15 year old daughter diagnosed 10 months ago

About 12 months ago my 15 year old daughter began having headaches and minor cold symptoms that didn't go away. She was treated with several antibiotics for sinus infection and then a 6 day course of prednisone. That doctor also got lab work for things I didn’t know about including ANCA. The day after the prednisone stopped she started feeling worse, not in the sinuses but nausea and just not wanting to eat or do anything. It was a few days before Christmas and I just didn’t know enough to try to push past nurses(“lot of flu going around”) and get to the doctors. Two days after Christmas she had some pain in her lower inside rib area. Saw our pediatrician who ordered a chest x-ray and made an appt for her the next day at a Children’s hospital in a near by town. That evening he called to tell me that her ANCA(finally in after 2 weeks) was high and the chest xray showed signs of a vasculitis. The next day we saw a pediatric rheumatologist who diagnosed her and admitted her to the children’s hospital and then realized that her kidney function was low (had been fine 2 weeks before).

Things kicked into high gear after the kidney biopsy showed that 90% of the filtering units were blocked. They threw “everything and the kitchen sink at her” and her kidney lab work got worse each day for 7 days(acute kidney failure). She had 7 pheresis treatments, methelpred then 60 mg prednisone, and did 2 days of dialysis. Then her lab work started improving. At day 13 they gave cytoxan and rituximab the next day and sent her home at day 17. She had Cytoxan once a month for 3 months after that. Now she is almost off of prednisone and still has rituximab (2 times 2 weeks apart) every 6 months. Her B cells are staying at zero and there is no sign of active disease. Her hemoglobin is up in the 12 range after a low of 6.6. All other labs are now normal except for protein in her urine; a lingering effect of the kidney failure. She is on an ACE inhibitor for that. They did NOT expect her kidneys to regain anywhere near as much function as they have. We are grateful and give glory to Jesus Christ for sustaining us and healing her.

I avoided forums at first because there was nothing I could do and hearing about other bad stories was not what I needed. Now though, I am seeking support to know what to expect, to hear the experience of others about how to know when the disease is becoming active even when labs are normal.

Understandably, my daughter is working through fears when she has a cold or any little thing that seems amiss. She is currently 1 month after the last lab and they don’t plan to draw any more until late December. They will see her for infusions in January.

I would love to hear that some people don't have the disease reactivate for a long time, but people with that experience probably aren't on the forums. I hope they are out there somewhere, though.

Thanks for reading

Welcome to the bestest Wegener's Forum on the planet. I'm sorry for all that your daughter has been through, but glad to hear that she is doing better. Being young is actually a big plus.
I was rather young when I was diagnosed. I went through many doctors and procedures too before getting diagnosis. I was 20 years old. I was diagnosed 39 years ago.

There have been some significant advances in treatment since I started this journey. I also credit the internet for saving my life several times by giving me access to information and people that it would have been impossible for me to find.

I was hospitalized initially for two weeks and was in horrible shape. I too had kidney involvement. After almost two years of cytoxan I had to quit taking it because of blood in my urine . The good news is I had achieved remission. Recovery was slow as I had lost a tremendous amount of weight. I could not walk- not even to go the bathroom. After about a year of recovery (with the help of my Mater) I was able to go back to work and for the next twenty years I took no medications and lived a normal life.

I had a relapse at that point but thankfully there are now newer treatments - like the Rituxan.

Knowing when the disease is active even when labs are normal is a tricky thing. I have been through it many, many times and it is still a challenge. The illness is hard to predict. Just when you think you know what to expect it throws a curve ball. Thankfully you have a place like this forum to talk to people . It really helps to get other peoples ideas and experience.

Thanks for sharing your story. You write very well.

Kirk

Welcome to the forum Mater. Such a scary journey for your daughter and you. Thanks God for his miracles.
We know couple of friends with kids who suffer from wg. Please watch this amazing video.
https://m.youtube.com/watch?v=6jjrZj9a-Ns
If you want me to connect you with one of the mothers in the movie, and others, please send me a msg with your facebook name. Sending prayers ♡♡♡

Welcome
Scary stuff.
Sorry to hear what you went thru but glad that she is recovering.
My son was diagnosed at 20.
Rtx seems to be working.
He needed second does after one year as some of his markers were up.
We had a scary week as he developed rashes over enter body for several days. Seems that was viral and the weggies didn't let usual meds push it away.
He seems to be doing well now.
Scheduled for the second half of second dose of rtx this Friday.
Saw head rheumy today and she likes what she sees.
Keep us posted please.
This group is great.

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Hi, I'm the mom of a daughter with pediatric-onset Wegener's and would love to chat, if you would like. Alysia and Annecat know me on FB.

Thank you for the responses, everyone. I only received a notification for this last message, so I hadn't checked the forum until today. It was good and hard to watch that video. It is a year ago since my daughter started having symptoms and for some reason that is making me relive some of it in my mind (though it isn't like I haven't before to some degree). I wish I had known to push hard to get past nurses to talk to doctors the week before she went into the hospital. But from the stories here, it does sound like my daughter was diagnosed quickly compared to others. Our rheumatologist kept praising our pediatrician for even thinking this disease was a possibility and thus referring her. I sent you a private message, "whatthewhat"