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FearlessMom Show full post »
You can do this. X
Courage is not the absence of despair; it is rather the capacity to move ahead in spite of despair
FearlessMom...this ED battle is a marathon, not a sprint.  You have got to take good care of yourself, in order to be strong enough to wage the battle for your son.  I know you can do this too!  Hope you can do something lovely for yourself today....and I feel confident that you will be able to help your son with support from your team.  Gather your resolve and your reserves, and follow up with UCSF and team on Monday.❤
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
I have a bunch of thoughts you can take or leave.

The fact that he is refusing to get on the scale probably indicates that his weight has been going down. He may be doing something to lose weight, like purging, laxatives, secret exercise, hiding food or tampering with the Ensures. This can be very difficult to detect and eliminate. Or it may be that he simply needs more food. In any case, if you don't know for sure that he's gaining, he's probably losing, and that means he needs to eat more. If he knows that he will definitely be given more food if he refuses to be weighed, maybe he will agree to being weighed. (You'll want to make sure that he isn't manipulating his weight, though. Gowned weights after voiding, check specific gravity of urine. More steps are sometimes necessary, but that's a start.)

Could you try working with the school nurse to get the weight? She could call him in to the nurse's office and, when he gets there, tell him they need to check his vital signs and have him hop on the scale. The school might be willing to tell him that he cannot attend school unless his weight is monitored, since it would be unsafe, just like it is unsafe for a child to attend school without vaccinations. A letter from the treatment team might help with this. If you think he might refuse to go or run out of school if he is called to the nurse's office, they could have the vice principal or a school resource officer, aka police officer, escort him to the nurse's office.

We worked closely with my the nurse at my daughter's middle school, who was very informed on mental health issues. She was our primary contact at the school and conveyed to the rest of the administration that they needed to follow our lead. For instance, when she first came back to school, they gave her excused tardies if she was late for school because I made her finish breakfast first. When this got to be a pattern, I asked the school not to count these as excused tardies anymore and to give her the regular punishment (detention) if she was late. The school was happy to tell her that, and that stopped the stalling over breakfast.

Another approach would be to call his bluff on agreeing to go to residential. Any residential program will require a medical workup, including weight, before they admit him. Schedule a doctor's appointment and tell him you need the workup for the residential program. You can tell him you're considering which to do, and you'll need the workup for either UCSF or the residential program. 

Alternatively, could you push harder on getting the weight at home, even if it means a big confrontation? Not let him leave his bedroom until he steps on a scale? Not let him go to school? Follow him around with a scale until he steps on it? Ask him to come in the other room for a minute [and get weighed]  when he has a friend over, so he doesn't want to make a big scene? You might want to talk it over with the therapist, though, before deciding to push harder on the scale than you are on meal completion. You wouldn't want to weighing to get in the way of the eating, but you might find that you need to push harder for both. Also, it might lead to escalation: he could become violent or run away. You might want to put away anything dangerous and be prepared to call 911, maybe talking to the police first and learning how they would handle this type of call (young teen becoming aggressive or running away due to mental illness). 

I know it's very hard to turn this ship around, so focus on just one thing you would like to change. In your first post on this thread you said he did much better with the meds, so I would be focusing on getting him to take the meds. You can tell him no school, no phone/ internet, whatever incentive you need until the medication is taken. Good luck!
D became obsessed with exercise at age 9 and started eating 'healthy' at age 9.5. Restricting couple of months later. IP for 2 weeks at age 10. Slowly refed for months on Ensures alone, followed by swap over with food at a snails pace. WR after a year at age 11 in March 2017. View my recipes on my YouTube channel: https://www.youtube.com/channel/UCKLW6A6sDO3ZDq8npNm8_ww
Hi, All,
 Thanks for all your support, I would like to share some updates:

I was able to put him on medicine 1l0 days ago after offering him school Hot Lunch so he could eat with his friends and his twin brother, with school supervision, I see him start getting better now.

Scale: He weighted himself at home everyday started 2 weeks ago, I saw the number couple of times, he is 4'11", 110.5 lb now (he was 113lb with 4'10 in June).but he still refused the scale during FBT.

UCSF: We were turned downed for Oct because his non-complies for the scale, UCSF wanted to see him comply to the scale with our FBT, I have to plan the Dec program.

I really think our FBT therapist out of ideas and hard to support us, my s does not buy her recommendations, but hesitated to switch, not sure if I could find a better one...

I found a new good dietitian, saw her one time last week, seems promising, going to meet her next week to see if she could come up a plan to let him eat more and gain some weight. 

Still lots of issues need to fight... grateful I could come here to cry and feel supported...

