More Health Issues

EDIT:  This post was written a few days ago and I’ve debated actually posting it because it sounds like I’m whining.  But the point I really wanted to make is that parents need to trust their instincts.  Pediatricians don’t know everything.  No one does.

I really thought our journey with doctors and hospitals was over.  I knew that Little One was slower to walk and talk, and recently I enlisted the services of Early Intervention in our area.  We have Speech Therapy, Occupational Therapy, and Eating/Feeding/Swallowing services on deck.  However, the Failure to Thrive diagnosis has been eating at me.  LO’s growth chart is starting to show a disturbing plateau as far as weight goes.  He was the 5th percentile for the first few months and at 9 months old, fell off the chart.  And every appointment he is farther (or is it further?) away from the normal 50th percentile.

AGAIN, my ped said “don’t worry, let’s see what happens”.  AGAIN, I trusted my mommy instincts and made an appointment with a pediatric GI doctor.  Our appointment was two weeks ago.  And AGAIN, I am thrilled I went with my gut. (And I broke up with my pediatrician…but that’s another story for another post)

Dr. R looked at LO and his chart and point-blank, told me that if he keeps on this course, he would be on a feeding tube within a year.  Scary, no-bullshit, in-your-face words.  Words I needed to hear.  I had been working with a nutritionist for a few months now and she had me get high-calorie and high-fat foods into LO.  Whole foods.  Grains, legumes, cheese, cream, protein.  Adding cream to his milk.  Adding oil to his smoothies.  No more on-the-go pouches, no Pediasure, no crap food.  Until yesterday, when I saw Dr. R.

I was told to get the calories into LO any way I could.  Pediasure 3x a day or Carnation Instant Breakfast.  Ice cream.  Milkshakes.  Full-fat anything, and screw the “healthiness” aspect.  Just get the CALORIES IN HIS BODY.  Now he’s not a picky eater but he’s certainly not a voracious eater either.  So to have carte blanche to feed him ANYTHING was a God-send.  We put him on an appetite stimulant 2x a day, to weeks on and two weeks off.

OT saw him recently and recommended we see an ENT for his tongue.  It’s too high, doesn’t have a dip in the middle like it should.  My head is spinning.

More tests…to rule out cystic fibrosis…celiac disease…

Did I mention my head was spinning?

ANOTHER EDIT:  Cystic Fibrosis test was negative!

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3 Comments (+add yours?)

  1. Summer Ehmann
    Sep 05, 2012 @ 09:04:03

    Im so sorry you are all facing these new challenges. But good job trusting your mommy instincts! Please keep us posted!

    Reply

  2. sezzaknits
    Sep 05, 2012 @ 19:59:27

    Doesn’t sound like whining in the slightest to me!! Great work on trusting your instincts, thank goodness you did – hopefully you will see some weight gain for your efforst soon.

    Reply

  3. sep121675
    Sep 05, 2012 @ 20:44:41

    I read your post earlier. It is so tough what you have to go through trying to find answers. When I read it I immediately thought of my sister. I hope you don’t mind but I read it to her and she believes your on the right track. Everyone told her so many things and thankfully her instincts were like yours. She suggested perhaps talking with a geneticist on some level?She is no where near an MD and is not one of those nurses that over steps her qualifications but she struggled with the metabolic “big question mark” with Jax.

    I can give you her number as she knows some names in the Boston area. It is a terrible feeling to not know and maybe shed can give you some insight.

    My thoughts are with Myles and all of you as I understand how this can be very heavy and stressful upon everyone.

    Xxxoo Sarah

    Sent from my iPhone

    Reply

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