Hi, my name is Mindy and I have a 4 month old who has been diagnosed with situs inversus totalis and possibly Kartagener's. After a sample from his nose was taken we were told that the cilia were not moving. Now they want to proceed with a bronchioscope and take a sample of those cilia. I also have a 4 year old son that does not have situs inversus, but the cilia in his nose aren't working either, however in his case they stated it could be due to inflamation.
I am not sure whether the 4 year old needs the scope or not. I would hate to put him through it if he didn't need it. He has never had any type of lung infection, he does have tubes in his ears, but nothing that raised flags with his pediatritian.
I would like to know what some of your childhood experiances with this syndrome were so that I can go to my doctors a little better informed. I feel a little overwhelmed right now with this news.

Mindy

I have a son with situs inversus totalis & Kartageners. He is now 7. With maintenace he is doing pretty good. He has a brother that is 4 that had no visible sysmptoms until now. He is going in to get his tonsils removed and will have the scope done at that time. I would say it is worth doing the scope while they are young, it is worse for the parent than it is for the patient.