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cm72

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Reply with quote  #1 
I don’t know why I was thinking that after my daughter was weight restored, that things would get easier. As a reminder my daughters 10 years old and was diagnosed anorexic in early August. So we’ve been going through this journey about 8 to 10 weeks. As of last week she’s back to her original weight. I’ve been introducing a fear food about once a week. She will fight me on it but always eventually caved in. Well this past week she is fighting me on everything except for cereal, apples, pretzels and cheese. Just wants to sit in her room all day and play on our phones. I haven’t been able to hardly even get her to take a shower or get dressed. When I ask her to do something, like clean her room, she start hyperventilating. Full on panic. She’s always complaining about bloating and just today started saying she’s fat. I don’t know what to do and my husband just sent me Out of the house because he found me on the floor cleaning up the latest food she has thrown and almost in tears. She’s on fall break this week and I’m going to be alone with her while my husband and another daughter are going on the trip. I don’t know what to do to turn this train back around. It’s sometimes overwhelming to think this could last many more years. Words of advice or encouragement would be very welcome.
mimi321

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Reply with quote  #2 
You've come very far in a short period, and although it may seem like things are not as you expected you have made a big difference in her health. It is likely she needs to keep gaining, she may be gearing up for a growth spurt and her growth curve from a month ago may not have been high enough. Before they get to where they need to be they often experience heightened anxiety called an extinction burst. If you search extinction burst in the search feature you will find more info. Once they get to where they truly need to be, the stress levels off again, and unless there are other co-morbidities, you should see some improvement. If you find it too much this week, you could ease off on introducing fear foods but only if she is still getting enough calories and fat. Remember as I just learned, not to back off on intake once wr, she will need increased calories for quite awhile.

https://www.aroundthedinnertable.org/post/confusion-over-calorie-needs-once-wr-9864443?pid=1305687884


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scaredmom

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Reply with quote  #3 

Oh cm72,
I feel ya'.
It does take a long long time. We are at 1.5 years since diagnosis and it is better, it really is. My D took about 6 months to get to WR so you have done great. That is just the start of healing. It took about 4 months later for her to really be more of herself. Don't despair, you have done so well in such a short time. I know it seems like an eternity, but 8-10 weeks is so short. Most of the specialists' WR goals are too low. And ours was too. I had to go 6-7 kg more than the first WR to get her mental health so much better. ( I did what the wise teachers here told me to do) And now we are 12 kg above the original WR and she is doing great. Still some anxiety issues with new things and new foods, but so much better and easier to tackle.

There is a thread about extinction bursts and how there are times in this process where it seems they are going backwards after getting to certain stage. Ie ED is fighting a lot as ED knows "he" is almost dead. I hope that makes sense. It is a process, up and down but mostly up. 

This part does not last years. You just have to keep getting her to gain weight on her curve.  As for being her "original weight" is that for her growth curve. Look at her growth curve to give a sense (not that you want her to "just"be on the curve)of where she should be. At 10 she should be growing a lot so keep feeding high cal diet. My D is still at over one year on 3500-4000 cal per day. Some have had to go well above the weight percentile to get a better state of mind. Push the weight up. 

Have you seen the "state vs weight" video on ATDT? And there is a recent thread that has a nice video (toothfairy posted) about how much calories they still need after WR. It can be up to 6000 or more for some kids. 

You have done so well, you really have and in such a short time. 
Please be kind to yourself. I know H is going away, is there a friend that you could talk to or could you take a break and do something nice for yourself while he is away.
Sending you a big hug

XXX
Food + more food + time+ love +good professional help+ATDT+no exercise + more weight for state =Healing---> recovery (---> life without ED)

 

Foodsupport_AUS

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Reply with quote  #4 
We all want this to be over so fast. It will get better, even though the vestiges may be around for sometime to come. 

 A few things, at 10 it is likely she is growing rapidly so to get back  to where she needs to be she needs to gain what she lost plus more and then keep on with it. Secondly it sounds as though her anxiety is high a lot of the time - hence the comments about fat, may  be part of her bloating, her anxiety about various activities.

If she is close to weight restoration there may be extinction burst, an increase in her anxiety close to weight restoration that some parents have noted.  You do have to plough on through but you can slow things down if it becoming all to hard at the moment. It is  important to remember that most kids will  increase their variety with less resistance when they  are mentally in a  better place. It would also be worth having that conversation away from meals  with her that if she continues to throw food she is going to be required to clean every bit up. 

 Are the activities you are able to do with her to keep her distracted from her thoughts?  This includes things like puzzles, games, learning new crafts, outings. She may need a lot of one on one time to help her if she is anxious as she will have less time to ruminate on things. 


