Musings of a Marfan Mom

Recent Cardiology Appointment

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I’m BAAAACK!

Didja miss me?

I feel like the past 10 days or so have been another lifetime…my grandmother passing away, our trip out of state for cardio appointments, then our vacation.

I thought that today I’d share the info we learned at our appointment. Now to date, J hasn’t been on a beta blocker or losartan yet. I don’t think I’ve ever come out and said it here, but I take losartan and have since M was 7 months old (minus being pregnant with J). It has really helped my breathing. However, I haven’t wanted to rush J into taking it. His z-score has been pretty stable since birth (aorta not enlarged) and I’ve had concerns about losartan’s effect on puberty. I know the mice data has been convincing, but mice are not humans and if the human trial was as miraculous in humans as it was in the mice, I figure the US trial would have been stopped by now and everyone switched to losartan. (And no, the fact that it hasn’t been stopped doesn’t mean that losartan won’t end up being a better option, just that it’s not a flawless miracle drug.) I know it’s helpful for babies who are severely affected, but I think it’s more gray for the more “average” Marfs. If J had been eligible for the trial I would seriously have considered putting him in it but he wasn’t even born in time, so Mark and I decided to wait and see how things played out instead of rushing to try out losartan.

Anyway, all that to say that we’ve been taking our time with medication. Once J was diagnosed with asthma we knew beta blockers wouldn’t be an option anymore, so then it’s just been a matter of holding off on losartan as long as possible.

The echo itself was awful. I’d debated about asking our doctor for a script for versed (a light sedative) for J before his echo, but my other Marf Mom friends assured me his iPad would be enough to keep him occupied and calm. Liars, every one of them! I had my echo first, which I thought would make J more comfortable with it, but once it was his turn he started screaming and hiding behind chairs. He wouldn’t lay down and I ended up having to sit him on my lap, such that the echo tech had to reach around from behind me to try to run the test.

When we go back in 6 months, we’re going for the versed.

My echo was stable, and my tricuspid leaking even seemed to clear up a lot. There may be a lot of Marfy dysfunctional things about my body, for but for the time being my aorta is one sexy beast. A slim sexy beast.

J’s aorta grew between 1.1 and 2.2 mm though. Normal aortic growth would be 1 mm in 1 year, and his growth was over 6 months. So, not ideal. His z-score hopped up a bit, but not terribly. Our nurse practitioner gently suggested now might be the time to medicate. It’s a gray area now, but with another growth spurt like this, the next echo definitely wouldn’t be.

She brought in our cardiologist and we all had a really great conversation about losartan. A couple of international studies have been/are being published showing that losartan does protect the aorta. Our doctor has also basically read everything on the drug ever and assured me there isn’t anything documented on causing issues with puberty. I felt a lot better about the idea of J taking the medication after that, particularly after the doctor volunteered that if J was his son, he’d start him now. Mark and I agreed that after initial liver and kidney function bloodwork (which J had yesterday), he would slowly start the medication.

We also got to discuss some of the up and coming research. I’ll never forget the Philly conference in 2006, sitting in the big lunch room while Dr. Dietz presented about losartan and showed pictures of young patient before the medication and after. I felt…electrified. I knew things were really going to be changing for us, in a bigger way than had happened in awhile. When Mark and I contemplated having a child with Marfan, I knew that no matter what, that baby would be coming into a different Marfan world than existed for me, and that it would be a better world. I don’t believe that losartan is the be all, end all cardiac treatment for us. I think it has gotten the ball rolling on something great, and as I talked with my doctor at our appointment, and as I’ve heard from some other researchers, I’m reminded of that electric feeling.

With the new research, what has in part spring-boarded from losartan, we are standing at the cusp of something fantastic, I just know it.

J, also on a cusp

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4 Comments

  1. The news about Losartan and what it can/is doing for people is awesome. And I agree — the Marfan world that our kids are growing up in is so much greater than the world that you and Bill were born in. Can you imagine the possibilities in the next 10 years!?!?! Dr D rules! :)

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    marfmom Reply:

    It’s going to be a whole new ball game. I really believe that.

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  2. Exciting stuff!

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  3. Gosh, the echo experience definitely sounds challenging. I totally back you up on the versed option next time so J can at least be sleepy through the test.

    The news about losartan sounds very promising! I am glad that there’s been so much tangible progress in Marfan treatment that you can already see a different future shaping up for your child. That must feel so hopeful and exciting!

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