What to do, what to do...

Steve and I have recently been facing our first decision in reagrds to Thomas' health care. To immunize him now according to the usual schedule or delay it until he's on prophylaxis. It's all about preventing inhibitors. Here's how it works, as it was explained to me:

Now that factor concentrates are safe and the risk of blood borne disease is virtually eliminated, one the biggest complications in hemophilia is the develpoment of inhibitors. An inhibitor is basically like an antibody which causes the person's body to attack the Factor VIII like a foreign substance. For these people the Factor VIII doesn't work any more. Factor VIII is essential for blood clotting so if it doesn't work, where do you go from there? I don't entirely know. There are ways to get rid of inhibitors but no one has explained it to me yet and I'm not about to try to explain it based on my limited research. Long story short: inhibitors are bad.

So, the goal at the moment in Thomas' care is to prevent inhibitors. Our hematologist tells me that there is some evidence to show that early prophylaxis may help. If he receives his first dose of factor in response to a bleed, he's more likely to develop an inhibitor. This is because his immune system will already be hyped up due to the inflammatory response caused by the bleed. In this hyped up state, his body is more likely to attack the factor. This is why the current plan is to start prophylaxis so early. At 6 months he'll be started on regular infusions of Factor VIII. This way his body can get used to it, hopefully in the absence of bleeding.

So what does this mean for immunizations? Well, the immunizations are given by intramuscular injection. This has the potential to cause him a muscle bleed which would need to be treated with a factor infusion. So that's exactly what we don't want. The first infusion in the face of an inflammatory response to the bleed, not to mention the hyped up immune system due to the immunzations themselves. Both these things make his body more likely to attack the factor.

There is another piece to the puzzle. Some people are more likely to develop inhibitors due to their genetics. Our particular gene is associated with a lower risk. Based on this, our hematologist has recommended that we go ahead and do the immunizations now with pressure held to the injection sites for 5 to 10 minutes. Our other option would be to wait until around 8 months of age, when his body has already experienced several doses of factor.

I've gone back and forth so many times on this. I have to admit that I'm as afraid of experiencing his first bleed as I am of developing an inhibitor. I'm sure a time in our lives will come that I'll realize that's ridiculous. Bleeds will certainly be part of our lives and I can't avoid the first one forever. But at this point, I can hardly bear to think of my 2 month old going through the pain of a bleed. Not to mention the trauma of requiring an IV infusion in those chubby little arms to treat the bleed. My first instinct was to delay the immunizations.

Then there is the other side of the argument. What if we delay and he gets whooping cough or meningitis in the mean time? He's home with me but he's got a big brother who brings every germ going home from school. People seem to take vaccines lightly, especially on the internet. If you look around the internet a bit, you'll get the impression that vaccines are evil and no one does it any more. Now that I'm in this position, I just don't get the people who choose not to immunize based on some fear mongering website that bases its "facts" on the study of a doctor who has since been proven to be a fraud. I mean, I'm not sitting here worrying about him catching diptheria but pertussis and meningitis are very real concerns. Kids get these things and they can actually die from them. That's why I just can't empathize with people who are anti-vaccines. If they choose not to vaccinate their kid based on their personal beliefs then "herd immunity" is a little bit weaker, leaving kids who have legitimate reasons for not being vaccinated a little less protected.

Where does Steve stand in all of this? His feeling is that we should do what the doctors recommend but he'll ultimately support whatever I choose. He knows that I drive myself crazy worrying about things. And I can't just defer to the doctors. It was presented to me as a decision so I'll blame myself if things go badly because I made the choice.

So this is where we stand right now. Thomas had his 2 month checkup last week (14 lbs 14 ozs, by the way!) and I did not do the immunizations. I've continued to agonize over it since then so yesterday I made an appointment to get them done next week. My plan is to hold pressure on the sites for 10 minutes, apply ice packs on the way home, and cross my fingers. I'll update after the appointment to let you know if I did it or if I got cold feet.