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Hibiscus
 I haven't posted for a while. This is a bit of a convoluted story. 
 The background is that my 14 y/o daughter was diagnosed with anorexia Dec 17 aged 12. Took a long time to refeed but currently good weight for height. ( 163 cms 55/56 kgs). We are associated with CMHS but D would never engage in talking about her negative thoughts about her appearance/ anorexic thoughts I guess. Currently she eats what is given but not a scrap more and trying a bit of sneaky restricting lately).
Various meds have been tried: olanzapine, fluexatine- a disastrous reaction,back to olanzapine, quetiapine, then added lexapro- another disastrous reaction where it increased her anxiety to the point where she couldn't leave the house and made her stutter- which she is just now recovering from. 
Honestly I  have pretty much lost faith in meds and feel that olanzapine was possibly the best of the bunch, Seeing her psych tomorrow and plan to ask for no meds at all just so the poor kid can clean out and we can see where she is . 
Social anxiety has been becoming increasingly apparent. On reflection she possibly had this all along to a lesser degree, which I know can be common. Over Christmas she stopped participating in healthy outdoor activities, swimming, walking, bike riding and now does no exercise due to her anxiety I believe ( thinking she is too fat to be able to do this stuff).
In the 2nd half of last year she began having panic/anxiety around attending school and this has escalated to a worrying level. She is worried about what people think of her, says she is too fat to be herself, being alone at school, friends,people asking why she has been away, sports  uniform, doing sport.....She has been isolating herself from her peers, and compares herself to them and finds herself lacking. She was unhappy about my supporting her with lunch at school and we trialled backing off from this but she wasn't eating her lunch. When I said I would  have to start supporting her at lunch again this escalated the school avoidance. We tried some half days around this.
She has not managed to return to school this term, asks about home schooling/ distance education. I have started exploring this as it can take several weeks to get this started, but have not decided myself either way, just hedging my bets. The therapist has been "surprised" that she hasn't returned to school as she told her how important is was- DUH!! Therapist told me that the issues my D is scared of re school  needed to be resolved with the school. So I arranged a meeting. I contacted the therapist for a support letter for distance ed and she today ( well yesterday now as its 4 am) told me that the process is that she needs to meet with the school and return to school needs to be explored before distance education.
So i met with the school today/ yesterday to talk about some of the issues, they are happy to do whatever they can, we came up with some ideas and keen to meet with the therapist to develop a " return to school plan" .. ( Silent scream) Add another week for this. I stated that I will continue to explore distance ed due to time factors.
 My thoughts are that Distance education is not ideal and it will isolate my D further. It will also isolate me further as she will need to be supervised and cause additional ongoing financial stress as I cannot return to work. So I would rather she went back to school. But honestly I don't think she is capable of returning to school, it is too much. To me she seems very unwell and I believe anorexic thoughts have strengthened in recent times. It is all very well for them all to have their " return to school plan" and write their case notes but at the crux of it is that I don't think I will be able to get her out the door. Sometimes I get the impression that people think I don't try hard enough!!!
Have had ideas around developing an agreement with D around distance ed including outings, social and peer contact etc but do not know how ( if she agreed) I could make this happen in the face of her refusal/ fear. 
I need to decide this week so am gathering information and asking opinions and that includes you guys. My Husband says I am smarter than him so he will go with whatever I decide. My family says she really should go back to school, risk of further isolation at home. My D says she doesn't care about her education , friends or getting a job one day she just wants to stay at home. ( I know this comes from fear and panic). But I also know she also thinks I don't listen to her and disempowered ( refeeding etc).
On reading over this I can hear my stress, yes I am seeing someone for myself and will ask her opinion tomorrow. 
Thanks for listening.
 H


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scaredmom
First BIG HUG!!!


Hibiscus wrote:
 I haven't posted for a while. This is a bit of a convoluted story. 
 The background is that my 14 y/o daughter was diagnosed with anorexia Dec 17 aged 12. Took a long time to refeed but currently good weight for height. ( 163 cms 55/56 kgs). We are associated with CMHS but D would never engage in talking about her negative thoughts about her appearance/ anorexic thoughts I guess. Currently she eats what is given but not a scrap more and trying a bit of sneaky restricting lately).

OK do you really feel she is WR? And is she is at her historical weight for age?

Various meds have been tried: olanzapine, fluexatine- a disastrous reaction,back to olanzapine, quetiapine, then added lexapro- another disastrous reaction where it increased her anxiety to the point where she couldn't leave the house and made her stutter- which she is just now recovering from. 
Honestly I  have pretty much lost faith in meds and feel that olanzapine was possibly the best of the bunch, Seeing her psych tomorrow and plan to ask for no meds at all just so the poor kid can clean out and we can see where she is . 

