F.E.A.S.T's Around The Dinner Table forum

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FearlessMom
hi,All, 
 my s was on Zoloft and Abilify for one month, this July, he was much better that time, then after he gained couple of ponds, he refused taking them, and I see the big difference now, another issue he refuses letting doctor to get his weight, we can not go to UCSF since last month all because of it, even I have payed the deposit and insurance all good.
  Our FBT doctor said she tried her best, and my s is really stuck here, I tried incentives for him taking meds and step on the scale, not working. I really want to go UCSF,but they require his current weight and he needs to be able to step on the scale per request, 
please advice.
12 years son, diagnosed AN 03/18, ip one week, residential 5 weeks, IOP 7 weeks, doing FBT since 11/18.
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sk8r31
Hi FearlessMom...sorry that things are 'stuck' with your s at present.  It sounds like the meds were able to 'take the edge off' anxiety for your s, so that he was able to eat what was required this summer.  It was the same for my d; she was so incredibly anxious, and the meds helped to 'dial down' that anxiety enough that she could progress well with nutritional restoration.  Our d was a little older, and the incentive of going away to university, along with some financial incentives for eating fear foods, moved things along for her.

Perhaps we can help to 'brainstorm' some ideas to try.  I know you have been working so hard to move your s forward with meds and weighing, in order to attend the UCSF 5 day program.  What does your s like to do?  Is he passionate about anything?  How does he spend his time at the moment?

I want to stress as well that you need to take the very best care of yourself as you can.  Parenting a teen with an ED is hard, hard work.  I hope that you are able to spend at least a few minutes daily doing something that will 'recharge your batteries'.  You are doing hero's work.

Sending warm support to you.
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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tina72
With the meds: can you simply put them into his food like you would do for your dog if it needs to take meds?
A 13 year old should not be allowed to refuse meds at all. If he had cancer and refuse to have his chemotherapy you would also try all tricks to make him take the meds...
Scale: I think he simply wants to avoid to go to UCSF with this blackmailing. He thinks no scale no UCSF. Can you ask them there if they can take his weight when you arrive? Did you already try to offer him an incentive for getting on the scale (I am sure you did, just asking)?
Maybe it changes something when you fake that UCSF does not need his weight and will weigh him anyway there, maybe then when this threat is without consequence he will think about taking the incentive and get on the scale?
Keep feeding. There is light at the end of the tunnel.
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scaredmom
It sounds quite stuck right now. 
Just thinking here as an idea popped into my mind. Your son is very comfortable with his team. I wonder if you got a different person who he does not know at all to come in and just tell him he  will be weighed/ ‘get on the scale’ and you should not be there for that interaction.  It may shake up the dynamic a bit. When my d is around strangers that have authority she complied better as she has not had  time to try her tricks on them , yet new people new scenario maybe??
When within yourself you find the road, the right road will open.  (Dejan Stojanovic)

Food+more food+time+love+good professional help+ATDT+no exercise+ state not just weight+/- the "right" medicine= healing---> recovery(--->life without ED)
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FearlessMom
Hi, sk8r31, thanks for your reply and share your story, thanks for being there and support !
my s loves video games, fun day at park riding Roller Coaster, fun day at beach tide pool,  badminton class outside of his school  with his brother ....I offered him all of these , he still gave up all the incentives I offer.
He does not get weighted because he is scared that we have to let him eat more, bigger snacks or more Ensures, he still takes Ensures when he refuses "big portion" plate.
I am so exhausted, angry, how ridiculous his thought, the only way I am thinking now is to get him in ER, but he said he still refuses to be weighted even in ER...

12 years son, diagnosed AN 03/18, ip one week, residential 5 weeks, IOP 7 weeks, doing FBT since 11/18.
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tina72
What about authorities? I like scaredmoms idea of someone else to weigh him. Maybe the doctors in ER will do it and he will not dare to refuse? They also may have some tricks like a chair or a table with a scale inside? Can you phone them and aks for that?
Another - maybe crazy - idea: does your local police have a mental heath officer? Some police departments have special trained officers. He might not refuse to get on the scale if a policemen asks him to do it.

