Hypospadius Question

Well I have not had the un-pleasure of dealing with Hypospadius. I have had the very UN un-pleasure of having my 2nd daughter born with Torticollis and craniosynostosis where she had surgery at 6 months, and PT for a year and half. After seeing the plastic surgeon, and the PT therapist for her 18 month check up, the therapist wrote and checked her out as done with therapy, and the surgeon said see you at her 2 year check up. Ok so thought we were good. Scheduled the 2 year check up with the Neuro surgeon and when we get there he is yelling at us. Why had we quite coming, why had we stopped PT, why had we not gotten more help. WHHHAAAT? I was really upset and shaking. I was really angry with the Neuro. He explained that since we quit the PT she had regressed and gotten worse with her tilt (not that I saw) but he felt she needs more surgery and possibly more plastic surgery to correct the asymetry. I told him what happened and now we are embroiled and stuck in the middle of a possible action against the PT therapist and the Plastic surgeon. WOW. Its been a nightmare, whats worse is we got dropped through the cracks and my daughter may have to go through more surgery.
Point? DONT let anyone make you feel your too paranoid. Medical professionals have so much on their plates, and the attitude to go with it. They feel the parent is suppose to know everything, and in fact we are not in on the loop for most of these things that are just common place for medical staff. Things like these need to be addressed and your fears alleviated. Get the doctor to explain exactly what you need to hear. Since your Ped moved, get it from the new doc what he knows about it, and if he is not totally forth coming or knowledgeable. Get another one.

I haven't had to deal with any of the issues you or Marty has dealt with, but if I did ever have to deal with it I would stay on top of it with the doctors. If one doctor said he needs to still be seen then I would go with that recommendation. I would always go with the recommendation of the doctor that seemed the most cautious. I see you are from Charleston, IL. We are in Decatur. Have you tried docs at the St. Louis Children's Hospital, or Riley Children's Hospital in Indianapolis? I am sure there is at least 1 Children's hospital in Chicago too. You may be able to hop on an Amtrak to go up to Chicago easily. I realize none of these options are really close to you, but it might be worth checking into them. Research your doctors online too. I always do that as well. I wish you luck!

Our son had the same surgery. He had been seen around potty training. Is your son potty trained? I think it's totally reasonable for you to want him to be seen.

I have not dealt with anything like this so coming from someone who questions everything...I would also call the current doctor who is moving and let them know what you are hearing from the other doctors office. See if he has any suggestions to give you.

I would feel that they would want to keep seeing him just to keep on top of things. I think I would totally want him to be seen until it's absolutely determined that no other issues have arisen.

Our son has always (even in utero) had a gigantic head circumference. When we lived in Colorado all the doctors were aware of this. (in utero he had a cyst that had formed on his brain and eventually went away without medical attention, we monitored it throughout my pregnancy). When we moved to Missouri our new doctor was very concerned that such a small boy (height/weight was 15%) was in the 99th percentile for his head. She wanted to run all sorts of test on him. We explained that this is the way it's been and we don't see any other issues that she described. So we again monitored him for 2 years. She finally came to the conclusion that he just had a big head. My hubs, I and the doctor during this process worked together to make a plan.

I know you said there are not many ped urologist but if they are not going to do what you feel is right...you might keep searching.

My son had the surgery when he was 8 months old, he is now 10. We have never had a follow up appt. They told use unless there was a problem all should be well until a check up at puberty. So far, so good!