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toothfairy

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Reply with quote  #26 
Again I urge you to watch the video above with Dr Peebles, You will then understand that This statement is wrong that I quote below , and this is not the case.
Your Daughter needs to be brought back to her original growth curve, not just some  bmi that says healthy weight on a standard world health organisation graph.
That is not appropriate for treating anorexia, Dr Peebles is a world renouned ED clinician and researcher...I strongly advise you to listen to the video..
She is likely technically much more than 2kg underweight "for her"...



Your quote
BTW without minimising the weight loss AT ALL, purely stating this for context. my lovely dd was previously on the upper end of a healthy weight percentile wise, and had gorgeous voluptuous curves. she is now in the underweight category. i am very aware that with someone who is heavier at the start, it may take longer for the dangers of an ED to be properly appreciated. i just wanted to clarify that she is technically about 2 kg underweight.

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Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) , Then FBT at home since.and making progress every day. He is now in good recovery, and Living life to the full like a normal teen. We are not completely out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT. Hoping to get him into full recovery and remission one day at a time.
EC_Mom

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Reply with quote  #27 
Great advice for you, noo. Let me add my voice to the chorus telling you that your instincts are right and this needs to be taken on 100%, whatever the clinicians say.

She needs YOU to require her to eat and make sure she does, because no one else really gets that ED won't allow her to otherwise. It's not her fault, she doesn't have the ability to see her own problem because her brain is compromised.

This does mean supervising lunch, snacks, everything, and she is not "lying" so much as being held hostage if she tells you she ate. ED won't let her tell the truth.

Absolute numbers aren't important, she has lost a lot of weight and has ED behaviors. Colleen on here had a d who was near death at BMI 22 or so. Forget BMI, it's not a real measure of anything, especially for teens. 

There is SO much that is counterintuitive about this illness. You have done a great job finding us here and learning what needs doing. For now what needs doing is supervised feeding. ED will get angry, your job is to stay calm, fake confidence, and distract your d to minimize distress (of which there will be plenty). Also, we had terrible days on doctor visit days. Again, as long as eating is being supervised and more calories being taken in, you are doing what most needs doing now.
Torie

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Reply with quote  #28 
Maybe a little more information about my family's journey would be of value:

1)  My d was always at a "healthy weight" - even at her lowest, if you go by the standard BMI charts.  (She was never over or under the "healthy weight" range.)
2) She always ate a good dinner with us with no sign of trouble. (Well, other than the nights she pretended she had already eaten.)
3) Like many or even most here, we received bad advice from the professionals - the "help" we received from her pediatrician was worse than no help at all.  (DON'T WAIT FOR THEIR HELP! And don't count on them to know what they're talking about.)
4) What saved my d was what I learned here on the forum - I had to make sure my d ate 3 meals and several snacks every. single. day. 
5) I learned that I had to personally watch her eat - watching, like a hawk, I mean because they turn into magicians at making food disappear in the blink of an eye.  My h learned to watch properly, too, but no one else was up to the task so we had to supervise ALL meals and snacks.
6) I don't mean to scare you, but I have always believed that if I had waited one more month or perhaps even one more week to start re-feeding, my d would have had to leave home for treatment.  But luckily, she was able to recover at home.

You're getting great advice here, as did I.  It probably saved my d's life.  xx

-Torie

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Torie

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Reply with quote  #29 
Quote:
Originally Posted by noo72
 
