Hello all. I'm new here with mixed emotions. My sone had been complaining of pain in his legs, arms, and back for quite some time now and I passed it off saying "honey, it's just growing pains. Take some Tylenol". It never let up for him. When he comes home from
school he cant make it up the stairs. I knew something else was going on so I scheduled an appointment with a pediatric Dr. He did some blood work and said he would call me back. I got the call from a nurse and she told me everything came back normal. She told me the Dr says you need to take him to the ER because he doesnt know whats wrong with him. I was shocked! I told her to tell him HE is a Doctor why should I have to go some where else? I told her he could at least refer me to some one else! At that point I knew he wasn't the right Dr for my son. I scheduled another appointment with some one else. I took him in yesterday and she measured his height 71' and his length 75'. She asked me about his sunken in chest? I told her he had asked me about it but I didnt think much of it since his uncle is the same way. My son has a curve in his spine that I have x rayed every year. When we got all done she brought in a book that had Marfan Syndrome and she wrote down and told me to look it up on the internet. She scheduled him in for an ECO this coming Tuesday. She said my son couldnt do any activity till this test came back. I was in a panic at this point and my husband was not with me. I went home and looked it up on the internet and I was shocked! It was like I was looking at my son and all the health issues he realy is going through. I feel guilty that I thought it was growing pains. He is so tall and skinny. I just wanted to cry but my son was with me when I looked it up so I held myelf. I'm hoping this ECO will be mild. can anyone tell me how you are dealing with this and what can I do to make it easier on my son? I dont want to go down the wrong path. I also found out the Doctor my son seen yesterday is married to a leading heart specialist that is well known in this area.
Posted on 06/06/09, 09:06 am
siredma,
