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hopefulmama

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Reply with quote  #26 
I am so sorry things re so hard.  I remember well how it feels to see your daughter so depressed and not wanting to live.  

As others have said, the only way out of this is through it and to help your daughter gain weight.  Anything that helps achieve that goal is worthwhile.

Have you considered medication?  Traditional anti-depressants are usually not very helpful at this stage.  However, olanzapine was very helpful to my daughter at this stage.  It calmed those voices in her head that she is telling you won't let her sleep.  As my daughter said, "it just dulled the noise a little." I didn't really want my d on medication and she didn't really want to be on it. We looked at it as a temporary means to an end.  If she was less anxious, she could eat more effectively.  In time, the extra weight healed her brain.  Once her brain was healed she didn't need the meds anymore. 

With therapists, the thing that helped me was to ask the therapist what the plan was. In other words, what did she see as the path for my daughter to get better. Sometimes the answers were surprising.  We had one therapist along the way who said the goal was to teach my d how to manage her anorexia since it would always be a part of her life. I was shocked, but I never would have known if I had not asked. The therapist should have a treatment plan that has a way out of this.  She should be checking progress against the plan at regular intervals and be ready and willing to adjust course.

There are risks associated with inpatient. However, often with a quality program, the benefits outweigh the risks. 

There is nothing worse than seeing your daughter so miserable.  I know it's not much comfort now, but with consistent weight gain and getting her back to HER historical weight range, you WILL see improvement.  The thing to figure out is how to make the weight gain happen. 

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Enjoying my 21 year-old daughter's achievement of active recovery that was made possible by the resources and education I found on this forum.

Don't give up hope!
Kali

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Reply with quote  #27 
Dear NJH1919

Sorry that things are so difficult.

Keep trying to feed your d. and visit the high-calorie thread on this board for some ideas. Can you try to increase the calories in the same amount of food your d. is eating by adding oil or heavy cream wherever possible? Can you give her a smoothie/shake every day? You can make it seem more "healthy" by adding fruit: strawberries, mango, and bananas taste good. Ground up almonds are good to add for protein, and honey can make it taste better. You can also put in some heavy cream/ice cream/ full-fat yogurt. I know how difficult it is, I spent 9 months following my d. around with a plate of food before I threw in the hat and opted for a higher level of care for her.

If you are not able to help her realize the weight gain at home there is nothing wrong with residential treatment. Certainly, it is better to not have to interrupt her life by going into a program, however our d. was in residential treatment for 3 months and it did help her make huge progress. At that point, I was too frightened to have her at home because she was suicidal and in addition to that her food intake dwindled to the point where she was eating almost nothing and then purging it. So the best option was residential. She now eats and has reintegrated into her life, and would not dare refuse what I give her. Things are certainly not perfect and I do not consider her recovered but she is showing some signs of recovery and remission, even though sometimes it seems soooo slow. We are 17 months post her official diagnosis. 

The important things now are: that your d eats and can get to a healthy weight and has therapeutic help during this process. If there are helping hands there in NZ who can offer her a higher level of care and it would be beneficial for her, look into that and see what resources are available for your daughter. SoTired knows the system in NZ and maybe you can follow up by looking into the resources she suggests, because if plan A doesn't work it is good to be thinking about a plan B. 

What is she actually eating every day at this point? If you let us know perhaps some experienced parents will have some ideas about how to increase the calories.

They got them to eat with a combination of supervision and behavioral rewards when my d. was in residential.

Best wishes,

Kali

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scaredmom

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Reply with quote  #28 

Hello,
I am new to FBT. My D was 9 when she was first restricting. (Diagnosed with EDNOS). She was told by the pediatrician to "eat what mom puts on your plate". She did and it went well. She was good for about a year and a half. Then this past December I noticed she wanted to eat healthy! In February took her to the pediatrician and she was admitted to hospital for 3.5 weeks.  She was the "good girl" at the hospital and ate and gained. However at home for passes, she was aggressive and physical (now aged 11.9). She has been home for 11 days and although she eats (2500 cal per day) now we have to increase to 3000 cal per day as no weight gain (but no loss since being home). She tries to rationalize everything: " I should be able to choose" " Not so many sweet things in one day" etc... It is really hard to stand strong as I will not argue with her- won't get me anywhere anyway! She "eyes" all drink measurements- does anyone have a way to "undo this behaviour?" I (her mom) seem to trigger her when I say " this is your nutrition" " this is good for you" etc.. So dad has to sit with her to get the job done. Has anyone else had this issue"
I add in oil and butter to everything... She won't eat smoothies/shakes! I panic about meal preparation all day and night.  I don't want this to get the better of me. Any wise words?