They are all afraid of the scale because they are afriad of the consequences if they lose weight. But they all need to learn that being weighed is not negotiable. Did you try blind weighing? Does he know his weight and gets to know wether he has gained or not?
Keep feeding. There is light at the end of the tunnel.
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sk8r31
FearlessMom, I really feel like this is a situation where 'thinking outside the box' is going to be key.  Trying different strategies to see what might work for your particular situation, and then trying something else if the first strategy is not successful...and that takes time, patience and perseverance.  Being in the best possible shape yourself is so important...taking time to manage your own stress and care for your own mental health...whatever it takes to help you manage for the long run.  Being as kind to yourself as you would be to a friend who was facing a similar challenge.  It is hard to prioritize our own needs when we are trying so desperately to help our loved one.  But you simply must take good care of your own physical & mental health as well.  Sending hugs❤

And thanks for sharing the activities and interests that your boy so enjoys.  I know you have tried to use these previously as incentives...I wonder if there are some small steps that could incorporate these things to help you guys get 'unstuck'.  Perhaps other forum members will have some ideas....

And both tina & scaredmom have offered the idea of using 'authority' figures to guide your s, and to help specifically with weighing.  This worked well for my d too...she responded better to a doctor or teacher or other 'expert' better than she did to me...so rather than feel frustrated, I used that to my advantage.  And the added benefit of saying 'this is what the doctor/therapist/teacher wants you to do was very helpful.  

Sending warm support.
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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FearlessMom
Thanks Tina,scaredmon and sk831 for exploring the ideas. 

Medicine: I tried to put his medicine in his Ensures for one month then he found out last week, the medicine ( Zoloft and Aripiprazole --Abilify) is very bitter, I tried to put it in his drink after he found out the Ensure, he tasted the bitterness and refused to drink it, I think it is hard to put it in other solid food as well.

Scale: As Tina said he refused the scale because of weight loss consequence, he refused the scales in weekly FBT, in physician office for the physical exam. 
            I will check with the treatment team for the chair scale, even they told him they will keep his number between him and treatment team without letting me know.

UCSF:  I have asked them if we could go without the scale, and they said since they need to check his weight 3 times during the week, they need him to be able to step on the scale when asked, if he is not able to do it, the program may not help us a lot. 

  We start FBT in last Nov, always open weight, he knew his weight and growth chart, he was ok for it even when he was gaining but knowing he is within his target weight, thing changed after he lost 10lb in a bad residential program in July, then we back to FBT, our therapist weighted him and told us that his weight was too low, he needed to eat more food or take 2 and 1/2 Ensure for supplement, and he started refusing the scale next FBT session, so we do not have his weight since Aug.


12 years son, diagnosed AN 03/18, ip one week, residential 5 weeks, IOP 7 weeks, doing FBT since 11/18.
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mjkz
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UCSF:  I have asked them if we could go without the scale, and they said since they need to check his weight 3 times during the week, they need him to be able to step on the scale when asked, if he is not able to do it, the program may not help us a lot. 


My daughter went through a phase like this too.  I'd give them the last number you have and go.  Quite honestly you will have more support there to get him on a scale than anywhere else.  You need to hammer out a contract that includes meds no matter what.  With my daughter her meds are as nonnegotiable as food.

I took my daughter to her physicians and they had a bed that had a scale built in.  She sat on the bed waiting for an appointment and got weighed without even knowing.  It was a thing of beauty was that bed with the built in scales.  All of a sudden it seemed I had backed off and she thought she wasn't get weighed but yet I knew to add more when she lost.  I don't know whether to this day she even knows how we knew.  The other thing you might do is tell him without a weight you have to assume he is losing and keep increasing his intake. 

