Having Down syndrome makes one more likely to have one of many diseases or syndromes that result in 'failure to thrive'. These are recent findings, and it is why many of the individuals with Down syndrome who are my peers are fairly short. For many years the medical community even used a separate growth chart for children with Down syndrome. Now fast forward to 2013, in 2011, the medical community within the NDSS (National Down Syndrome Society) recommend doctors stop using the Down syndrome growth charts and transition to the growth charts used for 'typical' children. So, now that my little guy isn't growing well we have A LOT of doctors appointments.
This is where being a parent of a child with a 'complex medical history' gets INSANE! It always surprises me how much I have to educate our Doctors. But, at least I'm a scientist, and I view life through the goggles of experiments.
First we checked them check easy stuff, his thyroid and Celiac tests came back negative... while we wouldn't want Sam to have either of those diseases, it would have given us the fast and 'easy' answer.
Hypothesis: Sam is not growing due to a hypothyroidism, or Celiac Disease. REFUTED
We had to move on, what about food allergies... so off to the allergist we went. For once, in little 'ole Corning we are fortunate enough to have a Doctor who did his residency at CHOP and even knows some of Sam's doctors. So, we check him to see if he's allergic to any foods, nope, no allergies, not even a small one... again, didn't really want a food allergy, but that would have been an 'easy' fix too...
Hypothesis: Sam is not growing due to a food allergy. REFUTED
So, off to CHOP. We are extremely fortunate that CHOP (Children's Hospital of Philadelphia) is in network. And well, when they're the best pediatric GI unit in the US, what's a four hour drive! Our first appointment, basically just resulted in a list of tests. Our biggest concern was that he has an undiagnosed small intestinal web. The ordered test is an upper GI xray.
And that is why we are here in Philly today, to drink a barium milkshake and take pictures of Sam's insides. The good news is, we were in and out in less than two hours, and we found out Sam will drink anything if it's chocolate. The most upset he was the entire time was when we took his barium milkshake away! The good news is at first glance, Sam's plumbing is fully operational, no surgery.
Hypothesis: Sam is not growing due to a malformed small intestine. REFUTED
So, where does that leave us... I honestly don't know, a part of me hopes we just made a big to do about nothing. This mom is going to try to not worry and soak up a few glories innings of the Phillies, and the chorus of whoa's coming from her toddlers.
Hypothesis: 1) Mommy worries too much about Sam. CONFIRMED
2) Mommy's short so Sam's short. More data needed!
Thanks for reading my ramblings.
