AmazingGrace
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- Jan 1, 2004
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A blood relative of mine just found out that she has something called Marfan Syndrome.
Some of the characterisitics are as follows.
A tall and thin body frame, long and slender fingers, and long arms and legs.
curved spine (called scoliosis).
Chest-wall deformities, such as a breast bone (sternum) that is caved in (indented) or sticking out (protruding). If the breast bone is indented, it may also be very narrow.
Eye or vision problems, such as nearsightedness (only being able to see objects close up) or a detached retina that can lead to sudden loss of eyesight. A detached retina can be repaired by an eye surgeon.
Disproportionate growth, meaning people with Marfan syndrome are usually very tall. This may be especially noticeable in children, because they may be much taller than other children their own age.
Flat feet.
Loose joints (called joint laxity) or being double jointed.
hypotonia
My mom died of an aortic hemmorhage. My brother who was built very tall and very thin and loose jointed had an enlarged aorta at the time of his death. The bad news in that scenario is that Benji is built just like him and shows many of the characteristics of Marfans.
There are a few tests that are possble indicators. Benji's wingspan is greater than his height. He's able to touch elbow to elbow behind his back and he can overlap fingers around his wrist. He had an appointment today with pediatrics and his doctor is very concerned with the other signs he's showing. She's sent consults for us to see a cardiologist, an geneticist and an opthamologist.
I have an appointment for myself next week, just to be on the safe side. Josh and grace don't seem to have any of the signs of marfans, but the doctor says that they may test them for the genetic marker. I don't seem to have any signs, but I may be a carrier or may have a mild form of it.
So that's what's new. This would explain so much about Benji. Obviously, the best case scenario would be that he doesn't have it. But if he does, then, barring any complications that we don't know about yet, he would just need monitored periodically with an echo or an MRI or ultrasound. Thw worst case scenario is that Benji is having valve or aorta problems that would require surgery.
He's excused from gym until further notice, no contact sports. He's going to be the coach's assistant. I'll keep you all posted on any latest developments. Please keep us in prayer.
Thank you,
Some of the characterisitics are as follows.
A tall and thin body frame, long and slender fingers, and long arms and legs.
curved spine (called scoliosis).
Chest-wall deformities, such as a breast bone (sternum) that is caved in (indented) or sticking out (protruding). If the breast bone is indented, it may also be very narrow.
Eye or vision problems, such as nearsightedness (only being able to see objects close up) or a detached retina that can lead to sudden loss of eyesight. A detached retina can be repaired by an eye surgeon.
Disproportionate growth, meaning people with Marfan syndrome are usually very tall. This may be especially noticeable in children, because they may be much taller than other children their own age.
Flat feet.
Loose joints (called joint laxity) or being double jointed.
hypotonia
My mom died of an aortic hemmorhage. My brother who was built very tall and very thin and loose jointed had an enlarged aorta at the time of his death. The bad news in that scenario is that Benji is built just like him and shows many of the characteristics of Marfans.
There are a few tests that are possble indicators. Benji's wingspan is greater than his height. He's able to touch elbow to elbow behind his back and he can overlap fingers around his wrist. He had an appointment today with pediatrics and his doctor is very concerned with the other signs he's showing. She's sent consults for us to see a cardiologist, an geneticist and an opthamologist.
I have an appointment for myself next week, just to be on the safe side. Josh and grace don't seem to have any of the signs of marfans, but the doctor says that they may test them for the genetic marker. I don't seem to have any signs, but I may be a carrier or may have a mild form of it.
So that's what's new. This would explain so much about Benji. Obviously, the best case scenario would be that he doesn't have it. But if he does, then, barring any complications that we don't know about yet, he would just need monitored periodically with an echo or an MRI or ultrasound. Thw worst case scenario is that Benji is having valve or aorta problems that would require surgery.
He's excused from gym until further notice, no contact sports. He's going to be the coach's assistant. I'll keep you all posted on any latest developments. Please keep us in prayer.
Thank you,
Prayers said and will continue.
I am happy to hear that... 
