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My son was diagnosed when he was 13. Lung, ear and nose involvement. Although he did lose a lot of hearing and has had to undergo two surgies on his ear, he has been in remission and drug free at...

My 16 year old (diagnosed at 13) has been on Cytoxan, Methotrexate and imuran for the last three years. His ANCA remained positive except when on the Cytoxan. His doctor (as we all know) said that...

My son's doctor just ordered a Von Willigan factor test. His ANCA was positive but has been except when he was on Cytoxan. he said this is a test to see how the vessels are performing. He still...

My son, A.J. was diagnosed in September, 2009 at age 13. He is now 15 and was doing very well until recently. A very large chlosteotoma was discovered in his right ear that extended through the...

Has anyone had this surgery? Its a ear surgery neccessitated because there is a hole in the eardrum. Skin grows through the hole and can damage the ear bones and facial nerves. My son's ENT said...

My son's x-ray was clear also, however the CT scan showed nodules in his lungs which resulted in scarring. IT would never had been detected if I hadn't insisted on a CT scan because he had a cough...

one of A.J.'s first symptoms was purpura on his ears, face and chest. Once he started treatment they went away. He is now on Imuran. Blood tests look awesome! He feels good, although I've noticed...

Daggar, you should have Holly's doctor recommend her for a "Make a Wish". i think there is a similar organization in Canada. To qualify you have to have a "life threatening disease". A.J.'s doctor...

so i just got A.J.'s blood test results. He has been on Imuran for 3 weeks. His creatinine random urine is high at 424, but his protein/creatinine ratio is normal. His sed rate is up to a 6 from a...

Thats great news! A.J. still occassionally gets very small nose bleeds. (only one or two in the last 6 months. He still wakes up with a stuffy nose and its clears up in an hour or so. The ENT...

my son also has contant ringing in his ears, but I think its the vertigo that really bothers him.

AJ seems to be doing well on the Imuran. Not one complaint of nausea. Blood test for liver function will be done next week. Hopefully, this will bring ANCA to negative. I know that the doctors...

A.J. was just switched to imuran. Its been a week now. He has not complained of nausea since the switch. His blood work was good this time, first time in almost a year there was no blood or...

yup, we are right here in Dixie land, out skirts of New Orleans. It's a bit curious that the middle of the US seems a bit vacant and the wegs are all on the borders.

It appears that A.J. is the only one way down south.

Daggar, how did Holly do with the Imuran. A.J.'s doctor switched him today because of all the stomach issues he was having with the Methotrexate I have read some bad recent research on Imuran saying...

My son, age 13 at diagnosis was only on predisone for a year. He was on cytoxan for 4 months than changed to methotrexate. HIs doctor says that the goal is at 2 years to be drug free. On a side...

Does anyone on the weekly dose of methotrexate every change the day by one or two. My son is always begging to wait a day if he has something going on socially because it makes him so ill (the...

My son was also diagnosed at 13, age 14 now. Who does your son treat with?

So very funny that yall are talking about mold today. A.J. has been evacuated from our home for a couple weeks because a pipe leaked (and had been leaking) into the wall for sometime. When they...

Everyone seems to think its great news that Rixutan is approved for Wegeners. The side effects seem worse than Methotrexate, Comments?

Watching your son suffer and praying to God that he will have a normal life.

so very glad that Holly is doing better. A.J. has been granted a "Make a Wish". I always thought that the organization was for children that had fatal illnesses, however it is actually for children...

My thoughts exactly as far as changing places. I think as kids they hide so much pain and I wish that just for one day I could take all of that away. I don't think we can even imagine what they...

So very sorry to hear about your daughter. My son, A.J. was diagnosed in September of 2009 at age 13. His journey began with an ear ache in Feb. of 2009. His pediatrician said he had fluid behind...