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Thursday, May 14, 2009

More Testing...

Sorry for the delay in posting news about yesterday's appointment. My computer was occupied by another human :)

Here's the skinny:

First of all, how ironic is this... In the hospital elevator, on the way to our appointment, a sweet old man and his wife stepped in ahead of us. Eric and I followed. So Eric - facing the elevator door and obviously towering above everyone at 6'7" now - hears the man behind him say, "Do you play basketball?" Well actually I'm on my way to find out whether or not I'll ever be able to play again. That's what he wanted to say. Instead he just answered with a smile - "yeah, I do." The old man said, "Well you should keep it up, because one day you might make a lot of money!" He was very sweet, it was just strange timing. Not that Eric hasn't heard the basketball question a thousand times, but most people stare at him and think of asking but don't. Except then. It broke my heart for Eric because I knew that whatever the doctor said, Eric was going to have to hear that for the rest of his life. Do you (or did you) play basketball? Later that day my dad said his answer to the same question when he was Eric's age was, "Nope, I'm an elephant jockey." Eric laughed when I told him that.

So, on to the visit...

Dr. Braverman said that since Eric does not have a lot of criteria for Marfan's, his is not such a clear cut case. He only has the pectus excavatum and the enlarged aorta. He would like Eric to have genetic testing to see if he has the gene for Marfan's. The test is 90% accurate, so if it says he has it, he has it (no false positives). And if that is the case, the doctor said no sports. It would mean that he definitely has the gene for Marfan's and his DNA is telling Eric's aorta to continue to grow bigger. If it says he doesn't have it, there is a 10% chance that he actually does have it, in which case Eric would continue to play sports and they would monitor him with frequent echocardiograms. Per Dr. Braverman, there is a chance that Eric simply has a big aorta because he's a big kid. The other doctor did not say that. She said his aorta is big and that's not good. Period. Dr. Braverman also said that Eric's aorta did not grow as drastically as we were told. He measured it himself. Eric has grown 9 inches in 18 months, and so has his aorta. It did not grow 1 cm in a year. It was more gradual than that. Dr. B said Eric will not die on the basketball court; his aorta will not dissect all of a sudden because they will be looking at it every few months. It won't just "burst" out of the blue. They will see that it's growing significantly and at that time Eric would have to stop playing sports because of the risk of it dissecting. Otherwise, like Dr. B said, "We don't want to restrict Eric unneccesarily."

I completely trust Dr. Braverman and what he's told us. He has as much, if not, more experience with Marfan's than probably anyone in the United States. He is on the Board of Directors of the National Marfan's Foundation and speaks at their annual conference.

Tomorrow I will take Eric to have blood drawn for the genetic testing. That should be interesting since he's never had blood drawn before :) The results take about 4 weeks. A long time ago I was told about the genetic testing, but many insurance companies don't cover it and I did not want to pay $2,000 out of pocket. The doctor's office checked with my insurance company and they do cover it. Yeah. Otherwise, Dr. B was going to check with colleagues who are doing Marfan's research to see if Eric could have genetic testing through them. Only problem with that is that it would take 6 months to get the results.

So we'll know in about a month. Hopefully it will show he does not have Marfan's, he can continue to play sports, and they will just monitor him every 4-6 months. If it shows he does have Marfan's, at least we'll know and we can move on.

Anyone have questions?

5 comments:

Anonymous said...

9 inches in 18 months?? Is that possible - coming from a 5'1" person. I would say that was a positive visit and I will keep my fingers crossed for more good news. What I wouldn't give for more 4" in height??? Okay 2". Tammy G

Anonymous said...

My fingers are crossed for Eric. He knows i love him and have him in my prayers... megan

Anonymous said...

Keeping my fingers crossed for Eric. 9 inches in 18 months??? Yeah that's gotta have a effect on the body...

Steph

kel said...

wow... that's so scary!! I'll keep you in my thoughts. Keep us posted.

Anonymous said...

me too

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