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debmommyof4

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Reply with quote  #1 
I just found this group & the FB group yesterday after spending 24 hours searching for information on AN. My daughter is 13 years old & has been losing weight for about 10 months but in the past 2 months I noticed huge changes in the way she was eating. We returned from a family vacation on Wednesday where she was with us 24/7 & I realized then just how bad she is restricting food. Upon returning I also found scars on her leg from self harm. I confronted her gently on both things & she broke down & told me that she restricts her food, only eats when we notice, throws out food etc. She also has self harmed in the past but not recently. I immediately called her ped, who we will see on monday, but i know this won't be the answer. I am lost as to how to proceed. Yesterday was horrible, now that we know what is going on. The restrictions in the past 24 hours have gotten worse she would only eat when I told her she had to & she cried while doing so. We live in Rochester/Buffalo NY. Has anyone used Golisano Children’s Hospital at Strong? They are listed on Maudstry Parents.
My head is spinning right now. I don't know what my next step should be. Should i continue to force her to eat until we find help? Should I be reading a certain book? Any advice is appreciated as i feel I am wasting time right now.
sk8r31

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Reply with quote  #2 
Welcome to the forum...though sorry you have a need to be here.  It is hugely distressing to have a dx of ED for a loved one.  However, you've landed in a good spot to find lots of helpful evidence-based information and a great deal of peer support.

There is a steep learning curve involved in this dx.  First, I suggest you read as much as possible, and there are some great resources on the main FEAST site.  Perhaps start with the FEAST Family Guides, which are small pamphlets packed with info.  They can be downloaded as pdfs, and also shared with trusted family members, spouse & medical providers if needed.

Throwing Starfish Across the Sea is a short book written by two parents, Laura Collins and Charlotte Bevan, and can give you a boost as you learn what you will need to do moving forward to help your daughter.

Eva Musby has fantastic resources for parents and many helpful short videos that can help you with the HOW piece of getting your d to eat what is necessary to become nutritionally rehabilitated. 

Ask lots of questions...we are here for you.

Sending warm support,
sk8r31

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It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
tina72

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Reply with quote  #3 
Hi and a very warm welcome from Germany. You have found the best place to be right now and you will get great help here.
First step will be to see her GP and get a diagnose. Than to decide wether IP is better for her or wether you can do refeeding at home.
I would suggest looking around here on FEAST homepage a lot and read Eva Musbys book "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" first. That will give you an idea what FBT is and what refeeding at home will mean.

Until then it is a great step that you got her to eat when you told her she has to. That is not forcing her to eat, you just require it. And you do not require anything unnormal or unbearable from her, you require just to stay alive and to have normal meals. Try to get 3 meals and 3 snacks into her (you will not get that tomorrow, try to increase it slowly). Put the plated food in front of her and tell her that life stops until she has eaten that. Try to put as much calories into a small footprint of food as possible and do not let her see that (get her out of the kitchen while cooking and plating).

You will get help. AN is a severe disease but recovery is possible. The most important thing now is to get that lost weight back asap and to help her to eat all that again what she is restricting now. That is a long road and you will need a lot of power for that, but you are not alone. Here are a lot of nice parents who have been (or still are) in your shoes. We can all help you and somebody in the world is awake nearly 24/7.

So ask, ask, ask.
Tina72
toothfairy

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Reply with quote  #4 
Hi there,
Yes I would require her to eat now. Do not wait. Basically you will need to take over and give her no choice.
This is a steep learning curve.
She may need to be taken to the emergency room if she has been restricting for that long.
Our kids can become medically unstable very easily.
Here are some videos that may help you.
Let us know how the rest of today goes.
If she still refuses to eat I would definitely take her to ER and have her checked out and she may need to be fed by tube. Best of luck.




__________________
Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery,  and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
Foodsupport_AUS

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Reply with quote  #5 
Welcome and sorry that you have had to find your way here. 
It is very scary when you first discover the eating disorder. I have a few regrets, from when my D first became ill. One of those was giving into her eating disorder with her saying that she would not go to get help if I "forced" her to eat. I did not know then that I absolutely should have been the food police, and further that it is OK that everything focuses on eating initially. 

