Hi I am new to this site, but not new to the pm. My son Cody had transposition of the great arteries and a vsd and asd @ birth. He had surgery to correct this @ 4 days old. Cody was 6wks premature because he is a twin. Cody ended up with a pm @ 17 days old. Cody is and always has been the more active twin which is funny considering his twin is perfectly healthy. I find it very hard to keep Cody from being an active boy. Cody is now 5 and is on his 2nd pacemaker. When Cody was 2 1/2 he broke a lead. Cody did not show any signs or symptoms and this was only noticed @ a routine pm ck 2 wks after they think he broke it. Cody was running in circles @ the hospital prior to surgery with a hr of 40. Cody has 2 brothers and loves to be a wild and crazy boy. His big bro who is 7 plays hockey and Cody is insistent that he is going to play hockey next yr. Cody pretty much breaks all the rules the drs have given him not to do. He is always spinning on his belly on swings, wrestling with his brothers, sliding on his belly, and anything else you could think that would be bad for a pm. I dont want him to feel like he is different and I don't want to "put him in a bubble" but I do want him to be safe. In feel if Cody plays mite hockey he will be safe. He will have padding and there will be no checking. So people out there what is your opinion and what did you or your kids do for sports. Please give some advice or opinions.

 

 

I'm just thinking out loud, but having raised 2 kids I don't know any way to slow them down other than drugs or ropes! My feeling is that the long term affect on development would be worse than the risk of being active.

It's even possible that he will eventually out grow the need for a pacer, or if not then new developments will provide a less vulnerable one.

The other thing to think about is that a child that is greatly restricted will often have a tendency to make up for it later in life. I have this image of Cody leaving home at 17 or so and taking up sky diving.!

frank

 

I wish I had some advice for you concerning Cody's activity. Boy, as a Mom I would worry to no end, but we know we can't hold them back right?
What has your Dr. said on the subject?
If it's OK with his Dr., I guess just pad him good & let him go!
Good luck to you both.
Liz

 

Hi, I agree with LS. I would be worried too but I would ask your doctors and go with their advice. It would be ashame to hold the little guy back from having fun. All the best and keep us posted!
Howard

 

Hi there!
My name is Sharon Spinnler and my daughter Zoie has had a PM since she was three, now 11. When she became very active in sports, I had the same concerns as you do. I went to her doctors asking for advice/recommendations of a protective gear. Nothing was to my satisfaction on so many levels. To make a long story short, I developed a product called PaceGuard. Please check out my website www.paceguard.com. Just the other day, a mom from this site whose son has a abdominal pm called to let me know her son received a line drive baseball right at his pm and how thankful she was for PaceGuard. If you have any questions, please feel free to contact me at spinnler@paceguard.com.
Play for Life!
Sharon

 

Hi there!
My name is Sharon Spinnler and my daughter Zoie has had a PM since she was three, now 11. When she became very active in sports, I had the same concerns as you do. I went to her doctors asking for advice/recommendations of a protective gear. Nothing was to my satisfaction on so many levels. To make a long story short, I developed a product called PaceGuard. Please check out my website www.paceguard.com. Just the other day, a mom from this site whose son has a abdominal pm called to let me know her son received a line drive baseball right at his pm and how thankful she was for PaceGuard. If you have any questions, please feel free to contact me at spinnler@paceguard.com.
Play for Life!
Sharon

 

Hi I am new to this site. My name is Paula.
My daughter has the pm.
She was born with ASD, DORV & TGA. Now she is 2y & 8m.