  1. how can i supervise lunch and snacks when she is at school and wants to go out at weekends?? 
  2. should i continue to allow refusal to eat sweet snacks (most snacks between meals are limited to fruit, oatcakes, nuts and rice cakes) or should i dictate what the snacks are going to be
  3. at what point do i get the school to get more involved with meals- they currently check that she has 'a lunch' the problem is that it does not contain enough calories as she will only have the soup and one a bite or two of something with it
  4. what can i say to my daughter about her fears about fertility? she has become obsessed with this issue and her mood yesterday and today has been very low because of it
  5. how honest should i be about discussing health consequences and mortality risks etc. there is part of me that wants to give my dd a shake and scream at her doesn't she know what she is doing (just in case there is a rational part of her brain left) but i am also worried about her low mood and anxiety linked to health (pre ED)
  6. i am trying to deal with this well, but my dd can see that i am worried sick and i know that she feels guilty about this. any tips on how to keep myself grounded and not respond with heightened emotions? (i manage this most of the time, but sometimes the cracks start to show)
1. This question has an easier part and a harder part.  The easier part is that when she wants to go out with friends, she needs to finish her meal before she goes.  (Every bite, sip, crumb, and smear.)  The harder part is that you may need to go to her school for lunch if at all possible.  Some here have had their d meet them in the car in the parking lot so they could have lunch while going for a little drive.  Sucks, of course, but much better than the alternative which is that she will likely need to be pulled from school altogether because if they're not getting better, they're probably getting worse.  (A lucky few have found competent lunch supervisors in their school.) 

2. It is up to you whether or not to require her to eat sweets at this time.  You DO need to make sure they include enough calories, ideally with a good mix of carbs, fats, and protein at each meal and snack.

3. A few brief conversations with my d's school were all it took to convince me that there was no way they were going to properly supervise anyone's lunch.  But it would still be prudent to meet with the principal to let him/her know about your d's situation and ask what kinds of support they might be able to offer.

4. Acknowledge her concern and then change the subject.  "It sounds like you are really worried about that.  We're going to do everything we can to make sure you can have a normal life.  How do you like my new socks?" type of thing.

5. It took me a while to grasp this, but really, there's nothing to be gained by trying to have a rational conversation with an AN sufferer about anything to do with AN, food, calories, weight, shape, etc.  AN turned everything on its head including my normal parenting style which was to discuss pretty much everything with my d in a democratic kind of way.  They. aren't. rational. about. these. things. right. now.  Her brain just isn't working right.

6. I think what helped me the most was realizing that however hard this was for me, and however traumatic - it was far, FAR worse for my poor d.  I can't remember who it is, but someone here has a tag line about AN teaching them patience and compassion.  So true.

Keep asking questions.  That's why we're here. xx

-Torie

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Torie

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Reply with quote  #30 
Quote:
Originally Posted by noo72
thanks again, kind people. i have looked at the 'puzzling symptoms' document and will follow the other links. there is a bit of me that is finding ED info to have quite a depressive effect on me and so i think i might be resting reading it all. anyone else ever felt like that? not in anyway being ungrateful for the info, but part of me is shying away form it, for some reason.


Thank you for letting us know.  The information overload can be overwhelming, that's for sure - like trying to get a sip of water from a fire hose.

But.

It is crucial that someone close to your d knows this stuff.  Frankly, I'm afraid her treatment team likely does not. Here's why:

Your d has lost 30 pounds, and they don't seem to be pulling out the stops to figure out why.  A 14/15 year old should be gaining weight and most certainly not losing like that.  We're not doctors here, and we can't diagnose, but we CAN tell you this weight loss would be a SERIOUS concern to the doctors we know and trust.  These are doctors like the one ToothFairy mentioned - Dr. Peebles at CHOP (Children's Hospital of Philadelphia - one of the top children's hospitals in the US and one of the premier ED treatment providers in the world).  

When I realized we needed expert advice, I made an appointment for my d with Dr. Peebles. but we couldn't see her for a few weeks (our fault - not hers).  While waiting to see her, she required weekly:

Weight check
Orthostatic pulse and blood pressure
And she required my d to get an EKG.

As I said before, my d was never "underweight," and she had already regained more than half of the 20 pounds she had lost.  But still, close monitoring was necessary because when the body doesn't receive enough calories from food, it has to scavenge nutrients from fat reserves, muscles, and bones.  That includes the heart (muscle) and brain (largely fat) that literally shrink and need to rebuild themselves.

Is your d's team monitoring orthostatic pulse and blood pressure regularly?  It's simple (and cheap), and if she even might have AN, they should be keeping an eye on this.

Am I understanding correctly that they have not yet decided whether or not she is suffering from anorexia?  If so, that is completely unacceptable.  If she has AN, she needs help.  Yesterday.  And if she does not have AN, they should be figuring out why she is now underweight and not having periods.

