Help me please !

[drz]

They have him undiagnosed , right now all behind his ear started in a rash , I'm so worried but they say his age is ruling out wegeners , but its the only thing I can find the remotely comes close to what is going on , they did a chest scan and it always comes back he has a chest infection of some sort , his ct on his head came back find so they say don't worry about it , my peds doctor said if he was 14 or older she would diagnose it with wegeners but his age there's no way :/ my poor boy is always bleeding from his sinus areas (ears,nose) and the marks are like broken blood vessels bleeding out into the top layer of skin , also blood in his urine that you can see, but they said kidney infection ...

If they can't diagnose it and treat it will they help you by referring you to another treatment facility that might have the skills and expertise to diagnose him correctly and start appropriate treatment. If it were my child we would go to the Mayo Clinic since they are known as world class medical facility that specializes in cases hard to diagnose or treat. The next best option to a world class medical facility is finding the largest medical facility affiliated with the best med school that you can reach. University med facilities seem to like a challenge and will be most interested in any unusual medical problem. I also think they will be highly motivated to obtain some relief for the child and family too.

Wegs can imitate a lot of different medical problems which is part of the reason it is often hard to diagnose, but if they think it is like GPA, are they willing to start treating it like GPA. I understand the need to be very careful about any treatment for a child that young so i would want some expert pediatrician involved in any treatment.