Hello from PA....

[Ladyleeza77]

Hello, my son was diagnoised with WG a year ago, by an accidental finding of a mass on his lung. We think he got it from his ringworm medication. Hes had UTI symptoms but has had urine tests and only to find his urine is concentrated...i dont believe that, could he be having flare up of inflamation?? Im worried...anyone have any suggestions or experience hes 11 and has been on methtraxate for the last year just about...Any info or help woukd do...thanks...

[annekat]

Hi, Leeza! Me again. It's late everywhere in the US but maybe not in Australia and the other places where we have lots of members worldwide. I'm just about to drift off, but someone will be on here for you sometime tonight, I'll bet! Although you are up really late! It's three hours earlier here. I know there are other people here from PA. Maybe you all can touch base and even meet in person. I hope you have access to some good doctors who know Wegener's. That would be especially important for someone his age, to make sure he can get through this and go on to lead a typical kid's life. I hope others can answer your questions about the concentrated urine. Maybe talk to you in the morning.

[mishb]

Hi Leeza,

It's early evening here in Australia - Anne, go to bed :tongue1:

I'm sorry about your young son having WG. I'm just playing catch up with post again so I haven't seen any others that you have done yet.

I really don't know what the concentration of urine is, but I sure hope it isn't a flare.

Have a lovely night ladies

[Pete]

Hi Leeza,

Sorry to hear about your son.

Just speculating here... Your son's concentrated urine may be a result of not drinking enough water. This may be an issue with some of the medications he may have to take as the metabolates can be hard on the bladder. Staying hydrated and more frequent urination helps with this.

A couple of questions, if I may: Is your son being treated by a Vasculitis specialist? If you live in eastern PA, you are close to University of Pennsylvania where there are some. If you live in western PA, you may be closer to Cleveland Clinic where my rheumy treats me (and some other forum members). How was your son diagnosed? Is he on any other meds besides methotrexate?

Hope he gets into remission soon. With proper care, he can live a near normal life. Good luck!!

[Ladyleeza77]

He is seeing a rhuematologist whom is with allentown and hershy..im in the poconos. He was in a wrestling match , got half way knocked out, coukd not walk and went to ER.. and they took a ct scan to ck on his spinal cord and caught a glimpse of his lung and saw a mass...we went to a lung specialist who took all kinds of tests, then pediatric surgeon wanted to get it out, removed it and they did tests on it.. .About 2 weeks later tgey came up with WG...Hes had no symptoms...but maybe a few months ago ecery now and then he complains his hands hurt in the morning. He has no other meds.

[annekat]

His hands hurting is definitely a possible symptom of WG. There are so many symptoms and each of us seems to get a slightly different combo of them. It's great that, other than that, he's not having symptoms. It sounds like the mass in the lung was the only big thing so far. That bodes well, now that he's being treated, that no other permanent damage has started within the typical areas that Wegs attacks. Is he not on prednisone, as well as methotrexate? And typically, he'd be on the antibiotic Bactrim, as well, to prevent lung infections due to being immunosuppressed by the MTX. There can always be reasons for the docs to vary from the typical. But I would recommend checking out the treatment centers Pete mentions above. It is also possible for your docs to consult with those with more expertise, for free, and here is one place to start: VF Medical Consultants (http://www.vasculitisfoundation.org/mcm_resources/medical-consultants/)

[Ladyleeza77]

He was on predisone in the begining after tge mass for about 6 months tgen went on MTX and started weening off peedisone completely...thanks for the link...i feel like its so rara they dont know much what if they miss something or i dont know something to ask and it may be important...right now im trying to get medixmcal coverage back so i have been racking up bills and now hes due for bloodwork.. i think i can just walk in blood labs and pay or get billed...

[annekat]

Good that he was able to taper off the pred. 11 would be pretty young for being on it and not being able to get off it, as it can do a lot of damage long term. Here is another link: Vasculitis Patient Advocacy Network (http://www.vasculitispan.org/) . It may mention some good docs in your area who are not on the VF site.

[renidrag]

I would think the Rheumatologist would schedule blood work for you. Poconos would be closer to Philly yes? Dr. Peter Merkel is at UPenn I think, but the link Ann gave you would let you know.
Dale

[Ladyleeza77]

I have a script i have to take him...its urine and bun creatine...some other stuff...im going tomorrow..

[Ladyleeza77]

His doctor is a women April Bingham...

[annekat]

I would think the Rheumatologist would schedule blood work for you. Poconos would be closer to Philly yes? Dr. Peter Merkel is at UPenn I think, but the link Ann gave you would let you know.
Dale Dr. Merkel is highly respected as a top WG doc. (Dale: Go Patriots! If they win, I'll be happy for you. If the Seahawks win it again, I'll be happy, too.)

[Ladyleeza77]

Is he pediatrics??

[Ladyleeza77]

I dont care how far i have to drive..

[annekat]

I dont care how far i have to drive.. I don't know if he is pediatrics. I think he's a rheumatologist with a lot of WG experience, though others could correct me about him being a rheumy. Sometimes docs in other branches of medicine can handle Wegs well. There aren't too many kids with WG, I don't think, but he may be able to handle it due to his experience, and could always refer you to someone better able to handle kids' cases, if someone like that exists.

It's very good that you are willing to drive as far as it takes. That is a limiting factor for a lot of people.

[Ladyleeza77]

Ill look into that..thanks

[whatthewhat]

Hey there, sorry I am just seeing this. We have a group of Weggie Moms on Facebook - I'm trying to remember if anyone is in Pennsylvania. I will private message you my FB info, and if you are on there we can hook you up with other East Coast moms. You are not alone. ((Hugs))

[jlove]

Hi Leeza! I'm a patient of Dr. Merkel's and I live in Philadelphia. My guess is 11 is a little young to see Dr. Merkel but that's just because CHOP (Children's Hospital of Philadelphia) is right across the street and it's one of the best childrens' hospitals in the country. I had my first symptoms of GPA when I was 16 so I was seeing doctors at CHOP at that point. Once I turned 18 they told me to go across the street to the Hospital of the University of Penn. At that point, I still hadn't been diagnosed (I wasn't diagnosed until I was 22 because my symptoms and blood work were inconclusive). When I was at CHOP I saw Dr. Ed Behrens, who wasn't a vasculitis specialist but he was an excellent physician. The nice thing about CHOP and Penn is that the physicians work very closely with each other and physicians at CHOP are faculty at the University of Penn so they are often working with the Penn doctors on research. I know Dr. Merkel and Dr. Behrens are very familiar with each other so if your son went to CHOP, his physician could still consult with Dr. Merkel. I believe there is another doctor at CHOP, Pamela Weiss, who is a pediatric vasculitis specialist. If you have any questions about CHOP/Penn, feel free to reach out to me. Good luck!