Whether your d has anorexia or not, she needs to gain weight.  The professionals you entrust her to should be making darn sure that is happening.  

Sorry to keep posting so many times on your thread.  Here you just said that reading so much about AN is causing your trouble, and here I go writing you a book.  I tried to edit it down as best I could, but I didn't do too well.  xx

-Torie

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

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Reply with quote  #31 
Hi, so sorry to hear about your D, but glad you found us. Just some quick comments about your previous post:

"BTW without minimising the weight loss AT ALL, purely stating this for context. my lovely dd was previously on the upper end of a healthy weight percentile wise, and had gorgeous voluptuous curves. she is now in the underweight category. i am very aware that with someone who is heavier at the start, it may take longer for the dangers of an ED to be properly appreciated. i just wanted to clarify that she is technically about 2 kg underweight."

I'm sorry but have to disagree....my d was also on the upper percentiles (90-95%) of weight before ED, but when hospitalised she was a whisper below the 50% percentile. So one could argue that she was overweight before, but that was the correct weight for her. She also looked a bit chubby before ED. Now she is weight restored, back at her previous weight percentile and strangely enough, doesn't look chubby at all. The body has a set weight, deviating from it, just makes for poor health. Especially if she has lost her period, it shows that she is not well and not just a couple of kg underweight.
Sorry if I sound a bit preachy....

A couple of good books I can recommend are:
Eva Musby's "Anorexia and Other Eating Disorders: How to Help Your Child Eat Well and Be Well: Practical Solutions, Compassionate Communication Tools and Emotional Support for Parents of Children and Teenagers" - Great book, will teach you how to refeed
Julie O'Toole's "Give food a chance" - explains this illness and provides a more structured meal plan for refeeding

As for meals at school. For nearly a year I went to D's school during recess and lunch. She sat with me in the car and ate her food. Only later her teacher volunteered to supervise recess, when she reached a 'health' weight (which meant although not weight restored, she was beginning to grow again).

As the others said, you can expect more ED behaviours to surface when you start treatment. I just want to reiterate what Torie said: Ideally your d should see a GOOD ED dr once a week, who blind weighs her, take her temperature, her mid arm circumference and her blood pressure lying down and standing up. These are the minimum. The dr should also tell her to eat 6 times a day. She must hear it from many voices.

As for social media, it can increase anxiety. Time magazine called Instagram the worst social media sight for your mental health http://time.com/4793331/instagram-social-media-mental-health/. Last week I switch off the internet for my 2  Ds at home and they are much happier now. Oldest came to me and told me how relieved she was it's gone, only half an hour after switching it off. Other d told me the same thing the next morning.

You are already the in the best position to help your d, because you keep on observing her behaviour and looking for answers.

Where in the world are you?
Sending you lots of hugs from down under!!

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D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for a year and WR at age 11. Challenging fear foods now.
noo72

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Reply with quote  #32 
hi everyone. thanks again so much for all this information and support, mamaroo, torie and tooth fairy and anyone else that i have missed. i am honestly taking it on and am feeling more resilient myself so will take a look at that video later.

i am very, very, interested to hear your views and experiencing on bigger girls with AN as i what has been said about being very underweight FOR HER and ignoring BMI really resonated. dd has always been sturdy- she was over 10 lbs at birth! pre ED she was borderline slightly overweight. however, i honest believe that she is meant to be sturdy. she is just one of those girls who is meant to have big thighs. only she doesn't anymore. BUT she did used to eat sweet food in secret quite compulsively, so intuitively i think her natural optimum weight would be about 7lbs below the pre ED weight as i think there was some excess weight due to compulsive over eating. thats my gut feeling anyway. of course i'd never say that to dd.