Remember depending on meds, it may take a while to get out of the system and depending on the dose there may be side effects (undesirable) as weaning off them.
Good to discuss with the doc.

Social anxiety has been becoming increasingly apparent. On reflection she possibly had this all along to a lesser degree, which I know can be common. Over Christmas she stopped participating in healthy outdoor activities, swimming, walking, bike riding and now does no exercise due to her anxiety I believe ( thinking she is too fat to be able to do this stuff).

Yes very common to be co-morbid and something that needs addressing properly. 
In the 2nd half of last year she began having panic/anxiety around attending school and this has escalated to a worrying level. She is worried about what people think of her, says she is too fat to be herself, being alone at school, friends,people asking why she has been away, sports  uniform, doing sport.....She has been isolating herself from her peers, and compares herself to them and finds herself lacking. She was unhappy about my supporting her with lunch at school and we trialled backing off from this but she wasn't eating her lunch. When I said I would  have to start supporting her at lunch again this escalated the school avoidance. We tried some half days around this.

This anxiety is common for her age BUT it is seems more that normal. Is she eating lunch now? and if not you may need to go and supervise her. Or would a friend be trusted? I normally would not recommend that but if she feels less upset that you are not supervising could a friend that you trust help out sometimes and not all the time.

She has not managed to return to school this term, asks about home schooling/ distance education
I think trying to do some with in class too may be a balance. Can you do a bit of in school and on line learning?
I do think trying to get her to face her fears a bit has to happen. How do we overcome our fears if we do not face them, even if you need to do it slowly over time. Can you acknowledge her fears and also push her a bit?


. I have started exploring this as it can take several weeks to get this started, but have not decided myself either way, just hedging my bets. The therapist has been "surprised" that she hasn't returned to school as she told her how important is was- DUH!! Therapist told me that the issues my D is scared of re school  needed to be resolved with the school. So I arranged a meeting. I contacted the therapist for a support letter for distance ed and she today ( well yesterday now as its 4 am) told me that the process is that she needs to meet with the school and return to school needs to be explored before distance education.
So i met with the school today/ yesterday to talk about some of the issues, they are happy to do whatever they can, we came up with some ideas and keen to meet with the therapist to develop a " return to school plan" .. ( Silent scream) Add another week for this. I stated that I will continue to explore distance ed due to time factors.

I think that is fair and well thought out.
 My thoughts are that Distance education is not ideal and it will isolate my D further. It will also isolate me further as she will need to be supervised and cause additional ongoing financial stress as I cannot return to work. So I would rather she went back to school. But honestly I don't think she is capable of returning to school, it is too much.

To me she seems very unwell and I believe anorexic thoughts have strengthened in recent times. It is all very well for them all to have their " return to school plan" and write their case notes but at the crux of it is that I don't think I will be able to get her out the door.
Can you go to school with her and sit in the parking lot first, then into the school when no kids are in the halls, then into the office. If it takes one whole week or more to do one thing at a time, baby baby steps moving her closer to the school or even outside your own door of your house. What can she do a bit of? Coach her on the small steps out of the house first, then 10 steps from the house. Will she drive in the car? Go anywhere at all outside the house? 
Sometimes I get the impression that people think I don't try hard enough!!!

Well you know we know how hard you are trying! We really know!

Have had ideas around developing an agreement with D around distance ed including outings, social and peer contact etc but do not know how ( if she agreed) I could make this happen in the face of her refusal/ fear. 

Slow steps, first outside the door, then a few feet away from the door. Until you can get her away from the house, yes online schooling may be best while you work open moving her outside. Well she may not agree and you may need to do it anyway you can. Her default may be always to agree with you now, but then when it is time for an outing etc.. she may flat out refuse and you need to do what you plan. To get through you have to go through.
I need to decide this week so am gathering information and asking opinions and that includes you guys. My Husband says I am smarter than him so he will go with whatever I decide. My family says she really should go back to school, risk of further isolation at home. My D says she doesn't care about her education , friends or getting a job one day she just wants to stay at home. ( I know this comes from fear and panic). But I also know she also thinks I don't listen to her and disempowered ( refeeding etc).

It feels so hard right now. I can sense that. What one thing can you work on right now? Is it getting her outside? Then do that. She is only 14 and school can wait if she cannot go right now. Her other issues take precedence as well as her eating properly too.Getting them out and feeding are similar. Exposure exposure exposure. Simple things you think she and you can manage first. Take the "first  bite" by doing something tiny, gain the confidence then add again. Laddering approach. 

