Our Daughter's Story

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.

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Wow that's a lousy story! I am so sorry you & your daughter
have to go through this. Sounds like she is on the right track now.
(I didn't know there were still doctors around who believe there is
such a thing as growing pains.) I will keep your family in my
thoughts and prayers.

Try to learn as much as you can. I recommend the Vasculitis
Foundation. They have a lot of up to date info.
Vasculitis Foundation
When I was diagnosed I joined the foundation, &
was shocked that they actually called me. They said what can we do to
help—I never expected such help. I don't know if they are still
able to give such attention but they are still a good group.






From what you say, Allyson is on her way to recovery &
hopefully the worst is over. This is a great group, ask any questions
you like & we will try to help you.

Hey there! I "liked" your post in that I'm glad she finally got diagnosed and that I'm glad you found this forum. There is a wealth of knowledge and support here. Our daughter is now 17, and was diagnosed at 14. If I can be of specific support I would love to be. I will private message you my contact info.

Oh, (this font looks huge, sorry if it is), I went back and checked and it's a boy with WG who was recently diagnosed who is seeing Dr Gewanter whose mom I just "met." In my pm to you I thought it might be you. Small world.

Gee WTW, it seems like it was only yesterday that your daughter was diagnosed. Gosh time flies.

Welcome to the forum Manchester5 and Allyson. You have definitely come to the right place, even though I am so sorry that you had to find this forum.
There are many knowledgeable people on here that can answer your pressing question and remember that no question is too small. Also there are many members on here that have children diagnosed, so they will be familiar with what you are all going through at the moment.

I hope to hear of great improvement with Allyson within the next few months - oh yeah, don't believe everything you read on google :crying:

Welcome to the forum.... I just joined a day or two ago there are lots of kind people and knowledgable posts here.. I'm sorry to hear about your daughter.... It is definitely no fun

Nice intro post of a sad and sorry story. Hope things go well for your family and sorry you needed to search us out but glad you found us.

That photo looks just like what happens on our daughter's elbows, by the way.

Thanks for sharing your story about Allyson. My WG also started with a severe, antibiotic resistant ear infection. It finally cleared up after a very strong antibiotic, but they were unable to get a culture to grow, so I wonder if there was even an infection at all. I was also taking prednisone at the time. In any case, fast forward to 2.5 years later, when my lungs got bad and I finally got a WG diagnosis. In between, a whole string of "sinus infections" treated by antibiotics and prednisone, and allergy shots. Unlike Allyson, I only had to spend one night in the hospital for pre-dx testing. Aside from the ear infection, Allyson's case is quite a bit different from mine. I have no kidney involvement so far. I did have a few joint pains from time to time, bad enough to inhibit my getting around, and of course there was the fatigue you describe, which in my case came and went in severity until it became more pervasive later on. Every case is a little, or a lot, different.

From reading your chronology, it is another case of docs coming to a whole string of OTHER conclusions about what is going on, before the possibility of WG or similar diseases even crosses their minds. This is quite common among the experiences of forum members. I suppose Allyson's age could be a factor there, as they would talk about 'growing pains' and maybe think it unlikely for someone that young to get WG. But we hear of more and more cases of teenagers and even younger. The medical community needs to put its thinking cap on and stop treating this as such a rare disease that they need not consider it. My heart goes out to you and Allyson, and I send best wishes that she get a lot better with treatment, and soon!

Welcome to the forum. Your daughter's story sounds a lot like mine, except mine started with the leg pains and I knew it could not be growing pains at the age of 65. My doctors had not clue what it could be. Until I had the second ear infection (what they thought was infection but was not) and after a rash all over my limbs and trunk I went undiagnosed. I too just wanted to sleep. After two years my rheumatologist finally figured it out. My treatment was rituxan. Hope your daughter gets some relief quickly. The young seem to bounce back much better than we golden oldies.

When my daughter was diagnosed at age 24, I was told this is mostly a "middle age" disease. It was clear to me after doing considerable research that she had WG long before she was diagnosed- she was just always misdiagnosed. I am now hearing more and more instances as with your daughter, Allyson, of an earlier diagnosis. While no one obviously wants this diagnosis, it is good that perhaps the medical community is becoming more educated and knowledgeable about WG, its varied symptoms and the early onset (for many).
As a parent , I know how frightening this can be. It is also a helpless feeling as we cannot protect our children or put a band-aid on and make everything better. This forum has helped me so much- just reading the posts and the advice.
Stay positive. The best to you and Allyson.