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gdawgs

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Reply with quote  #1 
We recently had our 1 year post treatment checkup for our son.  After their typical battery of tests, our son had the same results as he did 6 months ago at his last checkup, NO eating disorder tendencies, and no depression symptoms!  He is about 5 pounds lighter than they'd like, so they want us to add 500 calories per day to his diet.  Guess what he said.  "Yes, I can eat more!" He's been doing great and it totally back to his old cheery, spunky, mischievous self. 

On the day we went in for our very first visit at the eating disorder clinic(1/29/16), after meeting with several different doctors, etc. we were told that we needed to admit our son to the hospital for treatment.  His room was going to take a couple hours before it was ready, so they told us to go grab something to eat(try to get our son to eat) and then drive over to the hospital.  We drove around for quite some time, having our son look for a place where he thought he'd be able to eat something.  We finally came across a Chinese place that also had sushi, something he loved to eat prior to getting sick.  After ordering(I can't remember if he actually ordered or if we ended up ordering for him), he quickly went into a melt down.  Asking "what kind of oil are they going to use, what if they use too much, how many calories are in it..... you know the drill.  He then started crying and crawled under the table, where he remained until my wife and I were done eating.  We then made our way over to the hospital.

After this most recent checkup, guess what we did.  That's right, we went right back to that restaurant, we sat in the same booth, and our son sat in that same exact spot. This time he ordered with authority, and he chowed down like there was no tomorrow.

Are we out of the woods??? Who knows.  As long as he's at home with us, I think he'll be fine.  We worry about when he moves out someday, but we have a few years to go until then.

We are so thankful that we got our son back.  Best wishes to all of you who are in the battle, I know how awful it is.  Stick with it, there is hope!




admum

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Reply with quote  #2 
Wonderful. He looks so happy. Well done to you all on his achievement.
Mamaroo

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Reply with quote  #3 
Great news 😃, thanks for sharing.
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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.
tina72

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Reply with quote  #4 
You have done a very good job, congratulations!
Your son seems to be a lucky boy and I guess the girls will lay by his feet...[biggrin]
Thanks for sharing this with us, it is so helpful to see that there is a way out of this damn wood...
You give hope to all of us with this post.
Thanks.
Tina72
melstevUK

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Reply with quote  #5 
gdawgs,

Wow.  Fantatic news and lovely photo of your beautiful happy son!  Well done to both your family and your team, as well as to your s himself.

Can we clone your team?

I would be grateful for some basic information if you could share it with us.  What was his bmi at the point of admission?  Where are you based?  Your treatment team certainly understood the seriousness and acted fast.  I think your story clearly demonstrates how cost effective it would be the world over if all teams acted in this manner.  

How long did they keep him in hospital?  

How old was he when you first noticed something was wrong and how old is he now?

It is useful to have this data because we can use it for encouraging services to make improvements.

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Believe you can and you're halfway there.
Theodore Roosevelt.
gdawgs

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Reply with quote  #6 
Sure I can share what I remember. 
We live about an hour away from the Minneapolis, MN metro.  We used the treatment center at Children's Hospital.
https://www.childrensmn.org/services/care-specialties-departments/eating-disorders/

When we took him in, his BMI was 13.5 (he was 4' 8" and weighed 60 pounds). He had just recently turned 12 years old(he is 13 now). 
Hospital stay was 12 days, then we had outpatient meetings with his social worker(who works at the eating disorder clinic) weekly for a while,
then it dropped back to every other week, monthly, etc. 

We didn't realize something was terribly wrong until just a few weeks before he was admitted into the hospital.  We started noticing the typical symptoms, cold all the time, bad chapped lips and dry hands that wouldn't heal, losing hair, no energy, grumpy, etc.  He was eating about 400 calories per day, and it was the exact same food routine every day.  One day at school, a teacher sent him to the nurse because he looked terrible.  He was beginning to look a little yellow.  So we made an appointment with our family doctor.  Thankfully, our Dr picked up on what it was right away.  He had us make another appointment to see him a week later, told our son he needed to up the food intake, and gave recommendations on food to eat.  A week later we went back, he lost more weight, his heart rate was at 40 bpm.  Our Dr.  then said he had been doing some consulting with other doctors during the week and told us we need to get him to a treatment center for eating disorders.  He then said he would call us later that day with more information.  He did call later, and told us that he had been talking with the Drs at Children's Hospital.  He said they could get us in for an appointment the next day, and basically said we NEED to take that appointment.  I called the eating disorder clinic, told the receptionist what my Dr told me and asked to get in the next day.  She said that was odd because none of the Drs would be in on that Friday, so she made us an appointment for the following week.  About an hour later, she called back and said that Dr. Brandenberg had talked with our Dr and that we need to come in Friday.  So we did end up going in that following day.  And he was admitted into the hospital that same day.

Our son came out of monster stage quite quickly, probably because he hadn't been at a low weight for all that long of time.  He went into the hospital on Jan 29, and I think his last bad food related fit was at the end of February.  It took a few more months for this old personality to shine through, but things were much easier after the feeding demon subsided. 

Looking back after the fact and talking it over with our son, we believe we saw his first symptoms in November of 2015.  I remember going through McDonalds because he wanted hot chocolate.  He ordered it with no whipped cream(which was very odd).  But they messed up and put whipped cream on it, he flipped out and wouldn't drink it. Then it just went down hill from there, but it was mid January 2016 before we realized something was really wrong.  He told us later that he always slept on the couch because he didn't have enough energy to go downstairs to his bedroom.  If he needed something in the basement, he would often times have to crawl back up the steps.  It's hard to believe that your kid can waste away right in front of you, and you don't even know it's happening.

