Bo was born on 6/3/07 with the rare congenital disorder currently known as Microvillous (Microvillus) Inclusion Disease. It took 2 hospitals and 5 weeks to diagnose. He became the 61st baby in the US to receive Omegaven. His nutrition is 100% TPN/Omegaven. We believe there will be a cure for this in our lifetime, and that a transplant is NOT the best option for this disease. This is our story.
Wednesday, December 30, 2009
Pix From Hawaii (Oct)
I know, I'm behind on posting pix. Sorry. But to ally anyone's anxiety about the last post referring to inpatient infusions: no worries, this is just a precautionary measure in case Bo experiences an allergic reaction to the infusion. As with all medications for children, the toxicities and dosing are usually done off-label. The liability and study design to include children on a label are just to high and complex for any pharmaceutical company to openly pursue out-right. So, what usually happens is the pediatricians and pediatric specialists just have to guess and hope it works. I know. Scary. But what can you do? Anyway, by the time a product is on the market in the US, those safety issues are usually very well documented. And then, after it's been used in the pediatric population for a long time and there's a lot of data from its use on the market, a company will THEN apply to include children on the label. More to the point, Bo's infusions are so low risk that we usually just check into the floor, get him hooked up and go straight to the playroom, returning only to watch some Thomas Train DVDs that Child Life has brought by. They only do vitals before we hook him up and right before we leave. But it's a good precaution in case something does happen. And, hopefully, after the 6th one they will let us do these from home.
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2 comments:
muaaah!! love you guys in hawaii...*sigh* xoxoxo miss you!
ooooh.. the pictures make me miss hawaii... the smell, the feel of salt in the air. ugh why does it have to be so darn pricey to get there!
miss you all, happy new year!
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