On reading over this I can hear my stress, yes I am seeing someone for myself and will ask her opinion tomorrow. 

I am glad for that. 
Thanks for listening.
Anytime!
 H


When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Ellesmum
It’s really tough isn’t it? You’ve done a fantastic job with your daughter and it sounds like the meds don’t help her assuming there’s been plenty of time for them to kick in.  My thoughts are she needs a bit more weight to push on through this, it must be miserable for them in a heavier body but plagued by ED.  

My d was out of school April 2018 until December and she’s only part time now and rarely manages a full week yet. It’s very tricky financially etc but from what you’ve said she isn’t well enough.  Can you plan to keep her home the next few weeks while you ramp up her food, let her get over any effects of coming off meds, rest and relax.  
It might help to try to organise light social things like a cousin popping in for tea, I have been astonished at how much any activity affects my d, it exhausts her and she needs to eat huge amounts to make up so it’s probably best yours isn’t doing exercise for a while.  

Im sure others will have better advice but those are my initial thoughts, it’s still quite early days. Someone on a FB support group who I’m certain is here said something like every missed calorie over the period of restriction needs to be eaten for proper recovery which is something I keep in mind (she put it better than me)  
Ellesmum
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deenl
Hi Hibiscus,

Obviously all our kids are different so I can only tell you how it went with my son.

Pre ED our son has never been the life and soul of the party but always had a small group of good friends. There were never any problems within the group, occassional difficult moments with clasmates, usually easily resolved and he was uncomfortable and somewhat arkward in new social situations. If we let him hang back a bit so he had time to get the lay of the land as it were, he would join the group in his own time. Any attempts to speed this up or to force him to be immediately social would backfire and make the whole situation more difficult. In summary, a pretty typical introvert with a little social discomfort.

Our son got really ill during the summer holidays and did not return to school full time for 2 years. He stayed home with me. Luckily this was practically and financially possible for our family. In the first year he was too unwell to work at all, honestly his brain just did not compute. He couldn't even read although he has read an hour or two every day of his life (well since he learned to read anyway😄) During that period we gave him an occupational therapy budget. We have always described ED as an illness even before we had a diagnosis. He would not accept gifts or more money than his brothers but we told him that all people who are ill need occupation and this was his budget. He did calm and soothing hobbies like origami, oil painting and leather work. I did invite one very kind and tolerant friend around occassionally just to keep some social aspect going.

During the second year, his natural drive to learn re-ignited and he did maths, physics and other sciences on the free program Khan Academy. He still had access to Rosetta Stone from school so did German too. He worked at his own pace but he is a natural student and enjoyed it. He continued his hobbies alongside. We were also busy laddering outings, usually visits to hobby shops, films and other places that interested him. Towards the end of the second year, I could see that he was getting bored so we started gradually going to school for an hour here and there. There were meetings of all sorts but actually his mentor and I sorted almost everything out between ourselves. We were absolutely blessed with his mentor. He was the same guy that our son had the year before he became sick. There were only a handful of people that I would trust 100% with my son at that time and he was one of them. Just a very intuitive and sensitive but practical guy. Anyway, we built up the hours over the last few months of the year but never more than a half day. He went back full time after the summer holidays. Because of the way their school is structured, he joined his old classmates and easily caught up on missed work. His mentor said that he was better socially after he went back than before he went.

We took this approach because I put adequate and sufficent nutrition as an absolute priority and our son could not eat outside our home or with other people until we were about half way into the second year of illness. Like you, there was no way I could get him out of the house because when undernourished he was first suicidal, then depressed, then terrified, then extremely anxious, then less anxious. I also felt that he needed a secure bubble to recover in and when he was in a better place he would naturally take his place in the world again. In our case, the two years at home have not harmed him socially or educationally even though the psychiatrist worried about that. At that stage, we had had much poor care so I was very comfortable trusting my and my husband's insticts. We did know our son best.

I am sure that other parents will be along with their stories. It is different for everyone. I encourage you to trust your instincts and take your own and your family's circumstances into account. When making decisions, I found that after a few days floating around in my mind the way forward would just settle and I would know what to do.

Best of luck,
D
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, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • 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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scaredmom
Hi again, I will link some info later but have seen that  CBT can be used to help with school refusal/anxiety.Sometimes in combination with meds. 

