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Feeding our Families

Public Group active 7 hours, 58 minutes ago ago

A group for talking about nutrition, food challenges and keeping our kids (and ourselves) healthy!

Anyone have a BOY with an eating disorder? (9 posts)

  • Profile picture of Karen Karen said 2 years ago:

    Anyone with a child (over 3) with feeding issues, failure to thrive? Eating clinic admissions?

    We’re struggling with my SN child (he’s 10), he has become increasingly frail and he has been declining on the growth charts for some time. His doctor has been involved, but we can find nothing glaringly wrong. His blood tests show that he’s struggling nutritionally, but he TRIES to eat. No sign of diabetes or any other metabolic issue so far.

    Now he’s had chest infections he can’t fight off – croup twice (very unusual) – and he’s struggling.

    My son’s height weight started at the 50th percentile (after he recovered from prematurity) and has declined over the years to the 3rd percentile (weight) and 15th percentile (height). He has some alarming physical signs (growth restriction, delayed development, he’s not developing adult teeth, languno, etc). It may be related to his congenital syndrome (it’s too rare to know for sure), to kidney issues – oral aversions/OCD or it may be an eating disorder. Or a combination.

    We’re seeing his Pediatrician again on Monday. I was just wondering if there’s anyone out there who can relate while I rant – or even (!!) has a BOY or knows a boy with an eating disorder. Everything I’m finding on eating aversion and disorders is SO GIRL focused. he is NOT going to respond well to THAT.

    So frustrated.

    Karen

    Karen, working mom of 2
    @karengodel
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  • Profile picture of Sylvia Ross Sylvia Ross said 2 years ago:

    I assume you’ve seen a geneticist? My daughter (3) is being evaluated for a mitochondrial disorder that prevents her from being able to store/use stored sugars in her cells. They’re doing a muscle biopsy on Thursday to confirm it, but we’ve been treating her as though it’s the problem, and she’s doing better. Not much weight gain but at least she’s not losing or vomiting.

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  • Profile picture of Karen Karen said 2 years ago:

    Yes, my son has a rare/complex congenital syndrome, so we’re Genetics Clinics regulars.
    Unfortunately, it’s highly variable and rare syndrome – so it’s hard to predict. There aren’t mitochondrial issues with this syndrome.

    Sending you our thoughts, and glad you found something to help your daughter improve.

    Karen

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  • Profile picture of Sylvia Ross Sylvia Ross said 2 years ago:

    Thanks. It’s taken most of her life to figure this out, I can’t imagine getting all the way to 10 and not knowing what’s going on.

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  • Profile picture of Katja Rowell MD Katja Rowell MD said 2 years ago:

    Karen, Sounds scary. Does he have a feeding team? Is a nutritionist seeing him? If he’s trying to eat, are there ways to really optimize that? I imagine you have looked into so much, so forgive me if you’ve “been there, done that” but sometimes docs can really let nutritional deficiencies go for too long… Just a thought. Also, a blog (not totally related, but has some helpful feeds on swallowing disorders, and more) is http://www.aroundthedinnertable.org
    They have some interesting stuff on nutritional support. May or may not be helpful, but a really dedicated admin too who can perhaps connect you with resources…

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  • Profile picture of Julia Roberts Julia Roberts said 2 years ago:

    Karen,
    My son has had food/eating/appetite issues since he started table food. He breastfed until a year exclusively and when we added small pieces of meat he kind of shut down on foods with texture. He didn’t mind soft solids. He was born in 90% and fell down to 10-15%. He also has a kidney disease so failing kidneys did not help. When his kidney function was 20% and getting lower he feel below 10% and we started for growth hormones. He was not approved, but we did get a company provide free hormone until he was transplanted – about 3 months, that was at age 7. We lived by the amount of calories we could get in him. A speech therapist who had some extra training in feeding helped us. Oh, those years were so bad/sad/scary.

    All those years he’d spit out all meat. And he really only ate soft solids. He lived on cereal bars for years. Sometimes he’d venture out of the norm but mostly cheese, yogurt, bars, milk. And sometimes just one bite at a meal.

    By the time he was transplanted 3/07 he was grossly underweight (35lbs) and the transplant did help a little. Maybe 15 lbs? Then he stabilized but lost weight on concerta. He recently had a mental break and started an anti psychotic to treat mania and he’s gained 15lbs. Looks like a completely different child. During the years we did work with a nutritionist on the transplant team and she did ease my conerns about what we were getting in him (poptarts and pears only for weeks?). Stressful.

    Site co-founder and tired special needs mom to two cute kids; Gage and Quinnlin. Kids who’ve endured more than their share of medical and emotional issues. ARPKD (recessive polycystic kidney disease), ocularmotor apraxia, delays, IEPs,mental illness, kidney failure, dialysis, and kidney transplants
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  • Profile picture of Becky Decker Becky Decker said 1 year, 12 months ago:

    Our son had growth issues, aversions to protein and chronic constipation. He was in daycare full time, with Grandma day once a week. We did a 10 day food log and I was amazed at how little he ate at daycare and how much at Grandmas. We started feeding him breakfast at home and more of the types of foods he ate at Grandmas and he is much better now. He has extreme shyness issues so did not want to eat around his friends at daycare. Good luck with your search.

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  • Profile picture of Katja Rowell MD Katja Rowell MD said 1 year, 12 months ago:

    Good sleuthing. The intake analysis can be priceless in my work, I often ask parents to add written comments about the context, if there was conflict, how anxious the parents were with a certain interaction, even phrases they are using. Sometimes the actual “nutrition” aka food part is only a few lines, but the other notes can go on for paragraphs! The more you can fill in the picture with feeding, the better you can problem solve. I’m so glad he is doing better now!

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  • Profile picture of Karen Karen said 4 months ago:

    Thanks everyone for your great input.

    We continued with our investigation – he’s still severely underweight (his BMI is around 13) and has multiple aversions. We’re just at the tail end of 6 months of tests (!!) including a full psych evaluation, GI workup and metabolic check (including kidneys). It looks like it may be a combination of an official Anxiety disorder, OCD features (hates sticky or pudding textures) and a worsening & serious neurological problem (Chiari) that may have impaired his ability to swallow.

    We’re still on the journey, I will keep you posted!

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