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

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canadamom12 Show full post »
Mamaroo
Hi Canadamom

I'm glad to hear your pediatrician is on top of things. If her heart rate is low, the best place for her to be is in the hospital. Is she able to eat in the hospital or does she need an NG tube? My d was in IP for 2 weeks with an NG tube. She was discharged when she was medically stable. We were also far from the hospital (an hour depending on traffic) and I drove everyday up and down with my husband taking our other daughter to school and keeping the house together. Try and take care of yourself now, I know it is heart breaking seeing our children so ill, but things will get better.

Sending you lots of hugs!!!!!!
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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canadamom12
The weird thing is that their team approach is not to tell us how much weight she has gained. I’m a take action, goal oriented person so I find this a bit hard to handle but I have to accept their rules.
She is very motivated to come back home so she is being compliant at every meal and snack, which is very nice to see. The staff there supervise meals and snacks so my husband and I leave the room.
They’re very vague when we ask question about WR. For those who have done IP did you find that your child was restored to their pre illness weight, or beyond, before being discharged?
We have been very fortunate to have several close friends rally around us, cooking meals, taking our son out for dinner and sporting events so he’s not always on his own. I am trying to practice as much self care as I can, getting prettt good sleep in the evenings, and I will book a massage this weekend. Just trying to stay positive for the long haul.
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Enn
I believe you have a right to know exactly what is going on. You will be taking care of her when she is home. I think you need to have a frank discussion to help you so you can help her. You are a take action mom so tell them that. I would also ask them why they won’t discuss with you. I think that is fair to do. I am sorry, it should not be so difficult to get information. We were in Hamilton and they told me everything. This was a specialist ED ward. The doctors were ED specialists and reasearchers and professors and they discussed everything with us on Monday mornings 11 family team meetings no fail. We had to be there in person or on phone. I know you are north of Toronto, would they consider talking to Sick kids about protocol?
I feel upset for you not knowing.
XXX
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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Mamaroo
canadamom12 wrote:
For those who have done IP did you find that your child was restored to their pre illness weight, or beyond, before being discharged?


My d weighed 32kg when admitted, she was supposed to weigh 42kg. She was discharged at 34kg to the out patient program. During the following couple of weeks she lost the 2kg because I was still learning to refeed her. Just before the hospital wanted to admit her again, she started to gain. We were discharged from the out patient program at around 58kg, 9 months after WR.

I know there are children who stay far longer in IP (even at our treatment hospital), it really depends on individual circumstances.
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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canadamom12
scaredmom wrote:
I believe you have a right to know exactly what is going on. You will be taking care of her when she is home. I think you need to have a frank discussion to help you so you can help her. You are a take action mom so tell them that. I would also ask them why they won’t discuss with you. I think that is fair to do. I am sorry, it should not be so difficult to get information. We were in Hamilton and they told me everything. This was a specialist ED ward. The doctors were ED specialists and reasearchers and professors and they discussed everything with us on Monday mornings 11 family team meetings no fail. We had to be there in person or on phone. I know you are north of Toronto, would they consider talking to Sick kids about protocol?
I feel upset for you not knowing.
XXX


We are also in an ED specialist ward, and this is what I find has been most troubling, is that it’s like they hold the info and we are not privy to it. Yet all the case notes will show that we were not parents who stuck our head in the sand, we were actively applying FBT before we had even seen a pediatrician!!! All they’ve said is they will give indicators of if she is getting healthier, and improving that way. Which my husband and I quite frankly feel is a load of BS.
We have scheduled meetings every Monday as well. This past Monday was our first, and I have to admit it was a little intimidating and overwhelming with 8 people round the table. Plus they were more concerned about her heart rate. I will discuss with my hubby and maybe we will push a little harder.
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deenl
canadamom12 wrote:
The staff there supervise meals and snacks so my husband and I leave the room.


Is this something that is in place for the initial period? I was able to feed my son after he left hospital because I practiced when he was in hospital. I would suggest that you see if you can stay in the room and observe their techniques as a first step. Were you asked to leave? It could be that they have reasons they see as valid. If so, you should know what they are and if you agree with them.

But one step at a time. It is all very overwhelming and no matter where your kid is (home, IP, hospital) there are many, many details to address and skills to learn. You will get there.

Warm wishes,

D
2015 12yo son restricting but no body image issues, no fat phobia; lost weight IP! Oct 2015 home, stable but no progress. Medical hosp to kick start recovery Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

May 2017 Hovering around WR. Mood great, mostly. Building up hour by hour at school after 18 months at home. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. [thumb] 2018 growing so fast hard to keep pace with weight
  • Swedish proverb: Love me when I least deserve it because that's when I need it most.
  • We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.
  • If the plan doesn't work, change the plan but never the goal.
  • We cannot control the wind but we can direct the sail.
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Enn
Canadamom,
In our community hospital we were not allowed to see her being fed or feed her too. It was only in Hamilton that they encouraged us to sit with her at meals and asked us to bring food to eat with her on the room then we graduated to off the ward and into the cafeteria. So it seems what they are doing with you is what we had at first. Is there a social worker there that “does” ED that you speak with too?
Are you attached yet to the Canadian Mental Health Association program for ED ?Does this IP expedite that referral?
Here once d was IP we got appointment the day after discharge.
I don’t wish to inundate you with all this as you are dealing with so much right now. Maybe just take a break and focus on self care, recharge, the go from there.
I am not sure why they don’t us be there to feed. It does not make any sense.
Please take care. Let us know how it is going.
XXX
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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canadamom12
scaredmom wrote:
Canadamom,
In our community hospital we were not allowed to see her being fed or feed her too. It was only in Hamilton that they encouraged us to sit with her at meals and asked us to bring food to eat with her on the room then we graduated to off the ward and into the cafeteria. So it seems what they are doing with you is what we had at first. Is there a social worker there that “does” ED that you speak with too?
Are you attached yet to the Canadian Mental Health Association program for ED ?Does this IP expedite that referral?
Here once d was IP we got appointment the day after discharge.
I don’t wish to inundate you with all this as you are dealing with so much right now. Maybe just take a break and focus on self care, recharge, the go from there.
I am not sure why they don’t us be there to feed. It does not make any sense.
Please take care. Let us know how it is going.
XXX



Hi there and thank you for your response. They have indicated that we will slowly be reintegrated back to the feeding process. I think right now they are focused on a)refeeding and b)taking the burden off the parents to have the difficult meals.
She is currently supported by child and youth counselors, nurse practitioner, psychologist and nutritionist so she truly is in wonderful hands.

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Enn
That is so good to hear! They do sound good!
XXX
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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Torie
canadamom12 wrote:
They have indicated that we will slowly be reintegrated back to the feeding process. 


I wonder if they find it makes things harder if the parents are in the room - maybe ED likes to "show off" for the parents? (Doesn't want witnesses while getting its butt whooped?)  Just a wild guess.

I agree with the others that its important to get plenty of practice feeding while she is under their care, but I guess I can imagine that odds of successful feeding might be highest in the beginning with parents out of the room?

Still and all, I would push to get back in asap.  You will be glad for however much practice you get before she is back under your care. xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Mcmum
Glad you've got support and things seem to be coming together. Good that they will soon reintegrate you into refeeding. In the meantime have a break from it and replenish your energy supplies. Can't believe how fast this has got a grip from your first post on here but wishing you best best wishes x
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