Is that something you can discuss with psychiatrist as well.
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Foodsupport_AUS
This social anxiety avoidance unfortunately is another one of those things that can pop up. My D too, found this increasingly difficult and as with yours, the higher her weight the worse it got. At the same time 100% nutrition 100% of the time is essential for her brain to heal. 

I also looked at the home schooling option, and like you felt it really just created more issues, and to some degree gave into the anxiety. Initially I did go and meet my D at school, and she was also keen to avoid the coming out of school to meet a parent. Ultimately I negotiated with the school for D to eat at the nurses office in a spare room, she was permitted to take one or two friends. Every one knew she was to eat all food (friends included) and I delivered the food to the nurse, D just had to arrive, eat and leave. Lunch box checked, room (very spartan) checked to make sure all was in. 

I also explored another option which may work for you. There are a number of schools around for kids who are troubled with mental health issues. You will need to explore your area. They are sometimes private or public. They have very small class sizes and have a very high focus on pastoral care and getting back on track over academics. There is often a focus on kids who are school refusers for all sorts of reasons. This may be worth looking at. My D when she heard this is where I was considering sending her, decided that she preferred her old school over the new one.

It sometimes takes some really creative solutions to get around it.
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.
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scaredmom
Here are few of those links I found (some may be of interest to you others may not)
https://www.psychologytoday.com/ca/blog/worry-free-kids/201710/how-help-child-overcome-school-refusal




https://www.childtrends.org/programs/cognitive-behavioral-therapy-of-school-refusing-children
https://www.ncbi.nlm.nih.gov/pubmed/27485100
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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tina72
Hi Hibiscus,
my d was also very worried about going back to school after 4 months not at school at all.
Here we have no option of home schooling but I am sure if that was an option my d would have prefered that for all her life 🙂 she never went to school relaxed since elementary school (there she had a great time). It was mostly due to being gifted and speak another dictionary than the others and having different interests than her peers.
But although she would have prefered to have home schooling I think it was important to go back to school. She needed to have social contacts and she needed to set a sign against ED because it was mostly ED thoughts not to go to school. We did it like fear food by exposition and in a laddering process.
Body image was bad when she went back to school so we decided no PE for the rest of the year.
We started with a few hours in the morning, took her back for lunch. No tests for the first months.
Then after 2 weeks we brought her back after lunch so she could have some afternoon lessons too.
Before she went the first time we arranged to meet some girls that were helpful and knew about ED. That was possible here as my d was older than yours and girls at age 17/18 are more adult with that. I am not sure if I would have told them at the age of your d. But maybe it is an idea to meet some former friends before school starts.
I think it is worth a try. Start with a very reduced time table and increase it slowly. If it does not work you could cut it back again.
But remember that this fear of school is irrational just like the fear of cheese. You can only help her by exposition so her brain learns that school is not dangerous.
Keep feeding. There is light at the end of the tunnel.
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Hibiscus
Hi guys and thanks for your replies.( Its 4 am again lol)
 scaredmum, thanks for the hug,I actually really needed that one. I had a look at the videos- preferring the first one to the 2nd one. I will reply to more of your suggestions in a bit. 
ellesmum. I like the idea of inviting people over, she has no local cousins but we have family friends and their D is one of our Ds friends.
deenl, our D sounds similar in how you describe your son socially, you did a great job with him. 
FoodupportAus, I will ask around about the schools, although we are in a bit of a regional area so fall through the gaps in terms of some resources.
Tina, thanks. Like you and scaredmum are right about laddering exposure, I like your cheese example. 
(Hope I got everyone there)

Yes I do think she is good for weight / height and she currently eats lunch( as she is home) and once I realised she wasn't eating at school, my plan to supervise lunches triggered an escalation of school avoidance. It has been suggested that I  " back off" regards this by therapists and although I suggested to D that she could have snack at school and lunch after school( knowing snack would probably be binned and not really happy about this) to try to get her back to school it made no difference to school attendance. 
I managed to get her out for a drive one day ( before I started this post) but has been too scared since and she had to go to mums place while I went to see my T, although she had  anxiety about getting out of the car at mums place it was alright after that. She did not attend her therapist appt that same day ( anxiety attack) and the psychiatrist appt was cancelled so I have rescheduled for monday. I have tried daily for a drive resulting in panic and today she was so triggered she sat in a corner of her room on the floor for over half an hour (I had to leave her as my presence seemed to make it worse) and she wouldn't come into the back yard with me. She is angry with me (or just scared or both) and does not seem willing to work cooperatively with me on trying to overcome this and pushes me away with hostility or just through non response. There is a long planned outing on Saturday so I have asked my sister to pick her up for this. hoping that this will help and she wont want to show too much of her anxiety in front of her. As she manages going to my mums I am sending her there again tomorrow morning as I have something on and just to get her out of the house again.  Honestly I remain at a bit of a loss as to the way forward as this is so tricky
 Her stuttering seems to have decreased so hopefully the meds are nearly out of her system. I do wonder if she needs something just to get out of the house.....honestly I think I need outside help to encourage her to try to beat this ( and part of me is disappointed in myself that I cant do this), but again we seem to be in a bit of a black hole for expertise......
my apologies I am not very positive in the wee hours......