RE the treatment we're getting and why they are not responding with greater urgency, here is a timeline. please tell me if you think they have been neglecting us, because i don't think i feel neglected [smile]

- March 2017 went to GP (family Dr) to say hat ED behaviour had been emerging since xmas
-agreed with GP that we would address this with her regular counsellor / as a family but got her weigh on record (had lost about 17 lbs so far)
-improvement followed as dd got a wale up call visiting the dr and getting it out in the open
-slow deterioration during may and then more markedly at start of June (had now lost about 24 lbs)
- emergency trip to Dr referral to specialist unit
- 3 weeks later (late june) seen by specialist team at local hospital including paediatrician, nurse, counsellor. ECS, bloods, and lots of talking. spent about 4 hours in all being assessed-
- by the time she was seen on the above appointment she had already improved slightly as they gave me advice over the phone about zero tolerance for missed meals and being prepared to ale time of work to support meal times/ bring her home from school if meals were missed ( i found their advice empowers and it helped me move forward with more confidence)
- dd was fairly stable during the next 4 weeks but still having disordered eating habits to a moderate degree
- in mid July she broke up from school and had 3 really good weeks and we went to stay with family for a few days. she ate totally normally!! i could not believe it!!
- the next day after returning from our trip she had another appointment and we reported to them that she was doing better than we dared hope... 'sometimes these things just resolve' was the message i got but also they wanted to see her again when she started back at school in case that was triggering for her
- then over the next 4 weeks things went almost immediately down hill again
- i rang them to report concerns and additional weight loss. they have fast tracked her next appointment as a result of this and are sending me additional meal planning guidance
- i have mobile phone numbers for two clinicians and they respond via text and phone very promptly if i contact them

they have given me a small amount of literature to read and the name 'Maudsley' was on the reading list somewhere.

am i right to feel some confidence in them based on the above?

noo72

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Reply with quote  #33 
that should say 'taking it on' not talking. 
toothfairy

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Reply with quote  #34 
Hi Noo,
Here is my opinion-
First regarding the "bigger" girls, again if you watch the video with Dr Peebles she discusses this at length.

Secondly. your timeline is very concerning for a girl that has lost 30lbs, yes I would be looking elsewhere for treatment immediately.

Thirdly , I am really taken aback by this "'sometimes these things just resolve' given what you have told us. Sadly eating disorders do not resolve, they are a brain illness that need treatment and to be taken very seriously.

NO just NO ! Is springing to mind...

Lastly , the longer this goes on the more difficult it is to treat. Early intervention is crucial for good outcomes.



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Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) , Then FBT at home since.and making progress every day. He is now in good recovery, and Living life to the full like a normal teen. We are not completely out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT. Hoping to get him into full recovery and remission one day at a time.
toothfairy

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Reply with quote  #35 
Re Maudsley and FBT - Yes this is evidence based treatment and this how many of us have got our kids into recovery, here is a link from this site.

http://www.feast-ed.org/?page=FBT_MaudsleyApproach&hhSearchTerms=%22maudsley%22

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Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) , Then FBT at home since.and making progress every day. He is now in good recovery, and Living life to the full like a normal teen. We are not completely out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT. Hoping to get him into full recovery and remission one day at a time.
toothfairy

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Reply with quote  #36 
http://www.maudsleyparents.org/whatismaudsley.html
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Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) , Then FBT at home since.and making progress every day. He is now in good recovery, and Living life to the full like a normal teen. We are not completely out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT. Hoping to get him into full recovery and remission one day at a time.
Mamaroo

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Reply with quote  #37 
Hi Noo72, my d also weighed 10 lb plus at birth. There are videos posted from a conference:https://www.youtube.com/playlist?list=PLwAiWzISIlS1fBg3e6ljzeGDI7XAIC1LH&app=desktop
I watched so many I can't remember which one, but one described that big babies at birth trend to be bingers and bulimic and smaller babies tend to get AN.
Thinking back, my d was born hungry, she always had a big appetite and ate very quickly, often resulting in her throwing up, involuntary of course. She would also binge on anything at home, one time even on apples. Her sister tend to binge as well and I used to give her celery to eat and she would eat the whole bunch in one sitting. Your d's sweets eating sounds like binge eating, an ED symptom, just not a typical AN one. For some reason my d developed AN after losing weight dancing and practicing gymnastics.

I read Julia Ross's book "The mood cure", and she describes the type of food to eat to prevent overeating. The secret is saturated fats, such as butter. She further recommends lots of protein, lost of vegetables, lots of fats. No sweets, not even fruit or high starch food at all. This is similar to the advice Julia O'Toole gives when refeeding. That is to avoid hyper palatable foods. She the link here:https://www.kartiniclinic.com/blog/post/why-we-limit-hyper-palatable-foods-for-one-year/

I followed these recommendations, and neither of my daughter binges anymore. They eat around 5 to 6 meals a day at predictable times EVERY DAY. I give then desserts now twice a week, but always after a meal to avoid triggering a binge.

