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bks76 Show full post »
half_smile
Hi again.  Sounds like you're doing a great job despite the difficulties of the obsessive questions. I don't have much input on your questions from January 8th other than:

To question 2.  We saw weight gain on a reasonable amount as well - we found a volume which seemed appropriate for her gender, age, activity and kept the amount steady resulting in a steady weight gain.  Our d was not too far underweight to begin with and we cut out all activity.  WR came fairly quickly.  Having said that, recovery - in terms of mental health/body image - has been very difficult and slow. 

To question 3.  In our experience, we did not see any "clarity" with WR - it has taken us 2 more years of intensively working on the ED and we are finally getting there.  Our D still does not like her body but she is starting to accept.  I say this because we thought we were in a good place about 2 months after our D was weight restored and we let our guard down.  ED noticed and took advantage of the situation - our D ended up having all sorts of new, more secretive symptoms.

To question 4:  No tips unfortunately.  After awhile, we stopped engaging in these types of questions - sort of said "We don't know.  Our goal is for you to live a long, happy, active life.  Talking about what your body should or will look like is not a helpful thing to do right now."  I did not find it easy to redirect the constant questions.  There are lots of people on this site who seem to have a way with words...maybe someone else has ideas.

On the positive side - - despite it being a long harrowing road, I am beginning to see that it does get better.  I hope your journey is smooth and quick.  You seem to be doing a great job.
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quillingbee
My s was diagnosed at 17 yrs with RAN. Also a soccer player. He is 20 yrs old now and in recovery. Goes away to college and has maintained ok on his own.

We did FBT and we did not discuss calories, quantities, nutritional values, his weight, etc with him at all. He was not allowed water, only caloric beverages and still is not supposed to drink water much.

His heart rate was low and he was also ortho static. Has your son been checked for that?
My son was not allowed to return to sports until he hit a certain weight (which he did not know the number nor what his weight was during therapy) and also until when his heart rate reached a certain level. We let him know that number since it was his heart and we could say his heart was not healthy enough yet. He was to drink at least 80 oz of caloric liquid a day and at least 8 oz before bed since heart rates drop when sleeping.

He also was to gain only around 2lbs per week to carefully readjust heart rate.

I kept track myself the calories I was giving him but never gave him any clue what that number was. Any time we adjusted caloric intake he was not aware. We just said this is what you need to eat.
Remember when you talk numbers, body image, abs, etc you are talking to the ED, arguing wth it and empowering it.
You can agree to give him his yogurt but not in the container. Give it in a bowl or cup as part of a snack or meal but accompanied by other food so he can't figure out exactly how much is there or what brand, fat level etc it is.

At this point giving him food choices is BAD. Like you said, it is too much conflict in his head as to what is in each item and comparing things. Check out the info on Magic Plate here. If we went to a restaurant we told him what he must order.

There were some very helpful videos online, cartoon style, that showed how to "argue" with them about eating. I don't remember how I found them but it gave great help in responding to ED talk.

Don't engage in trying to rationalize with him about what he gains, the end plan, his abs, etc. He can't think rationally at all about that now.
One thing that really helped us was ANYTIME the conversation has to do with food, eating, exercise, the body physically, you are talking with the ED, not normal teenage stuff. You do not negotiate with them on anything in that topic. ALL OTHER AREAS are treated like normal teen stuff....homework, TV time ( no food shows) social life other than participating in sports, etc. you talk to him like a normal teen. Freedoms and consequences non food related are discussed/argued/negotiated like normal irrational teenage stuff but there is no arguing/negotiating with ED stuff.
Constantly check yourself to distinguish, is this ED I'm talking with or my teen s? He can't tell you the difference and you don't even need to address it to him as who you are speaking to. Just know in your head which one you are dealing with and respond accordingly.
We could negotiate curfew or activities he wanted to do but there was no negotiating changing curfew/activities so that it missed a meal or snack. All meals and snacks were in front of us. If he wanted to go somewhere we might show up and meet him at snack time, have him come to the car and eat, then resume his activity with friends. We showed up where he worked and watched him drink a milkshake or eat something we brought.
He did not want others to know about his ED so we just said he needed to gain weight and eat regularly because his heart rate was whacky ( truth but not complete diagnosis).
We were in FBT about a year and although he is recovered and WR, we still check his weight periodically ( I can tell just from looking at him) and discuss how his maintenance is going. I no longer am talking to ED and we can talk rationally about how he is doing.