Anyway, so there we are.....
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scaredmom
You are doing a great job and the best you can. It is not a failure on your part that you cannot get her out and about and feeling better. 
Would you consider getting specific professional support for this particular issue?
we cannot be everything to our kids in this ED world.  The way I look at it, if you need someone with the specialised skills no matter what that is, a lawyer, plumber, electrician. That is what you need. I hope you get what you need to help her get through this stage.
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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scaredmom
Oh I just want to say, I hope you are up at 4 am as you wake up early as you go to bed early and not because you can’t sleep.🤗
And if you are having trouble sleeping please reach out for help and or meds. I want you to be rested and cared for too.
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Hibiscus
Thanks scaredmum,
unfortunately the 4 am thing is me waking up and my brain kicking in, it’s not every night. I am not a fan of meds. Yes we need expertise and on the ground help. Not sure where to find it just yet or how to get my D to accept it. She is so angry with me. Anyway so far plan for today is for her to go to my mums place while I go to ukulele lesson( attempt at self care and having a life besides the house) and I’m going to take my time. 
🌺
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atdt31_US
A.  Stuttering -- sounds like you think this was caused by medication that spiked anxiety?  That is frightening.  My d also recently started stuttering .... to the point of not being able to communicate for a few days.  It just began April 30 and I was not convinced it was "just" due to anxiety.Took her to a speech pathologist and it got rapidly better (after one one-hour appointment).  Clearly it is anxiety (maybe even conversion/factitious in nature) but I NEEDED to be sure it did not stick around so chanced a speech path would help not hurt (feed the attention-getting).  Today I picked her up from a half day of school (the most she has managed since Easter) and she had literally zero stutter.  Went back to speech path for second appt and no stutter there.  No stutter on quick shopping trip on way home.  No stutter in front of her twin for an hour or so.  Then started talking with a very slow, deliberate affect as tho needing to do that to not stutter, with some mild stuttering thrown in .... all for parents and twin not really around.  So very hard to untangle all this kid throws at us.  Anyway ... I was in the full appt for the first speech path appt when stuttering had been debilitating and seemingly involuntary.  The speech path did the following:
1.  very compassionate and pointed out not only kid to have this happen
2.  explained it in context of anxiety and throat can sort of seize
3.  did assessment that I am sure drove the next steps, so ymmv, but, the next things, all in that first appt were:
4.  Showed her, by drawing jagged up and down lines like a mountain range that her stutter was abrupt and had lots of high and low points ... then drew a gently rolling hill the thing and said no speech should be flat, but people usually have more like the rolling hills or ocean waves.  Encouraged her to run her finger along the gentle waves as she spoke and invited her to make it a touch lyrical (not singing, just off normal delivery).  This was surprisingly effective .. could hear difference right away .. not fluid, but shows d (and ME!) this could be managed.
5.  Had her read from a book.  Told her for first paragraph to turn the stutter "on" as hight as it could go .. to make it as bad as possible.  Then, after a few sentences, told her to turn the stutter switch to "off" and to think of the gentle ocean waves and read more sentences from the book.  Was able to read so much better.  I am talking 1/2 hour.  
6.  Gave her a breathing app (breathe in, hold it, breathe slowly out).
7.  Homework was to do the breathing app twice per day (about 5 minutes each).  Then to read to the cats by turning the stutter switch ON then OFF and to have the ocean wave graph nearby.

No clue if any of that is useful, but it, or time, or attention, or something, has snapped my d out of it for long periods of time and it now seems quite behavioral ... not suggesting my d or your d is faking it, just that I am now convinced that it is in fact rooted in anxiety and can be managed and hopefully be a blip that once gone stays gone.  My best guess is it will come and go with my d who will use it (intentionally or not) to let us know when she is struggling .... but I hope she chooses another way (like to say "I am struggling.).
 
