sponge kidney

[jmd3382]

When i was pregnat i was told my child would face kidney problems. After his birth they told me his right kidney is a medullary sponge kidney. the first doctor we saw told me he is fine no need to follow unless he has problems. when my son was 2 years old he was hospitalized for an illius. while in the hospital they noticed his kidney and consulted another kidney doctor. this new doctor had us come in every 6 months to have an ultra sound done to make sure the calcifacation were not getting worse. he then left and the new doctor he sent us to told me no need for the 6 months follow-ups. my questions is "Should my son have an ultra sound and check up every 6 months or dont worry till he has a problem?"

[MSKshelly]

I am soo glad that they found this early in your son!  I have MSK as well, I am 43 and was only diagnoised with it in 2003.  It is important that you follow up with the testing for your son.  I am impressed that they are using ultrasound instead of x-rays.  MSK for many is a benign disease but for 10% of us it can cause many problems.  It is very rare to only have MSK in one kidney.  MOst likely they both have it but only the one currently has the calcifications.  I personally have more stones then they can count, nephrocalcinosis and live with a very difficult to treat chronic infection.  I also live with chronic pain because of it! Stay proactive on your son's behalf..., there are many things they can do to help prevent him from making more stones!

Have you had a 24 hour urine done to check for metabolic issues?
South Western University has a lot of on going studies specifically for stone diseases and metabolic issues.  Only after going through their testing, did they find out that I am hypercalturia, which means that calcium doesn't get put into my blood stream, bones etc. properly instead it is dumped into my urine!  They also found that this has already caused me to lose a lot of bone desity, and I am very close to osteoperosis already!
They might have a study that he could get into, esp. being soo young, that could help you with any metabolic issues.  Had they done this for me years ago, they could have prevented the progression of this disease to this point!

There are many issues that can go along with MSK that a lot of doctors are not familiar with.  For me other patients have helped my doctor and I to find out what is really going on in my body!

We actually have a MSK community on this board that would be a help to you!  
The link below is to a thread on the board since I can not access that link while typing this:  I would highly encourage you to sign onto this board... post and watch the threads.
Be your sons, best advocate... believe him and do all you can to help him prevent future problems!

http://www.medhelp.org/posts/show/538854
Then go back to all discussions to learn more info.

I hope to see you on the board soon!
Shelly

[Rowena Santos, MD]

How are you? How is your son? I agree that joining a support group will be very helpful. You will learn a lot of information about MSK as well as gain new friends. Medullary sponge kidney is a developmental abnormality occurring in the medullary pyramids of the kidney. Most patients with MSK remain asymptomatic throughout life. However, complications such as infection, hematuria, and nephrolithiasis may happen and this is prevented by periodic ultrasound. This is because ultrasound findings can demonstrate complications related to calculus disease.

I hope this helps. Take care and keep us posted.