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

Welcome to F.E.A.S.T's Around The Dinner Table forum. This is a free service provided for parents of those suffering from eating disorders. It is moderated by kind, experienced, parent caregivers trained to guide you in how to use the forum and how to find resources to help you support your family member. This forum is for parents of patients with all eating disorder diagnoses, all ages, around the world.

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Trillium
Hello, everyone. I'm so glad I found this group. I don't see a group specifically for introductions so I hope it's okay that I created a new topic for this. Our 28-year-old son has had a restrictive eating disorder for nearly 10 years. It may have started with the onset of symptoms of celiac disease, for which he's been diagnosed. He also has mild OCD. In our area of the U.S. 10 years ago there was not coordinated treatment, so when he met with the eating disorder treatment provider at 19 we were vaguely told to get a therapist. My husband and I were weak in this area...he was over 18 so we couldn't force him but in hindsight we should have jumped right in and made it happen. Son graduated from college and did well in other areas of his life too, and saw a therapist for years, but that therapist knows little about EDs. We did the Maudsley method at home as best we could, but again, we were flying blind at the time. He regained and then relapsed and regained again, but for the past four years he has been very thin and frail. Fast forward to this past December. He had left home in October for a new job out of state. Arrived home for the holidays in December looking positively skeletal and we were terrified for his life. A relative knows someone with some influence who was able to get a specialist to see him very quickly in the emergency room, and he was admitted on 26 December. Did inpatient for 22 days, angry because "I'm an adult and I can do this on my own." Made a gain of 15 pounds in hospital (hope it's okay to mention numbers...if not, I can edit this) but there was a two week delay to get into partial hospitalization program and he had lost every pound by the time that program started. He's regained it after 3 weeks in partial. We have struggled mightily with the concept of support vs. supervision. He does not want supervision. Finally yesterday in therapist session with us he admitted that he has not been eating the full amount of meals because of extreme fullness/belly pain and was afraid of being a failure in our eyes. Maybe we've gotten past that now because he agreed that for this weekend of meals at home we will prepare meals and snacks together and we'll eat together and check his completion rate. If he can't finish it, he can't finish it. 

Therapist told us privately he may need residential care. He is anxious to resume his career out of state and seems to have no concept about how far he has to go. He says he wants to gain weight, hates being skinny. But he said something worrisome last night, that some of the people who have "graduated" out of partial hospitalization look to him as though they have put on "too much weight." I don't think he is prepared for being in a body that is not rail-thin. He has had this so long that I am losing hope...even though technically this is the first time he's had sufficient treatment. 

He resents partial hospitalization because right now, the other patients are all young women in their teens. Therapist tells him that someone in their 50s or 60s could be a patient at any time -- this just happens to be the mix of ages there right now.

He has a younger sibling still at home and I see how this is affecting that child too. I feel like the air at home is full of tension, it's in every molecule we breathe. I feel so overwhelmed. Thanks for listening.

Trillium
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ValentinaGermania
Trillium wrote:
Hello, everyone. I'm so glad I found this group. I don't see a group specifically for introductions so I hope it's okay that I created a new topic for this.


A very warm welcome from Germany from a mum of a young adult d (19). It is great that you found us here, this forum was a lifesaver for us. We have no real introduction group so you did it exactly how we all do it. 😉


Trillium wrote:
Our 28-year-old son has had a restrictive eating disorder for nearly 10 years. It may have started with the onset of symptoms of celiac disease, for which he's been diagnosed. He also has mild OCD. In our area of the U.S. 10 years ago there was not coordinated treatment, so when he met with the eating disorder treatment provider at 19 we were vaguely told to get a therapist. My husband and I were weak in this area...he was over 18 so we couldn't force him but in hindsight we should have jumped right in and made it happen.


Looking back we are all more clever and know where we have failed but that does not help now. You can still help him to change something and recovery from AN is possible even after such a long time (although not easy).


Trillium wrote:
Son graduated from college and did well in other areas of his life too, and saw a therapist for years, but that therapist knows little about EDs. We did the Maudsley method at home as best we could, but again, we were flying blind at the time. He regained and then relapsed and regained again, but for the past four years he has been very thin and frail.


That is the story of most long term patients and that is pat of the problem: he has never been truely weight restorated and so brain recovery has never started up to now. Good news is that brain is a fantastic organ and can rewire damaged connections even after such a long time. All he needs is food and full nutrition and weight gain.

Trillium wrote:
We have struggled mightily with the concept of support vs. supervision. He does not want supervision. Finally yesterday in therapist session with us he admitted that he has not been eating the full amount of meals because of extreme fullness/belly pain and was afraid of being a failure in our eyes. Maybe we've gotten past that now because he agreed that for this weekend of meals at home we will prepare meals and snacks together and we'll eat together and check his completion rate. If he can't finish it, he can't finish it. 


Without supervision it will not be possible. He will not eat enough without supervision. He will not even know any more what a healthy portion is. Weekends at home is great. Try to ask him to trust you and get him out of the kitchen and you cook alone. Have ready made plates for all of you and serve them and ask him to finish his portion. Start with small amounts with more calory dense food and increase portions slowly as all his stomach and intestine system will have shrunk.

