Thursday, 05 May 2011

  • "Bones"

     

    They call him “Bones”. This boy of mine.  A name I didn’t really foresee, being that one of my many frivolous concerns was the shortening of his name turning to his nickname, which I didn’t want.  But then again, I haven’t foreseen much of what’s happened in our lives over the last 8 years.  So, Bones it is.


    And this name, I don’t mind.  This nickname is meant to be fun, reflective of the care his teachers have for him (after all they are the ones who came up with it).  But it does bring to full focus one of the many significant concerns we have for J.  He’s too skinny.  Genetics does play a part; I was very thin, string bean and bean pole being my nicknames for a short time….but he’s even skinnier than that.  


    We’ve changed his diet, we’ve been radical about it really.  It worked…initially, but it’s declined.  Of the foods he *can* eat, there’s very, very few that he *wants* to eat...that he’s willing to eat.  He’s withering away.  Getting scary skinny.  Almost emaciated.  Lethargic.


    We’re making all the moves we can think of.  Our GI is concerned about full blown Celiacs disease so a scope is being worked out.  Blood work.  Nutrition again but through a different venue.  Immunology.  All the avenues we can think of.  We’re working hard at getting him to branch out to foods he used to enjoy and he can have, but hasn’t had any interest in.  


    For all of this, C and I find our thoughts muddled.  We’re crossed with the idea that we keep foods from him that are “allergens” to help his body retain nutrients.  To be healthy.  To keep the elusive weight on his body.  Yet, it’s not doing that...the diet...leaving us trying to deny the pit at the bottom of our stomachs telling us our son is starving.


    So, for now, we’re just basking in the warmth of a nickname born of the tenderness of his 2nd family, his teachers…for now, Bones it is.

     

Comments (6)

  • AGreatPerhaps@xanga

    Heh, I can sort of relate to the situation. Well, his. Currently, for what reason we don't know, but my body does not really want to tolerate any food. The few foods we've figured out I can sometimes tolerate have either never been my favorites, or gotten old quickly, so their being few foods he's willing to eat, I can understand. Lovely how that works out... because it doesn't make the problem any easier.
    Also... if you do end up doing an endoscopy for Celiac's anytime soon, be careful. Maybe you have a great GI office, but mine were some of the most incompetent people I ever dealt with. They SERIOUSLY almost gave me a colonscopy, like all the way up to getting the OR type area set up for doing one instead of a colonoscopy. If I hadn't been able to tell them different, they would have so you might want to make SURE they have it all down right if he's not old enough to understand all that or wouldn't be able to or want to tell them they're wrong or something. The nurse just laughed when I said it was an endoscopy and said I seemed a little young for a colonoscopy. >.> They didn't seem terribly alarmed at their near mistake, and I found out afterward, unfortunately, it's not all that uncommon a mistake. So just be on your guard and make sure they do the right thing.

  • anonymous

    "leaving us trying to deny the pit at the bottom of our stomachs telling us our son is starving."

    Why would you try to deny that your son is starving, instead of admitting that he is starving and letting him eat more?

    I wonder what is the worst that could happen.  Could he starve to death, if he stays on the diet?  Could whatever behavior this diet is supposed to control worsen to the point that he kills someone, if he doesn't stay on the diet?

    This seems like a life-or-death issue!  :(

  • GinaStAubin

    @Juniper - The reason he is on the diet is because blood tests showed that he had high allergic reactions to these foods and his body isn't processing them correctly leading to toxins in his body.  We're doing what we think is best, however, that being said, we think there's other issues and have sought a different kind of opinion today...an opinion that agrees with what we're thinking...let him eat what he wants...so that's what we're doing, slowly returning him to the foods he wanted to eat, in moderation. More definitive testing to come.  But, I completely hear what you're saying...because that's what we were saying!  Thanks!

  • GinaStAubin

    @AGreatPerhaps@xanga - That sounds like a horrible experience.  Fortunately, we love our GI and know what his reputation is....unfortunately, he doesn't work in the hospital that J has most of his procedures done at and would have to be forced to trust another doc...we're looking in another direction for the same answers so we don't have a bad experience or an unnecessary procedure....like a colonoscopy. 

  • AGreatPerhaps@xanga

    @GinaStAubin - Yeah, it was definitely less than ideal. Our appointment was at eleven and we weren't even taken back for my IV and such to be set until like four in the afternoon, and they shooed us out of the office minutes after me waking up, only for me to discover fifteen minutes later I was having some kind of rebound reaction to the medicine that sent me to the ER the next day. >.< But that was just bad luck, I suppose. It's always good to be super careful with that stuff though. I'm sure having a sick child you might understand a lot of that, but me being older when I got sick, my parents were a little less protective of me, and a little too trusting of doctors and we've gotten into some sort of sticky situations. It's terrible that people in the medical field aren't more competent than that, but then I suppose that they're only humans and unfortunately, subject to the same possibly flaws the rest of us are, like carelessness. Anyway, I wish you the best of luck finding answers. From experience I know it's not always as easy as it should be, but hopefully things will go smoothly enough and the future will be a bit brighter for your son and your family once you figure all this out. Best wishes. <3

  • ndin0sawr@xanga

    this is probably incredibly ignorant of me, but could it possible be cancer? i had a friend who went through the same thing. it took the doc's a while to figure out the cancer had spread to every organ except her heart. idk why. praying that it's not the case for you though.

  • Sign in to Comment

  • Give eProps (?)

About the Author

  • GinaStAubin
    • From: GinaStAubin
    • Name: Gina
    • About Me: Mom, wife, blogger, advocate for my son with multiple diagnosis. Autism, Epilepsy, Cerebral Palsy, Sensory Processing Disorder. I blog at www.SpecialHappens.com.
    Stats: This Week All Time
    Posts: 0 7
    Views: 0 2680
    Comments: 0 13
    View all posts by GinaStAubin

Who recommended?

Who gave the eProps?