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cryingmom

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Reply with quote  #1 
Hi there,
My 14-year-old s has been inpatient for about 3 months. He gained 10 kilo within the first 1.5 months and stopped. He's still 13 kilo underweight, but he only eats what he thinks is enough to keep him medically stable. He was NG tubed once because he didn't realize how soon he became unstable, but he still keeps doing the same for a month at hospital. The doctors can do nothing as long as he's stable. I'm frustrated because he is not gaining weight and he can't be discharged either. Please let me know anything I can do to help him out of this. Thanks!
Foodsupport_AUS

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Reply with quote  #2 
Welcome to the forum cryingmom. You don't say where you are. The fact that you say your son is inpatient but is not being required to eat makes me think he may well be in the wrong place. A good unit will insist on continued gain no matter what. For example when my D was inpatient if she could not complete a meal or snack on her plan she was offered a supplement. If she could not complete a supplement a NG tube was inserted and the supplement was given down the tube. The tube was kept in place for a minimum of three days. If meals could not be completed over that time the tube came out only 72 hour after the last incomplete meal. There was no choice. 


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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.
cryingmom

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Reply with quote  #3 
Thank you Foodsupport for the reply.We are in Canada. It seems children have more rights here than they should regarding their treatment. The doctors said there are nothing they can do if he’s stable. I know the longer my s stays this way, the harder for him to get back on track. I feel we are stuck here.
Torie

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Reply with quote  #4 
Hi CryingMom. Sorry you needed to join us here.

It sounds like your son is indeed being let down by these "professionals."  I'm not sure how to get him the care he needs in Canada, but I know we have Canadian forum members so I trust someone will drop by soon with some ideas.  

In the meantime, can you please tell us what changed between the first 1 1/2 months (when he gained so well) to the second 1 1/2 months (when he didn't gain at all).  That's not a progression we hear often here.

You have come to the right place.  This forum is what saved my d and oh so many others.  Hang in there. xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
cryingmom

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Reply with quote  #5 
Hi Tori,
My son was discharged after 1.5 months inpatient. Unfortunately when we got home, he was still very sick and refused a lot of meals and I was not prepared enough for this; so a week later when I took him back to the hospital for checkup as an outpatient, he was immediately admitted back to the ED unit. He kind of lost his hope and didn’t cooperate this time. He has been there for over three weeks and he gained 1 kilo in the first week and remained the same since then. He’s afraid of gaining more weight. He either refused half of his meals or purged. I don’t know what I can do to motivate him.
scaredmom

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Reply with quote  #6 
Hi cryingmom,
I am in Ontario. Where are you located?
It is so hard. I am so glad you found this forum. it saved my d's life! All I learned that helped me take care of her came from this amazing group. We are all here to help. Ask away.....
big hugs
Torie

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Reply with quote  #7 
Thanks, I understand a little better now.  It's really too bad they didn't provide you with better support at home or at least explain more about this vile illness.  IP to home is a tricky and challenging transition (going for Understatement of the Year with that one).  It's completely understandable that you needed more support - what is utterly baffling is how many of us have been let down so badly by the "professionals."  Ugh. 

It's pretty typical for a sufferer at his stage to be uncooperative and scared of gaining more weight.  They should be pros at dealing with that.  I wonder what kind of flexibility you have (if any) so far as changing to a different facility.

I cannot stress enough the importance of ensuring that he not purge.  They should not permit any kind of question mark associated with this - you need to KNOW that he isn't purging.  

(More below.)

Quote:
Originally Posted by cryingmom
Hi Tori, My son was discharged after 1.5 months inpatient. Unfortunately when we got home, he was still very sick and refused a lot of meals and I was not prepared enough for this; so a week later when I took him back to the hospital for checkup as an outpatient, he was immediately admitted back to the ED unit. He kind of lost his hope and didn’t cooperate this time. He has been there for over three weeks and he gained 1 kilo in the first week and remained the same since then. He’s afraid of gaining more weight. He either refused half of his meals or purged. I don’t know what I can do to motivate him.


They should have explained that it is not about motivating him; it is about requiring him to eat what he needs and providing competent supervision for at least an hour after every meal or snack.  It doesn't matter if he isn't motivated - nearly everyone here is or has been dealing with an ED kid who isn't motivated.  Sucks, but that's how this illness is.  The outdated thinking that the sufferer needs to be motivated is a bunch of bunk, especially with a 14-year-old child.

We will help you drag him back to health whether he wants to or not.

Please tell us a little about your insurance situation / your treatment options.

Keep swimming. xx

-Torie

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Kali

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Reply with quote  #8 

Hi Cryingmom,

So sorry you have to join us here but I hope you will find that there are very experienced parents here who can weigh in and support you.

Here is a link to the learning center where you can access more information about eating disorders and treatment.

http://www.feast-ed.org/?page=LearningCenter

As for now though, can you schedule a meeting with his doctors at the hospital and discuss what the plan is for your son moving forward and ask how you can help? 