Trillium wrote:
Therapist told us privately he may need residential care. He is anxious to resume his career out of state and seems to have no concept about how far he has to go. He says he wants to gain weight, hates being skinny. But he said something worrisome last night, that some of the people who have "graduated" out of partial hospitalization look to him as though they have put on "too much weight." I don't think he is prepared for being in a body that is not rail-thin. He has had this so long that I am losing hope...even though technically this is the first time he's had sufficient treatment.


He is afraid of being obese afterwards and that is normal, they are all afraid of that. He has no normal body image any more and he is afraid how he will look like with a normal body. Good news is that he will not gain 10 kg in a week so he will have time to get used to this new body. Take away all full body mirrors in your home and in his home.

You are welcome with all your 1 million questions here, please ask and vent if needed, that is the right place to do that.
Keep feeding. There is light at the end of the tunnel.
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deenl
Hi Trillium,

You are very welcome to the forum and I do hope that you will post often for support, ideas, to vent and in time to celebrate progress. There are many parents on here with adult children so I am sure they will be able to share ideas with you.

My son is much younger but I just wanted to link you to some resources that might be useful. It seems logical that these resources would help the penny to drop but their minds are so fixed in their point of view that I would think very carefully before sharing them with him.

Carrie Arnold is a science journalist who also had AN for about a decade. Decoding Anorexia is her easy to read book combining the biology of the illness and her own recovery story. She recovered with meal support from her parents.

Tabitha Farrar also had AN for about 8 years. Her blog is very extensive and has lots of ideas for recovery.

Please feel free to ask any questions and we can help you brain storm. It seems like such a positive chance for your son after a long and difficult time. 

Warm wishes,

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

May 2017 Hovering around WR. Mood great, mostly. Summer 2017 Happy, first trip away in years, food variety, begin socialising. Sept 2017, back to school FT first time in 2 years. 2018 growing so fast hard to keep pace with weight. 2020 Off to university, healthy and happy.
  • 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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Foodsupport_AUS
Welcome to the forum. Your son's anosognosia is of course pretty classical for anorexia, along with his plan that he can do this all by himself. Of course he can't but they often say they can. I wonder whether given your son's age it may be worth considering one of the adult intensive programs to help you both get to the same place at working towards his recovery. As you point out he will need ongoing treatment for sometime, but his keenness to not be in residential care is understandable. In particular the problem with residential care is they leave and have to learn how to live outside the centre. The programs are at Center for balanced living  https://centerforbalancedliving.squarespace.com/5-day-program-description  and UCSD  http://eatingdisorders.ucsd.edu/treatment/intensive-yatreatment.html . My understanding is that UCSD does run these more often than indicated on line. This is looking at giving you both skills moving forward to help him get better. 
D diagnosed restrictive AN June 2010 age 13. Mostly recovered 10 years later.  Treatment: multiple hospitalisations and individual and family therapy.
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ValentinaGermania
l also would suggest you go to one of the adult intensive programs with him. Call it holidays or a short time treatment to get started. It would help you both to get on track and to know what to do.
Keep feeding. There is light at the end of the tunnel.
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Mamaroo
Hi Trillium and welcome from me as well. You already received great advice from the others. I can only add that the amount of food (and fat) needed to recovery is almost always underestimated. Not only would your son need extra calories to stop the weight loss, but his body needs calories to repair his organs (and his brain needs lots of fat). His metabolism would also go up, which means he would need even more calories than someone who didn't lose weight.

ED affects everyone in the house. I remember dreading weekends or school holidays, because ED is home full time. Try to take time away from ED every day and make turn taking your other child our (for lunch, to the shops, a movie etc) to get a break away from ED.

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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keeptrukin
Hi,
I hope that they have explained to your son that the belly pain is a symptom of the damage that has been done to his belly and that the only way to get rid of the pain and feel better is to eat. My son had very bad belly pains during refeeding that his ED capitalized on. We had to ignore this pain and him constantly digging at and massaging his belly in order for him to get better. I'm sure this is much harder with an "adult" (in air quotes because a brain on ED is not really adult), but I know that you can do it. 
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BostwickLakeGirl
Hello,

We have a son who continues to struggle with his AN since the age of 12.  I would like to address the issue you mentioned with regards to treatment and it being female driven.  That is a HUGE problem for us with boys/men!!! Thank goodness there are a few facilities around the USA  now have programs directed to male treatment. (this was not the case 8 years ago) I would highly encourage looking into these programs. We had to travel 5 states away but it made a difference in our sons life!  Treatment for women and men with AN needs to be different. My son has sat in so many local female programs that it made him feel MORE isolated and alone!!! Can you imagine being the only female in an all male group if you had breast cancer? 

Transitions (college, new career, marriage, divorce, death etc.) are trigger points when AN can creep back in. As parents we need to check in with our child during these new times. 

Having a child with an eating disorder is a roller coaster ride. There are days when you never stop thinking about it and it consumes your life. Think about getting therapy for you and your younger child. 


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