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KLB Show full post »
debra18
I can understand that he doesn't want to see his friends. It's probably embarrassing. And yes it's tough if all of his friends are sports players. Its very important to help him develop new interested and a new identity. If he doesn't has patience for reading, you can read to him. My daughter started playing keyboard. It was a turning point. She said "now I am musical" . I think she meant instead of "healthy". Distractions and developing new interests are very important.
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tina72
In our case it helped my d to do something with her hands, too.
She loved the perplexus epic ball.
https://www.amazon.de/Spin-Master-6022080-Perplexus-Epic/dp/B00CWB0N0W/ref=pd_sbs_21_1?_encoding=UTF8&pd_rd_i=B00CWB0N0W&pd_rd_r=b943331a-d6ba-11e8-9afd-ab144481bfdb&pd_rd_w=s8Wyb&pd_rd_wg=RO5RK&pf_rd_i=desktop-dp-sims&pf_rd_m=A3JWKAKR8XB7XF&pf_rd_p=51bcaa00-4765-4e8f-a690-5db3c9ed1b31&pf_rd_r=89Q3VJP0JW90GVFG5D4G&pf_rd_s=desktop-dp-sims&pf_rd_t=40701&psc=1&refRID=89Q3VJP0JW90GVFG5D4G
It also helps with working on frustration tolerance.
Don´t give it to your kids as long as they throw anything, it will break then ;(.
Tina72
Keep feeding. There is light at the end of the tunnel.
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tina72
Another idea:
Some here had progress with a heavy blanket to calm the kids down if they are too anxious and too restless.
https://www.amazon.com/CuteKing-Weighted-Blanket-Natural-Anxiety/dp/B078QZY71H
Keep feeding. There is light at the end of the tunnel.
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teecee
KLB. So happy to hear the positives in your story. Re the friends...is it your S or ED that doesn’t want them to visit? When they visited was it a good positive outcome? I say go with your gut on that one.
Music was something positive for our D and still is. It helps reduce her anxiety.
Accept all support you can...I agree that it’s important to keep that momentum and keep pushing CAMHS for more. When H goes back to work you want to be in the best position possible to support your S so I would hold out for the bed.
Much love and strength to your family from mine. Xx
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KLB
We're now up to 4500 cals a day as we're still not seeing that elusive kg/week gain we want. We have little gains, half a kg here, quarter of a kg there but it needs to be bigger and quicker. I'm puzzled as to where all the calories are going - maybe his heart and brain and kidneys etc are using them first.

His onlanzapine dose has been significantly increased which is making him sleepy. This is slowing him down so we're finding it much easier to curb the exercise. On the flip side, it's more difficult to get him eating orally because he's so sleepy. It's a balancing act but right now stopping the exercise so we can get nutrition in (via ng) and weight going on more rapidly is the priority. Any bite he does take we're treating as a victory.

Although we're now on the list for an inpatient bed hubby is still not certain and s desperately doesn't want it. The first time in weeks my son (my real son, not ED) has spoken to me and it was to beg me not to give up on him and send him away. I can see he's trying so hard to please me by attempting to eat and struggling so much with it. The mental struggle just to pick something up and take one bite is immense. His ED voice must be so loud. You can see him trying to fight the effects of the medication, trying to keep his eyes open, trying to keep moving. He even jiggles his leg around in his sleep. It's difficult to explain to him that going to a facility is to help him get better not to get rid of him. Hubby and I currently disagree on this so if and when the bed comes free we'll need to figure it out. I haven't yet used the cancer anology on him but I will when we need to talk about it more.

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Foodsupport_AUS
Sorry that it is taking so long for that weight gain to get started better. It can be hard and as a young teen male it can be really hard to keep up with their needs. It sounds like his metabolism is starting to kick in which works against weight gain, at the same point it means his body is healing. Yes it is likely that his brain and heart are using things along with a lot of other areas of the body.

It is really hard on parents to watch their child struggle so much, but at least he is somewhere where he is safe and you are working to keep him that way. I don't think anyone wants to send their child away, but it really does come down to how is he going to remain nourished if he can't eat. I suspect putting those difficult questions to your husband may allow you both to come to an agreement as to the best steps forward.
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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Torie

"We're now up to 4500 cals a day as we're still not seeing that elusive kg/week gain we want."

It is really great that the calories have been increased to 4500 - that is really fantastic.  Eventually he will be gaining at a faster clip, even if that takes an enormous number of calories.  It's also great that his exercising is much diminished.

"Although we're now on the list for an inpatient bed hubby is still not certain and s desperately doesn't want it."

I'm really glad he's on that list.  I wonder if you could think of a mantra to offer your son - perhaps something like, "I look forward to having you back home again as soon as that is safe" or some such.  I hope your h can get on board soon because his vacillation isn't helping anyone.  Do you think it would help for him to speak with his brother about it?

