Most of the time, I like to post about things I WANT to remember about the boys being toddlers. I don't want to rewrite the past, I just want to dwell on all the lovely aspects of having two little munchkins. There are, however, certain challenges that we've faced with them and, since there are people who check the blog for updates on these topics, I will give one grand update before the end of this year, 2007.
In March, Jaxon received a diagnosis of PDD-NOS. At the time, the pediatric neuropsychologist was a bit hesitant to give the diagnosis, as she felt a child this young could really go either way and she almost preferred to take a "wait and see" approach. Knowing that treatment and therapy could only help (and would only be covered by insurance with a diagnosis), she gave us the diagnosis and we started our journey into the world of autism spectrum disorders.
In August, both boys were diagnosed with selective IgA immune deficiency, which is the most common of the primary immunodeficiencies. For some people, they never show any symptoms and for others, they can become significantly ill. The boys have had chronic infections and GI problems, which is why it was a pediatric gastroenterologist who diagnosed them. Jaxon seems to be having the toughest time, as was the case last winter and is starting to be the case this winter. In the past seven weeks, he's had three ear infections, respiratory infections, pneumonia and high fever (unrelated to the ear infections).
So, where are we now? Nine months after the PDD-NOS diagnosis, things are looking really good. The boys have been removed from the "autism" track through the school district and it's been recommended that they attend regular preschool next year (if we choose to send them to preschool next year). They still attend school two mornings a week in a program for children with communication disorders, though their language has twice been tested to be in the normal range for their age-group, which is truly something to celebrate! Several doctors in the past month have told us they think the boys are completely normal, which again, is very reassuring.
All that being said, we're still being cautious in our celebrating. After all that I've learned about ASD, I find myself analyzing every little thing the boys (specifically, Jaxon) do and am hypervigilant about trying to "fix" odd behavior. It's hard to find a balance between accepting the quirkyness of toddlers and trying to notice "red flags" for autism. I think our biggest concern, right now, is Jaxon's obsessive behavior, at times. I know this can be normal for many toddlers, but given our history, it's something we're watching closely. Otherwise, language and social skills are fine, pretend play is developing normally and we have no real sensory concerns for the boys. These are all wonderful things. We still occasionally have issues with transitions, but not daily transitions, they're more of the major transitions... ie. traveling to see family, etc. Of course, it doesn't help that the boys are almost always sick when we're traveling. And, we're well-aware that the boys are strong-willed little guys... not necessarily a bad trait, though. :)
Anyway, we're feeling really good about the progress we've seen and every day our fears subside a bit more.
As for the immune deficiencies, we had a follow-up visit with our GI two weeks ago, as both boys had enlarged spleens in August and we wanted to make sure they were doing okay. Spleens are fine (yay!), but clearly chronic infection still seems to be an issue. Jaxon is being tested to see if he'd be a good candidate for intravenous immune globulin replacement therapy and if he is (though we suspect he won't be), we'll look into having Dexter tested, as well.
Our GI is highly optimistic, though (all this optimism!), as he's had many patients outgrown chronic infection by early adolescence. He feels like as the boys mature, we'll see fewer and fewer infections and GI prolems will disappear. Boy, do I hope he's right! In the meantime, we're trying to keep the boys as healthy as possible... and I'm so anxious for all the holiday traveling to be over, as they almost always seem to get sick when traveling. Aagh!
So, there's the update. Business complete. Tomorrow, I'll have something much more entertaining to write about! :)