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

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coffeemom
My son 12 dx with RAN in May 2017 was struggling severely with anxiety and depression. We have much of that under control with meds. Compared to January he is doing so much better, however, he is still weight.6th percent from 25th percent most of his life ( which I wonder if that "norm" should be his norm. B/c of ins. We were not able to get help with the provider who diagnosed and now at children's in Seattle. Somehow got referred to behavioral health instead of adolescent medicine. The psychologist says it isn't ED, it OCD. his ED behaviors have lessoned with a couple pounds, but he is still restricting. Very hard to get enough kcals in to make headway. I agree OCD is part of this. I want to make sure he is getting the best team possible to conquer this and I'm not sure the last assessment will give us that. He tells them he eats every type of food, just doesn't mention not enough., Or the sneaky body checking. As of now, it is very difficult to keep his computer time to a reasonable amount. Doesn't stay outside or do anything else for more than 30 min and doesn't choose to.we are scheduled.now with the adolescent medicine but feeling like another assessment is ridiculous to get the help we need to do this.
What do we need to conquer this at home? I'm going a little crazy.
Thanks for your experiencial input.
Hope filled
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ValentinaGermania
Hi coffeemom,
welcome here in the forum, I´m sorry that you have to be here but there are a lot of wonderful people here and you will soon get a lot of help. Sorry that nowbody answered up to now but most people are still sleeping I guess.
I didn´t understand all that you wrote because my englisch is not so good (I´m a native german speaker). I understood that you have problems because he is still underweight and you think he is not eating enough, am I right? Just to ask my always first question (because it was a lifesaver at our house), did you try some smoothies? You could hide a lot of non tasting oil in that and the brain needs a lot of fat for recovery. For the computer time, do you switch it off after a certain time or how do you do this at the moment? Many people with ED develop some OCD manners, for example checking the body after every meal or wanting to have the same cup and the same plate every day. Restricting behaviors get less with weight restoration. But even if he is at the target for the moment, he will grow another bit and you need to set a new target. So it may be better to push him somewhat over the line to have a little buffer. It takes a lot of time to heal the brain, but it is possible and restricting behaviors will get less over the time. Weight recovery is the most important thing.
Tina72
Keep feeding. There is light at the end of the tunnel.
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OneToughMomma
So, coffeemom,

You are asking what you need to conquer this at home.  And I think that's the perfect question.  Despite what any expert may say or any diagnosis he may get, he is underweight.  And he needs to gain.  

I think smoothies are a great idea.  

You say he is not eating enough.  Can you tell us a little about what a meal looks like?  Who prepares it?  Where do you eat?  What does s do?  What is he eating relatively easily?  What strategies have you tried and how did they go?

If you give us some specifics, then maybe we can help you to get more energy into him.

xoOTM
D in and out of EDNOS since age 8. dx RAN 2013. WR Aug '14. Graduated FBT June 2015 at 18 yrs old. [thumb]
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Torie
Hi coffeemom - So sorry you needed to join us here.

First, I want to say that many here (raises hand) have found our "professional help" to be worse than no help at all, and it sounds like you may be in that situation, too.   I would suggest that you call Kartini Clinic (in Portland, I think) and ask their advice on getting your son proper care.  I know that may sound very far away, but really, many here have had to travel much farther than that to find helpful help.  And many have said that they are very helpful if you call on the phone - they are also experts at dealing with problematic insurance issues.  (The insurance companies sometimes need help understanding that receiving proper treatment in a timely manner will save them money compared to letting the illness continue longer.)

I agree with everything Tina and OneToughMama said.  You can add a surprising amount of canola oil to everything from yogurt and smoothies to soup and rice - it you stir it in viforously it disappears without changing the flavor or texture (unless you really add lots and lots - takes a bit of practice to figure the boundary.

Unless your son had OCD before the onset of ED, he probably doesn't have OCD now.  ED distorts thinking to become very rigid and OCD-esque, which often resolves once they have been at a proper weight for a while.  THe brain needs plenty of dietary fat to heal, as the brain is made up largely of fats.

