Yes, he had the test. When he tested positive for Marfan's they tested me even though I had very few symptoms, no hypermobile joints, no scoliosis, no pain except for migraines. There are people with Marfan's that have low muscle tone. His doctor said a connective tissue disorder could be the cause of all of his symptoms including the hypotonia and she tested him for Ehlers Danlos and Marfan's. When test results came back we were told that it was a mutation on the FBN1 gene, but one they had not seen before. I need to see a cardiologist but there isn't time to see one before my son's surgery next week. I am going to do my best to stay calm during the five days I will stay with my son in the hospital. I remember the old expression "don't blow a gasket" and thinking I could almost literally blow a gasket if I have a dilated aorta and my blood pressure goes up and stays up really high. I have white coat anxiety. I am sensitive to sounds and smells when I have migraines. I am extremely sensitive to seeing my child in pain. I have tried to prepare myself mentally and physically. I have worked out every day, lost 10 pounds, and have been eating a heart healthy diet since I found out that my son would have to have surgery. This is going to be the most challenging thing we have ever had to face.