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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  #5 
mimi321 and FoodSupport_AUS, 
Funny we all discussed extinction burst.[smile]
Nice.
XXX
cm72

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Reply with quote  #6 
Darn it! You all made me start crying at Starbucks. It’s tears of relief actually because there’s a name for what’s going on! I have never heard of this extinction burst but will read up on it.
I have a tendency to have catastrophic thinking so while she’s having this high anxiety, I keep thinking it will last forever. I’m glad to hear it won’t. Thank you all again for talking me down.
scaredmom

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Reply with quote  #7 
Well I am glad you are  at Starbucks! Yes there is good thread by Irishup I will look it up...
XXX
Nicstar4

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Reply with quote  #8 
Hang in there and come here often. I have found so many people with great support and advice
Keep on giving the food. I am sure the WR and keeping there are as difficult as the refeed. Bloating is part of the course. (Don’t know yet as not there yet!) support and reassure. Maybe doing the tidy of the room with her, rather than by herself. Maybe phone free time or phone as a reward.
Don’t think about what is ahead, just do the now, one moment at a time. You have got this, you got her this far already.
scaredmom

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Reply with quote  #9 

http://www.aroundthedinnertable.org/post/some-rather-long-musings-on-extinction-burst-relapse-and-recovery-6462360?highlight=extinction+burst&pid=1288099228#gsc.tab=0
there you go! 

Enjoy your drink
XXX

mimi321

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Reply with quote  #10 
👍🏻 ☕️🌈💪🏻 You've got this! Funny how everyone responded at the same time with the same advice. We've got your back. Enjoy your coffee, it is well-earned! 😊
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cm72

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Reply with quote  #11 
Thanks. I will read tonight. Now off to go back home and face the music.
Kali

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Reply with quote  #12 

Dear CM72,

I can hear your despair but want to reassure you that if you have gotten your daughter back to her original weight in only 8-10 weeks then in fact you are doing amazingly GREAT. It may not feel like that due to the every day things that are going on and the initial shock of realizing that she is ill. Try not to dwell on the fact that it can take a long time and just take it day by day. You may need to draw on strength you never even knew you had. And you may see your daughter returning to you, slowly, and when that happens you will cherish every moment of that. 

Quote:
So we’ve been going through this journey about 8 to 10 weeks. As of last week she’s back to her original weight.


What kind of support do you have on the ground? Do you have family nearby or friends who could help in any way? Does your daughter have a treatment team? 

I remember when I realized the seriousness of my daughter's illness and I felt just like you do. Exhausted at the prospect of maybe having to manage it for years and overwhelmed with grief for what I thought our lives were going to be like. Eventually I found it easier to focus on the trees instead of the forest, if you know what I mean. Considering the big picture of anorexia was too frightening, but focusing on small victories kept me going. Getting her in treatment? Victory. The first time she took a cookie on her own? Victory. Getting and working to keep her weight restored? Victory. (with some wobbles 😉 Her return to school? Victory. Her first job? Victory. Traveling to South America for 5 weeks to study and not losing weight? Super AMAZING Victory. First boyfriend? Victory. And maybe these milestones mean more to me than to another parent who doesn't have a child with a mental illness and just assumes those things will happen. I didn't assume anything.

And it may take a long time. I can't sugar coat it but I can tell you some of the things I tried to manage my own sorrow and exhaustion. I found a good therapist who I saw on my own and who primarily works with eating disordered patients, so she had lots of good practical ideas to share when I described situations at home. I got really into cooking and nutrition and tried to out do myself and be creative and use fresh and tasty ingredients since we have to spend so much time making food. I came on ATDT and read as many stories of hope as I could and asked for advice from the wise caregivers here. 

Here is a great article by Eva Musby about caregiver burnout that you might find helpful.

https://www.mirror-mirror.org/eating-disorder-caregiver-burnout.htm

If you have a week with your daughter and she is not at a dangerous weight, why not plan some outings? Take her to do some things she might enjoy between mealtimes. See a movie. Buy her a new game and play it. Binge watch a show together on Netflix if you have that. Go to the zoo or a museum or an amusement park or take walk in an interesting place. If she will not eat out you can pack a lunch with a cheese sandwiches, apples and pretzels and find a nice quiet place to eat together. Take the week to do some things together and talk to her and shower her with love and see if you can help her to smile again.

Mamabear's daughter also got ill at 10 and perhaps you might want to look at some of her posts. Her daughter is doing well now and is in recovery. 

warmly,

Kali



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Mcmum

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Reply with quote  #13 
Hi cm72. Our timelines are very similar. My 9 year old s was diagnosed early August too and wr a couple of weeks ago. He then grew a centimetre almost overnight and equally started to display all of the characteristics you are talking about. High anxiety about everything, body checking, "I'm fat". We had a return of the lashing out and everything. We are still sticking to the meal plan. He can only eat what is on his plate, has a melt down about fear foods ( we've abandoned that one) and only once has helped himself to food (2 Mints!! We inwardly cheered!!).
So, early days. They're so young and we so want to be rid of this Thing but really we're in it for the long haul. Congratulate yourself on how far you've come in so little time, go back to what you know food wise and be kind to yourself. You're doing brilliantly. Our children are healing but it's not a straight line and that's hard especially when you're on your own.
Do something nice for yourself, admire the quality of the sunset and tell yourself that all will be well because it will. Our children are lucky that have us fighting for them because we love them so much and we are stronger and tougher than ed will ever be.
Have a great day. Stroke the cat, eat something YOU enjoy eating, call a friend and remind yourself of how far you've come. xxx
tina72