Younger sufferers and boys seem to be especially prone to developing exercise compulsion so keep an eye on that.

Please feel free to ask all the questions you like.  This is really the best place for information and support.  xx

-Torie
"We are angels of hope, of healing, and of light. Darkness flees from us." -YP 
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Foodsupport_AUS
Hi Coffeemom sorry that you are still struggling to get a care team together for your son. Having read you older posts I see your older D was diagnosed with ARFID and you had treatment through Kartini, but I gather your insurance doesn't cover your for this now?

It sounds as though your son may not tick all the boxes for AN hence the suggestion that this is OCD rather than ED. Of course ARFID may be present again too. 
Either way regular meals, consistent weight gain are all going to be part of the package. 

We can't tell you who you should see, or not, and only you know if you feel that you are getting the right support at the moment. Having conquered this once though you will have skills that newcomers don't have. Being caring and consistent whilst also being insistent on full nutrition is a great first step. Be that smoothies or whatever else you choose to do. 
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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Mamaroo
Hi Coffeemom, sorry to see you are back here. I don't really have any answers, but just some ideas regarding computer time. When refeeding my d, she got iPad time after every completed meal. It added up to a lot of hours, sometimes on the $%#@ thing for the whole day! When she got closer to weight restoration I slowly decreased the time allowed on the tablet. Now she can only be on that thing for an hour a day during the week and 2 hours on the weekend. It took a while for her to replace it with something else, but now she plays outside, read books and have other interests.

A tablet or computer is a great distraction while refeeding, at least when in front of the computer she was not exercising. When your s gets better, you can decide to limit his screen time. Just do it slowly and replace it with another activity, such as tv time with the family, playtime with the dog, boards games, etc.

Best wishes!
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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coffeemom
You are right that he does not tick all the boxes for AN.  I do not think he had OCD in past years, but he definitely has emetaphobia and I know that holds him back from eating.  He does eat a variety of things, but is very reserved, eats terribly slow, trouble eating with others, retreats to the computer to eat there.  I plate all the food, and he often tells me its too much food, my tummy hurts, I don't like that, its gross....  It is very difficult to keep him off the computer.  It is the one place he feels calm and most relaxed.  when he is not on it, he is pacing the house, taking multiple showers, grumpy, will try doing something but it lasts a short time.  His energy seems to be tapped when I say lets do something, and in overdrive other times.

I realize that until his weight is up for a while the "OCD" wont go away (if it is strictly from AN)

He has been eating anywhere from 1100 kcals/day-1500, once in a while  good days of 1700kcal.  Although it is hard to say for sure, he has been nibbling on pieces of cereal most of the day to "help push mucous down". could be more than I think.
He is really sensitive to taste, so he notices extra cream in the milk, and oil in the smoothie. I have been adding boost plus as the milk portion.
I see that some on here are feeding 3-4,000kcals.  He has only gained about 1lb per week. what is the goal for weight gain per week.? 12.5 y.o., His BMI now is 15.9, and he is 8th percentile.  His highest was 25th

so...do I need to get a dietician to help with this?  is counseling focusing on OCD (based on last assessment) worth doing?  or do I need to push for specific counsel for ED.  that would probably mean another assessment.  our first was with Kartini, then insurance said you have to go to children's in seattle. the behavioral health people think its OCD.
Thank you for all your input.


Hope filled
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Mamaroo
1lb or .5kg a week, as far as I can remember, is an acceptable rate. The same as my d when she was 10 last year. She had 6 ensures a day, which came to 1800 kCal. It was later bumped up with 3 small snacks to 2100 kCal and at the end of last year to 2400. She was weight restored in March and is still having around the same more or less, since I'm not counting calories any more. We slowly exchanged the ensures with food and had her last ensure months ago.