Thanks for the update.  I think of you loads.  xx

-Torie

"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Ronson
I am pleased to hear things are getting better. Best wishes - I think of you often x
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Warrior1
Hi KLB,

Great to hear some positives! I like others would be concerned about him coming home when he still can’t really eat. You have seen how many calories it is going to take to put weight on him and you both need to be confident you can continue this at home or the weight will start to fall of him again and you will be back to where you started. I had to adjust the time of my D’s Olanzipine dose to prevent her being too sleepy to eat, so I gave it just before supper so she had eaten all her meals before it kicked in it may be worth considering something like this with your son. As you sons body gets used to the Olanzipine the sleepiness will lessen. I’m wondering if you can use the threat of inpatient as motivation for him to eat e.g repeat another mantra while feeding something like “I know this is hard for you but you need to eat this otherwise we won’t be able to take you home” or “i really want you to come home but it won’t be safe for you to go home until you can eat all your meals and snacks”. You never know it may just be the motivation he needs. Keep climbing and you will get to the top of the mountain! Xxx
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HopeNZ
Hi KLB

I too think of you every day. Your love and compassion for your s really shine through in your posts.

Thank you for the update. There are some real positives there. We also found giving our d the olanzapine just before the meal meant she was becoming drowsy after the meal, as the ED voice was starting to berate her for having eaten.

It must be heart rending when your s begs you not to 'send him away'. I'm sure you're having to work hard to keep a brave face for him. When the inpatient bed comes up, is it nearby or in another town? Will you be able to continue to visit him regularly? If so, does reminding him of this ease his fears? If not, can you think of ways to reassure him that you'll be in very close contact eg constant text messages / FaceTime etc throughout the day? Do you know if the facility will allow this? Or is it best to simply reassure him that whatever decision you make will be made with love and in his best interests? Perhaps worrying about the prospect of going away is an unnecessary anxiety for him at the moment.

I was wondering if thinking beyond this time in hospital might help to distract your s from his constant battle to eat at the moment, and remind him that his wonderful life is still out there, waiting for him to return? When my d was in hospital we tried to regularly FaceTime friends and family. We looked at online photo albums of happy family holidays from life before the ED, and had long discussions about possible future camping trips etc. Even if they're reluctant to visit the hospital, could any of his friends / teachers / coaches be prevailed upon to send him cheery recorded video messages? Perhaps you and your h might benefit from these reminders too as an antidote to the four walls of your s's hospital room?!

Sending a big virtual hug (((()))))
Hope
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mid73
Hi KLB

Even though very few AN patients want to go IP some still can’t overcome their fear of eating enough to stay at home. It sounds like you are making some progress so that’s really great. My D really didn’t want to be IP and when she was in hospital, the mantra was “ we want this admission to be as short as possible....” ie the greater your compliance with the nutrition the sooner you will be discharged. I’m sure that would not work for everyone but for her it struck a chord and gave her the will to fight. The threat of IP was not enough though. Only when she was admitted did ED see we meant business.

Hope you can both reach a conclusion which whilst may not be an easy one, gets the required result. I know in the U.K. where you get a bed is a lottery. I hope it’s within striking distance for you.




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Torie
Thinking of you, KLB.  xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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tina72
Mee, too. Send us an update if you find some time.
I send you a big hug!
Keep feeding. There is light at the end of the tunnel.
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KLB
Look! We're finally back in the green and he now weighs more than he did when he was 13. BMI is at 17 now. We've hit 5500 cals/day but finally we've seen our kg gain (1.2kg in fact). A long way to go but I finally feel like we're moving.

He is now eating more but only what he deems to be safe. Usually grilled chicken breast and green veg. I've managed to sneak a little oil onto the chicken but not much. He tried really hard with a small portion of porridge oats this morning that I made with almond milk. Tomorrow I'm going to try and add a little cream and rapeseed oil. We top his calories up with the ng feed. We tried an Ensure drink but that ended up on the floor - it's processed so is very unsafe for him. He needs constant coaching but I think we're learning the best ways of doing that.

Exercise wise, we still struggle. The medication does help but his need to move and be active is still strong. It's nowhere near as bad as it was though.

I've told hubby that if he really doesnt want S to go inpatient that's fine, but he needs to be prepared to stay at home for his next work cycle in Dec and I'll go back to work part time. He's mulling that over so we'll see what happens there.

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scaredmom

What wonderful news! It is worth a gold star, maybe a dozen of them! 
Yes you are moving and in the right direction! Bravo! 

Is he still IP?
Thanks for the update. You "sound"good in your post. So happy for you and your family.
Very, very pleased he is gaining!!!
XXXX 

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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Ronson
Thanks for the update - so pleased you have started to make progress. X
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teecee
Oh KLB that is such a relief to hear. It sounds so positive and such a long way from where you were. All credit to you for learning those skills...it’s not easy.
It sounds like you’ve got this. Can’t tell you how pleased I am for you 💕💕💕💕
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HopeNZ
So much good news here, KLB, thank you so much for sharing it! Your son’s progress really is testament to your love and determination. You’re hitting your stride now and I just know you’re on your way to booting that ED out the door!
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Torie
Wow, so beautiful to see that green!!!  So happy to hear this good news.  Thanks for the update.  xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Mamaroo
5500 cal a day, that is awesome! How do you manage it? My d is have over half of that and I'm feeling she's eating us out of the house.