12 years son, diagnosed AN 03/18, ip one week, residential 5 weeks, IOP 7 weeks, doing FBT since 11/18.
Hi Fearlessmum
im coming in a bit late to this thread but just had a thought 
from the very onset of my d illness someone advised me to get rid of our home scales,so I did
this in effect took the stress off me of weighing my d or her continually weighing herself 

intitially she was weighed weekly at the GP until he stopped getting off his lazy a$&& to check the scale 😡
then once d was hospitalised they weighed her and no one knew her weight, not me not her, only the head of her treatment team it was NOT discussed at all
at the time it was hard not knowing but looking back it was in fact the best way as there no arguing,  no stress, no changing of meal plan

what was served up had to be eaten, simple as that, if refusal, she would have it via NG tube 

perhaps you could accidentally “break” your scale then your  team  or GP would have to weigh (just make sure GP gets up and checks and make sure no weights etc in pockets, down to underwear is best) as part of their ongoing assessment of his health??

once OP my d was told that by law and their  duty of care that they had to weigh her each appt in effect to know her state of health 
this worked for my d (she was extremely ill though and very rigid in her thinking) and I believe her team where one step ahead of her ED

only recently - 2 years down the track does my d  get told her weight 
I still don’t know it ☹️
But she knows she goes straight back into IP if it drops to low 
Hi fearlessmom,
Just sending you positive vibes from another mum who needs to take control back from her s! Woken up this morning knowing today is the day.  I have to say no.  You will eat.  I have to battle for better meds and more food and less exercise and I know the storm that will come.  Time to fasten down the shutters and find strength for battle!
You can do this.  We can do this job!!
Thank you for updating how you are getting on. It must be so frustrating that FBT and UCSF don't seem to have ideas about how to move forward. I do worry that there was yet again a negotiation to have him start on medication, particularly as it means moving to an unsupervised meal. At the same time if he is eating better and other trends are good it may work out well. 

As for him weighing himself, it sounds very much like this is fairly severe oppositional behaviour. He clearly can weigh himself fine, but is pushing everyone's buttons and manipulating all by not weighing himself. I agree that the idea of getting rid of the scale is one option - he can only find out his weight at the therapist. We just took the battery out. 
For my D weighing herself did drive a lot of behaviours and once she had no  idea of her weight ( we also blind weighed for a while) we got to the first stage where she could eat at bit better because there was no response with a scale. 
D diagnosed restrictive AN June 2010 age 13. Initially weight restored 2012. Relapse and continuously edging towards recovery. Treatment: multiple hospitalisations and individual and family therapy.
Hi, All, thanks for your reply and sharing your ideas.

@Foodsupport_AUS: You were right about the him, he can weigh himself but manipulating all using the scale, I let him weigh in the begging after he refused the scale in FBT, he said he does not eat.

I will get rid of the scale at home, now he manipulated me again for his medicine, he tried to drive me crazy by going bathroom immediately after meal/snacks, but refuse me supervising him, if I want to watch him, he would not take medicine for that day, and it happed last night. I was so frustrated after giving him
consequences liking taking away his phone or cancel one week's school hot lunch, still not taking... I think the medicine made him anxious about weight gain and manipulation, he maybe tries to find excuse for not taking medicine....

Like Scarlett said, I have to battle for medicine and more food, no easy way out, my h told we could not let my s run the show, he is controlling all including family and treatment teams, I will keep us updated...

12 years son, diagnosed AN 03/18, ip one week, residential 5 weeks, IOP 7 weeks, doing FBT since 11/18.
Sending you a big hug, and strength as you try to move your s forward.  I'm glad your h is on board with the idea that your s cannot 'run the show'.  Is your h able to help you with requiring your s to take his meds and to eat what is necessary to reach nutritional rehabilitation?  

Agree that 'losing' the scale at home is a good tactic to try.  I'm really hoping that you & family can make it to the Dec UCSF program.  I think it would be incredibly beneficial for you all.
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
sk8r31, thanks for sending your support!

My h is able to help about the medicine and eat, he is onboard for all these issues, and he wants to let him take care of my s, playing tough, he said I have been too weak and let my s control me , I wanted to give my s few more days for the medicine taking effect ( he started the meds 10 days ago) next week sometime, so it might be easier for us to fight all his issues. 

UCSF team is nice for allowing us to use our Aug deposit for Dec, they wanted my s comply to FBT's scale and vitals checks before the program, it would not help us if my s does not comply FBT,  so we have 2 months to work on his complies now... 
12 years son, diagnosed AN 03/18, ip one week, residential 5 weeks, IOP 7 weeks, doing FBT since 11/18.