When looking for a treatment team, it is a good idea to find a one stop team, where you have a Dr, dietician, therapist all in one place. That way, they are all singing from the same hymn sheet and can coordinate your treatment very easily. Hope you find such a team soon, in the mean time she should see a Dr every week to monitor her heart.

Best wishes!!!

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D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for a year and WR at age 11. Challenging fear foods now.
Foodsupport_AUS

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Reply with quote  #38 
It is good that you feel that you have been supported so far. We are not with you on the ground and so it is hard to judge exactly the state of affairs. 

The thing I find most concerning about your D's care so far is that you first saw them at the beginning of June with a weight loss of 24lbs. This is already a very concerning amount of weight loss. This article here talks about delays in diagnosis and lack of understanding of severity in those children who were overweight at the start of their illness. http://pediatrics.aappublications.org/content/132/4/e1026

Your D has now lost even more weight, whereas she should have gained weight. We can't tell you where her final weight should be, but almost certainly she is going to need to gain a significant amount to be able to recover. This article about predicting target weight is very helpful https://www.kartiniclinic.com/blog/post/determining-ideal-body-weight/

It is good that they have put in some urgency about your daughter at this point of time, it is essential that things get turned around straight away. There are many parents on this with children who have been critically unwell with severe cardiac issues with similar weight loss. Children don't need to be underweight to have severe complications of malnutrition. They do need to get things moving straight away. 

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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.
Torie

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Reply with quote  #39 
Quote:
Originally Posted by noo72
RE the treatment we're getting and why they are not responding with greater urgency, here is a timeline. please tell me if you think they have been neglecting us, because i don't think i feel neglected [smile] 


Honestly, it depends where in the world you are.  Doctors and ED teams in most parts of the world seem to be overworked and swamped with more patients than they can possibly manage well, and in many places, doctors have not been trained in modern, evidence-based methods.  So if you're in Germany (which I doubt), the team you describe is probably the best team in the country.  If you're in England or Australia, your team might be about average, but you probably don't have the option to choose someone else without the huge expense of going private.  But if you're in the US, you can do much better.  That's why I asked where you are.  (On average, ED treatment in the US is no great shakes, but many of the best ED clinicians in the world are here if you know where to look.)

As ToothFairy said, eating disorders have the highest mortality rate of any mental illness.  (Her sentence had a typo, but I'm sure that's what she meant to say.)  The mortality rate is similar to that of childhood cancer.

Do you think your d's team is treating this with the same urgency as if she had cancer?

Since you alerted them to all the ED signs, your d's weight loss has ALMOST DOUBLED.  It has been about 6 months since her initial visit, and they have still not provided a diagnosis, if I understand correctly.

That's unacceptable, plain and simple.

On the other hand, they do seem to understand that your role is to feed your d.  That's huge, and not something all providers understand.  So it could be much worse.

So I will repeat my previous assertion:  Someone close to your d needs to be (or become) very knowledgeable about anorexia.  If not you, then perhaps your d's dad?  If in the US, we can help you find someone who will diagnose - and treat - your d with the urgency demanded by the likely AN diagnosis.  If not in the US, we can help you light a fire under your team's rear so that she is diagnosed without additional delay.

All the best.  xx

-Torie

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toothfairy

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Reply with quote  #40 
Thank you Torie
Yes to clarify I meant eating disorders have the highest mortality rate of any mental illness.