B.  School refusal:  Also new for us.  Missed quite a few days due to three illnesses (very real) back to back to back … then just built up the return an had a terrible cough she thought was disruptive/called attention to her, etc.  I have no understanding of how you go from a functional student to a kid who curls up in the fetal position, hyperventilating, stammering, complaining of stabbing pain, etc …at the thought of school or homework.  Anxiety is a BEAST.  In our case I think it is along side not due to the eating issues.  Curiously, she is eating large amounts through this (gave her a mini pizza for lunch yesterday and 1/2 way through she asked can she have another one and devoured both).  Keep in mind, my d is not and has never been RAN … but her intake from table food is way up during this anxiety/panic/whatever phase of the last two weeks.  (I do not think it is somehow anxiety spiked by having eaten more … I think she has severe anxiety and also has some challenges around intuitively eating enough to thrive).  We have her back in weekly therapy for anxiety and that professional has had us approach the school refusal by making a reward chart …. D sets out the hours per day she will be at school (which was zero lots of days), and a small reward she wants to earn (a harness for her cat so she can take her outside; a bike lesson so she can learn to ride and have some independence this summer).  The reward is nominal (we’d do both of those regardless, and I suspect d knows that).  She seems to want a goal to attain .. so, for example, she panicked (horror movie type scene for hours) and could not go to school Monday but then went for an hour Tuesday and 3.5 hours today.  (Wed she was to go for two hours but she fell asleep and I could not rouse her so she gets a pass on that one).  Tomorrow she needs to go until after lunch.  If she gets out the door on time tomorrow so her twin is not late, and lasts until after lunch, she will have earned a bike lesson this weekend, and the harness.  
 
I was dubious this would work.  Her panic was extreme.  Even her therapist said we might not get her back this year  and that usually they are willing to take a kid in pajamas, physically forcing them to school to confront the fear but that my d made her fearful the normal protocols could backfire and cause damage (again, they are ruling out some things other than just GAD)…but a super slow, compassionate, incremental, reward-based approach has worked somewhat.  Some days/weeks it has been a step forward and three or four backward.  But progress overall and I am actually guardedly hopeful for the first time in about 10 days).
 
Good luck in continuing to navigate all of this.  I will admit, your posts have given me great pause in whether to start the Prozac that was prescribed.  D had been refusing and I had some questions for the professionals… but as of yesterday I was willing to start it.  Then today my d went all day until exhausted in the evening and just with parents before stuttering again; and your reminders that the side effects can be problematic (as opposed to the drug just not helping).  
 
Anyway, not looking to hijack your thread … just sharing that we are walking some of the same paths right now and thought I’d share the approaches we have been guided to attempt.  
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth. FWIW ED-D is a fraternal twin and we have no other kids.
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atdt31_US
Hibiscus wrote:
 
I need to decide this week so am gathering information and asking opinions and that includes you guys. My Husband says I am smarter than him so he will go with whatever I decide. My family says she really should go back to school, risk of further isolation at home. My D says she doesn't care about her education , friends or getting a job one day she just wants to stay at home. ( I know this comes from fear and panic). But I also know she also thinks I don't listen to her and disempowered ( refeeding etc).
On reading over this I can hear my stress, yes I am seeing someone for myself and will ask her opinion tomorrow. 
Thanks for listening.
 H




If the type of school you have had her in up to now has always been a given, that is, you did not seriously consider other options when she became school age, I would stick with it and defeat the anxiety through exposure and therapy (and foods and meds if they can convince you they have one they have reason will work better for her and cause no harm).  Have you considered doing a Genesight or similar test ... swab the cheek, they analyze it, and tell you a listing of how YOUR d will process various drugs.  It is often used when several drugs have proven unhelpful ... to guide whether and what the next attempt should be.  Sounds like it might be useful in a case like your d's where multiple attempts (from different families) have failed not just in terms of not working, but being metabolized in a way that caused adverse effects.  
Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006. UPDATE:  April 2018 diagnosed ARFID, based solely on weight being less than 75% of Ideal Body Weight.  Mildly picky, but mostly the problem is a volume/early satiety issue, along with abdominal discomfort and chronic constipation, all present since birth. FWIW ED-D is a fraternal twin and we have no other kids.
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Kali
Hi Hibiscus,

Sorry you are up at 4 in the morning fretting. It is very difficult to decide the best path forward sometimes, isn't it!
My daughter was out of school for 9 months when she was very ill and it really did not matter in the long run. 
Some parents have been able to homeschool for awhile, and others have decided to take a graduated approach where the child starts attending school part time and then increases gradually. Some families have had their kids out of school until they were well enough to go back.

