CF Clinic overview

ninjabridemom · November 2011

So Jake and I went to the CF clinic at Children's yesterday and spoke with a doctor and the clinic coordinator. They answered a lot of questions we had about treatment, infants w CF (first few years is focus on nutrition and diligently watching for infections -- no major lung issues yet), twins w CF (they don't try to keep them apart but will work to eradicate infections before they can get passed back and forth), and finances (did you know Mass Health can SUPPLEMENT regular insurance?! I had no clue). Also, they do recommend CF kids go to daycare, etc., and while we may not choose that route, it solidified for us that at the young stage, caregivers don't necessarily need to have full-out training (they won't be doing chest thumps, for instance, the most they'll do is give enzymes before eating). So phew!

What was most interesting to us was that this clinic focuses on holistic health -- they have psychologists, social workers, PT people, etc., all there for you and your kids. There's a parents meeting (no support meetings for kids b/c CF'ers shouldn't hang out together ) and tons of online support, too (which I'll be pushing the kids towards as they need it, since they can't meet in person). Holistic health is important to us in general and we like the focus on it here particularly.

Overall we feel better about the whole thing. We'll still have a serious conversation if it turns out they are positive, but we feel like it is a much more manageable situation than what we were told before. Not that the worst still couldn't happen, but it's not imminent. We're already thinking about the little things we can do throughout their lives, too.