I wonder if he would weigh himself if he had access to a scale.  You could get one that keeps track of weights and see if he uses it.  I wasn't above using peer pressure too so I had my daughter weighed in PE class once.  Teacher did the weighing, etc.
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FearlessMom
Hi, mjkz,

  Thanks for sharing your experience,  I will try to work with UCSF for that number and go, hope they take us, I also think we will get more support during the program.
 I will work with their school PE teacher to see if they could help. 
  This is a weird, depressing, exhausted world I have been living in since last year, never thought my life would land this land... 
  But I am so grateful for this forum, lead me, support me all the time... I think at some points many parents have thought of giving up and none of us really did it, the thoughts come and go, just it is so hard and we know we have to treat our children no matter how long it takes....
12 years son, diagnosed AN 03/18, ip one week, residential 5 weeks, IOP 7 weeks, doing FBT since 11/18.
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sk8r31
Hang in there FearlessMom.  You are so right that parents can be exhausted & overwhelmed and think of giving up....but....we do persevere.  However, we do need support for ourselves to get us through the tough times.  This forum is a lifesaver...literally.  But I think whatever support you can access on the ground is important too...whether that is speaking with a counselor, using meds (I needed to do that for a year when life was really tough), talking with a trusted friend, treating yourself to a bubblebath or a walk around the block or an adult beverage.  Something to help lift your spirits...listening to music or an inspirational podcast...or watching a funny tv show....
I like mjkz's idea of giving UCSF the latest weight that you have for your son, and just head there.  They will be able to help you with so much once you are there...amazing really.  And to think that there might be an exam table that can take weights...wow.  That is a gamechanger.  Every physician's office should have one!
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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FearlessMom
sk8k31, You made me crying ...
 I just feel like sometimes let him be that way, but never did it, alway keep fighting...
I sure will talk to UCSF team and plan for Oct program, hope they could give us exception for the weight, really hope they could take us, and our FBT Therapist insistent no deception like sneaking medicine or food, but I clearly my s going down steam after stopping medicines, he was able to match his brother’s intakes while he was on meds... and I see his weight also dropping , not sure how much ...
12 years son, diagnosed AN 03/18, ip one week, residential 5 weeks, IOP 7 weeks, doing FBT since 11/18.
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tina72
FearlessMom wrote:

even they told him they will keep his number between him and treatment team without letting me know.


This is really weird and no FBT standard that YOU do not get to know his weight, did I get that right???
HE should not know his weight. My d fought every single gramm of weight gain once she was near her target weight as long as she knew her weight. Once we started blind weighing we got her WR within 2 months and she never asked for her weight in the last 2 years...
No wonder he is totally stressed about the weighings....

YOU must know his weight. You are the person in charge for his intake and weight gain. How should you do that when you do not know what he gained last week?
Keep feeding. There is light at the end of the tunnel.
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FearlessMom
Hi, Tina, 
during our FBT, it had been open weight, my s knew his weight, so did I, the FBT Therapist saying that trying to get his weight when he refused since August.
my s wants to know his weight, he even tried to use scooter to measure his weight today, I think some change needed to break this situation ...
12 years son, diagnosed AN 03/18, ip one week, residential 5 weeks, IOP 7 weeks, doing FBT since 11/18.
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sk8r31
FearlessMom...sending hugs.  You need solid support from your team, and a creative way to move forward.  Let us know how your call with UCSF goes.  Then perhaps we can help you brainstorm as needed to help you, your son & family to move forward.
It is good to not only hope to be successful, but to expect it and accept it--Maya Angelou
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FearlessMom
sk8k31, thanks for being there all the time ...
I sure will keep us updated about UCSF and FBT...
12 years son, diagnosed AN 03/18, ip one week, residential 5 weeks, IOP 7 weeks, doing FBT since 11/18.
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tina72
FearlessMom wrote:
Hi, Tina, 
during our FBT, it had been open weight, my s knew his weight, so did I, the FBT Therapist saying that trying to get his weight when he refused since August.
my s wants to know his weight, he even tried to use scooter to measure his weight today, I think some change needed to break this situation ...