Let me know if there is anything else you'd like to know. 
martican

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Reply with quote  #7 
gdawgs - stories like yours keep us going! thank you for sharing, you have done an excellent job! Sounds like your son's Dr. was very alert and diligent as well. Not knowing your child is wasting away - I know that awful feeling too. It happened in winter for us, and didn't realize how bad it was until I had to supervise her showers in the hospital. 
Sushi is my D's favorite food too [smile] We are down to one fear food - meat - and I also dream of having her photo with a hamburger in her hands with no worries. 
Is your son in charge of some of his meals? 
gdawgs

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Reply with quote  #8 
Our son is in charge of all his eating and has been for a long time, probably close to a year.  He now acts like a normal teenage kid who does not have an eating disorder.  When he's hungry he eats.  When he comes in from a bike ride, he's scrounging around looking for something to eat.  He has no fear foods, and doesn't care about nutrition, calories, fat, etc.  

We still keep an eye on things though.  If we're eating dinner and we think he didn't eat enough, we'll tell him to take a little more, and he will.  It sometimes irritates him a little bit and he'll say "why do guys still worry about me, I'm fine". I we just tell him that we don't ever want to have to live through that again.  And he doesn't either. 

One fear that we have, is that when he gets stressed out or angry about something, one of the first things he says is "I'm not hungry".  Which I think is normal for just about anyone.  If I'm stressed or upset, I lose my appetite as well.  I actually lost 10-15 pounds from all the worrying while our son was sick .

So, when he goes off to college someday worries us.  If he gets stressed out and quits eating, we could see a relapse.

A terrible story I got from a co-worker(who's son went through a bout with anorexia, and their story is almost identical to ours.  Son was the same age, went to same clinic, recovery time was the same, etc.).  He knows a family who had a son that battled AN at the same age as our sons.  He recovered and was fine...  until he went off to college.  He then had a relapse, and didn't make it through that.  So that's our biggest fear.  And that's why we will always keep an eye on things.
gdawgs

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Reply with quote  #9 
Oh, a few more odd behaviors when he was sick that I forgot to mention.  I'm sure most of you have seen similar things.

1)  A complete fascination with anything food related.  It consumed him.  He'd study nutrition labels and food facts.  We could walk through the grocery store and he could tell us how many calories, fat, etc. was in just about everything.  He'd watch YouTube videos of people eating.

2)  He loved to cook.  He'd research recipes and then cook them.  He'd leave me messages on my phone.  "Dad, I found a great recipe.  On your way home from work can you stop at the store and pick up________.   But he'd barely eat any of it.  But when he watched us eat it, you could see his eyes light up with a great sense of achievement.  He'd bake cookies every week for his Sunday school class then he'd watch them eat them with great joy.  But he never ate one.

3)  He woke up earlier and earlier in the mornings on his own(no alarm clock). Normally he'd get up at 6:00 since they have school at 7:00.  Then he started waking up at 5:30, then 5:00, then at the end, 4:30.

4) Exercise - He did lots of exercising.  It was winter at the time, so he couldn't go out for bike rides or running.  Dance Dance Revolution was his exercise of choice. 
atdt31_US

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Reply with quote  #10 
This is an amazing story of recovery! Thanks so much for sharing. Are you willing to share what his historic bmi had been in 2013-2015 time frame, well before he started restricting? Also, what is his current bmi? Truly inspirational -- great job to your whole family!!!
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Mom of either pre-diagnosis or non-ed underweight 11 yoa kid here to learn how to achieve weight gain.  BMI steadily in the mid 12's for nearly her entire life.  Born 2006.
gdawgs

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Reply with quote  #11 
I'm not exactly sure what his BMI was before, but I think he's typically in the 10-15 percentile.  He's always been quite thin.
Right now his BMI is at 16.8, which is lower than we want.  Which is why we're adding 500 calories/day(or more) and starting to keep a closer eye on things again.
He's in a massive growth spirt, and he's very active in the summer with lots of swimming and biking.  So we have to be vigilant to add a few more
pounds.  And he's good with that. 
Playball40

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Reply with quote  #12 
That is great news - I'm so happy for him and your family.  He is really a cutie!!
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Caroline
melstevUK

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Reply with quote  #13 
gdawgs,

Thank you very much for all this detail.  It really is fantastic that you have got such a great recovery in a relatively short timescale.

You are right to be concerned about later, if he ever goes away to college, but you can educate him and prepare him for that.  Also, it is worth being aware that the illness may 'kick back' whenever another growth spurt takes place and you are not ready for it - often this is an indicator that he needs more food.  Right now there seems to be a good relationship with his appetite and hunger but right now he is in a great place and cooperative and you will have the 'spidey sense' when things are not quite right.

In terms of physiology - if it is his normal reaction (like yours) not to feel hunger is angry/upset/stressed, he will simply have to learn to eat through all these difficult times.  It is quite common for at least one parent to have a response to stress with a diminished appetite.  I am the opposite - I want to comfort eat if I am having difficulties - I do not lose my appetite at all.

Your GP and hospital did a great job and are to be congratulated on providing such effective treatment.

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Believe you can and you're halfway there.
Theodore Roosevelt.
toothfairy

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Reply with quote  #14 
Gdawgs,
What a fabulous story & update.
Thanks so much for dropping by to share this.
It is really very interesting & uplifting.

I appreciate you sharing all the facts, & I thank the other posters for great questions here too.

It is just wonderful to read of the speed that the illness was picked ip on & treated so well & promptly.
So happy for you all,
Best wishes for the future
Xxxxxx Tooth Fairy

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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.
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