After 575 days on GAPS, Carter is offically healed. Now he eats everything!

After 575 days on GAPS, Carter is offically healed. Now he eats everything! Well almost everything! He's still eating a real food/non processed diet for the most part and we will stay away from soy in all forms and cauliflower, mainly because Mommy is still scared of those foods. We are sticking with the 80/20 ratio of foods because now he can indulge in a cheat every once and awhile and he's just fine!

Tuesday, April 3, 2012

The Calm Before The Storm

I’ve been debating putting this update on here for silly reasons, like fear of judgment, but there have been several people asking for updates, and this blog is about Carter’s journey through this maze, so here ya go!

Carter hasn’t gained any height in 7 months, which is concerning. He has gained weight but is having trouble keeping it on; he keeps bouncing between 27 and 29 pounds. He has been 27 pounds since September. His pediatrician did a blood work up on him to test for metabolic disorders.

Due to the results, we have been referred to a Pediatric Endocrinologist. They are concerned with his Growth Hormone levels. Two tests were run and both came back on the low end of normal. These tests are not very reliable on kids under 5, so that is why we will be looking further into this to make sure we aren't missing anything. Luckily this specialist is local and our Pediatrician has already talked with her over the phone.  Our appointment is scheduled for April 20.

The testing also showed that there are still high levels of inflammation in his body. His numbers were 3 times higher than the normal range. Normal is 0 to 15. He tested at a 55. The test is called an ERS. The test only tells us there is generalized inflammation, and not the cause of it. This does help explain the chronic pain he has been in lately. Our pediatrician thinks that this may be telling us that his gut issues are not as well controlled as we thought. This may mean we go back to Stanford, but I'm not sure yet.

Thankfully our Pediatrician is taking this very seriously and thinks it's time to look further into any other issues that may be affecting Carter. We also saw a Child Psychiatrist who is helping us deal with Carter's crazy food stealing. He is also taking this all very seriously and seems like he will be a good advocate to have on our side.

So, all of this to say, there may be something else going on and there may be nothing else going on. But the doctors are looking! Thank goodness!

Why was this so hard to post? Because when I first got the call from our doctor, I cried. And cried. And cried. I couldn’t even talk about it. My mommy instinct says there is something else going on. It has said that for months. And now finally, the doctors see it too. Those test numbers show that my little one really IS in pain, ALL. THE. TIME. His growth stale started before GAPS and even though he’s eating a good deal of food, it’s still not breaking the stale.  He wakes up 3,4,5,6,8,10,12 times a night complaining of pain or just screaming. He doesn’t need new clothes or new shoes for the summer because everything from last year still fits. A soon to be 3 year old in 18 month clothes. At least he likes those summer shirts!

So now we wait for the next wave of our medical saga. We slowed down for awhile and things seemed to have calmed down. Now I realize, that was just the calm before the storm.


  1. Hugs and prayers! I hate to hear that he is in pain. :( I hope the testing sheds some light on wear to go next. I am curious about the growth thing; kids with Juliana's syndrome also grow very slowly. I have been looking into some additional nutritional stuff to help with that but I'm a long way from figuring it out.

  2. So sorry... I am kind of scratching my head at this point since another FPIES kiddo here in PA is being looked at right now for not gaining any height. They tested her growth hormone and she has almost none. They are doing an x-ray of her bones???

    Hang in there mamma.

    1. I've been told they do bone X-rays to look at bone maturation. They want to see if the bones are forming and developing correctly or if the body has stopped growing altogether. Depending on how his testing goes, maybe you can connect me with the other family.