Sorry but its me again.......

[EireCara]

Hi All......In December my 15 year old son passed out at the kitchen table..he had a very fast heartbeat. Since then he has had a holter monitor, ekg, event monitor, and today a stress test. He almost passed out during the stress test and his blood pressure hit rock botton. We were told not to leave the hospital until a doctor came to see us. He (the doc) said that Thomas would need to have a CT scan done in Dublin (large hospital...the same one Im attending) to look at his 'major vessels' and heart. He also said that during the test Thomas' heartbeat showed some irregularity during ''part of the heart rhythm.''

Im confused about this.....why they would do a CT scan for an irregular heart rhythm. What are they looking for????

Iv been wondering about Marfan Syndrome myself....Thomas is 15 yrs old, he is 6ft 1 1/2in tall, his Dad was only 5ft 7in. He is shortsighted, and has VERY clicky joints. Also he can pull the skin on the side of his face and neck right out. Its unbelievably stretchy. He does it as a party piece to amuse his friends. Not one of them can do it...(nor can I and Im the old one with the saggy skin).

Has anyone got any thoughts on this??????

 

[briansmom]

Jacqui,
The CT will look for artery blockages and/or aneurysm. Marfan is diagnosed by having 3-4 of the following Marfan symptoms. Arm length 4cm greater than height, aortic aneurysm, certain eye problem (can't recall exactly what it is), sunken or protruding chest, high palate (usually with crowded teeth), double jointedness (can he pull his thumb back to his wrist). Go to www.marfan.org for a full list. We suspected that my son had it so I have done a fair amount of research. We have found out that my son does not have it (he only has 2 symptoms).

Good luck.

Here is some info:
Marfan syndrome may also affect eyes. More than half of all people with the condition experience dislocation of one or both lenses. Great care must be taken in the health of the eyes as retinal detachment is a possible complication of the syndrome.

Heart and blood vessel abnormalities are also common. The valve between the left chambers of the heart may be large and soft, resulting in an abnormal valve motion when the heart beats. In some cases, the valve may leak creating a heart murmur. Small leaks may not cause any symptoms, but larger ones may cause shortness of breath, fatigue, and a very fast or irregular heart rate. Other symptoms include stretch marks. People with Marfan syndrome are also at increased risk for developing an abdominal hernia where a bulge containing part of the intestines develops.

 

[aussigal]

Hi Jacqui,

have a read through these two sites ...

http://www.ednf.org/

http://www.marfan.org/

The very stretchy skin could be a sign of Ehlers-Danlos Syndrome which is another of the Connective Tissue Dsorders.(Similar to Marfans)...it could also account for those clicky joints...Marfans also could be a possibility, it can occur from a spontaneous mutation.
There is an excellent site with info on EDS...it has about 8 different types. Hypermobility is one of the types that springs to mind.

Do you guys have a Genetic counsellor that you could visit for a consult?...they are good at figuring out stuff like this.
The Marfans site which is also excellent also has some suggestions of conditions that are similar.

Good Luck ...

 

[Susan BAV]

Marfans: I think flat feet and long fingers and toes too; am I right, you who know? I had a suspicion about one of my sons but his echo did not show bicuspid. I am guessing that the CT scan is looking for cardiovascular abnormalities. I have been wondering how your son has been. Keep us posted, Jacqui? And tell your son hi for us. We hope it all goes well for both of you.

 

[EireCara]

Thank you Deanne, Aussigal (Ton) and Susan.....Sure hope its a big NO for Thomas having any of the connective tissue syndromes out there...gulp.