thanks

Torie

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Reply with quote  #29 
Hi ScaredMom - So sorry you needed to join us here.

Sometimes it is the dad who has better success at the table and sometimes it is the mom.  We all get better as time goes on and we gain more experience - feedback not failure is one of the mottos here.

What helped me the most was a video made by forum member Eva Musby - I'll put a link at the bottom of this post.

If you would like to start your own thread, you will get more responses.

Please feel free to ask all the questions you like.  We're here to help. xx



-Torie

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njh1919

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Reply with quote  #30 
You are all so fantastic and I love reading your responses. You have no idea how helpful you all are to me!
SoTired - we are in Auckland also. We are going through the Eating Disorder CLInic in Ponsonby. I haven't heard of The CFU or Marinoto but I will keep the CFU in mind. D is 48kg and obs have been stable.
The therapist said she isnt depressed and therefore doesnt recommend antidepressants. She thinks the suicidal threats are the AN. Well yes of course they are (eye roll!) but that doesnt help! But therapist doesnt see her sobbing and saying her life isnt worth living.
Should I ignore the therapist & take her to our gp to discuss antidepressants? Im not sure if they will prescribe them if the therapist hasnt recommended it? Hopefulmamma - Is Olanzapine only on prescription?
Thankyou all!
Sotired

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Reply with quote  #31 
Olanzipine and fluoxetine are the most commonly prescribed antidepressants used in anorexia treatment,though they don't work for everyone.your GP can prescribe them I would assume as mine did for me,though our team wrote the script for my d.
If you have the emergency numbers on the fridge for the crisis line then it should have been explained to you what they entail.sigh.nz services suck sometimes.
One thing I learned as I went along is not to think that the professionals always knew better than I did-they so often got it wrong and we were left picking up the pieces.
Are they taking your ds obs properly?always insist that they check pockets,make sure she doesn't go to the toilet straight beforehand as they waterload from the bathroom taps and that they only do lying and then standing blood pressure checks.
The only thing about going private is that they can be thinking of not what's best for your d,but what's best for their pocket.a responsible therapist should not only have known about CFU but recommended and explained the process to you,as there is a process to it.when suicidal thoughts are present then you have to know how to act on them.and yeah-I'd be rolling my eyes too.of course those suicide threats are part of the anorexia-how does that make them less real??
Please do find the admission criteria for starship,the information is useful tohave and as there are at least 12 criteria you can take your d in under two of them easily .
My own d had the most stubborn illness requiring stays at the unlocked and locked sections of the CFU and multiple admissions to starship.she had suicidal thoughts,self harm issues and a refusal to eat or drink that was heartbreaking.added to all that the system in NZ is set up that when they are 17 they are deemed legally an adult so then you have to MHA them to get them treated.
I'm not telling you that to frighten you but knowledge is power and can force us to act quickly when we realise that some doors may close sooner than we thought.you will still have CFU available til your d is 18 but starship is often cut off at 17.
Don't stay with an unhelpful therapist.she is there to help you-if she isn't,then she goes.if your d likes her there may be cause to worry as often our kids like the therapists that help them the least.my d hated our pyschs that were involved with her treatment as they were effective in helping me mha her to get her treatment.
Don't let anyone belittle your issues that you are having-only you know what it is truly like living with your d-write down any incidents of self harm,food refusal,only partially eaten meals,any fainting episodes,exercise that you find your d doing-document it and take it into the meeting with the help she is currently getting.
Watch out for hiding food-every mouthful must be supervised as if you don't see it go in,it doesn't.it goes in pockets,waistbands and up sleeves.i found three bags of uneaten food in my ds room -it certainly explained why weight wasn't going on.
Good luck

