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

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cwebster
13 year old son remains in hospital--longest admission yet x 5 1/2 mths after he claims to have gotten "gastro"-lead to NG with purging to NJ which has essentially been in place since end of April. In the last 6 weeks we tried weekend passes which would start off "ok" but eventually ended in meal refusals. He lost 9 kg within approx 6 weeks as in patient!! Hates the NJ tube which has had to be replaced a number of times....replaced yet again yesterday. Has had to be admitted to a peds floor 3 weeks ago for dehydration. Hunger strike continues-he ate 1 partial snack today. Pump runs continuously which he attempts to impede flow, turn off pump. Constant attempts to negogiate time off pump, says he will do better if pump off...etc. Poor mental state due to malnourished brain-hopeless, sad, angry...very institutionalized. Anyone have a similar experience...with a positive outcome? Very upsetting, constantly on our minds. We are awaiting a second opinion/assessment but likely to stay where he is at....I would love to take him home but realize I could not manage him!
Dx with severe AN age 11, hospitalizations x 4. No comorbid mental health conditions identified. Meds-olanzepine. Numerous meds tried without effect including benzos. 
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Foodsupport_AUS
I am so sorry that things are not going well with your son still. He sounds like mentally he is in a very bad place and really struggling. I found that my D was at her worst when there was cycling between getting lots of food in with hospitalisations and then complete food refusals / severe restriction at home. What seemed to help is getting more consistent daily nutrition in with slower gains but also no cycling. It took four years or so for the worst of her mental state to be over but she is now largely recovered. 
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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tina72
cwebster wrote:
He lost 9 kg within approx 6 weeks as in patient!! 


NO patient should lose ANY weight on an IP setting. And really not that much. There is something going wrong there. Maybe they are not feeding him enough (some need really a lot of calories to gain weight) or he is secretly exercising or purging and they do not get it. Please ask questions. This is not what it should be like.
Keep feeding. There is light at the end of the tunnel.
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deenl
Goodness, cwebster, I thought my son was bad losing 2kgs in 5.5 weeks! And my son always pulled out the NG tube the minute he was out of the doctors room. He was at a very, very low weight and the only thing they could think to do was to sedate him and tube him. However, this was deemed to be extremely risky medically due to his extremely low weight. We were stuck between a rock and a hard place. Something, I am sure that you understand. We had no good relationship with the team because they did not diagnose an ED but depression and ASD and wanted to treat with anti-depressants and a course designed to help people with autism. We were beside ourselves with fear, confusion, anger and dispair. He was 12 years old at the time.

You were looking for hopeful stories and I think we can be counted as one. Today, he is his old goofy, happy self. He has grown so much that he is at a higher percentile than he has ever been in his life and it has been extremely hard to keep the weight in line with that. Indeed, I don't feel like he has ever been fully WR. We got within 2/3 kgs a couple of times and he would grow again and we would be 5/6 kgs under again. But state has been excellent. He never used to question athority or advocate for himself in school; now he has not problem doing so, even perhaps too much! He is still introverted and somewhat socially isolated but there are many reasons for that and he does really well with a smaller group of cousins and close friends. He sings to himself and his quirky sense of humour is back. 

It did take a long time though. The first half year we were a mass of confusion and poor treatment experiences (we took him home but under the care of an excellent pediatrician). The second  half of the first year, he was a month in the childrens' hospital and then we got a good routine going but I could only get him gaining at 300g a week but it was almost always 300g week in, week out. He was home from school for the whole year. The second year, he started to come back to us. He was still not at school but was interacting well with his brothers and a friend. His concentration was also back. He was rebuilding the normal warm relationship with his dad but took out all the negative feelings on me which was very, very painful. Still gaining a regular 200-400g per week. The third year he went back to school, in great form, still gaining a little constantly. The forth year, continued growth and gaining. We are at the beginning of the fifth year and I am on a mission to finally get him WR, hopefully growth slows down! He is due to do his secondary school exams on time and has been dealing well with the stress and hard work. I am also trying to educate him and get him more responsible for a relapse prevention lifestyle in preparation for university around this time next year. Our relationship is warm and affectionate, with lots of humour. 

How much co-ordination is there between you guys and the team? What are they saying about the weight loss? If you feel like sharing some details, perhaps people who have been in similar situations can share their hard earned lessons and help you get the situation moving again.

Wishing you continued strength and courage,

D

PS I understand the full refusal so well that I started a thread called The super-resistors - what do you do when LSUYE and Magic Plate cause total shut down. Many parents replied and the methods they used are very varied but most got there in the end. Maybe some of the stories there will give you some ideas or hope.
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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melstevUK
cwebster,

I am so very sorry for what you are going through - it is true that this is a lot of weight to lose in a hospital setting.  I think this is probably the issue which needs looking at first.  Is it that they are not giving him enough nutrition or is he purging in some way when no staff are present?  
In terms of his mental state and anguish - you just have to keep showing a firm but kind front, trying to hide any anxiety you are, naturally, feeling and tell him that he is never going to get out of hospital without accepting nourishment and weight gain.  

The positives: he ate a partial snack.  This means that he is taking food by mouth all while the nj tube is running.  
Can you encourage him/the team to pursue this more vigorously?  Often the desire to be 'normal' can be a motivator, and talk about returning to 'normal' to be like other teenagers could motivate him rather than talk about recovery.  In his own mind he probably does not see himself as ill, even though he is in hospital.  

This is a tough situation and understandably you cannot take your mind off it - particularly while there is no sign of progress.  

I hope that a discussion with the clinicians involved will lead to some changes which are finally going to promote a move forward.  It is a long time for him to have been ill and for you to see no signs of him moving forward and has clearly been a journey full of anguish for you all.
Believe you can and you're halfway there.
Theodore Roosevelt.
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