Depending on how ill your D is will determine whether she needs hospitalisation for medical stabilisation, however other than that the first step is trying to get her to eat at home. There are some great Australian tip sheets which assist with getting feeding starting, again free too download. http://ceed.org.au/sites/default/files/resources/documents/FamilyLedRefeedingRecoveryResourcePartA_Nov_2017.pdf and http://ceed.org.au/sites/default/files/resources/documents/FamilyLedRefeedingRecoveryResourcePartB_Nov_2017..pdf

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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.
scaredmom

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Reply with quote  #6 

I too welcome you here. I am so sorry you need to be here.  As she is so young like my D, the evidence is compelling that 80%+  will recover! 
Please keep feedng her and I am glad she is eating when you require her to. This may not be the case all the time though. Please be prepared for ED rages. These can include throwing food, becoming physical with you or self harm (as you have seen on her body). 
Firstly she needs a proper medical assessment and diagnosis. And please know that if they tell you she is fine, you need to go with your instincts. I have seen in the last year that the mother/parent always knows and professionals tell them that the child is ok and that the child should have control. Please don't believe that, keep a healthy skeptical attitude with the professionals and come her to let us know what is happening. There is always someone who has literally been where you are, I promise. 
So a few things
1) Keep the home safe- hide sharps, and medications ALL OF THEM, look everywhere in the house for objects that could be used to harm herself or others.- HAve an emergency plan, 911 etc. 
2) look up high calorie food thread on this site. Try to keep the volume of foods down but the calories high. That is what works well then over time volume can be increased. This way we can keep the "Foodprint" small. It is less overwhelming for the child
3) Look up Magic plate- you prepare, the foods and plate them and she has to eat. SHE SHOULD NOT BE THERE WHEN YOU ARE MAKING THE FOOD. 
4) Get plastic plates, she may throw her food many times so please save your good dishes (This did happen to us and others on this site)
5)if she is over-exercising - she needs to stop
find other distractions than exercise. My D at 11-12 at Diagnosis with RAN had ++ issues with standing too much.
6) Is she purging- if you are not sure, look everywhere for it and smell for it! IF she is running to the bathroom right after a meal, she may be purging. So make her go the bathroom before eating and not for one hour after eating.
7) If she is not eating at school or you don't know, you may need to keep her home to feed. School is not important right now, her health is the most important.
Are you flexible  about working and able to stay home for a while? I needed to do that and so have others. I was not prepared for that until ED forced me to stay home for a while to  make sure she is safe from her thoughts and behaviours. 
8) The weight gain goal per week is 1-2 pounds. It will likely require a huge amount of calories per day - my D needed up to almost 5000 calories per day and one year later still at about 3500 to 4000 cal per day as she is still growing at 13 and needs that amount of fuel.  We started out at 1800 and in the hospital they increased the cal by 200 per day and when discharged she was at 2500 cal per day. We had to increase every few days until we saw good weight gain per week. 
9) If not eating or drinking for 24 hours, please take her to the hospital for assessment of dehydration and cardiac status ie drop in blood pressure going from lying to standing (orthostatic BP) and low heart rate. 
10) It is a marathon and not a sprint. It takes a lot of time.It has been one year since my D was diagnosed and at about 9 months into it I could see my real, loving,lovely, kind happy child start to emerge. There will good and bad days and over time the good will be more than the bad. Keeping a journal for you to see the progress over time, may help on the bad days.

If she needs to be hospitalised, it is NOT a failure. We needed that at diagnosis. It taught me a good routine with meals. 3 Meals and 3 snacks every day every 2-3 hours until bedtime. That way the routine was established so that my D knew that would happen at home. There is no failure here, you keep trying. Now for yourself, this will be hard. I did not know how hard that would be. It was the hardest thing I have ever done. So take care of yourself, if you need anxiety meds or meds to sleep or a therapist for yourself, Just do it! 
I don't wish to scare you, I really don't. I want you armed for battle and not be surprised when some of these things happen. I wished my team had told me some of this before they happened because when they happened I really thought I was doing everything all wrong- I had felt ashamed of what happened to my D and our family- If someone told me about some of the horrible things, at least I did not need to feel so badly and may have asked for help sooner. 
Keep hope! one year after diagnosis my D is doing great! 
We are all here for you. Keep asking questions!

XXX
Food+more food+time+love= Healing--->recovery

Mamaroo

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Reply with quote  #7 
Hi debmommyof4

Welcome to this forum and sorry to need to find yourself here. you already got great advice from the other mums here and I can only add the following. We also returned after a holiday realising our d was restricting and over exercising. While still being on holiday I called our gp to make an appointment. What I wished I knew then, was that the dr didn't have a magic wand to make her eat. I thought if only I could find a therapist who could get through to her, then she would eat. But this illness does not work that way. Some people's brain works differently when they experience a negative energy state. By the way this negative energy state (when they don't get enough food in) can happen due to illness, overexercise, an operation, going away on camp or eating 'healthy'. For most of us, being hungry makes as agitated, but for those with eating disorders genes, feeling hungry makes them feel calm. Restricting food is their way of dealing with anxiety. And when they start to restrict, the starvation causes more anxiety so they need to restrict even more. It is like being on a drug and an eating disorder is like an addition.

Hopefully you have a good dr, who will tell your d she needs to eat what you put in front of her. She can't (not won't) eat by herself. She needs you to choose what she eats, plate it,  sit with her during meals and supervise her afterwards. She can't choose what to eat, it will only increase her anxiety.