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Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) , Then FBT at home since.and making progress every day. He is now in good recovery, and Living life to the full like a normal teen. We are not completely out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT. Hoping to get him into full recovery and remission one day at a time.
noo72

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Reply with quote  #41 
hi, and thanks again for the ongoing advice. 

i am in the UK (an hour or so from London). it is 6 months since seeing our GP (family dr) but only 2 months since  seeing a specialist unit at the hospital which is part of a county wide specialist eating disorder service, following the gp referral in june (they saw us 3 weeks after being referred).  they have given me a fast tracked appointment on the phone and we are on the list for family therapy.

i have found the dr peebles and eva musby links a great help. many, many thanks. so valuable re the bmi issue. thank you.


my next step is to begin to introduce more of her high calorie feared foods, i think.


goodbye for now!


toothfairy

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Reply with quote  #42 
Hi there, there are many people here from your area.
So glad u listened to the video, you are on the right track.
P.S, I hope you saw the thread I started today with Maudsley and FBT iaa topic.
Best wishes

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Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) , Then FBT at home since.and making progress every day. He is now in good recovery, and Living life to the full like a normal teen. We are not completely out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT. Hoping to get him into full recovery and remission one day at a time.
Torie

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Reply with quote  #43 
Quote:
Originally Posted by noo72
we had a long talk about the need for her to increase her calories as 1000 calories a day (her norm) is not the healthy state of affairs that she seems to think it is. 


I'm so sorry for what I'm about to say, but I strongly suggest you call today (well, I guess that would be tomorrow in the UK)  to ask the doctor who is in charge of her team for a safe schedule for increasing her calories.  (If they didn't already talk to you about this.)  There is a rare but potentially very serious condition called refeeding syndrome that can occasionally occur if caloric intake is suddenly increased too much.  I think what is typically recommended is about 300 kcal increase every few days, but as I have said, we are not doctors here and anyway, I haven't thought about this for a while so I don't remember exactly what I read.

When you are clear about the increase you are aiming for, I suggest you up her calories at least in part by adding rapeseed oil to whatever you are already serving.  I was surprised to learn that it disappears without changing the flavor or texture if you stir it in vigorously to soups, yogurt, sauces, smoothies, etc.  

Additionally, I suggest you ask her to use the restroom before each meal so that she can stay with you for at least an hour afterwards.  I'm grateful that someone suggested that to me right at the beginning, because many others have belatedly found that their ED-kid started purging when the weight started going up.  A nightmare!  You definitely don't want that.

If she fusses about that and complains "You don't trust me!" as is pretty typical, the best response I found was, "It's not that I don't trust you; it's just what I do."  Seemed very strange when someone here suggested that to me, but it got a MUCH better response than my instinctive, "It's not that I don't trust YOU; it's your eating disorder I don't trust" or whatever I had been saying.

Anorexia is very treatable, and it is a real plus that your d is still so young.

Keep swimming. xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
noo72

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Reply with quote  #44 
hello again. thank you and thank you again. i am taking all this in.

it's strange but she has been eating ok this week but i am feeling sick to the stomach with worry. i just know that things are really not right.


i have managed to get her hospital appointment brought forward to tomorrow, so i find out then what the waiting time is for family therapy.

i now have copy of eva musby's book as i really like her style on the videos. thanks for that tip!

please help me ask the right questions and demand the right things at tomorrow's appointment.

An update:

she looks pale. she is always cold. she has been really agitated and fidgety due to her anxiety. she says she has to keep fiddling and planning things e.g. redesigning her room to stop her bad thoughts taking over. her mood has been especially low since sunday. her sleep is disturbed. she says she has generally unwell/ odd colour for the last week.


she is really upset and scared by how bony she is and how cold she feels.

she is talking insightfully about gorgeous curvy girls and how much she loves curves and is actually sad she has lost hers. she is showing signs of having had epiphany about accepting her old self and not judging her body. she seems to have a whole new perspective on how down she used to be about her fuller figure.

i also spotted her reading an article in a magazine about how to keep a journal of positive experiences to force you top look at the good things in your day.


 i feel that she is really at a cross roads. am  right to think that these signs that she wants to change and begin to be kinder to herself are really positive signs?


she still will not eat sugar but this week has eaten dairy including fish pie and lasagne, both containing cream and lots of cheese. and she has really tucked in to the meals with relish.

snacks are still a problem... no nuts allowed in school, no refrigerator unless i force her to go to sick bay to eat her snack. so that leaves her with dry cheese oatcakes or a banana. which she may or may not be eating.


in summary: any advice for tomorrow's appointment and also advice for heightened anxiety  or 'mood boosters' (e.g. relaxation CDs that don't make you want to murder the narrator!!!) or even alternative remedies for anxiety? anything else?

thank you all xx




noo72

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Reply with quote  #45 
torie, thanks for the quote re trust. i will use that.
deenl

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Reply with quote  #46 
Hi noo72,

Quote:
Originally Posted by noo72
it's strange but she has been eating ok this week but i am feeling sick to the stomach with worry. i just know that things are really not right.

