ASD and enlarging chambers

[cheyanne12]

Today I took my 20 month old son to see the ped. cardiologist who informed us that our sons PDA was closing but he still has atrial septal defect but the RA and the RV were enlarging due to increase blood flow. (shouldn't we be concerned about that?)He didn't seem too concerned about it and told us that it's still possible for the asd to close up but they would wait till he was about 4 years old to do the catherization. He told us to come back in 6 months. At first I was glad that the PDA was closing up, but then I began worrying about those other chambers enlarging... wouldn't this mean additional stress on the heart... isn't that a bad thing? I guess I'm feeling a bit sad today because I had high hopes that the news would have been that everything closed up and all was well. It's horrible when you want to think positive and you come out of the office with that unsure feeling of what the future will bring. To make matters worst, I work part time in a day care center and I guess I'm afraid I will bring home sickness to my son. The cardiologist also told us to let him know if my son has any lung problems in the future.
Seems like I've been coming home with colds lately and I sure don't want to pass it on to my son.

[ALLISA]

So sorry to hear the stressful news....have you had a second opinion ? I know some doctors don't want to wait to do a cathrization and will do open heart at a much younger age.....yes it is scary, but my daughter had hers when she was 4 months old and that worry & fear is now behind us.

Were you at a large Children's Hopsital ? I hope that your son is also recieving Cynagist shots (sp?) to protect him from RSV......with his cardiac issue he is ABSOLTULY a [perfect candidate for them......

Let me know if you have any more questions....I'd be happy to help at all.....good luck

Allisa

[marisa]

Allisa, can you give any more info on these shots? Laura has ASD and nobody has ever mentioned these to me. She goes in Nov. for her 18 month well visit and also a check up with the cardiologist.

Thanks

Marisa

[cheyanne12]

Allisa,

Thank you for your response. I do not know what these shots are since nobody has mentioned them to me. Our ped. cardiologist is from Hershey Medical in PA and I thought that this was a pretty reputable place. We recently moved here. Our last ped. cardiologist told us that they may do the procedure between the ages of 2 and 3 but it was a wait and see situation. Our son not only has these conditions but he also has coloboma.... a key hole in the pupil of the right eye which seems to look bigger than it did when he was an infant. I'd like to know more about the shots you mentioned and I'm wondering where you are from. Open heart surgery scares the heck out of me perhaps because I've read posts on other forums from people who have lost their children. I keep praying for a miracle so that no surgery is ever needed and those holes close, but the thought of the two chambers becoming larger does bother me. The cardiologist doesn't seem too concerned though. It's nice to know that your daughter went through surgery successfully. I have SO much to learn about all of this.

Sincere thanks,

Cheyanne

[ALLISA]

Hi Ladies....

This first link goes to a website about RSV....my non-medical description would be that RSV would be a "common cold" in healthy toddlers, but it can turn deadly in children under the age of 2 who have cardiac or pumunary issues. I had never heard of RSV until AFTER Erin was born & it seems like every time I turned around I was hearing something about it.

Erin's doctor is the one who first brought it to my attention....she petioned my insurance to get the cost covered....it is VERY expensive ( 4 years ago it was about $1,000 PER shot ) and you need 1 shot PER MONTH DURING flu season (oct/nov----april).

THe shot itself is called Synagis. The second link goes to a site aobut that and the third goes to a site I JUST found regarding DS & RSV.....might be useful.....I haven't read through it all ......


www.rsvprotection.com/

www.synagis.com/how_synagis/how_synagis.aspx


www.downscity.com/rsv_page.htm


I am so grateful my pedetrician had doen the "legwork" on this for us....Erin actually had already HAD her surgery when RSV season rolled around.....her cardiologist said to me that she was technically NOT high risk anymore, but if the ped could get the insurance to cover it....why not get it ?

It might just be coincedence....but I don't recall Erin being sick AT ALL the first 2 years when she got the Synagis shot....I still get her a flu shot every season.


By the way Cheyann, I am from Massachusetts.

Let me know if I can help anymore !

Allisa