15 yr old daughter diagnosed recently

[drz]

It isn't that straightforward, Richard. Even if they suspected an AI disorder, the ANCA isn't a likely test to be ordered.

It took over a week of misdiagnosis before they called in a rheumatologist who order it for me. By then my hearing was gone, kidneys were failing and I was coughing up blood but my "broken arm" had healed over night from antibiotics, but my " pneumonia" wasn't getting any better nor was kidney function. They had ruled out a heart attack.

They told me my ANCA readings broke the record at the Mayo Clinic and figured it was probably Wegener's disease but needed a kidney biopsy to confirm it the next day.

I agree they are only going to look for Wegener's after they rule out anything that might be more common to explain the symptoms. That is how it is usually diagnosed, sometimes too late unfortunately. We can promote more info and knowledge of Wegener's disease to raise awareness of it and encourage physicians to consider it when they see similar symptoms and maybe it will help somebody in the future get an earlier diagnosis.

I have also heard of stories where a sharp physician recognized it early and started treatment without even having a confirmation biopsy. Bit I think this is unusual.

[jola57]

I think that ANCA test should be given to all patients routinely when they can't get an answer from regular tests and observations and the patient is not getting better. This is something that should be in a memo from the government to all physicians in a bulletin.

[Ivelisse]

Glad she's doing better
I was also diagnosed with Wegners at 15.


Blessings to you & your family.

[pberggren1]

An ER doc diagnosed me within 20 minutes and ordered an array of tests including ANCA.

[elephant]

Phil you are lucky, I have heard of one case a woman 40 years ago went to ER in North Carolina with a bloody nose, joint pain and was diagnosed immediatly by a resident. She was very, very lucky. But she was on cytoxan for 5 years.

[RCOSSIO]

I was diagnosed that same day I went to the hospital...when they did the Lung CT scan a pulmonary doc who specialize in Wegs came over and said " I believe you have Wegs, but without a biopsy we won't know for sure. Two days later confirmed.

[Jack]

It took 18 months, lots of unnecessary surgery and finally kidney failure before they diagnosed me.
During that time I saw at least four different specialists, but none of them put the whole picture together. The guy who worked it out had just read an article in a medical magazine about it.

[JanW]

And let's not forget that ANCA isn't always positive, even if you have WG. There have even been cases when people have been diagnosed with WG (my ENT has had one), based on inflammatory blood work (but negative ANCA) and horrible sinus/saddle nose issues -- and it turned out to be cocaine abuse (as you might imagine, people don't always tell their docs about that). I actually saw that presented on the VF's website from the last symposium as well (maybe it was even the same case, I don't know).

All of this is simply to say that what seems evident to all of us can be really tricky even for some otherwise decent docs.

[lafounk2]

Hi, my name is Kelly. Welcome to the forum. Lots of very knowledgeable WG people here. I have found this site so useful and helpful dealing with my son's diagnosis. My son, Josh, was diagnosed in April 09 with WG at age 15, now 16. What started out as a lump behind his ear in Jan 09 then ear infection then sinus infection with blood show turned into WG. Between Jan and April 09, I brought Josh to 2 ENT, 1 ER visit, and multiple pediatrician visits because Josh was blowing blood out of his nose and in a lot of discomfort. Each time, I was told that he had a chronic sinus infection. Looking back in those 3 months, he had various joing pains. He'd wake up one morning saying his elbow hurt and the next day it was better, but his knee would hurt. He even said his hand would lock up when trying to hold a pen or pencil and utencils to eat. Josh broke a bone in his hand a few years ago and I wonder from the inflammation of that trauma it that's what started WG. He was pretty healthy then (other than open heart surgery at 10 months old to repair a heart defect). How much could one child take in his lifetime?? Anyhow, Josh also had a blood clot in his left leg. He had surgery twice and a few stents placed. He's currently on coumadin. Josh is doing very wells these days other than being on dialysis. He's ready for transplant now, but no living donors available so he's on the deceased donor list. Josh has lost a remarkable 40+ pounds. He looks and feels great. WG seems to be in remission. I sure wish they could come up with a cure or a cause for WG. However, I do feel perhaps that inflammation from Josh's nasty sinus infection or his broken bone in hand is the cause and trigger to this. I wish you the best with your daughter. Together we will fight this and never give up hope..

[Sangye]

The first day I saw an MD-- a pulmy, bec my chest CT was hideous-- he ordered a battery of tests including ANCA.