Keep reading all you can and learning. We kept all ED related materials out of sight. And don't let him get involved here or other online sites. It just adds fuel to his already out of control fire.
Bee


Bee
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Colleen
Great post, Bee.

I think this is the video you're thinking of:

Colleen in the great Pacific Northwest, USA

"What some call health, if purchased by perpetual anxiety about diet, isn't much better than tedious disease."
Alexander Pope, 1688-1744
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quillingbee
Thank you Colleen, yes that is one of the videos I was thinking of! Those helped me learn how to engage but not get sucked into an endless cycle of trying to refute ED's every argument with reason. Although my s mostly cooperated and never was disrespectful these helped me better frame my responses.

Also to the original post here, it was many many months before we even gave him a choice about what foods he would like to try to eat. If we were making the decision we were over ruling ED and he could be free from owning the defying of ED. If we gave him a choice it gave ED power to over rule and blame him for the choice. Other wise he could blame us . So we would say Here is your meal and watch him eat. We stopped asking what flavors he wanted, etc. Choices were extremely difficult and caused a lot of internal anxiety.

We lived the motto "life stops until you eat" and the hardest part was restricting his athletics. I would not let your son return to that personally even if he gets approval. Needing to gain 20lbs at least is going to be hard enough without the added exercise. And my son later told me that playing sports gave him the thoughts stronger about how much he was burning off and how that he was earning what he coukd allow himself to eat by offsetting the intake with the sports. It actually defeated the progress we were trying to make over the mentality of the ED. We thought letting him play gave him a normal part of his life back but it gave ED more power over his thoughts. "Luckily " he got I jured playing and was unable to play and we didn't have to make that decision based on the ED but we didn't know at the time what a blessing indisguise that injury turned out to be.

Bee
Bee
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bks76
Seabird, Bee, Colleen, Trusttheprocess, Torie...EVERYONE thank  you all so much for sharing your experiences and wisdom.  This forum has been so unbelievably helpful and you are all very generous to help.

The current state is:
1.  S did return to soccer this week.  I hear the concerns.  I don't know yet what is right, but I do know that he, doc, therapist and dad all think it's good.  He did say that he was faster and had way more energy.  It breaks my heart when he talks about how he felt his body refusing to move at times to conserve his limited resources.  And scary when I think of his heart.
2.  His HR has been great (70s), his liver enzymes normal.  I congratulate him on doing such a great job healing his body.  
3.  He gained OVER (3 lbs in a week, not 2)what he is supposed to, and the DR has cut out the "extra" 500-600 he was eating to accommodate for sports.  We still give him food before and after to fuel/refuel, but total for day is around 4000 instead of 4500.  I am actually very surprised he is gaining so quickly on that.  We will reevaluate this week, I keep thinking the gain may slow down.
4.  He continues to be totally compliant with eating everything I give him, including shakes with ice cream.  Did complain when I added HWC to milk for cereal, but ate it. He knew I added it by the look/feel/taste not by me telling him.  Eating without problem the lasagnas and casseroles and all that mixed up food that gave him big problems before.
5.  I met with his PED this week, and reviewed historical growth curve.  Can't say of course if he will grow taller.  Height had slowed between 14-15 and then stopped between 15-16 (but this coincides with year of restriction.)  PED agrees returning him to between 75-90% and keeping growing until adulthood on that curve.  Which lines up with what ED doc said.  He's near the low end of that, and we are shooting for more gain to get him solidly in that range.  The PED did not charge for the visit because he said he learned more from me that day!  (and I have more teaching to come, I let him know that too!)
6.  Son feels he is close to weight restored now (he's at his highest weight historically), and is pushing for us to slow the rate.  His thinking is that he will be able to better maintain his abs if we slow.  I don't think this is true, so we try and minimize talk of rate.  
7.  His ED obsession on his abs is worse than ever, by a lot!   And he does not believe these are ED thoughts.  He says he worked for years to have abs and now I am taking them away.  He repeatedly asserts, if he loses his abs he will have to "cut" fat and then bulk again, in a "healthy, not ED way, because I am done having an eating disorder and I wont want to do that again."  Umm, yeah.  Cause teens without EDs talk non stop about their abs.  We try and get him to redirect,  point out that he's obsessing, try to not engage, tell hime we love him...but it just goes on and on and on!
8.  He did have a very kind moment when he thanked me for helping him and for doing so much research and work to make sure we know as much as we can to help him.  
And so we go on!  Thanks a million times over for all the help and guidance.  Even in the worst of moments I think of what I read here, and all the families who are winning this battle,  and it gives me the strength I need!  


