Sweety and I finally met with the endo yesterday and discussed test results. And what we learned was... Sweety needs more testing! Blegh!
The X-ray shows something funny going on in a finger and some of his toes that could be an indication of bone disease. (rickets and the like) The chances of that are slim, thank goodness, but it still needs to be checked out. And while the blood work indicated his IGF level is immeasurable, (below 24) the endo wants to know exactly where he's at, (22 or 3 or whatever) and how that compares to other IGF deficient kids his age.
Here comes the tricky part. So far we've been to hospitals for testing, but that won't work this time. Apparently hospitals indicate whether results are "normal" or not based on the results of all the tests that they've performed. But because IGF deficiency doesn't pop up much in kids this young, a hospital indication of normal or not may not have much data behind it. So now we're off to a testing facility that can tie into a nation-wide data bank of test results. Hopefully we'll be provided with a more accurate picture.
Have any of you been to such a facility? I'm wondering what I can expect for insurance coverage. So far we've been blessed beyond what we deserve, but I'd still like to know what I'm in for. Please send me an email or comment if you have any clue!
Don't quit reading yet; I've saved the best news for last! (tee, hee, hee) Sweety maintained his growth curve!!! When the endo's office measured him last May his weight and height landed him on the chart right between -5% and -10%. And the 2-ish inches and 3-ish pounds he's gained since then sticks him in the same spot! WOO-HOO!!!!!!
Pardon my vacancy, I'm dancing a jig for a moment (doot, de-doot, de-doot, ya ya!) Ok, on with the story:
The endo said that in families with a history of shortness, bigger infants can have a "corrective episode" where they don't grow for a while in order to place themselves in the percentile they were really meant to be in. This seams to fit as Sweety was a much bigger newborn than Smarty, and we all know that Ben and I have plenty of short genes swimming in our pool. We even have 3 or 4 super-short relatives apiece.
Don't worry, I know I can't count chickens just yet, but here's hoping. Thanks for all the prayers y'all. I'm sure that's what's making the difference.
3 comments:
Where is said testing facility? When do you have to go?
Yay on the growth thing!!! He really is so adorable!
Good luck with all of the testing for Sweety! Sorry that your family has to deal with all of that.
I'm sorry that you don't know much more than you knew before, but it sounds like he's still growing, so that's a plus! I don't deal with anything that has to take me or my kids to a testing facility so I'm afraid I can't answer your question. I do have a nephew who has Cystic Fibrosis, and another nephew that died at 19 months from multiple disorders. Neither of them were issues that you are dealing with, but their mothers may know something. I'll ask them for you, and if they can get me any info, I'll get back with you.
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