many time viewer - first time poster

[Daggar]

Hello Everyone,

I have been reading a lot of your posts over the past few months since my 14-year-old daughter Holly was diagnosed with WG (nov 2010). I just want to thank you all for helping me ask the "right" questions and make the "right" decisions with her treatment from those early days. There is a wealth of valuable information here and I've used it numerous times.

We are thankful, and lucky, that Holly has received extremely good care from her medical team at the Alberta Children's Hospital since the time of diagnosis to present. Our medical system in Canada is overburdened, to put it mildly, and our medical professionals have their hands full in dealing with the "crunch" so it makes us all the more grateful for their care.

To lessen their burden I'm being proactive in gathering as much information as possible through websites, and folks like you, so that I become more of an asset with her illness. I'm hoping to gain more knowledge from you and maybe even share a piece of information from our experience that may be helpful in return.


Weggie Dad

[Thakator]

Welcome, Weggie Dad - - and kudos to you for taking an active role in your daughter's new journey. Our hearts go out to you as do our hopes for only the best regarding her treatment and road to remission. Ron

[pberggren1]

Welcome to the Forum Daggar. I too am from Canada, Swift Current, SK, about 5 hours down the road. I hope Holly is doing well. I know it is very hard for a parent to see your child get ill like that and to not know what to do. It sounds like she has good docs.

[elephant]

Welcome and ditto to what Thakator said. Love to hear your daughters story!

[Daggar]

Wow, I didn't expect such a quick response!

HOLLY'S STORY -- I believe Holly's story began at Christmas in 2009 when she had a cold and her sinuses took a while to clear up. Our FP gave her some antibiotic nasal drops which seemed to do the trick and nothing further came of it. Along came spring/summer and Holly started to develop swelling in one of her ankles which we wrongfully assumed was due to wearing the flat-soled boots that were popular amongst many of the girls at that time. She also had a tendency of not tying her sneakers up throughout the years and walking on the heel area which caused the foot to collapse in. Our FP checked her over and agreed that this was probably the cause and signed her up for some physiotherapy to try and strengthen the tendons/ligaments. She went through a month of that and it seemed to be doing okay until the Fall when the pain in her joints worsened and she started to experience unusual fatigue. Our FP was at a loss and we weren't getting the answers needed so we took her to emergency at the local Children's Hospital where she was admitted and the real story began. Her kidneys were failing and the the Nephrologist ordered a kidney biopsy to confirm his findings from the blood/urine tests. Everything moved at warp speed from there with the request to give her the chemo/steroid treatments asap to lessen further damage to her kidneys. We were shell shocked at that time but thankfully they stressed the importance of catching it asap! The sad part of the story is that Holly had a slower progression of the disease and a high tolerance for pain/discomfort which in the end caused more damage. We're just not sure how much at this point but remain hopeful.

COMMENTS -- There are moments in your life that you never forget and remember every little detail -- like the birth of both my daughters -- and I'll never forget when one of the nurses who had grown fond of Holly in the couple of days that she tended to her began to tear up when I asked her if there was any news on the diagnosis. I really thought the worst and when they had me call the wife and 2nd daughter back into the hospital to meet with a "team" of doctors my bp went through the roof! What a roller-coaster ride!!! At first you realize that what they're telling you is that she doesn't have a "terminal" illness and you feel elated. Then as they begin to explain the treatments you soon realize that this is still "very serious" and the real fun begins once you start to deal with the mix bag of complications due to WG itself, the damages from WG and the bonus ones due to the actual treatments.

MOST IMPORTANT THING THOUGH!! She's doing okay and she is getting excellent care!

Thanks for the warm welcome!

[Sangye]

Hi Daggar, welcome to the group. I'm so sorry your daughter has Wegs. It's hard enough to deal with it as an adult, but 14..... I'm glad you found our group, though. We have several members who got Wegs at a young age. They have much to share that will help you and your daughter. Meanwhile, feel free to ask questions or let us know how we can help you.

[Daggar]

Thank you Sangye and yes 14 is damn young to have to deal with something this serious! Funny enough Holly has been the strongest of all of us and we find her trying to reassure us that everything will be okay. The nurses and doctors were shocked by her personality and demands to give it to her straight from the beginning. She may be 14 but she has an "old soul".

From what I've viewed on this website you, Jack and a few others seem to be the "Weggie Gurus" so I'm sure I'll have questions to ask in the coming days, weeks and months.

A couple for now -- has anyone experienced issues with their liver from WG or is it usually the treatments that elevate liver enzymes? And -- just curious as to how many WG patients need to be placed on an ACE inhibitor to control blood pressure while taking high dosages of prednisone? Holly has experienced a spike in her blood pressure of late but she's not at that point yet.

[drz]

Happy to hear treatment is going well and that they caught it early enough to avoid even more serious complications. I can't imagine what it is like to watch your child deal with Wegener's at its worst. I believe it was much harder for my family to watch me than it was for me to deal with this horrible disease. The Vasculitis foundation is worth investigating. Canada is having a big vasculitis meeting this spring too.

[DEE]

Welcome to the forum Dagger im also sorry your daughter has WG but hang in here, the people who post here are the best whether your having a good ot bad day
Ask as many questions as you need there is always someone that can find you an answer

[ArlaMo]

Sorry about your daughter! I have a 16 year old daughter and I can't imagine!
As for the hbp and pred, my nephrologist just put me on Lisinopril in January. I have had relatively low blood pressure all my life, but after 9-10 months on prednisone, it spiked. He also said it would help protect my kidneys (I have kidney involvement as well.)