On 12/1/14 we took our daughter, Allyson (14 yo) to her Pediatrician with an ear ache. She was diagnosed with an ear infection... which just wouldn't go away. We went back to the Dr. at the end of December and she referred us to a local ENT here in Stafford, VA. The ENT tried different meds and put a tube in Allyson's ear in hopes that it would remedy the "ear infection". After 4 weeks of seeing the ENT and Ally's hearing starting to go in her right ear, we were referred to an infectious disease Dr. at the Children's Hospital in Richmond, VA.

The ID Dr. (Beth Marshall) saw Allyson, ran a bunch of blood tests and swabbed her ear (which consistently came back with no bacteria). She put Allyson on Doxycycline and referred us to a Pediatric ENT at Children's Hospital. A CT scan showed that Ally had fluid in her mastoid behind the ear. Dr. Kelly Dodson, ENT saw Allyson and replaced her tube, drained the fluid behind it that was stuck in her mastoid. By April 30, 2015, her hearing came back, she was cured.... so we thought.

On the 4th of July, 2015 Allyson started complaining that her legs were hurting. Seemed muscular, not so much the joints. We took her to her Pediatrician on the 6th of July and she said it was probably growing pains, but she ran several blood tests. We received a call within 2 days that Ally's Rheumatoid # was up and that we should see a Rheumatologist. We were lucky enough to get an appt. with the Pediatric Rheumatologist in Richmond that was associated with Children's Hospital a few days later. Dr. Gewanter agreed with the diagnosis of growing pains and gave Ally some anti-inflammatory meds that would help. We left for the beach the following day, 12 July.

Once at the beach, Allyson made it clear that all she wanted to do is sleep. She had friends along, but couldn't be bothered with playing. She was barely able to make it up and down the stairs in the beach house and the sand on the beach was a chore to move through. Her appetite became minimal. I was convinced she had Mono. On the third day, she woke up with a strange rash (now called nodules) on her elbow and canker sores in her mouth. I was very bothered by her elbow, I have three kids and I have never seen anything quite like it (picture below). I called the Rheumatologist and he said that it was most likely viral and unrelated. With Ally not feeling well, we came home from the beach a day early, it was clear to us that she just wanted to sleep and had completely stopped eating and drinking. On Sunday, July 19th we took her to the local ER. The Dr. there told us that Ally was anemic and dehydrated. Her hemoglobin had been a 12 on the 10th of July and was now an 8. He suggested we go home and find a hematologist as soon as we could to get her anemia under control.

We searched for a hematologist the next day and none could see us for a while and the rest wouldn't see children. We phoned down to our resources at Children's Hospital to see if they could help. The Rheumatologist went back over Ally's blood tests that had been coming in throughout the week and called us to tell us she had a high ANCA level and she would need to come to the ER at Children's Hospital Richmond.

After being admitted on 20 July for low anemia (hemoglobin was now at 7), The Attending Nephrologist (kidney Dr) told us that Allyson would need a blood transfusion. They took about 60 vials of blood from her prior to the transfusion to ensure they were only testing "her" blood. The following day they mentioned the "W" word. My husband and I had never heard of Wegener's and had no idea what we were talking about. They told us they would like to do a bone marrow biopsy and a kidney biopsy the following day. Ally's kidneys were not functioning properly and the numbers continually were getting worse.

On 22 July, they did the biopsies, on 23 July they confirmed that our girl had Wegener's. They told us that they have diagnosed four children between the ages of 13-15 in the Richmond surrounding area since September of 2014. They said that there were 2 boys, 2 girls, different races, some country living, some city living, no real common denominator as to why 4 in the same area in the last year.

Ally's induction treatment included three bags of steroids and one of cytoxin (cyclophosphamide). She was able to stand and walk the next day after her first dose of the steroids. We were discharged from Children's Hospital last Sunday after 6 nights.

She is now home and on 60 mg of Prednisone and iron pills each day. She will return to Children's Infusion Center monthly for her Cytoxin until no longer needed. Her kidneys were left damaged and are operating at about 60% function level, the great Nephrologists that she sees (Dr. Bunchman, Dr. Lo and Dr. Xiao) say that she will hopefully gain some of that back.

Sorry for the novel above... this is all new to us and we are trying to take in as much as we can and learn about this new speed bump in the road of life. Things are still so new... and we are unsure of what to expect next.

Our sick girl.jpgElbow Nodules.jpg