Remember the 4 C's: calm, confident, consistency and compassion.

You need to be calm during refeeding, especially when your d is not. That way she know you are in control and not the eating disorder.
You need to be confident what you are doing, even if you have to fake it. ED can smell doubt and will go for any loophole. All of us here had to fake it until we were confidently refeeding.
You need to feed her consistently. I've attached a blank mealplan for a week. Fill in all the meals you plan to give her and place it on the fridge. When she knows what to eat, it will decrease her anxiety. Have the meals at the same time every day. When the brain is malnourished, routine helps.
And finally have compassion, your d will do and say the most terrible things. I was slapped, kicked, hair pulled out and the most vile things said at, but remember that it is ED not your d. You will get her back.

When speaking to your d's dr it is important to get her back to her historical weight chart. If she was on the 70% curve, get her back on the same curve. Brain healing only starts 6-12 months after getting back on her historical weight curve.

Most of her anxiety symptoms are due to starvation and malnourishment of her brain. Are you familiar with the Minnesota semi-starvation project? During WW2 volunteers were started and then refed to help with the refeeding effort in Europe. All the volunteers were healthy, mentally and physically before the experiment, but when stared they experienced a lot of anxiety.  From Wikipedia "Among the conclusions from the study was the confirmation that prolonged semi-starvation produces significant increases in depression, hysteria and hypochondriasis as measured using the Minnesota Multiphasic Personality Inventory. Indeed, most of the subjects experienced periods of severe emotional distress and depression.[1]:161 There were extreme reactions to the psychological effects during the experiment including self-mutilation (one subject amputated three fingers of his hand with an axe, though the subject was unsure if he had done so intentionally or accidentally).[".

Take a deep breath, we are your support system during this long marathon. Please ask whatever questions you have and feel free to vent here when you have a bad day. We all had them and we understand.

Sending you lots of hugs!!!

__________________
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 in March 2017. She is back to her old happy self and can eat anything put in front of her. Now working on intuitive eating.
teecee

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Reply with quote  #8 
Warm wishes to you. From your post I can see there are real positives already....your D is talking to you and letting you know what she’s been doing. That’s such a great thing and was a relief to me and my h. I would encourage her to continue to be honest and open. There will be a huge internal conflict going on for her so speaking out was so brave of her.
Excellent advice above which I can only echo.
Eva MUSBY’S book was our life saviour. If you are short on time which I suspect you will be with exhaustion, you can dip in to relevant chapters.
Practically we had a joiner fit an internal lock on a cupboard where we keep sharps, medicines, poisons/cleaning fluids...to protect her from coming to harm if she has an ‘episode’ as self harm can come about on the spur of the moment. My D was actively suicidal recently.
This gave us some peace of mind as I had frantically rushed round the house hiding obvious things when she was having a distressing episode and the ‘beast’ appeared. Remember you have to see the beast to slay it so staying calm confident consistent and having compassion is so so key.
The ED will resist food, kick and scream etc but underneath that beast is your beautiful D wanting you to do the right thing for her. My D thanked me in her lucid moments for keeping her safe and feeding her as that is what she truly wanted even though she was screaming at us and saying she wasn’t hungry....had stomach ache etc.....
Stay strong you can do it. Your D needs you do do it for her.
Virtual love and hugs xxxx
debmommyof4

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Reply with quote  #9 
Wow, I am just overwhelmed with the love, support & advice I have received.
Yesterday went very well she ate each meal I provided for her & spent more time talking to me about her fears (that I or someone will make her fat again, on a side note my d has been overweight most of her young life).
This morning was a different story. I know she is overly stressed about her doctors appt today at 2pm. Breakfast took about 2 hours. She was mad that I changed her meal from yesterdays (I had no idea that she will need so many calories so I upped breakfast today). She cried for about 30 minutes while I reassured her. She got angry & said there was no way she could eat everything I put in front of her. Then she cried again that she was being a bit** to me and that I don't deserve this (her words).

I am reading, reading & more reading. Doctors appt at 2pm.

I am going through each of your responses. Thank you so much.
debra18

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Reply with quote  #10 
Try making a meal plan in advance so she will know what she needs to eat and she won't be crying during the meal.
teecee

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Reply with quote  #11 
Well, what an excellent job you are doing...well done!
Whenever she has a meltdown over something try and have an abundance of compassion for her in those moments.
Your D is responding to you in a similar way to which my D responded early on. She ate many of the meals we provided. The ED was obviously giving her grief because she tried to negotiate further down the line close to being weight restored but please stay gentle but firm in those instances.
On one occasion my D steadfast refused to eat a meal out of the blue which did shock us so be prepared for that. Gentle encouragement “I know it’s hard for you....it’s safe...look at me....pick your fork up....put the food in your mouth...like me” - I gently repeated this whilst the ED was very rude to me. She complained of being full etc but then did eat all the plate! Afterwards she thanked us.
My D needed reassurance we wouldn’t make her fat.
She needs to believe you are confident (even if you don’t feel it). Ask whatever you need if you don’t have time to read at the moment.
Keep going warrior! You are doing amazing....it’s a marathon not a sprint so conserve your energy and pace yourself. She will get better from this just expect some blips along the way.
Well done!! Xxx
tina72