Are there any things you can think of that he used to like to do or might like to do in the near future which you might be able to help motivate him with? 

When my daughter was in the hospital (for 3 months) they used a series of motivators to encourage the patients to finish their meals. When you first arrived you were restricted to the unit and as you completed meals and gained weight you could apply to go up a level and win more and more privileges with good behavior (eating and not purging). If you didn't gain weight and complete your meals, you could be dropped a level and be restricted to the unit again. Going out for a walk, going to a park with other patients, etc. Each level had more and more freedoms.  

Is there anything you can do to create a sort of reward system for his cooperation with eating? For example, he finishes all his meals for a few days and then you plan something special? My son loves video/electronic games, does yours? Does he have a device to play them on? Could that help motivate him? For example: He eats all his food for a week (or however long you think is appropriate) and gets a new game and some time where he is allowed to play it. What was he interested in before he became ill? Do you have a pet? If he eats could you bring his pet to see him? (maybe outside if they don't allow pets in the hospital) Just trying to throw some ideas out there...

Quote:
He either refused half of his meals or purged.


Can you speak with his team about increasing the time he is carefully supervised after meals and not allowed in the bathroom? Ideally, he should not be allowed to purge in a treatment facility.

There are a couple of other parents here, Deenl and Toothfairy, who have sons who became ill around your son's age, perhaps they might have some good ideas about day to day motivation for you. 

I found that visiting frequently and playing games together while she was in the hospital also cheered her up and got her mind off things a little. We talked about the eating disorder during family therapy but I tried to keep it lighter when we were just visiting together and then I told funny stories or asked her questions and just generally tried to be present and supportive.

Let us know how things go.

Warmly,

Kali

 


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Torie

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Reply with quote  #9 
It seems that Kali and I took the term "motivation" in different ways.  I was thinking of motivation as in being motivated to get healthy, whereas she is talking about motivation as in being motivated to eat the meal.  My apologies if I misunderstood.

I like the idea of rewards, but I think they work much better if they are small, immediate rewards for each little success.  For example one token for finishing a snack and two tokens for finishing a meal (all of it - every bite, sip, smear, and crumb).  Or a dime / quarter.  Or whatever.  You could talk about a schedule of rewards where a certain number of tokens could be redeemed for a video game (or whatever) and another amount could be for a movie (or whatever).

If the reward is longer term - say, a single reward for eating the whole day - if he doesn't finish his breakfast, the possibility of a reward that day is already gone and there is less reason to eat lunch or dinner. xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
momupnorth

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Reply with quote  #10 
hi cryingmom,
I am in Ontario (Barrie). My d has been inpatient of and on for over a year...2x for ed, 3x for other issues.  I know what you mean about the kids having more rights than they should regarding treatment.  The one thing I can suggest is to perhaps get in tough with the provincial advocate for children.  Though they officially work for the child, I found they were a big help in getting my d the care she needed.
The only way I have heard of around the consent law is for the child to be determined incapable of making their own decisions which is a path I have not gone down to date (but we did come very close).  It does involve a hearing and a judge would decide competency.  they would then appoint a substitute decision maker (most likely you).
Not sure if it works exactly like this in all provinces.
May I ask where you are in Canada and what facility?
feel free to email me if you like, I am happy to share what minimal information I know.
I have felt many times that the laws of consent in Canada are like banging my head against a brick wall!
regarding motivating her to eat/improve while in hospital, we found there was very little we could offer as reward, however the hospital could offer up consequences...ie limited activities/t.v time/computer time and this actually worked better than any reward we could offer.  My d also has a phobia of needles and it was explained to her that they would need to do more bloodwork if she continued to refuse nutrition/purge. 
again feel free to email me if you like and ask as many questions as you can think of...the people on this forum are a true treasure trove of wisdom!

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tina72

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Reply with quote  #11 
Hi cryingmom,
a really warm welcome from Germany and I am glad that you came here. This forum is a lifesaver and will help you a lot.
What you said about the IP your s is in now seems to me that this is not the right place.
If they cannot make him eat, what are they doing then? Why can´t he be discharged then when he is medically stable at the moment?
We had similar problems with IP here. Our d did not make progress and went further down the rabbit hole and they did not want to discharge her.
We took her home and did refeeding here and it was the best thing we did last year.
What can they do if you take him home?

There are a lot of parents who have made the same experiences with so called professionals and you have to get in charge again.
If there is no progress with plan A, go to plan B or C. He will not make progress or recover without eating. NO WAY.
If his brain keeps being malnurished, it cannot recover. If they cannot make him gain weight there, this is the wrong institution.
I hope that more parents from Canada join in soon and can give you better advice.