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njh1919

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Reply with quote  #32 
Thanks again for the advice. I have found Starships admission criteria on their website and it's very helpful to know about. It seems like it's a shame she is 16 as under 16's take priority.
We are off to the gp in a few days so will see what her obs are and will make sure they do bp lying and standing, thanks for the tip.
I might also ask about medican which might relax her, maybe not antidepressents but something that will also stop all the nightime thinking which is preventing sleep.
Thankyou again! I have learnt more from the helpful people on this forum than anywhere else
njh1919

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Reply with quote  #33 
On another note, do you let you daughters go out with friends if it's over mealtimes? We dont want to stop our D seeing friendships as fear that will spiral her more in to despair but it's really hard as we cant see what she is eating...
Sotired

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Reply with quote  #34 
My d had admissions at 16,most of the anorexic kids we met were 15-16,starship just refuses to acknowledge they need to get more funding for these kids.so don't worry about any of the priority admissions-your d is the priority for you and that's all you can afford to focus on,otherwise you miss your chance to get help and respite.
Our d did still hang out with friends,but the truth is her illness was all consuming,it made her tired,unable to focus on anything except anorexia.so even when she was supposedly hanging out with her friends at school or after,she was much more focused on what exercise she could do without people noticing than she could focus on conversation.we reduced school hours as well to focus on refeeding and because again,she was using school to aid the anorexia-purging and exercising.the anorexia made it so her concentration was shot, she told me that herself in a rare moment of clarity during her illness.she became easily upset while attending parties or get togethers because she couldn't eat the food and the noise became overwhelming.anorexia seems to make them overstimulated very easily,almost like an ASD child.
The medication that as a side effect will help sleep is olanzipine,fluoxetine helps with depression.the hard part will be getting your d to take it-we made it non negotiable and it was one of the only things we stood firm on properly,but you have to watch them take it and check under their tongue that it's gone or they just spit it out.(learned the hard way).
If your d is eating very little I would can any visits out-her friends can come over in between meals.be prepared to cancel those visits on short notice too,as it can all go bad quickly from one meal to the next.refeeding has to be the priority,nothing else.it sucks and I know it,but the only way out is through.

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Sotired42
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Reply with quote  #35 
Friendships are definitely important. I used to let D go out at times when there were meals, but she used to have to have one before and if she was out long enough on return too. I would tell her that I knew she was struggling to feed herself and not eating is not an option. I also let her know it was fine if she had something to eat if she was out but I wasn't relying on it. Try not to get into the argument about what she ate when out so it should reduce what you feed her later. 

I tried not to let her go out for prolonged periods of time, especially early on. 

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D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
njh1919

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Reply with quote  #36 
My D has gone out this afternoon then texted to say she doesnt want much dinner as she just ate half a pizza. Little does she know that her exaggerating makes it obvious she is lying. Im unsure she would eat 1 piece let alone 1/2 a pizza! So when she gets home she will have to eat dinner. I can see there will be very big issues with that... she will accuse us of thinking she is lying...
on anothernote, does anyone have any ideas for a highcalorie breakfast?
Torie

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Reply with quote  #37 
During re-feeding, I insisted on being with my d for all meals.  She could invite friends for dinner at our house or I would take them out to eat, but one way or other, I would be there with them.  I think having friends there made it a bit easier for her to eat, but for some the opposite is true.

I think olanzapine is an antipsychotic (not antidepressant), and many here report good results from it.  Seems to make it easier for them to eat and also helps them sleep better.