If she is eating well that's great. Some kids do just need their parents to say firmly 'This is it. We are in charge' and they can resist the ED. On the other hand, some kids eat with the family, knowing that they will be able to purge, either through vomiting or exercise, later. Is she staying with you for at least an hour after each meal and without visiting the bathroom? Do you check on her in her room, also at night?

Quote:
Originally Posted by noo72
she looks pale. she is always cold. she has been really agitated and fidgety due to her anxiety.she says she has to keep fiddling and planning things e.g. redesigning her room to stop her bad thoughts taking over. her mood has been especially low since sunday. her sleep is disturbed. she says she has generally unwell/ odd colour for the last week.

Assuming the doctors rule out any other source then these are very typical signs of starvation. At this stage, we kept the heating up extra high. This is especially important at night as the combination of cold, sleep and malnutrition can slow their hearts to dangerous levels. An orthostatic blood pressure measurement at the doctor's will show if her heart is under strain.

One of the first signs of recovery that we saw in my son was when he didn't need to be occupied for absolutely EVERY SINGLE SECOND. He too needed the distraction of occupation.

My sons sleep was disturbed because he was not eating enough protein to produce the melatonin necessary for sleep. Of course, the ED thoughts themselves are also nightmare enough to make relaxing in bed and getting sleepy very difficult. We gave melatonin an hour before bedtime. You can buy it over the counter at a health food store or get the doctor to write a prescription. 

Quote:
Originally Posted by noo72
she still will not eat sugar but this week has eaten dairy including fish pie and lasagne, both containing cream and lots of cheese. and she has really tucked in to the meals with relish.

I retrained my sons taste buds by first adding a quarter of a teaspoon of sugar to tea or whatever, then gradually increasing it. I didn't discuss the contents of his meals with him, simply said 'I know what your body needs'

Quote:
Originally Posted by noo72
snacks are still a problem... no nuts allowed in school, no refrigerator unless i force her to go to sick bay to eat her snack. so that leaves her with dry cheese oatcakes or a banana. which she may or may not be eating.

Have you tried this thread High Calorie Snacks

For some people, their illness can 'crossover', that is they start with one diagnosis and migrate over time to another. For example, they start with anorexia and the starvation triggers binging which develops into bulimia. The reason and mechanism is not yet fully understood. As your daughter has binged in the past it might be helpful to read the Kartini Clinic's posts on the topic https://www.kartiniclinic.com/blog/post/dr.-otooles-blog-physiology-of-binge-eating-and-what-motivates-us/ Their blog is very clear, easy to read and a fountain of knowledge from one of the world leaders in treating children and teens.

There is also some evidence that including a rough balance of carbohydrates, proteins and fats at each meal and snack can help reduce the urge to binge.

My sense is that you are doing great already at home. Don't expect family therapy to work wonders. The treatment for restrictive eating disorders is nutritional rehabilitation, weight restoration to an individuals healthy weight and time for healing of brain and body. The vast majority of this occurs at home, day in, day out. My son was unbelievable depressed, on his way to commit suicide, self harming and with a night heartrate in the low 30's. He would/will not engage in any therapy and yet is healthy and happy again through love, food and time. Of course, for many there are co-morbid issues in which case treatment/therapy is an essential component of recovery.

As regards the appointment tomorrow, it might be an idea to secretly pack an overnight bag on the off-chance she needs to be admitted for observation and monitoring of her heart. It it is not needed, wonderful [biggrin] but if it is, it is so much nicer not to have to worry about the practical things. 

