Hello - my 14 year old son was recently diagnosed

[sharon]

sorry JanW, I typed the wrong name, but i'll say hi to you,(i was trying to reply to Theresa) i was having a wg moment and this stupid notebook jumps around so much, i can't turn the mousepad off and it seems to have a mind of its own, i am thinking of introducing it too a hammer! Have great day!

[Doug]

And today is my day to encourage you top read up on the disease so you can ask those important questions. This link has a place with basic questions to ask the docotrs involved in WG treatment. Hope it lightens your load!

Front Page | Vasculitis Foundation

[lafounk2]

Hi, My name is Kelly. My oldest son, Josh, was diagnosed with WG in April 09 at age 14 (turning 15 on May 1). He just had his 16th birthday. This whole ordeal has been a roller coaster ride. First signs of trouble started when I noticed a "bump" behind Josh's right ear in Jan 09. A CT of that spot showed a "swollen lymph node." About 2 weeks later, Josh started with an ear infection which then turned into the nasty sinus infection. Between Jan and April, I brought Josh to two ENT specialist, multiple pediatric specialists, and an ER visit once due to blowing blood out of his nose despite 4 rounds of antibiotics for which DID NOT HELP. We had a vacation planned for Florida April 3 - April 14. One week before vacation, Josh started with a low-grade fever, sleeping all the time, and still nasty crusty bloody nose. Two visits to Drs 1 week before our trip and we were told it was just a "Chronic Sinus Infection." Well, we headed to Florida. Staying at my brother-in-laws in Port St. Lucie, Josh slept the whole week. One night he woke up feeling dizzy. My husband and I brought Josh to a clinic there where a blood test for mono came back negative. Our last 2 days in Florida were to be spent in Orlando taking in Universal Studios. We didn't end up at Universal because Josh started complaining of his left leg hurting. We decided to stay back at our hotel and that's when we noticed that Josh's left leg was swollen. I immediately called our pediatrician who instructed us to go to the ER. That's where we were told that Josh had a blood clot in his left leg and his blood work showed that his creatine was 2.6 (not good!). Josh got air ambulanced from Orlando to Fletcher Allen in Burlington, VT (closest to our home but 1 1/2 hrs away from home) two days later. A two-week stay and lots of test showed that Josh had Wegener's. His ANCA was positive and kidney biopsy proved it too. Since then, Josh had surgery twice on his left leg to clean blood clot. Kidney's were hanging on until Nov 09. Josh has been on dialysis since Nov 09. We're hoping for kidney transplant sometime this summer. It is really hard to have your child go through all of this especially at such a young age. We take things day by day. I'm sitting with Josh right now at dialysis. We cannot wait until transplant time. Please feel free to e-mail me anytime if you wish to chat. My home e-mail is zcat@westelcom.com.
Take care,
Kelly

[Nancy]

Hello Theresa -
Sorry to hear about your son's new found diagnosis. I am fairly new to this website and have found good advice and some regular humor as well... the kind that hits just when you need it. I have had Wegener's now for almost 14 yrs and find that it is the most interesting imposter so far.. Much more than Lupus is rated to be... The reason that everyone is encouraging you to see a Wegener's specialist is many people who try hard to do the best - but do not understand the variety of forms the WEGS can take... I am a Nurse practitioner and after diagnosis , I have seen pulmonologists - who have never treated it and were not interested in finding out how... Rheumatologists that threw lots of prednisone and cytoxan/Methotrexate at it - but then confessed that they did not understand why the lab was showing the positive disease results... You will be your son's best advocate... hit the sites - NIH, Clevland Clinic, Vasculitis Foundation, etc... Some of the most innocent signs and symptoms can give you a head's up before an impending exacerbation of the WEGS... Good Luck and welcome again - have him join in as well - there are probably questions that he wonders how to ask... I know I did and I was in my early 30's...

[Sangye]

Nancy, I'm so glad to have you in this group. Great explanation of why a Wegs doc is necessary.

Kelly, it's good to hear an update on Josh. I sure hope he gets a kidney soon so that he can enjoy his summer off of dialysis. I can't believe it's been a year already since he was dx'ed....

[Natalie]

hi guys , so young I can Begin to imagen how you are dealing with all this , My hats off to yous and hoping for the best .. hang in there xxoo