Nephritis and Lupus?

I have a son who was originally diagnosed with Nephritis. Now he has been diagnosed with Lupus also. Just wondering if there are any other parents out there with a similar situation. He is 14 and used to be very athletic before all of his symptoms hit.

I need to add that he is being seen by a very well known nephrologist at the University hospital of Missouri in Columbia. He actually sees 4 different specialists there. The nephrologist, rheumatologist, endocrynologist and dermatologist. He sees his nephrologist and rhuemtologist every 6 weeks. The others about every 3 months. I would very much like to find him a support group with children close to his age. Thank you all for your replies thus far.

I offer you HOPE. My wife was diagnosed with Lupus Nephritis (Lupus is the actual cause of your sons nephritis) at age 15. She played for a state championship basketball team in high school and is now 30 and a dentist. She has had flare up's of her Lupus and has had to be hosptialized at times. The medications that they are presently using to treat Lupus Nephritis are the most advanced in years. Each and every drug study brings more weapons to the fight. Most patients are currently taking Cellcept or Myfortic (a time released version of Cellcept that can be better tolerated in the stomach). This along with Prednisone (a difficult drug to take long term but one that has no equal in controlling inflammation) seems to curb creatine levels in the urine. I'm sure you've gotten the usual warnings about sun exposure and being more prone to illness so I'll save that here. Your son will have to make some lifestyle changes such as admitting when he's not feeling well or run down but he can still participate in sports and normal teenage activities (I would make sure to caution him about alcohol). Whatever you do, please do not baby him. Nothing will destroy his ability to fight this diease more than not having a will to push on.

As far as support groups...when my wife was diagnosed there was nothing for younger sufferers of Lupus. Everyone with the disease seemed to be 45-50 year olds. But nowadays with the sophisticated tests to diagnose it many many more teenagers are finding themselves having this nasty disease. There are support groups out there for young people and the best way to find them in your area is to check the lupus website...lupus.org and click on support groups and they should be able to guide you in the right direction...best of luck!!!

Oh one final note: Please make sure to have your son checked for Antiphospholipid syndrome. This is a blood disease that causes clotting. 50% of Lupus patients have this disease but only 25% of them are tested. This is a very serious disease that needs to be managed with a blood thinner. It's a simple blood test but many doctors aren't informed well enough to take this test. Don't just assume it was taken.

first time i hear of a patient with this disease at this young age . no need to be worry as there are many effective medications but most importantly is support for the patient and never ignore the medical appointments as this disease can affect any part in the body . best wishes.

This is serious. You need to bring him to the best doctors you can get to. Look for a major university hospital or travel to a big national tertiary care center like Johns Hopkins, Cleveland Clinic, Mayo Clinic, etc. He is so young and you want him to have the best possible chances. The foremost authority in the USA on this kidney diseases is Dr. Gerald Appel at Columbia Presbyterian in NYC. He is going to be living with this his entire life so get to the best NOW. Below is an article on good kidney programs at major US hospitals.

I was originally diagnosed with Nephritis. We knew it was caused by something else though, and the underline cause turned out to be Lupus. Depending on where you are located there are hospitals that can treat this condition. I am in Chicago, but am treated at the mayo clinic because the common form of treatment causes infertility and I was not interested in that. If you go to Lupus.org you can find the local branch for your area and it'll help you find local doctors. Good luck.