Registered: 1406089641 Posts: 411
Reply with quote #1
For those of you living the ARFID-life or who have read a bunch on it: what do you understand the goal to be? I am mostly talking about the kids with the variety of ARFID that has to do with volume issues due to hunger/satiety cues and/or real or perceived pain from eating.
I do understand in a typical RAN patient the need to restore weight and then maintain it (and continue to raise it) for a long time and watch state, etc, until eventually, hopefully, the patient can move on to a fairly normal (even if vigilant) life, and basically return to who they were prior to the RAN taking hold.
I do understand in a Selective Eating Disorder type of ARFID patient where the goal is to increase (sometimes dramatically) the types of food eaten — some of the SED kids literally have three foods they will eat, and sometimes that is from early childhood forward. So I understand that goal — and increasing the food variety may result in fixing nutritional deficiencies and/or bringing a child up from a low weight but as I understand it, it is the social and other issues with the pickiness that is the real thrust of treatment. I know this is over-simplified, but within ARFID there are sub-types and I am looking to find the ones who have never lost weight and don't have a dramatically restricted diet in terms of variety or sensitivities to texture, etc.
I do not know what the goal is for the kids with faulty hunger/satiety cues. Or who have always had pain when they eat the amounts they would need to eat to weigh significantly more. I am NOT talking about a kid who is medically unstable, or who has dropped weight and is no longer on their own established arc, or who is not showing appropriate vertical growth. For the sort of ARFID kids, on their own low arc, where they have always been small but there are no acute health issues from their leanness and height is within an expected range, is there truly a thought that Magic Plate or otherwise raising their weight (maybe as much as from, say the 3 percentile weight for age to the 25 percentile; or raising BMI from the “less than the First Percentile’ to the Fifth Percentile) — is there really a thought that doing that will create a kid who can then maintain that and who will actually be healthier in some way other than on paper? What have any of you been advised is the goal/end game of ARFID treatment for this sort of ARFID kid? For those of you who have similar ARFID kids, if you have made it through Magic Plate or any other method to dramatically raise weight to get to the numbers goals, what was the state of your kid at the end (again, assuming you raised their historic arc as opposed to returning them to a prior arc they had fallen off)? If there is not a pretty solid chance they will intuitively maintain that new arc, it is very very hard to do Magic Plate or otherwise "falsely" raise the arc if only to fight for life to keep it there. "The only way out is through" rings hollow to me so far -- Seems like there is no way "out" since there is no "through" if they never stop needing the meal-by-meal support/stress. __________________ Mom of either pre-diagnosis or non-ed underweight 12 yoa (as of March 2018) kid here to learn how to achieve weight gain. BMI steadily in the mid 12's for nearly her entire life. Born 2006. UPDATE: April 2018 diagnosed ARFID, I believe, based solely on weight being less than 75% of Ideal Body Weight (not sure if he also considered low bone density to be a significant nutritional deficiency - not positive he knew her bmd).
Registered: 1284535839 Posts: 3,653
Reply with quote #2
My D has AN so definitely no lived experience of ARFID here, but I have done a lot of reading about the subject. I think it is fair to say that no two eating disorders are exactly alike but there are probably more similarities between people with AN because in part of the diagnostic criteria. With ARFID there is such a mixed bag it becomes much more difficult to say what treatment goals are in general. With respect to your daughter though there are a number of things which I would suggest are likely to be treatment goals. You have mentioned in the past that your D is substantially underweight and also has marked issues with bowel stasis and constipation. Getting into a healthy weight range would be one of the goals along with hopefully seeing an improvement in her functional gut symptoms. You have also mentioned anxiety, since this is often a symptom of malnutrition again it would be hoped this would improve. You don't say if her bone age/density has been affected but it is probable if she is not showing clear signs of puberty at 12 that improvement of bone health would also be a goal of treatment.
My reading of much of the literature suggests that many of the larger programs are doing magic plate with their children too with fixed dietary requirements and increasing food quantities, for example this article from Rebecka Peebles group. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5331684/ They do note that there seems to be a higher incidence of NG feeding in kids with ARFID. There are also articles pointing out that although kids with ARFID don't characteristically have body image issues they do often have some concerns, and higher levels of anxiety than AN but less depression. You may also like to look at these articles too. https://www.adolescenthealth.org/SAHM_Main/media/sahm2015/Speaker%20Handouts/Wednesday,%20March%2018/K-Katzman_Everything-You-Wanted-to-Know-About-ARFID.pdf and http://file:///C:/Users/Bronwen/Documents/eating%20disorders/Prevalence_and_characteristics_of_avoidantrestrict.pdf __________________ 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.
Registered: 1522604543 Posts: 8
Reply with quote #3
This is sort of what I have been grappling with. I mean, I have a kid who likes food and enjoys a wide variety of foods, trying new things, etc. It's not selective eating. It's not "safe foods" and "fear foods." It's not fear of choking. It's not really even disinterest. We do apparently have a volume issue.
Currently we enjoy meals and cooking and trying things. He actually especially likes cooking and new restaurants, etc. Telling him food is medicine or setting up a situation where he must eat a specific amount is going to completely change his relationship with food, and I don't think in a good way. You talk about meal-by-meal support/stress...that is a HUGE thing, and this is a cost that must be considered. I'm going to teach him he has to eat more at the expense of enjoying the experience? Someone who already isn't enjoying it is coming from a whole different place.
Yes, we have to correct the nutritional deficit but how to get there while maintaining the good we have now is very unclear to me. How much is it worth? And as you point out, maintaining a long term habit is another problem (which we have yet to even think about). But long term, what is the goal and how do you maintain it? I have not seen a good answer so far.
Registered: 1521119942 Posts: 93
Reply with quote #4
I don't think that insisting on certain amounts needs to be stressful or a negative experience. It's simply what is expected, like doing chores or bed time. It might be necessary for you to have more snacks than 3 during the day. Or meals and snacks should be the same size. Like 7 small meals a day. If it's every two hours it should be possible.
Registered: 1396016102 Posts: 4,991
Reply with quote #5
really, I think Food is Medicine is a good thought for the parent, but it is not something I would want to say to my kid. So I'm with you on that point.
Somehow you will have to find your way to some combination of more calories per meal (hello canola / rapeseed oil, butter and the like), more volume per meal /snack (maybe encouraging a little more when he feels done) and more meals / snacks per day. I wonder if he has any ideas of what would help. My college roommate had trouble maintaining enough weight although certainly not an AN sufferer. At the grocery store, she would often hold up two similar products, ask which I thought was more caloric, and keep that one. (This was in the days before all the nutritional labeling.) Maybe encourage similar thinking for your son? I was amazed to find out how much more caloric the premium ice creams are (than regular) for example. Some here have found bread that has tons of calories despite regular size slices. Beverages add up, too as long as they are caloric. (I can't imagine that he should ever drink water if a caloric beverage is available.) But I know when I am thirsty at dinner, I can't eat as much as too much of my space is taken up with liquids. So maybe focus on ensuring that he comes to the table "prehydrated." I'm guessing you already know most or all of that, but I wanted to put it out there for whoever might be reading this. Keep swimming. xx -Torie __________________ " We are angels of hope, of healing, and of light. Darkness flees from us." -YP ♡