Mary had her appointment at Sick Kids yesterday. We once again got the unfortunate news that Mary has Long QT Syndrome like my Mom, myself, and Gavin. They took an ECG before she was seen by her Cardiologist (she was not impressed by this process so we had to hold her down and keep her focused using a musical toy). After which it was read by her Cardiologist where he could most definitely see that there was a significant interval between her Q and T wave. He explained the process to us again like he did when he told us Gavin had it. I felt like I was in shock because I wasn't expecting both of my kids to have it but I was strong and held back the tears. We have elected to put her on meds early as we did with Gavin because I don't feel like leaving something as unpredictable as LQTS in the hands of fate. She will begin with a fairly low dose beta-blocker but she will also be getting some of my beta-blocker because she is still nursing. Her next appointment is in three months where at that time they will up her dose based on the amount of weight she has gained.
We were then sent down to get her blood drawn to be sent out to the States for genetic testing to see if she carries the LQTS gene. This was not fun at all and I don't wish it on my worst enemy. All you could hear were the screams and cries of little kids having their blood drawn. A mother's worst nightmare. It was a number system so we had to wait for about 20 minutes until our number was called. We laid her down on the table and the nurse prepped her tiny hand with the tiny tourniquet. It was all I could do not to faint. Then the needle went in and she let out a huge wail. It went relatively fast though because the nurse was so good. I picked her up and nursed her right away and I think she barely remembered what had just happened. It scarred me and Brandon more than anything. So we will know the results when we go back in three months. They will most likely be positive.
I would be so grateful if you could please share/visit this site in your free time to better understand arrhythmia disorders and possibly make a donation to The Canadian Sads Foundation.
We were then sent down to get her blood drawn to be sent out to the States for genetic testing to see if she carries the LQTS gene. This was not fun at all and I don't wish it on my worst enemy. All you could hear were the screams and cries of little kids having their blood drawn. A mother's worst nightmare. It was a number system so we had to wait for about 20 minutes until our number was called. We laid her down on the table and the nurse prepped her tiny hand with the tiny tourniquet. It was all I could do not to faint. Then the needle went in and she let out a huge wail. It went relatively fast though because the nurse was so good. I picked her up and nursed her right away and I think she barely remembered what had just happened. It scarred me and Brandon more than anything. So we will know the results when we go back in three months. They will most likely be positive.
I would be so grateful if you could please share/visit this site in your free time to better understand arrhythmia disorders and possibly make a donation to The Canadian Sads Foundation.
http://www.sads.ca/
Interest in and awareness of inherited cardiac rhythm disorders among medical professionals and in the community is at an all time high. A number of high profile events and the surrounding media coverage have brought much needed attention to the SADS story. That said, there is still an enormous amount of work required to safeguard the lives of the 28,000 young Canadians potentially living with an undiagnosed inherited cardiac rhythm disorder and to prevent many of the 700 to 1,200 deaths of children and young people each year.
Interest in and awareness of inherited cardiac rhythm disorders among medical professionals and in the community is at an all time high. A number of high profile events and the surrounding media coverage have brought much needed attention to the SADS story. That said, there is still an enormous amount of work required to safeguard the lives of the 28,000 young Canadians potentially living with an undiagnosed inherited cardiac rhythm disorder and to prevent many of the 700 to 1,200 deaths of children and young people each year.
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