His OCD will lessen with weight gain and when he eats a lot of protein. The amino acid, tryptophan gets converted in the brain to serotonin. Low serotonin levels are associated with OCD behaviour of which ED is an extreme form. See Julia Ross's website: http://www.dietcure.com/aminoacids.html

For the tummy issues, you can try and go gluten free or eliminate any food which produces gas such as raw vegetables. Does he have hayfever or allergies to food? My d is very allergic to peanuts, but blood treats have shown a low allergic reaction to wheat, which was nothing compared to the peanut allergy, so it wrnt unnoticed. I put her on a mostly gluten free diet and her mood has improved. Because I didn't want to give her another food group to worry about, I replaced gluten products with gluten free alternatives without telling her. Sourdough bread is low gluten, so I give her that. When I cook I replaced pasta with gluten free pasta without any body noticing, same with baking with gluten free flour, breakfast is oats instead of weetbix, etc. She always picks the gluten 'less' option when we eat out. I try to go gluten free about 90% of the time and don't stress about the rest of the time.

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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deenl
Hi coffeemum,

Given the similarities of our situation, I have been meaning to reply to you, just found it tricky finding the time!

coffeemom wrote:
My son 12 dx with RAN in May 2017 was struggling severely with anxiety and depression. We have much of that under control with meds. Compared to January he is doing so much better, however, he is still weight.6th percent from 25th percent most of his life ( which I wonder if that "norm" should be his norm. B/c of ins. We were not able to get help with the provider who diagnosed and now at children's in Seattle. Somehow got referred to behavioral health instead of adolescent medicine. The psychologist says it isn't ED, it OCD. his ED behaviors have lessoned with a couple pounds, but he is still restricting. Very hard to get enough kcals in to make headway. I agree OCD is part of this. I want to make sure he is getting the best team possible to conquer this and I'm not sure the last assessment will give us that.


When my s was very underweight he was depressed, anxious, was very withdrawn and anti-social and suffered badly from OCD. The psychiatrists went through a list of things they thought it was; depression, Asperger's, weird brain diseases, you name it. My gut knew it was none of these things and through my reading I came to believe it was an ED. I started finding a way to stabilise and then improve his weight. And guess what, slowly he became less withdrawn, then stopped self harming, the OCD ticks gradually decreased then his mood was lighter and so on until today where he laughs, sings to himself, feels proud of his creative achievements and OCD is totally gone.

Many treatment centres work to get a kid weight restored, see how the do at the right weight and only then give additional diagnoses as they know that very often co-morbids disappear with nutritional rehabilitation especially if they were not present before ED.

Here is a very interesting past discussion on the forum http://www.aroundthedinnertable.org/post/eds-and-comorbidities-are-all-comorbids-roses-of-another-name-7853067?pid=1290292242#gsc.tab=0

What really convinced my was reading about the Minnesota Semi Starvation Study. Many of the symptoms these healthy men showed after reduced nutrition matched perfectly those of my son.

I have found the Kartini Clinic blog to be really informative and helpful for young patients.
https://www.kartiniclinic.com/blog/

coffeemom wrote:
He tells them he eats every type of food, just doesn't mention not enough., Or the sneaky body checking.


By the way, if you and the scales are telling them a different story to your son, the professionals should be believing you and the scales. Anyway, the best psychological drugs are in food - it holds the raw ingredients for the body to make serotonin, melatonin, ghrelin and every other hormone the body needs for balance. So no matter the diagnoses, food and good sleep are basics for good mental health.

coffeemom wrote:
As of now, it is very difficult to keep his computer time to a reasonable amount. Doesn't stay outside or do anything else for more than 30 min and doesn't choose to.we are scheduled.now with the adolescent medicine but feeling like another assessment is ridiculous to get the help we need to do this. What do we need to conquer this at home? I'm going a little crazy. Thanks for your experiencial input.


When my s's weight was at it's lowest he needed his brain to be occupied every SINGLE second with activities that were not too demanding. So things like origami (he made 1,000 paper crane birds for luck), computer games and reading. My take on it is that what was going on in his brain was very, very scary and he pushed it away through activity but he was so malnourished that he could not do too much incl socialise or go to school.

Feel free to ask any further questions that may help you help your son.

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.
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