Bilateral Multicystic Dysplatic Kidney disease

My son has been diagnosed with Bilateral Multicystic Dysplatic Kidney disease at age 21 months.  My understanding is that the kidneys are generally small, but in his case the are enlarged with the largest cyct over 1 cm in the left kidney. He also has hyperparathyriodism and is extremely small for his age.  He is 30" and 20 lbs. at 24 months old.
His Creatinine clearance is .07 (GFR of 61%).

Could any of this cause his failure to thrive?  I was told that the kidney function is not poor enough to affect his stature at this time.  

I would appreciate any advice you can provide on his failure to thrive and his kidney disease.  I know he will need a transplant at some point, but we just don't know when.  All my research indicates that Bilateral Multicystic Dysplatic Kidney disease indicate that the children do not live, but my son is a happy, active 2 year old.

[beachlover89]

Hi Gwen,

My son was born with autosonomal polycystic kidney disease and was not diagnosed until almost 4 years of age.  I knew that something wasn't right from birth with him and all the signs were there and unfortunately missed.  The big thing to me was his not growing after age 18 months.  I finally ended up getting a pediatrician who listened to mom and he diagnosed it almost immediately.  Anyway to make a long story short, son has been on blood pressure meds since age 8, we watch his diet (protein and caffeine intake) and 18 months ago he started nutropin for growth hormone therapy.  He has surpassed his predicted height had we not done anything and grew 8 1/2 inches during this time.  We are thrilled.  Don't settle for one doctor's opinion.  If you, mom who knows him, feels that something should be further checked, please, please do find another doctor who will listen.  My  son is now 15 and I am grateful for the pediatrician, the nephrologist and the endocrinologist who don't have an ego amongst them and put him the patient first!   They are all open to information from each other and if one is doing a blood draw, they let the other know so that if they need something, the child isn't being poked unnecessarily.  Good luck!!