heart surgery, now scar tissue

[kkunzie]

My 23 month old had AV canal repair at 4 months. Now an echo is showing scar tissue that needs to be removed at some point. Is there anything you've heard of that can slow the progression or reverse the growth of this tissue? My doctors say no, but what do you think? As of now she shows no symptoms, so we just have to go back in 6months for another echo. In your experience have you seen kids with downsyndrome tolerate a non-sedated echo?  
Also, have you ever heard of a child with downsyndrome and sleep apnea have apnea go away with age to stop pulmonary hypertension?
If theres a better forum to post this let me know. Thanks!
KK

[Fionajnz]

Sorry you are having to deal with your daughters health issues with her heart.  I have no real suggestions on her heart problems but would recommend that you seek a second opinion at a large pediatric center if you feel it would help you understand her condition and get more information.

I do however have a suggestion with her sleep apnea, if you have not already seen an ENT then that would be a good step to take, they can evaluate if something simple like enlarged or generous tonsils and therefore adenoid tissue may be contributing.  A sleep study would also be helpful, in order to monitor how much sleep apnea she is having and understanding it a bit more.   I presume you are probably using a sleep monitor too?  I imagine that a downs syndrome support group may also be a good resource for you, also her therapists will probably have some good information too.

Best wishes and I hope you get some further direction and progress soon.

Fiona

[Cleveland Clinic]

I am not a pediatric cardiologist. The only people I see with congenital heart disease are adults, most of whom have been corrected. Sorry I can't be of more help.