Steroid resistant minimal change nephrotic syndrome in toddler

By jmcpowlen
Posted September 17, 2008 at 10:23 pm · 1 reply
In Finding a doctor

My 2 year old nephew is in kidney failure. He has not responded to any drugs and he continues to get worse. Because he is not responding to the usual drugs, his doctor thinks he may have "congenital nephropathy of the Finnish type" (inherited as an autosomal recessive trait). My family is scrambling to find a great hospital/great doctor to treat this child with this unusual diagnosis. We don't know where to start. We would like to find a pediatric nephrologist who has experience with highly unusual diagnoses. Does anyone have any suggestions for finding a doctor who treats rare cases?

Also, has anyone ever heard of or had any experience with the drug Rituximab?

Any information would be greatly appreciated!!

1 reply

By MichelleP
Posted September 21, 2008 at 11:08 pm
Report post

Hello. I am not sure where you live. Children's Mercy Hospital in Kansas City, Missouri, is a good place to start. You might call them and ask to speak to a staff Nephrologist and ask him/her for advise as to where you could be seen. They are experts in all types of diseases of children and know the experts all around the country. St. Jude's may also be helpful, even just calling the facilities and asking for advise should be quite helpful to you. I wish your nephew all the best and hope the doctor's figure it all out soon.

Add to the discussion

Search

Find information and discussion about health topics in 348,705 posts by members like yourself. Learn more...

Join

Join safe, secure groups sponsored by trusted organizations that care about your health. Learn more...

Connect

Connect with 87,781 members and make friends who share your interests, learn about conditions and treatments, find support and more. Learn more...