I know that I haven’t blogged in quite awhile.
Trust me, I have a really good excuse.
We have been busy with an array of medical appointments, testing, evaluations and therapies for Bronx and Daegan.
It’s been completely overwhelming.
Daegan is currently undergoing testing for Pituitary Dwarfism. Despite the fact that he is following the same stunted growth pattern as his older brother, the endocrinologist’s office initially didn’t want to test him at all.
They didn’t offer any valid reasons for not wanting to test him and after I insisted (based on the fact that his preliminary blood work showed the same low IGF-1 factors that Bronx had, but with even lower numbers than Bronx’s) the office eventually relented and the doctor agreed to run the tests.
Testing for this condition is a lengthy and difficult process. Especially if you have had to watch another child endure it. It requires two separate stimulation tests, both of which involve a one-day admitted stay in the pediatric unit at the hospital. During that stay, the child has an IV placed, is given a drug that stimulates the release of growth hormone, and then the hormone levels are tested every half hour or hour (depending on the test) with a blood draw.
Since small children love being poked with needles and having their arms immobilized with IVs, you can imagine how much fun all of this is. Add in the fact that the kid can’t eat from after midnight the night before up until after the testing is completed, and you have the makings of a day straight from childhood hell.
The worst part is you have to do it twice.
After both of those those tests confirm the diagnosis, then the child has to undergo a sedated MRI to rule out any structural pituitary abnormalities.
If you ever want to see a temper tantrum on steroids, try seeing what a toddler is like after waking up from sedation. After Bronx woke up from his MRI, he was completely disoriented and irritable. To the extreme.
I never seen a kid act like that ever. And I dread how Daegan will react after his MRI, which looks like it may be inevitable at this point.
Because, yes. After completing his first round of stim testing, we were advised by his doctor that he had failed it.
By a significant margin. The cutoff levels for this particular test are supposed to be 10 or higher.
Daegan’s levels topped out at 3.65. His other levels were in the 2’s and even 1’s.
He’s going for his second round of testing in the next few weeks, but it looks as if the boys are heading for the same medical diagnosis.