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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joanne34 Show full post »
LauraCollins_US
You are doing the right thing to ask questions and think this all through. You are clearly trying hard to find the right information, and to work with what you know and the resources you have. All that is going to help your daughter and your family!!

A few observations on what you've described, from a parent who has watched a lot of families experience the learning curve you are on:

Blood tests do not, as far as I know, tell us much at all. Unfortunately, what I hear from experts is that blood tests will remain pretty normal until right before fatal consequences. Not all doctors are aware of this. Malnourishment is a weird medical state, and the body tends to compensate for it until it actually can't. In other words, a bad blood test is really bad, but a normal one doesn't indicate health.

Although missing one meal probably seems like a better situation than missing two or three, this is something most of us learn the hard way: without not only all three meals but also snacks and usually a pretty high level of calories and fats, it really isn't about how much malnutrition but if any is present. The (growing) body needs a lot of nourishment to regain lost tissue and function, and even more to maintain it, and any malnourishment at all is truly dangerous at any weight for those with this brain predisposition. The longer a person is in any way malnourished the lower the chance of cognitive recovery. We all start out wanting to make it easier, and needing their cooperation, and being happy for any non-negative movement but malnourishment is truly brain damage, and every day counts. Every meal counts.

It gets worse before it gets better for most patients. That means trying to make it easier or getting more cooperation may actually delay or prevent the urgent need to recover. I haven't yet met the family whose ill person got better without some rough spots, and it is almost always the parents who have to make that happen despite the distress.

The availability of treatment is not usually matched to the need of the family. Ideally, all patients would begin refeeding on day one of diagnosis, and have all the clinical and family support necessary. In the real world, specialized care may be quite delayed, and the level of care may be quite weak, and the clinical advice may or may not be evidence-based. The gap between what the patient needs and what is available is usually us, the family. A clued up family is a lifesaver, literally.

Your daughter is at an age where you have so much agency, and one that can be much easier to successfully and more quickly turn the ED around. As they get older, their ED gets meaner to them and smarter at outflanking you. With good information, support, and a plan, you are in an excellent position to successfully intervene to save your dear daughter's future and maybe her life. As scary as that may sound, I think you'll see that message reflected countless times among the families here.

Your path will be unique, but we all have this in common: we love our kids, our kids need us, and eating disorders are still not well provisioned in healthcare or well understood by the public. You are getting a crash course, but you are also the VIP of the situation. Parents are ideally suited to protect and care for our kids, and clinical support is ideally there to make that easier and stronger!!
Laura (Collins) Lyster-Mensh
F.E.A.S.T. Executive Director
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joanne34
Thank you xxx
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