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, 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.
mnmomUSA

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Reply with quote  #47 
I do not understand professionals who say "she doesn't have full blown anorexia."  Really?  I may not be a professional, your daughter sure sounds like she has full blown anorexia to me.  Besides, what harm is there in treating her as IF she does, and insisting on full nutrition, every meal and every snack.  From my years here (coming up on my 5th anniversary), there's no such thing as "sort of anorexia" or "sort of an eating disorder."
__________________
D, age 17, first diagnosed March 20, 2013, RAN, at age 13 Hospitalized 3 weeks for medical stability. FBT at home since.  UCSD Multi-family Intensive June 2015. We've arrived on the other side.  :-)
Mamaroo

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Posts: 129
Reply with quote  #48 
Hi, we also have a no nuts policy at school, so same problem re snacks. I bake muffins, double the butter and sugar to make it high calorie. Make my own protein snacks and make savory pin wheels. During the winter I had the heater on the whole time during the night in her bedroom. If the Dr doesn't prescribe anti depressants, you can get some anti anxiety meds at a pharmacy. Some take a while to work, just see what works for you. Good luck with the appointment!
__________________
D became obsessed with exercise at age 9. Started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for a year and WR at age 11. Challenging fear foods now.
noo72

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Reply with quote  #49 
i agree mnmomUSA. BUT i think it might be because she was going through a good patch on the two occasions that her appointment time came round.

deenl. thank you. i've read your post twice to try to grasp the key points that you make and get them firmly in my mind.

i have learnt so much over the last few days, thanks to everyone here.




Torie

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Reply with quote  #50 
it's strange but she has been eating ok this week 

Great!  About how many calories has she been eating each day?

i have managed to get her hospital appointment brought forward to tomorrow, so i find out then what the waiting time is for family therapy.

Good work!  Sooner is definitely better.

please help me ask the right questions and demand the right things at tomorrow's appointment.

For me, the most important thing was a team that would have my back and support me in the oh-so-difficult job of re-feeding.  As deenl said, you're the one who has to do the heavy lifting.  The idea behind FBT (I think) is that the PARENT is the leader of the team and everyone else's job is to support the parent.  If you have a chance to talk to them without your d in the room, I would ask them what kinds of backup they offer in case your d refuses a meal.  How will they support you on that?For example, Dr. Peebles told me to take my d (and her meal) to their hospital if she refused a meal.  I never needed to do that - just knowing it would happen was enough to help my d finish all her meals. 

An update:
she looks pale. she is always cold. she has been really agitated and fidgety due to her anxiety. she says she has to keep fiddling and planning things e.g. redesigning her room to stop her bad thoughts taking over. her mood has been especially low since sunday. her sleep is disturbed. she says she has generally unwell/ odd colour for the last week.

Did you say your d had OCD in the past?  Does some of this look like OCD to you?

she is really upset and scared by how bony she is and how cold she feels.

That's really good, actually.  Cherish that!

she is talking insightfully about gorgeous curvy girls and how much she loves curves and is actually sad she has lost hers. she is showing signs of having had epiphany about accepting her old self and not judging her body. she seems to have a whole new perspective on how down she used to be about her fuller figure. i also spotted her reading an article in a magazine about how to keep a journal of positive experiences to force you top look at the good things in your day.  i feel that she is really at a cross roads. am  right to think that these signs that she wants to change and begin to be kinder to herself are really positive signs?

It sound positive to me.  Then again, you never know what tomorrow will bring.

she still will not eat sugar but this week has eaten dairy including fish pie and lasagne, both containing cream and lots of cheese. and she has really tucked in to the meals with relish.

As deenl said, please make sure she is not purging.

snacks are still a problem... no nuts allowed in school, no refrigerator unless i force her to go to sick bay to eat her snack. so that leaves her with dry cheese oatcakes or a banana. which she may or may not be eating.

Even if she is eating that, it is not enough.  Your team should help you brainstorm ideas to get bigger snacks in her and to make sure she is eating them.

in summary: any advice for tomorrow's appointment and also advice for heightened anxiety  or 'mood boosters' (e.g. relaxation CDs that don't make you want to murder the narrator!!!) or even alternative remedies for anxiety? anything else?

The best thing I found was distraction. My d refused to try relaxation videos and most anything else I suggested.  Distract distract distract was about all we could do.

Please keep us posted. xx

-Torie
 

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