Muffins can be great for breakfast, and thick-sliced bacon is a winner, too.  Mamabear has a killer oatmeal recipe.  Some have had good success with this: Wake ED-kid up an hour early (or even earlier) with smoothie in hand, "Here, drink this."  It's almost as though Ed is still asleep so kid drinks smoothie with less difficulty, then can roll over an go back to sleep.  Fantastic way to start the day!  xx

-Torie

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Foodsupport_AUS

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Reply with quote  #38 
Remember when she gets home, it was great that she ate pizza. You hope she enjoyed it. It is normal to go out and snack with your friends. Dinner no change!!. Try not to argue with ED, facts, and end of story. 
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D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
njh1919

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Reply with quote  #39 
Ive been reading other threads with some great sounding high calorie foods. I am ok on dinners ideas but she really baulks at sugar so Im struggling to get sufficient calories in to her. When I make a smoothie with icecream she freaks out.
Kali

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Reply with quote  #40 
njh1919,

Quote:
When I make a smoothie with icecream she freaks out.


We have a similar problem with ice cream and I have not yet been able to really reintroduce it. D. says that it causes her a lot of anxiety. Sigh.....

So this is what I do with the smoothies. I use fruit and that makes them "seem" lower calorie (to her) than they actually are. Here is a recipe:

Mangos, bananas, strawberries or mixed frozen berries. Or any other fruit she likes which tastes good.
Full Fat Vanilla Yogurt
Heavy Cream
ground almonds (adds protein)
Full Fat Milk
a couple of ice cubes to make it cold
Honey (I don't add sugar but a tablespoon or two of honey makes it taste pretty good)
A dash of vanilla extract

So you can say "We are having a strawberry smoothie" and focus on the fruit. You can assure her there is no ice cream or sugar in it and the heavy cream will work the caloric magic. As she moves forward, later on, you can add some of these things back. I did put a couple of tablespoons of vanilla ice cream in from time to time but didn't mention it.

As far as her saying she had pizza...you can say that is great, and then serve dinner as FoodSupport suggests. Then maybe next week get a take out pizza and serve it at home or make a deep dish pizza at home and see if she will really eat it.....if she balks you could say, Oh but you ate pizza last week.....any excuse to not eat has to be considered the ED at this point. We heard a lot of "I want to eat with my friends" when we first discovered the ED and I would literally drive around town, pick her up, bring her home and feed her, and then take her back to her friends house. I made it clear that I was happy that she spent time with her friends however she needed to eat dinner. I remember one time she claimed she had pizza with friends. Well, one of her friends has a sister who had a really severe ED and she gets it. I texted her and asked if d. had really had pizza. (this was the only time I ever did that because I didn't want to put her friends in that situation and it was only because d. was in pretty bad shape at the time) She texted back and said d. had had a couple of bites of salad, no pizza.

High-calorie breakfasts I've served:
1.Scrambled eggs with a little heavy cream and shredded cheddar cheese
with Home-fried potatoes with lots of olive oil
Fresh baked whole wheat bread with butter.
Accompanied by a big glass of chocolate milk

(we had that one yesterday...)

2.Oatmeal
add heavy cream and butter and brown sugar.
Toppings: slivered almonds, dried cranberry, cherries or raisins.

Serve with a fruit smoothie.

3.Pancakes made with heavy cream instead of milk, add bananas or blueberries. I put maple syrup IN the pancakes instead of having it on the table; that way she cannot refuse it. 

4.If we are on the go we have a quick breakfast which consists of a Mango Naked Protein Smoothie (420 calories) which I buy in the store, and a granola bar. Not super high calorie, only about 650...but does the trick when we are in a hurry. I do suggest working out something like that in case there are times when you and she need to leave the house in the morning quickly and there isn't time to make a full breakfast.

Hope this helps!

Best wishes,

Kali





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njh1919

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Reply with quote  #41 
Hi everyone, we are very worried about 'losing' our D. We feel like she is slipping away from us. She hates us and tells us she wants to leave home (she is 16). I worry our relationship will never be the same again. Does anyone have any suggestions for books, weblinks etc which talk about your child post anorexia? Or are any of your children recovered and are things back to how they were?
Sotired