Great progress, thanks for the update!
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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Foodsupport_AUS
It is great to hear that there is finally some progress happening in the right direction. Good on you for offering a clear option to your husband. Hopefully he is realising that trying to avoid IP when he is so unwell may not be for the best or at least he is not going to leave it all to you. 

I agree at least a few gold stars are due to you. 
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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KLB
We're being discharged from the hospital next week and we're going home, not to a specialist ED facility. S is medically stable, and we're at a bmi of 17.4, not far off the 18 the dietician wanted. I'm quite apprehensive about it to be honest. I'm scared we won't get enough calories into him to keep him gaining. The last week he has eaten safe foods consistently and we've topped up via the ng. Tomorrow the ng is coming out and we're starting increased oral calories. S is fighting hard, desperately wants to come home, has mentioned he wants to get better so he can get his life back. I'm hopeful that's really him talking and not the ED trying some sneaky tactic I haven't figured out yet. I know the first week at home is going to be utterly horrendous as we all adjust and I'm fairly sure he won't gain but if we can get through that somewhat unscathed I hope we can push on through.

Hubby's parents are giving us some money so hubby doesn't have to go off to his next work cycle so we can both be at home until march time. We have our little army primed and ready to go. The freezer is currently being stocked with secretly calorific home cooked meals, the windows are having locks installed, S's bed is being moved into our room, labels are being removed from food packets, we're stocking the house with books, crafts and other non sporty activities. The iPad and sky box are being loaded with films and music (including water sounds like someone suggested), the locks are being taken off the bathroom doors, we have a stack of paper plates and plastic cups, the kitchen table has been moved into the corner of the lounge (tv distractions, S's chair boxed in to corner), all sports equipment/kit are taking a holiday to hubbys parents house for the foreseeable future.

Am I forgetting anything important?
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Ronson
You are amazing KLB - it sounds like you have everything covered. I’m glad S has gained weight and is focussed on recovery. Yes the first week I think will be hard but you have so got this. You know exactly what you are doing and what needs to be done. Good luck x
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scaredmom
KLB,

I am glad he is medically stable. What a relief, it must be. When they take out the NG do they have plan if he does not eat enough, that would be my concern for when you take him home. 
I know your real son wants to be home. And I do understand your worry about ED talking and not your son ie wanting to recover. I think he is too early and still has a low BMI to be thinking like "himself". So I feel you are very wise to be on guard. 

I am pleased you have financial support for the next few months. The packing of the freezer is wonderful. You will be armed and ready with less stress about the cooking. 
Having your son in your room, is also a great idea to keep watch as well as all the locks etc and taking labels off the food. Moving exercise equipment to another home!
I really think you are very well prepared! WOW. I am really impressed. I learned the hard way.

I do not think you have forgotten anything for your son and his care. But what about you? Do you have "space" for a break? Is there support for you, some time out so to speak. Someone to sit with son, while you each take a breather?  

Please keep us posted.
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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Kali
Dear KLB,

You are doing brilliantly. The only thing I might add would be to let him know, if you are comfortable with this, that coming home is plan A and you are really happy to have him home again, but if he loses weight, or if there is food refusal, that you and his dad and his team have plan B; to take him back to the hospital or a specialist ED inpatient unit. (or whatever you work out with his team.) You will also be able to see if he is able to take all his food orally when they take out the ng tube tomorrow. If he is not, perhaps he needs to stay in the hospital a bit longer.

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not far off the 18 the dietician wanted


Although the dietician is telling you that she/he wants a bmi of 18, I'm sure you know that your s. will need to be returned to a bmi which reflects where he was before becoming ill, based on his historical growth chart, and that the bmi of 18 is only a first target. In fact a BMI of 18 is still considered underweight. So please speak with the dietician and do not let the dietician tell him that he needs to be a bmi of 18 since he may latch onto that and think it is sufficient when it is not. While it is important for him to reach a bmi of 18 in order for him to be more medically stable, it is only a waystation on the path to weight restoration.

I took a look back and saw that you mentioned in one of your previous posts:

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He was actually 73rd, in fact he's been between the 66th and 80th since he was 10.


So that could be your eventual goal. There have been other more important goals previously: getting him in a higher level of care when he so needed it, getting nutrition in, bringing him back from the very difficult place he was in, stopping the exercising and getting him off the feeding tube and eating food orally. 

It is really great that you can both be at home until March and muster the troops. Please take care of yourself. If you are both there, you can schedule a little "you" time for both your husband and you while switching off while the other parent is minding your son.

Wishing your family success. As they say, fake it until you make it, so when he comes home you can try pretending that you have everything under control and are confident that he can eat. (even if you are not).

What sort of on the ground support is your family able to access after his discharge? 

warmly,

Kali







Food=Love
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