My d also insisted that she needs to know her weight but every weighing drove us crazy. Once I could convince her to change to blind weighing she was totally relieved and the stress was history. Maybe worth a try to ask the therapist to give it a try?
Keep feeding. There is light at the end of the tunnel.
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FearlessMom
Hi,Tina, 
 our FBT Therapist refused blind weight, I tried couple of times before., there is a big ED team, famous in US and around the world.she can not break the rule.but now she can not get his weight for over a month.
12 years son, diagnosed AN 03/18, ip one week, residential 5 weeks, IOP 7 weeks, doing FBT since 11/18.
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tina72
That is sad that so many FBT therapists refuse that because of the manual. I hope the new version speaks more about that. But even in the FBT manual blind weighing is recommended when the patient is too afraid to be weight.
I know that many parents from UK insisted on blind weighing although the therapists from cahms did not want it.

Anyway, it can not continue that nobody weighs him at the moment, so if open weighings do not happen, what other options does your therapist see then?

I had an interesting conversation about all that refusing in AN with a swiss therapist recently and he said something which might help you to act:
He said you cannot chose NOT to act at all. If a child choses not to eat that means someone else is in charge to get the food in, by tube if needed. Not acting as a child means that some other person - here the adult that is legally in charge - needs to act for him. The patient needs to see that if he does not decide to do x or y then someone else will decide for him to do that.

At the moment your son is able to avoid weighings totally because everybody in his surrounding seems to accept that this is his decision. This might be the case for a healthy child but not for a child with a life threatening disease. I am quite sure if your son had a appendicitis and would need surgery to get it out and they would need to know his weight to set the correct anesthesia they would make him get on the scale or find another way to do it.
It is needed to get weighed when you have AN. This should not be negotiated at all. If needed he must be forced to get on the scale. That is not nice but many things in AN treatment are not nice. I see no other option. Once he sees that they will take his weight if he wants that or not I am sure you will not need to fight for it again the next time.
Keep feeding. There is light at the end of the tunnel.
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Foodsupport_AUS
We had a period of time with my D where I didn't know her weight around a year or so.. She was blind weighed but part of her agreeing to blind weighing was that I also did not know her weight. I did get feed back as to whether weight was stable, falling or rising. To be honest, the number was not that important. Just like knowing the actual numbers of her pulse or blood pressure was not important. Rather it was important to know it was being appropriately assessed, that they were assessing for orthostatics etc.. She is now in her 20's again, I don't know her weight. I do know she is attending for check ups. I have not pushed for release of that information because I know how she is behaving and eating. . 

The biggest concern is his eating overall and need to have the right nutrition and the likelihood that his avoiding weighing is really about avoiding nutrition. Getting into a power struggle over weighing is less important than the power struggle that is happening about food. I am hoping that the team can come up with some ways to work around this. 
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.
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FearlessMom
Thanks, Tina and FoodSupport_AUS.

I am very frustrated now. 

1) UCSF: He told me he did not want to go to UCSF, then he said he will reconsider UCSF.
2) Medicine: He told me he will never take the medicine, I saw how much the medicine helped him last month, he said he will not take it even if I send him to residential program.
3) Scale:  I guess I will have to find a way to break this, as Tina said, this is not negotiable for AN. but I just could not find support now, I am going to ask if FBT office could force him to get the weight?
4) He relies on Ensure a lot, all because of portion, I will not let him take food less than 700cals ( 2 Ensures), his daily intake is i 2800 cals, he has been growing fast last few months, this amount even can not maintain his weight.
  Tonight during snack, he told me he never could not get him fell full, I was so happy to hear that, and ask him to add more, but no way to add anything "extra".