As far as her anxiety goes, have you tried taking her to a restorative yoga class? If there is something like that available near you it might be worth a try. It is not exercise; it is laying on pillows while someone leads a guided meditation. In some classes I've been to the meditation helps to push thoughts away which might be helpful for your daughter to try. You might also enjoy it as well!

We also tried meds as I was willing to throw everything and the kitchen sink at the eating disorder to see which things might stick. They can help take the edge off anxiety...I was not a big proponent of meds either but I do believe that they did ease the anxiety and depression a little. Certainly not a cure but made things just a little easier.

Thinking of you as you make these tough decisions.

Kali

Food=Love
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tina72
I can also imagine that part of her school fear is that there will be this lunch problem and she will have to fight AN there alone and it is easier to tell AN that she has to eat lunch at home because you can be blamed for it. I can imagine that AN blames her after having lunch at school and that she cannot stand that alone at the moment.
Keep feeding. There is light at the end of the tunnel.
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scaredmom
Hibiscus,
is the issue fear of leaving the house in general like agoraphobia? 
That would need very specialized psychological intervention and soon so that it does not stick.I do hope the team you have including the psychiatrist tackle this.
Sending a bag of good wishes!
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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Elibean1
Hi Hibiscus,

our D (12) also struggled with school anxiety - in fact, it was a change of schools in part that triggered her ED as she couldn’t eat before it or there. 

Shes diagnosed Arfid but I think it had started to morph to AN, we’ve done modified version of FBT and she had weekly cbt to work on anxiety generally.

For us, gradual baby steps and lots of connection between us and the school has built her resilience and her sense of safety - she’s much better, though can still have huge panics triggered by tests, friendship wobbles, after holiday breaks, or when very tired. Telling a few good friends about her ED helped: she asked me to ask the school nurse to explain to them, then started telling people herself. Socially, she’s now much better - but she can’t face sport because she’s ‘too fat to wear gym kit’. Truth is, she has always disliked sport (physical issues as small child), is scared of it and thinks she’s very bad at it....but it all comes out as ED thoughts. 

Generally, her focus on ‘I’m too fat/disgusting/ugly’ spikes when she’s upset or anxious about other things - tackling the real issues results in her ‘distorted issues’ diminishing immediately (till next time!).

i know how exhaustingly hard that balance between fear exposure, keeping some social contact and not overwhelming is - no right/wrong answers!  We’re being discharged from ED services as her eating is good now, but I think my D still needs some sort of CBT/DBT for on going anxieties and body image stuff.

sending stamina and luck xxx
Elibean
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Hibiscus
Hi guys,
 thank you for your replies, sorry I have been missing in action. Some really good ideas there. 
Stuttering seems to have eased and yes I do think the meds spiked her anxiety to such a level that stuttering occurred. However, atdt31, I just wanted to say that a lot of people here have found that meds helped their kids so please don't let our experience stop this for you child if you think this will help. Your speech therapist sound amazing. 
So she was unable to go out with family on the weekend, had a massive anxiety attack and wouldn't let my sister in her room to talk to her and has only managed to go to my mothers place so far. The psychiatrist believes ( based on my description ) that she has generalised anxiety disorder and has prescribed another alternative medication, which I am thinking about. I do believe that she needs some help, but not in a hurry to dive in there.
I am starting to explore getting therapists to see her at home( not sure if this is possible as yet) including " tapping" and although this may be 'giving in' a little it has got to be better than nothing. Current thoughts based on talk here and an amazing woman I spoke to on an adolescent mental health help line is to start to develop a contract with my D, setting out achievable goals and requiring her to push herself a little with the aim of success for her and hopefully regaining some confidence. 
thinking something along the lines of... going to nannas, going to auntys( both safe), going for a drive etc and gradually building up to more time out of the house. 
 Psychiatrist ( foolishly in my opinion) said due to carer stress etc I cant be her therapist as well and I pointed out to him that it seems I have little choice and carer stress has been around for 1.5 years so whats new. I am frustrated with CAMHS. Help line lady was more helpful and more supportive than they have been and I felt heard. As we dont have private health, we are kind of stuck with CAMHS.
There is another " return to school " meeting planned with the CAMHS and school planned for early next week, seems like a waste of time but at least they cant blame me for not cooperating. 
So at a bit of a standstill but planning a way forward.
H xx
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Hibiscus
of course the problem with this is that she doesn't want to get better. She doesn't want to do anything just stay in her room. She won't talk about her concerns or partake in ideas of working towards getting better. 
I said to her today that her dad and I were worrying about her maybe going to have to go to hospital if she cant try to get better ( exploring private health for her- as would not consider public psych ward- 2 month waiting period). I wasn't threatening her just despairing I guess and trying to give her a sense of how serious we think this is. I don't know.....
My only other alternative is carrot and stick- or punishment really...... no drive, no effort etc etc, means no computer or iphone... however i frame it sounds like punishment...... and will make her angry( angrier) so therefore hardly therapeutic...... 
 but nothing is changing here.....
Struggling....... .....
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Foodsupport_AUS
You are in a really difficult bind.