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Reply with quote  #12 
You need to treat her like a toddler with meals. Be calm and patient. It is really great that she eats what you serve, that is a BIG step. Try to increase slowly and do it with hidden stuff (oil into yoghurt, pudding, applesauce, cream into milk, sauces...). When she does not see it she can eat it.
If she complaines about being fat tell her that you promise her not to make her fat, that you just want her to be healthy and happy and then change the subject. That is not rational talk and it is lost time to engage in it.
Love and compassion and patience, that is the secret. Try to be a brick wall and just require eating what you have plated. Normal meals.

Keep us updated what the doctor said. Hope he is a good one.

Tina72
hopenz

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Reply with quote  #13 
Hi debmommyof4.  Welcome, and congratulations on making a great start.

You've had great advice already.  I thought I could add a couple of suggestions which we found helped us get through those awful early mealtimes.

As someone has said above, put away your best crockery.  We didn't go quite as far as paper plates - we all need to eat, and it's impossible to know how long the refeeding phase will need to last!  We used the less precious/outside crockery for a very long time.

Could you try using distractions to help your d get through meals?  As a family we played dominoes, cards, bananagrams etc at the dining room table to help my d (and us all) to get through tough meals.  Alternatively, if mealtimes become too distressing for other members of the family, perhaps consider you and your d eating separately? Others here have found that worked well.

Sore tummy at mealtimes was a real issue.  We heated up a wheat bag for my d before we all sat down to eat.  As well as easing her sore tummy, I also think this provided a sensory distraction.  She also sometimes found essential oil on a tissue helped distract her (and disguise the smell of food) through the meal.  And playing music, either something we could all sing along to, or something very soothing.

These distractions didn't all work every time, but it was useful to have them up our sleeve.

Good luck, please come back and let us know how it goes, and ask lots of questions.



Mamaroo

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Reply with quote  #14 
I see I forgot to attached the blank meal plan. Here it is.

 
Attached Files
docx weekly meal plan blank.docx (13.51 KB, 10 views)


__________________
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 in March 2017. She is back to her old happy self and can eat anything put in front of her. Now working on intuitive eating.

Mamaroo

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Reply with quote  #15 
My d also 'looked' overweight when she was younger, but today, being back on her historical weight and height curve, she is tall and slim-curvy. When she said she was afraid we'd make her fat, I just said we were stretching her  [biggrin]. It's just the anxiety talking.

Sending lots of best wishes!

__________________
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 in March 2017. She is back to her old happy self and can eat anything put in front of her. Now working on intuitive eating.
toothfairy

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Reply with quote  #16 
Hi
How did you get on at the doctors?

__________________
Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery,  and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
debmommyof4

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Reply with quote  #17 
The appointment was good in some ways. My d was very open with the doctor. She is not underweight yet but was very close and I was able to see how drastic her curve was. In 7 months she lost 45lbs. Most of that being recently. Her doctor admitted not knowing exactly how to help us but agrees that she needs help. She was reaching out to other doctors to see the best place for us to start. My d left that appointment very open to talking & that carried on into the evening. I have learned alot more about how she feels this started. Depression, anxiety, hating her self. We got through 3 meals with no tears or anger. I know this won't always be the case but i will take it while I can.
debmommyof4

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Reply with quote  #18 
Oh and bloodwork was done with a rush put on it. Hoping to hear about that today.
teecee

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Reply with quote  #19 
I’m so happy that things are moving forward for you and your D and that the doctor is reaching out for support on your behalf. It’s great to be able to get an effective support team around you working with you. Keep feeding her and you will see her mental state improve whilst you make decisions about her care. I am in the UK so I gather things are different here...can’t advise you re that but do what you think is right.
scaredmom

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Reply with quote  #20 

So glad the appointment went well.
You say she is eating 3 meals per day. Can you increase to 3 meals and 3 snacks per day. That way you will be able to get to weight restoration faster.
Please look up high calorie snacks etc. on this site. Some have needed up to 6000 cal per day to get the weight up.
My D got up to 5000 or so and is at 3500-4000 at this time and she has been WR (Weight restored since September). For her brain to heal your D may need more weight than you every thought. Look up state vs weight here too asToothfairy has posted the video and it is really good.
My D is 10 kg above the first target weight and when she was 7 kg higher that is when I saw her state (brain) was getting better.


Good for you to get this going so quickly!!

XXX

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