 I have no control on above issues now, very defeated... no FBT this week, has to wait till next week for FBT. 
12 years son, diagnosed AN 03/18, ip one week, residential 5 weeks, IOP 7 weeks, doing FBT since 11/18.
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tina72
My ideas:
1) It is not his decision. Tell him he will go to UCSF if needed if he wants or not. That is a medical decision and you are in charge to decide that as the parents and not he.
2) They are often scared about meds because in the negative AN sites they are told that weight can increase by meds (which is not true or we all would give our kids these meds). My question is: did you check he is reading in these sites? If not, please check that and cancel them if needed (or internet access totally if needed).
Why not give him the meds in his food without him noticing?
3) I would ask the FBT office what their plan is how to monitor his health without a weighing. They are in charge for his health and they must find a way to do it. It is their job to help you with that. He is not the person to decide that. Next time he refuses the blood test or the heart check and what then? Who is responsible if something really bad happens and he collapses? Ask these questions there. They do not seem to see how serious that is...
Another idea: why not ask the FBT team to tell him that his intake will be upped not matter what the scale says because he has grown? Maybe it would help when he sees that the weighing is not the cause for upping meal plan?
4) This needs to end also, a lot of kids here refused normal food and prefer ensures because they seem safe and the calories are printed on the bottle.
Try to serve normal food and leave ensure only as a supplement if he does not eat enough. First the normal food, then (if needed) the ensure in addition. He forgets to chew and to swallow and how normal food tastes like. Ask him to at least taste one teespoon, then a tablespoon, and so on...
Try to serve home made milkshakes instead of ensure. Tell him ensures are too expensive and that you asked what is in there and did it yourself. That will not work from day one but start with a shot glass and increase portion sizes slowly.
Serve the ensure in a glass instead of the bottle with the nutritional information on it. That makes it easier to change to homemade smoothies and milkshakes. You can get more in with homemade milkshakes. We had a milkshake and a smoothie every day and got 1000 calories extra with only these 2 drinks.
Keep feeding. There is light at the end of the tunnel.
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Mamaroo
Hi FearlessMom

Sorry you are struggling so much at the moment. It seems your son thinks he is in control, because at the moment he is dictating his treatment. He doesn't want to go to UCSF, he doesn't want to be weighed, he doesn't want to eat more than 2800kcal, he doesn't want to take his meds......you see the pattern here? It's going to take time and lots if effort to change this pattern. He needs to know where his treatment is concerned that you are in control. How do you take back control? By telling him that he's getting more food, not asking if he wants. By telling him he's going to take his meds and nothing happens until he takes them, no school, no friends, no tv, no games, no internet, nothing. He is not going to like it, he will scream, fight and break things, but his health comes first. You can do this. I used to be daughters' best friend until ED showed up and had to change my parenting style to show ED who is boss. Start small, think of one thing you can change today and work on it. Good luck and sending you lots of hug 🤗🤗🤗🤗🤗
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
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sandie
Hi FearlessMom, I found sitting down and writing up a “contract” based on the key issues for my D helped with my resolve when we were feeling stuck a few months ago. I used a template one from ucsd and got some input from family therapist. I never have shown it to D to date although she is aware of it. I found writing down what needs to happen helped me to focus and feel more in control/ more able to take control of situation. Big hug. Xx
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FearlessMom
Tina,mamarao,Sandie, thanks for your encouragement, I know I have to make those calls, meds,weight,UCSF, I just so exhausted to fight those on top of his intakes, his brrain is much better than this spring, the bad time only lasted 1-2 hrs instead of over 6 hrs if he was upset, 
Tina: i can not add meds in his food, it is very bitter, he would tast it,
I will talk to FBT team next week about those issues, I hope they could come up a plan as Tina mentioned it is their responsibility to monitor his weifgt and vitals...
I really need to take those  controls back, he will fight back, and we willl have some terrible times,and I fear those terrible times, I try to avoid the fight and he is controlling more ..
12 years son, diagnosed AN 03/18, ip one week, residential 5 weeks, IOP 7 weeks, doing FBT since 11/18.
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