Hi Everyone

[jennerik923]

Hi everyone
My nephew, Erik, 11, was diagnosed with WG about 6mths ago. It originally affected his eye and was contained to that for about 6 mths. He was misdiagnosed and mistreated for 18mths prior. It has now progressed to his lungs and he has protein and blood in is urine. He has recently been admitted to ICU and was given 1000mg of steroid with the antibotic. He is at columbia prebs. Any information, advice, or whatever else anyone can offer would be much appreciated. thank you much. All of you are in my prayers and wishes that someone, somehow finds cures and answers for this disease.
Best of luck to you all
Jenn

[NicShaf]

Hi Jenn,
You've come to a good place, you'll find many answers here. I have read on here before that treatment for children is a little different than treatment for adults. However, there are quite a few parents on here that I'm sure could offer more advice for you.

Best wishes to your nephew and your family.

[Sangye]

Hi Jenn, welcome to the group. Gosh, 11 years old, that's awful. I suggest you get him to a Wegs specialist. Dr Seo at Johns Hopkins in Baltimore told me he will treat kids that are "in double digits" age.

[Chris G]

Hi Jenn - Welcome to the group. I'm so sorry about your nephew. My son is also 11, and it just breaks my heart. I haven't had any lung or kidney issues, so I'm afraid I can't be of much help to you. But I send my best wishes your way.

[Brooke]

Welcome to the group, sorry to hear about your nephew.. such a young age Feel free to ask as many questions as you need.

[Daggar]

Hello Jenn,

Sorry to hear about your nephew! It is a stressful time. Our daughter Holly was diagnosed at 14 back in November 2010. She had kidney involvement but no lung issues. The doctors at the Alberta Children's Hospital in Calgary suspected WG very early after being told of her symptoms leading up to admitting in the ER. They did a biopsy of her kidney to confirm. Her kidneys started to fail quickly once admitted so the team of doctors were very aggressive in having her start the treatments immediately (methylprednisolone - cyclophosphamide - plasma exchange). Her kidney function has recovered to about 75% now after 6 months of treatment. The WG specialist is highly recommended if the current doctors do not have experience with the disease. One with "pediatric" experience would be best! I contacted a Dr. Brogan in England to help reassure us that Holly's doctors were making the right treatment decisions. There are quite a few in the US that would be good contacts for the same purpose if you can't get to see them at present.

How did they come up with the diagnosis? Was it a biopsy?

[Daggar]

Sorry, forgot to add that we too got the run-around for nearly 9 months prior to taking Holly to ER. From all the reading I've done since it is a hard diagnosis to make so it's hard to play the blame game and counterproductive in many ways.

[delorisdoe]

Sorry, forgot to add that we too got the run-around for nearly 9 months prior to taking Holly to ER. From all the reading I've done since it is a hard diagnosis to make so it's hard to play the blame game and counterproductive in many ways.

How true. I was reading a post by sangye the other day where she mentioned she had her rash biopsied. When I first got ill with "pneumonia" I had a huge rash on my lower legs that was defenitly wegners related and there was talk of biopsy but one was not done. I thought the other day that had they just done the biopsy then, i would not have had to wait 1.5 years to get diagnosed. then I thought, oh well no point thinking about that anymore.

[maria garcia]

Im sorry for your nephew. My daughter is going through a similar situation but still not diagnosed. She has red eyes but they are saying is not related and bad sinus, which they are blaming on allergies. Im hoping they do a nose biopsy bcse i am so worried! Her blood work did come out positive for P anca and MPO but the Drs have not confirmed Wegs. Im miserable not knowing. It doesn't help I have bad insurance. I wanted to ask what exactly was wrong with his eye?

[jennerik923]

Thank you everyone,
I am very glad I found this site. Wish you were all closer and cld form a person to person support group. A little background on his case- hopefully Maria may help you-he was originally diagnosed with an "infection" and tumor in his left eye, i would have to get the exact names from his parents- for 18mths. that had "cleared" but then mysteriously jumped into his right eye- however- the right eye's "infection" was much more aggressive and bothersome that the drs started to investigate another avenue. FINALLLY- a Dr that heard of Wegs diagnosed it after doing a biopsy. So since January he has been treated as a Wegs patient. The eye started to heal and was very responsive to the steroid tx plan. His eye was extremely swollen and very red- eyelid would close from all the swelling. He did have joint pain and a cough that would come and go- but he is asthmatic so it was hard to distinguish between the two. He also has allergies so with this season that we are having on the east coast- it was very hard to tell whether his sinus problems and cough were due to wegs or allergies. He had one nose bleed about two wks ago and his ped dx it with a severe ear infection and sinus infection put him on antibotics for 10 days after the 10 days cough still persisted with an occasional cough up of blood and sinus infection was still there- put him on meds for another 5 and referred to him to a ent- two days after seeing the ped- we went to the ent- who took a chest xray and found blood in his lungs- so we rushed him to columbia presb- who then took another ctscan and found blood with nodules in his lungs- they opted to not do the brochioplasty (sp?) bc they knew that wegs had progressed to lungs- they started him on 1000mg of steroids to stop the bleeding and antibotics to combat the steroids. Today was his first day of chemo treatment- he took it well. went to see him today- he is bored in the hospital and is worried when he is getting out because he has a district baseball team tryout that he "needs" to attend- so I guess his spirit, you can say, is great.
thank you all again- i, unfortunately, look forward to researching this site and many others and am definitely opened to any advice anyone has to offer.