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Seabird
BKS76  it makes me exhausted and is quite overwhelming to think of others going through what I went through.   I still find it very difficult to mentally process what we went through and how hard we worked to turn it around.  And how I really thought the odds were stacked against recovery.

However - a glimmer of hope for you to hang onto - the exercise compulsion was incredibly strong, unrelenting with my S.  His journals from the time record his obsession with his exercise routine and the astonishing number of reps he was pushing himself to daily, from the time he bounced out of bed onto the floor doing pushups every morning.

Our clinical team told us there was virtually nothing we could do about that compulsion.  I agreed but kept trying to limit it.

Now, 16 months post WR, my son has a part time cleaning job, and cleans sometimes at local gyms.  I wondered if that would trigger an exercise urge so recently I plucked up courage to ask him how he felt about being in a gym.   He said, he couldn't see what the point of doing all that exercise is.   It just doesn't seem to interest him any more.

He is totally into his music currently - making music at home with various instruments, recording equipment and his computer.  He is pouring all of his intensity and energy into that.  

So my S is a clear example of the massive exercise compulsion that accompanies the ED and starvation, just dying out of its own accord with brain recovery.   Other people suggested this might happen, and it has.    We are now on the "weaning" process with decreasing dose of Sertraline and that is going well too. 

Yes your son can win this battle with your help, just try to focus on the positives with your son and get him interested slowly in other hobbies if / when it is possible.  

all the best 
Seabird


Mother of 20 y.o. male diagnosed at age 16 with RAN, exercise compulsion, anxiety, depression & SH, FBT 4-5 mths to WR, WR now 3 yrs; suicide attempt 4-6 wks after WR,  IP 4 weeks.  Steady progressive recovery over past 3 years including support from psychologist on general wellbeing. Slow steady steps to success!! 

When your last bow is broken and your last arrow spent, then shoot, shoot with your whole heart
 [Zen saying}
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trusttheprocessUSA
Just WOW! is heart rate is good his growth steady....just wow! He thanked you - sweet boy, hero mother. 

Now the trick is to keep him from losing more than 5 lbs from where he is. EVER. As he grows that 5 lbs moves up with him.

Since you report he is at the low end of his normal growth as per his growth chart I'm thinking this ab talk may slow down as he reaches HIS correct weight for height. 


well done well done well done!!!
Son diagnosed @ 12.5 yrs old with Severe RAN 2/11. Co-morbids - anxiety, Active restriction for 3 months. He stopped eating completely 2x. He needed immediate, aggressive treatment from a provider who specialized in eating disorders, adolescents and males. We got that at Kartini Clinic. WR since 5/11. 2017 getting ready to graduate slipping lost 8lbs. Fighting our way back.
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