Julie,
I can't answer the z-score questions really as I've never studied them enough to understand and what I do know of them, they don't seem to always make sense.  For adults 3.8 cm. is getting toward high normal size I believe, you don't say how much growth in what period of time.  A couple mm in a year to me wouldn't be as concerning as 2 mm in 6 months, etc.  However I'd never say ignore proper treatment.  You definitely don't want an emergency situation (been there, done that).  I think basketball definitely worse than volleyball, so good choice in stopping that one first.
 
I think there are at least 2 parts to the contact sports rule.  First every time our heart beats the aorta takes that pressure.  With sports that amount of pressure increases because the heart rate is faster so both the amount of blood going through and the amount the valve works increases.  So, the longer the activity is the longer heart rate stays up, but I don't think we can say because he sits on the bench his emotions and intensity have dropped to a normal pulsation amount either.  It's kind of like a balloon, the number of times you blow it up and the farther you blow, you see the weaker spots in the coloring, whether it's another time to same place it's been or you blow more air into it, either can cause it to burst where it is weak.
 
Secondly, the contact part is taking an elbow, ball,... to head or chest.  A direct blow can also result in immediate problems, with eyes or aorta.  I know kids get more competitive at younger ages, so I'd look at are they doing digs, running into each other, how fast is the ball coming and those type things to determine whether to risk the rest of the season.  Maybe there would be a vest he could wear that could help "resist" or lower the effect of an incoming elbow or ball.  I don't think there is an easy way to protect the head.
 
I hope that helps explain a little what the doctors are looking at.  Hopefully there are some artistic areas he can become interested in whether art, drama etc.  Usually it seems when Marfan people look they are really good in various areas.
 
M

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To: marfans_support_and_chat@yahoogroups.com
From: julie.hoppe@meadhunt.com
Date: Wed, 28 Jan 2009 15:26:19 -0600
Subject: RE: [marfans_support_and_chat] Chat question

Hi.

 

My son just had an echo that showed that his aortic aneurysm had grown a bit since the last time.  It is now at 3.8cm.  He is 188cm tall and 70.4 kg - which results in a z-score of 3.1    Because of this, the doc said to pull him out of his sports.  (he is 12 yrs old)

 

I'm ok with that, I don't want my son to be a statistic, but I'm trying to figure out the risks he would take if he stayed on his volleyball team for the rest of the season (march 31).    As of yesterday, we stopped having him play basketball.  So, that alone has drastically reduced the amount of pressure on his heart - but I'm not sure its enough to still allow him to finish his volleyball season.  Even if we DO allow him to finish the volleyball season, his participation is going to be changed to lessen his exposure.  I'm not stupid,  I know that simply telling a 12 year old kid to slow down and not hit so hard isn't going to guarantee that he will.

 

I  guess I have a few questions - and I have asked my doc, but unfortunately, he is out at a conference right now.  I know he will get back to me, I'm just curious on other's thoughts/experiences.

 

Some questions:

 

What specifically is the concern with competitive sports?   I understand that it puts more stress on the aneurism.  What I wonder is… is the stress cummulative or not, that is, if the child does something for 5 minutes rather than 50, is the risk the same, or less?

 

I know that dissection and rupture are the "risk", what I don't know is what is the probability of that happening with a z-score of 3.1 or a measurement of 3.8cm?  Is there any data on when dissection or rupture is likely to happen?

 

If anyone has any insight for me, I'm willing to listen. After watching my son cry his eyes out at the thought of quitting mid-season, my maternal instinct is to allow him to play, but I certainly don't want to open him up to undue risk, and I'm very unclear of the risk at this time.   

 

Thanks

Julie

 

From: marfans_support_and_chat@yahoogroups.com [mailto:marfans_support_and_chat@yahoogroups.com] On Behalf Of Iowa Marf
Sent: Wednesday, January 28, 2009 3:10 PM
To: marfans_support_and_chat@yahoogroups.com
Subject: RE: [marfans_support_and_chat] Chat question

 

We use Yahoo IM conference feature.  Yahoo IM is a free download if you don't have it yet.  Then send a friend request to iowamarf (me).  I usually open, and post beside my name that chat is open.  If I can see you online and know you want an invite I try to automaticly send invite, if you don't get one and want to join us just IM me.  We are usually there Sun, Wed, and Fri from 8 eastern until everyone gets tired or has left!  If other times are needed we often can find people available to lend support.
 
Marsha

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To: marfans_support_and_chat@yahoogroups.com
From: jgreene@tbaytel.net
Date: Wed, 28 Jan 2009 17:29:15 +0000
Subject: [marfans_support_and_chat] Chat question

Hi,
I joined this group today and would like to know where I go to
participate in a chat.
Thanks,
Jenny
jgreene@tbaytel.net

 

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