Thursday, January 19, 2012

Birthmark Update

I suppose it’s about time for a birthmark update. And this may or may not make any sense - it’s sort of a stream-of-consciousness thing.

Caedmon’s last treatment was in June, before we moved. We saw a new specialist here in the summer. We liked him, but he told us he prefers a more conservative approach. He even thought that Caedmon’s birthmark might possibly be a different kind of birthmark than a Port Wine Stain, but wanted to watch it for a while before deciding. Since Caedmon had already had 11 treatments and LBD had told us we’d be ok to wait a little while for our next treatment, we were fine to follow his suggestion of waiting until January (now) to check it again and see where things stand.

Honestly, in the time between, we’ve kind of struggled with our decision. And his recommendation. Knowing that we’ve come so far with Caedmon’s treatment is super encouraging. But thinking that maybe we are getting too conservative too soon is scary. Because we can’t get this time back, and when it comes to treating a birthmark like his, the younger the better. And we don’t want the last three years of treatments to be in vain.

The Vascular Birthmarks Foundation has a once monthly conference call with birthmark experts. The topic is different every month, and you can send information in about your particular situation and have the doctors discuss it with you. I was privileged to be able to join in a conference call this month with two experts who deal with PWS and Hemangiomas (one of them even invented something now used for procedures just like Caedmon’s). They both agreed that his birthmark is definitely a Port Wine Stain and advised a medically necessary, more aggressive course of treatment than the new doctor suggested. Which in one way was comforting (because we’ve done the right thing with his previous 11 treatments), and in another way, made me want to kick myself for not pushing with this new doctor. I know, they’re just seeing pictures and getting a brief history. But this is what they do every day, all day. The new guy has an excellent reputation as a physician and does treat a lot of birthmarks, but that’s not his main thing.

Fortunately, the birthmark experts on the conference call personally know two doctors in our area that they recommended we see for a consultation. Knowing that we had an appointment with the new guy coming up, we decided to wait and see what he had to say.

We saw the new guy yesterday. We like him. He’s a very nice guy and told us that when it comes to children, he medically treats each patient as he would treat his own child. I really respect that. He said Caedmon looks great and suggested we come back in a year. He also said he’d do a treatment if we really wanted him to, but he doesn’t see an urgency. I appreciate that he will do a treatment if we want him to, but I’m not quite sure what to think about a doctor that says, “I don’t think we should, but I’ll do whatever you want.” But maybe that’s because he’s used to doing a lot of elective procedures. Again, I appreciate his honesty and his approach. But at this time, I really would like to see what someone else has to say.

Because yes, it does look great. And I can’t say it looks any worse than it did 6 months ago, but since the danger with these birthmarks is not always on the surface, that doesn’t mean as much as one might think. The goal is not to make it look better, though that is a pleasant side-effect of treatment. (It’s about time the side-effects of something are pleasant.) The goal is to keep Caedmon healthy and keep the birthmark from affecting things like his vision, hearing, brain, bone structure, and mouth. See? Kind of a big deal.


My dream would be that we could just fly back to Children’s every three months and see Laser Beam Doc for treatments. Which is not really possible if we plan to continue to do things like eat food and have running water.

So our next thing is to jump through the hoops necessary to get a consult with one of the two doctors recommended by the birthmark experts. We’ll see what they have to say. At this point, it will cost a co-pay and the hassle of getting the appointment.

I’ll be honest, this has been one of the hardest parts of moving. New grocery store – fine. New places to find stuff – no big deal. New pediatrician – ok. But new specialist that deals with a birthmark on my child’s face that if not treated properly can cause all sorts of medical issues? Hard. Super hard.

Being a responsible adult and parent isn’t always fun. But I’m so very thankful for this kid. We prayed for Caedmon long before we knew his name or saw his face. I love him to pieces and can’t imagine life without this happy, sweet, thoughtful, loving, goofy kid.


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