[QUOTEPsychiatrist ( foolishly in my opinion) said due to carer stress etc I cant be her therapist as well and I pointed out to him that it seems I have little choice and carer stress has been around for 1.5 years so whats new. I am frustrated with CAMHS. Help line lady was more helpful and more supportive than they have been and I felt heard. As we dont have private health, we are kind of stuck with CAMHS.]

The problem with saying you can't be her therapist, is they are not really helping her either. You are doing the best you can in very difficult circumstances. You don't need Private Health Insurance to see a psychiatrist/psychologist privately in Australia. The insurance will help you to a small degree for psychologist and not at all for the psychiatrist. My D's psychiatrist costs an arm and a leg, but the good news is that once you reach the Medicare safety net the cost goes down dramatically as Medicare pays 90% of the bill. It resets each first of April though. 

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of course the problem with this is that she doesn't want to get better. She doesn't want to do anything just stay in her room. She won't talk about her concerns or partake in ideas of working towards getting better. 
I said to her today that her dad and I were worrying about her maybe going to have to go to hospital if she cant try to get better ( exploring private health for her- as would not consider public psych ward- 2 month waiting period). I wasn't threatening her just despairing I guess and trying to give her a sense of how serious we think this is. I don't know.....


Taking out insurance now there would be a 12 month waiting period. I wonder if you would be best to try to find someone who is a better fit for your D as an outpatient. It may seem like carrot or stick but I wonder if it would be best to put a blanket ban on isolating herself in her room at this stage. It sounds as though there is both anxiety and depression present. Isolating herself may be making her feel even worse. Can you get her to do any crafts at home, pet care, any activities? Perhaps is she is doing school refusal she could take up the house work ?😜
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.
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tina72
My d also did much of the housework at that time. I did not really ask her, I just said that needs to be done and that she must do it because I need her help. That made her feel needed and worth something. I agree with Foodsupport, I would simply tell her she is not allowed to be in her room 24/7. This isolation is a party for ED thoughts.

I really wait for the day parents ONLY need to fight that illness and not the system and camhs and bad advice from therapists any more...

"thinking something along the lines of... going to nannas, going to auntys( both safe), going for a drive etc and gradually building up to more time out of the house"
That sounds like a good strategy. If you do that in a laddering approach she will get use to be at safe places like safe food and you can slowly add some fear places like fear food. We tackled a lot of anxiety here with laddering work on it like with fear food. Exposition helps with anxiety also.
Keep feeding. There is light at the end of the tunnel.
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Mamaroo
I agree with the others, try and get her out of the house under any pretext. I told my d I needed help at the shops (not grocery shopping, of course). When we went to our weekly appointments at the hospital I would say: "lets go to the park to eat your lunch", or "lets go to the cat cafe". I think it was Tina who took her d to furniture stores to 'redecorate' the house - please give more details, Tina. You can go to Ikea, my girls love walking around the rooms they furnished.
Sending you lots of hugs 🤗🤗🤗🤗
D became obsessed with exercise at age 9 and started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. View my recipes on my YouTube channel: https://www.youtube.com/channel/UCKLW6A6sDO3ZDq8npNm8_ww
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tina72
I took her to furniture stores to plan renovations and buying new coach, new kitchen, new bedroom furniture (we never did that in reality, it was juts nice time out and nothing food related). We went to do it yourself stores and checked wallpaper, wall colour, floors. We went to garden center to check garden furniture, buy plants for the garden. I think it was old rabbit Torie here that have me that ideas.
I also ordered a lot of catalogues for holidays to plan we never did up to now but it kept her busy to check where to go and to compare hotels there.
We went to museums and art galleries. There are a lot of places to go where you do not need to eat something...🙂
Keep feeding. There is light at the end of the tunnel.
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debra18
My daughter's class had a party and she didn't want to go. I told her if she didn't want to go she would have to go with me and younger siblings to the park and watch them in the park. She could not stay home . In the end she chose to go to the party instead of being bored in the park. Can you make it unpleasant to stay home so she will want to go out? Loud classical music, an annoying friend or grandmother coming every day? 
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