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Reply with quote  #14 
Sounds very much like extinction burst, like the others said. Keep feeding and keep the weight going up until you see a steady change in behaviour. At that age they are never WR because she will grow soon and then you need to set a new target weight. Try to keep her on the top of her weight range so she will not get malnurished again by growing.
It will get better but in our case brain recovery started about 4 months after WR (and this means a higher target weight than the professionals had set in our case). So you are really in early days. Do not give up now and do not lose hope. Brain recovery needs time. All these bad brain connections need to be rewired and that needs time and fat and glucose for the brain to be able to do that.
She will come back. Not today and not tomorrow, but I am sure you will see the difference in a few months. So try to stay patient and do something nice for yourself to reload your batteries.
Tina72

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tammy

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Reply with quote  #15 
We were in this position last year with my then 8 year old son. As others have said we experienced extinction burst too. We kept on feeding and pushing calories and things got better and then as a last ditch attempt ED tried excessive exercising.
I truly believe that the brain needs time to heal and that we need to keep on pushing the calories for years to come as our children are growing at such a fast rate. I have not seen any ED behaviours for about four months now and I totally have my son back and he is even better natured than he was before! I still push calories but not to the same extreme and all my gut wrenching anxiety has gone.
You are doing a wonderful job. Keep going strong.

Tammy
toothfairy

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Reply with quote  #16 
Hi there,
Here is the state not weight video mentioned above


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toothfairy

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Reply with quote  #17 
I just bumped up the thread on "calories required are often much more than we think"
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mjkz

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Reply with quote  #18 
One thing I would say is getting them weight restored is the first step.  There is a lot more after and things don't just go back to "normal" after they get back to a healthy weight.

My daughter has been sick for many years, eats on a schedule, etc and is healthy now but for the first time since being sick just this last week actually picked up something and ate it not on schedule and at someone's suggestion she try it because it was good.  Win in my book especially with someone who never has hunger signals and has never been able to do that before.
tina72

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Reply with quote  #19 
Hey mjkz,
that is really great!!! I can only imagine how you must have felt seeing that. Even after so much time there is hope for those gold star moments.
I am so happy for you and your family!
Tina72

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scaredmom

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Reply with quote  #20 
mjkz, It is always so nice to hear from you. I am pleased your D is doing well! To eat something off the schedule is huge! Still on a schedule here and trying to change that a bit.

XXX
teecee

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Reply with quote  #21 
Firstly what a great job you have done to get her weight restored in such a short space of time. Sounds like an extinction burst to me...they come and go periodically but then after them my D seemed to go up another level and press on so to speak.
We are nearly a year into our journey (since we noticed her getting unwell not diagnosis) but the difference from Feb 18 to now is huge. She is actually living a fairly normal life, not without challenges but certainly it’s no where like where we were in Feb.
Please don’t think of it in terms of years. Take one day at a time. I did that in the early days as I torchured myself in the early days as it was crippling to think of years of this. Now I’m in a much better place to think ‘if it takes years I’m up for it’. A couple of months ago not so...you will change your outlook and normality will be resumed. It’s just a different kind of normality...it’s not bad though. Everything changes. Xxxx
Ronson

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Reply with quote  #22 
I agree with others it might be extinction bursts - we have had several extinction bursts for behaviour the first at wr, then another one a few weeks later which seemed to be more about behaviours and we have had a couple others as well.

It is true that it gets much better - but recovery is slow and there are a number of stages - the stage we are at just now is a lifetime away from the horrors of initial refeeding but her eating is still scheduled and dependent on us. However we now have happiness and a semblance of normality. Don’t lose hope it will improve but it is often a step back before a big leap forward
Mcmum

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Reply with quote  #23 
Can I just ask, how long is it the norm to stick to the meal plan and the schedule? If it's years, that's fine. It's just that at our last camhs appointment they suggested being flexible around the schedule, but that was a disaster and obviously so after about half a day. We are pretty rigid here and that seems to largely work for my s but is this for the rest of his childhood??? Does it just depend? Does age matter? So my son and cm72's d and Tammy's child are all very young and I know there are other parents of young children. Any patterns? Sorry, cm72, not trying to hijack your thread 😔🙄
teecee

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Reply with quote  #24 
Hi McMum
My D is older than yours but I would say if adhering to the meal plan then fantastic. Once that is happening you can try tweaking in terms of mixing up and being more flexible when used to that. I would be surprised if you were using it for years as through recovery you tend to see the anxiety lessening with full continued nutrition. It may just naturally happen that intuitive eating happens.

Our D was doing really well sticking to the meal plan with continued eating but as soon as we took away to be more flexible we seemed to have issues. CAMHS are now investigating for autism which if positive would seem to make sense as anxiety lessons with structure in people with autism.
Mcmum

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Reply with quote  #25 
Thanks teecee. Camhs mentioned testing my son for autism too. We'll have to wait and see though I have to say, how he presents in a camhs session is very different to how he is at any other time! We'll stick with the plan, get through Christmas and try flexing later.
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