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Reply with quote  #42 
This is super common during anorexia.i can't tell you how many times I heard that I was awful,her dad was awful,how she was leaving home...she would run away and I would tell her I would call the police if she didn't come home,so she returned.she would sit outside the gate.eventually I would coax her back inside after giving d time to calm down.
In the end my d went to residential care.she hated us there too.
BUT we are several years on now,one year since recovery from anorexia,though now we deal with gastroparesis.the difference in our relationship is like night and day.we talk happily,she has a great relationship with all of us and she trusts us implicitly to be on her side.so absolutely things can and do get better.
While my d was sick I had to accept that to keep her alive I would have to do things that her anorexia hated-and it would tell me so,often.i had to weigh up my relationship with her vs saving her life.i decided that she could hate me forever but to do that she would have to be alive.in the end the choice was simple but hard.the choice to save her was simple-to let go of what I wanted our relationship to be was hard.
But first you save them,then you worry about fixing things.you won't get it right all the time-and that's ok.
If your d is actively suicidal then don't muck about,ring the crisis line and ask for immediate assessment.if your d has to go to CFU,then let that happen.for very stubborn anorexia they need to see that we will save them from themselves NO MATTER WHAT IT TAKES.
We cried a lot,not gonna lie.but not in front of her for the most part,but after we had done what was needed.
She will come back to you,but you may need to use resources you don't want to to get her there.
Strength to you in the journey

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Sotired42
njh1919

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Reply with quote  #43 
Thankyou thankyou!! Sotired that gives me hope, I really loved reading your message.
Does your D ever discuss the bad times during treatment with you or is it like she has forgotten them?
njh1919

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Reply with quote  #44 
Thankyou ToothFairy I will look for that book. I love this forum, everyone has helped so much
deenl

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Reply with quote  #45 
Hi njh1919,

As our son went through the process of refeeding he abhorred (the word hate is not strong enough)me and only me. He would turn his back if I entered the room, ignore things I said, sneer at me verbally and with his facial expressions, always sit in the back of the car, flinch if I entered his personal space and practically snarl if I happened to brush up against him, you name it he did it.

I think this happened for a number of reasons; he needed an outlet for overwhelming feelings, I was doing most of the day-to-day refeeding and subconsciously he knew I was the strongest emotionally. But believe me, it broke my heart. It was so wearing day in, day out.

But I knew he didn't do it on purpose. I knew he had little control over the unbearable emotions running through him. I knew we always had a great relationship and I hoped with all my heart that that is what would win out. And if he truly needed that outlet in order to eat then I was prepared to give him that, even if our relationship never recovered. There was no choice. I felt punishing him would give the eating disorder a win. "See they don't really love you." or "They only love you when you behave perfectly" etc

So I stayed calm, I didn't react, I just kept plugging away at feeding him. And rang my H and my mom and cried that it was so hard. But he only felt love, no matter what.

He is only just floating around WR but we have him back, for the most part. We joke and laugh, he sits beside me in the car, he comes to me for help. I still can't hug him but tell him now and then that I have given him an imaginary one and get typical teenage eye roll in return. And now I wonder if I will ever take these everyday interactions for granted. The joy of normal contact is in direct proportion to the pain I felt when his ED starved brain hated me.

So, my advice is to keep feeding, keep loving, dig deep for patience, lean on the people who support you emotionally, search on here for Colleen's story and soldier on.

This is normal but hard.

Warm wishes,
D

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2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, tons of variety in food, stepping back into social life. Sept 2017, back to school full time for the first time in 2 years. Happy and relaxed, just usual non ED hassles. 

  • 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. (but don't give up on the plan too soon, maybe it just needs a tweak or a bit more time and determination [wink] )
  • We cannot control the wind but we can direct the sail.
Sotired

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Reply with quote  #46 
Our bad times were horrendous but she doesn't remember the same way I do-she is able to talk and laugh about some things that I cannot.in the end I have gently had to tell her that I will never be able to joke about what we went through,though I do understand her need to minimise what went on.she was a bit surprised but she was respectful and understanding about my position.
She has no idea how much therapy I had through tupu ora (formerly REDS) to be able to cope with what happened or the scars I still bear inside.that is not her job to worry about,that's mine and it is a burden I bear willingly.it is worth it to see her so happy now.
So they don't remember the way we do and it is a blessing later on.when I was where you are now though,it was awful,because the anorexia could twist anything good into bad.in illness they don't have accurate memory-an example is when we went to visit for my girls birthdays(they are two years and one day apart).we had a lovely time,giving equal attention to both and took a friend in to visit.by the next week the anorexia had completely changed the story,that we had only paid attention to our other d when we were there and that we had done nothing for an d at all.we showed photos but the anorexia would not back down back then.
That's a long example but I hope it helps.

