs slowly, but she's not happy with this as she wants them removed quickly, I wonder why!

She came home again for a few hours yesterday, and it was really lovely. I felt almost like she was my girl back home, until she had to go when it felt like letting her go all over again.  Then today I find out she hasn't gained a kilo since last Monday, and she's annoyed at not being allowed to reduce the obs. Just a reminder of the reality that is, she is still very much in the grips of anorexia, so who knows what might happen this week!

Hows things with your d at the moment?
15yr old d. June 2014 stomach pain. Medical investigations until Feb 2015, referred to CAMHs dx food anxiety. Kept restricting and losing weight until July 2015, medically unstable. Began intensive re-feeding at home. Re-evaluated by psychiatrist, dx Autism Spectrum Disorder and Atypical AN.
Found out it's actually Typical AN.
IP from Oct 15, ng tube Nov. Re-started eating food July 2016. Discharged from IP August 2016 97% weight for height.
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floating
Morgana

Sorry you are still struggling to get to WR what a nasty monster an ED is.........could say worse words of course but trying to behave , grrrr

Thinking of you and want you to know you are a great mummy

Big hug.........your little girl will get there.....you seen a glimpse so you know she is there

xxx


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K63
Hi Morgana, lovely to hear from you and that things have started to improve . Happy that it was pleasant having her home as it can be stressful sometimes. It's good that they are increasing calories and hope they will continue to to maintain the weight gain. While my d was ip the gain was very erratic ranging from .2, .4 .8 , 1.2 , she still continued to exercise secretly .It took a while after discharge to finally stop this so it would be great if she could stop while ip. After her weight loss post discharge it has taken until now to get weight restored it's been full on full supervision but I now can thank everyone here for the support and food is medicine . It's slow but my old d is coming back as she is being weight restored . She is almost at the end of the school year it's been busy with full supervision or all meals she still needs it. . Wishing ye the best hope you are taking care of yourself .
Daughter started restricting in February 2014, tried re feeding at home hospital admission 4 1/2 months weight restored started restricting post discharge, back on meal plan full supervision weight restored april 2016. Starting to hand back responsibility for meals it's scary. 
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Morgana
Thank you so much butterfly. I feel so guilty, I am lucky my d is in ip and is actually gaining at the moment, and I still complain [frown] It's such a battle all the time, you know more than most.

K63 I can imagine the novelty of coming home will wear off soon and it may not be so pleasant so I just take each nice moment as it comes.

It is so hard to get regular weight gain when they secretly exercise! As she's on 1 to 1 the ED is getting even more sneaky and dare I say skilled than ever.  I'm really hoping they can stop the exercise in ip. Even though she's been there 5 months it's only been the last 6 weeks or so that they've taken it so seriously. I guess because she's just not gaining like she should, so she's not progressing.

I am so happy for you that your d is w/r now. I know it's not a magic bullet but to read that your old d is coming back to you, well my face is suddenly wet [wink] You have worked so hard for her, it must feel like you can breathe a bit now.
15yr old d. June 2014 stomach pain. Medical investigations until Feb 2015, referred to CAMHs dx food anxiety. Kept restricting and losing weight until July 2015, medically unstable. Began intensive re-feeding at home. Re-evaluated by psychiatrist, dx Autism Spectrum Disorder and Atypical AN.
Found out it's actually Typical AN.
IP from Oct 15, ng tube Nov. Re-started eating food July 2016. Discharged from IP August 2016 97% weight for height.
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Elena
Hi Morgana,
I'm glad to hear that you've been having some weight gains, even if they are not at the rate you would like. It sounds as if they have a plan, I just hope your d's ED doesn't outsmart them.  I find it hard to believe that your d has been ip for 5 months now, I'm sure it seems an eternity to you. I'm glad she has been able to come home occasionally.  Hang in there! Surely any weight gain is better than none, but I hear your frustration, such slow progress is hard when she is still so unwell, and you live in fear that the ED will undo all the good work.

Thinking of you.
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Morgana
Thanks Elena. You are so right and put it in perspective ie some weight gain is better than none! It's just every time we think the holes are plugged, and everything seems to be in place for her to gain a kilo a week, something unexpected happens. And each week she isn't gaining that magic kilo, she is taking longer getting to her target weight. She's still not wanting to recover so like you say, we live in fear of what the ED will do next to undo it all.

Oh and it's now almost 6 months, with many months to go as she needs to be w/r, eating food and maintaining w/r. At least she seems okay about being there, she has anxiety but no depression or s/h so we are thankful for that.

How's things with your d?
15yr old d. June 2014 stomach pain. Medical investigations until Feb 2015, referred to CAMHs dx food anxiety. Kept restricting and losing weight until July 2015, medically unstable. Began intensive re-feeding at home. Re-evaluated by psychiatrist, dx Autism Spectrum Disorder and Atypical AN.
Found out it's actually Typical AN.
IP from Oct 15, ng tube Nov. Re-started eating food July 2016. Discharged from IP August 2016 97% weight for height.
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Elena
I tried to reply, but the computer rejected my reply. Too tired to type it all again. Thinking of you.
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Elena
Hi Morgana, sorry to hear that you are feeling down.  It is a tough, relentless disease, but somehow, sometime we just have to beat it and get our girls back. I hope your d is still making some progress and ceases to find holes in her care. 
Hang in there, we want this to be all over and all fixed, and maybe in the future we'll be able to look back and say 'that there was a turning point, we didn't see it at the time, but things started to get better from that point in time' and the turning point could be now, or next week, or next month, or tomorrow. 
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