Send you a big back of power!
Tina72
cryingmom

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Reply with quote  #12 
Thanks everyone for your support and suggestions! We are in Ontario and have started the process of determining his incapability of making decisions regarding his treatment plan, but it takes time. The reason I can’t take him home now is because he’s at the edge of being unstable and the team is concerned about the possibility of re-admission and also his impulsive behaviors which may lead to self harm. I understand.
What I’m going to do today is to talk to his team:
1. He must eat. I don’t care how they make him eat, but I can’t have him at the hospital still refusing.
2. I will request they have someone supervise him after meals to prevent him from purging.
I spent 8 weeks with him at the hospital day and night, and returned to work 2 weeks ago for my own sanity and financial reasons, but I go to hospital every day after work to support and comfort him. His ED thoughts are so strong. He would refuse his meals or purge until his team came and told him if he continued, a NG tube would be put in his body, and then he will eat and still try to purge whenever possible.
Thank you very much Tina, Torie, scaredmom, momupnorth, foodsupport and Kali for listening to our sad story.
tina72

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Reply with quote  #13 
Hi,
I hope you will have some success with the team today, I cross my fingers!
Try to find a plan B if it doesn´t work, for example another ED unit somewhere else. If they cannot make him eat or set a nasal tube within the next week, you will need to change something. The longer malnurishment lasts the more difficult it is.
And try to avoid that you don´t know what to do when he is discharged the next time. It is the same here, they do not get parents on the boat and do nothing to help with refeeding after IP at home. Thats the cause for most of the relapses here. There were 6 kids with my d in IP and 4 of them returned after a couple of weeks at home. One went to another IP later. I was the only one which found FBT and a trainer and this wonderful people here and my d didn´t relapse up to now (knocking on wood).
Learn as much as you can here on the FEAST pages. Ask whatever you need. Have a good plan and be prepared. Then you will get that.
He is quite young and you have some time left until he is adult so this is a big opportunity.
Send you a big hug and a lot of power for that talk today!
Tina72
scaredmom

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Reply with quote  #14 
Hi cryingmom
where in Ontario are you? is this a specialised ED team? ED teams do know how to feed the child ie they sit or make the parents sit with child to eat everything. Not all of us have had a bad experience. Ours was good it really was. D are 11 admitted to McMaster for 2.5 week and there I learned that I had to sit with her to eat. They not only encouraged me to sit with her when I was there they supported me doing it too when d refused. when i or h was not able to be at hospital they sat with her at all meals and snacks. It was a strict adolescent ed unit. Cheryl Webb at McMaster is the head of ED unit there. Look up eating disorders on Health Canada website too. You may need to 'arm yourself 'with evidence based medicine and throw it hard at your team. if you want to talk email me. I would be happy to.
xx
Torie

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Reply with quote  #15 
Quote:
Originally Posted by cryingmom
He has been there for over three weeks and he gained 1 kilo in the first week and remained the same since then.  


Quote:
Originally Posted by cryingmom
I spent 8 weeks with him at the hospital day and night, and returned to work 2 weeks ago for my own sanity 


So when you were with him constantly, he gained, but when you went back to work, he didn''t gain?  That makes me suspect purging even more.  I'm sure they are getting paid a ton of money to care for your son, and they need to step up to the challenge without needed you - an unpaid volunteer - to be on duty 24 / 7.  When he is released, you will have your hands full watching him (another huge understatement), especially since you won't have their team to prepare meals, wash dishes, clean bathrooms, etc.  so you need them to do their job properly while he is in there. They need to get his weight up and snuff out any purging (as they are paid to do) while you attend to other areas of your life (work, regrouping in preparation for his homecoming).

Repeat, it is their job - not yours - to get his weight up and prevent purging while he is in their care.  Please know we are with you in spirit as you twist arms to get your s the proper care he deserves. xx

-Torie

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"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
momupnorth

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Reply with quote  #16 
we too had a very positive experience...first at RVH in Barrie then at Sick Kids in Toronto both of which have specialized programs.  Is your s by chance on a Psychiatric unit as opposed to an ED unit?  In that case, the staff may be unprepared to deal with the ed (read untrained).  If it is possible to get him into a dedicated ED unit, I would try to do so though I know this can be hard.  Otherwise, educating the staff on what to do to help your son would be best.  They could easily contact/consult with Sick Kids (an awesome program)  to see how best to help your s.
again, feel free to email if you like.

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Mom Up North
toothfairy

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Reply with quote  #17 
Hi there,
How did you get on with the meeting with the team?

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Son,DX with AN, (purging type) in 2015 ,had 4 months immediate inpatient,then FBT at home since. He is now in strong recovery,  and Living life to the full, like a "normal"[biggrin] teen. This is with thanks to ATDT. Hoping to get him into full recovery and remission one day at a time. Getting him to a much higher weight, and with a much higher calorie plan than his clinicians gave him as a target, was instrumental to getting him to the strong recovery that he is in now. Food is the medicine.
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