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njh1919

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Reply with quote  #47 
Thankyou all for replying. It's helpful to know there is light at the end of the tunnel. Things seem so dark right now. I tell my D we love her & that even though she hates us, we are doing this to save her life. She says we are doing the opposite (pushing her to kill herself).
I've had stage 3 cancer and endured 6 months of chemotherapy but this is far worse!! I never imagined it would be this hard.
Sotired

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Reply with quote  #48 
When your d says things like you are pushing her to kill herself,if it was me I would do a risk assessment.if that means you ring the crisis team,then do so.when we fight through our own illnesses it's so different-we want to live,we want to move through the pain-but for someone with anorexia,the voice inside them tells them all the opposite.when my girl said things about wanting to die-a frequently said thing in the first two years-we would always ring the services available.
So we would ring marinoto to get help and then the crisis line if marinoto couldn't help.yes you are calling your ds bluff.thats completely fine to do that.its one way to stand up to anorexia.it shows your d that you mean business,that you will not be held hostage by fear,but will instead use your fear to get her the further help she requires.
A frequently said thing here is "don't be afraid of what the anorexia is afraid of".
Don't be afraid of doing things differently.dont be afraid to disagree with professionals.dont be afraid to ring the crisis line.dont be afraid of 'wasting someone's time'.we worry too much about that in NZ.the only thing that matters is saving your daughter.if that means bothering people,then so be it.
When someone is threatening suicide,then take preventative measures.lock up meds,empty her room of all but a bed,institute bed checks before bedtime to check for sharps -under mattresses,inside pillowcases and behind the curtains.sleep in the same room as your d.
When the fear is debilitating you to the point where you don't know how to keep her safe-then ring the crisis line.get help.dont be brave,be safe.
Hugs to you,this is so hard,

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njh1919

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Reply with quote  #49 
Thankyou Sotired. We have discussed it with the therapist and she thinks it is just the illness. But I think next time I might call someone. But do I call in front of my daughter to call her bluff? Is that what you're saying? As in, to see if they suggest I take her to hospital?
Sotired

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Reply with quote  #50 
I'm not sure what your therapist means by 'just the illness'.the thing is-she only has to try and succeed once.toothfairy is right,anorexia does indeed have the highest death rate and much of that is suicide.the stats on teen suicide in NZ are scary and nothing to f around with.as someone who has attended a non ed related teen suicide funeral,let me tell you-there is no 'just' anything when it comes to suicide threats.
Always take them seriously.yes,call in front of your d if you need to.when I was calling I had someone else sit with d whilst I rang the crisis line.it depends on the help you have available that moment she is threatening suicide.if you are by yourself,then she has to be with you while you call.if you have someone available then that person sits with them.my d would most likely not be with us today if I had not taken the threat seriously.
The therapist is doing the wrong thing by dismissing it.it is not attention seeking behaviour-and even if it was-it can still kill your child.always,always err on the side of caution.
If the team assessing your d feel the risk it s high they will take her to the unit,so have a bag packed for her in case.assessment is either done at a&e or home.she will be placed under the mental health act so you will need to sign paperwork.dont be afraid of that.although it has an initial time period mentionedyour d may not need to be kept at the unit that long.if she stops eating then she will go up to the ward to be NG tube fed under 24 hour watch.
Therapists can be too casual-it's not their child and they don't always know best.currently I have a friend being given this advice about her son-it drives me crazy as I know how bad depression can get.personally I think it's the dumbest advice ever and certainly designed to make our kids feel even worse about themselves.
Please take noones advice as gospel-trust yourself.you are her mum.you know when the risk is bad-and if you feel that you don't then ring the people who do,the crisis team.
Teen funerals are awful.i hope to never go to one again.

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Sotired42
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