ADPKD and enlarged kidneys - newborn - PKD Charity for A...

PKD Charity for Autosomal Dominant PKD

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ADPKD and enlarged kidneys - newborn

Stan87
Stan87

Hello everyone. I've just become a father and unfortunately our daughter got PKD from my wife so the "bad" 50% have played in our case. My wife's family history suggests first symptomes in late 40s with kidney failure starting to progress after age of 60. But our daughter has significantly enlarged kidneys (both 10cm) in her 2 months though the blood pressure and biochemical results look pretty promising. I would be very thankful if anyone will share stories about how it goes with their kids with similar picture from start. Wish a good health to all who reads this.

4 Replies
oldestnewest

Hello there! I too have ADPKD and have a long family history with it. I can relate a bit to your story, and maybe can help some! During my 18 week ultrasound with my daughter, the doctors noticed that her kidneys were bigger and brighter than they should have been. With my family history and my own diagnosis, they determined that it was likely that she too had PKD. They would not give her the official diagnosis until ultrasound after birth though. And she actually was not officially diagnosed with PKD until she was 3 when ultrasounds showed more cysts and met the qualifications of diagnosis. With all that being said, my daughter is now 11 years old and is extremely healthy! She sees a pediatric nephrologist yearly for bloodwork and the occasional ultrasound. Her blood pressure and all tests come back very normal. She plays soccer, runs cross-country and is a very active child! Her PKD affects her in no way at this point! She knows she has it but I don't think she ever thinks about it unless she has to go to the doctor. She really takes her cues from our family though, none of us look at PKD as a life-altering illness. My dad's kidneys failed at around age 43 and he had a transplant at 45 (it's been 20 years now and the kidney still functions perfectly!). As for myself, I am 38 and have had no change in my kidney function over the years. At this point, it looks like my PKD will follow a very different path than that of my dad and other family members. I hope that your daughter's kidneys will remain healthy for a very long time! Looking at my daughter, you would never know that she had PKD and she certainly leads a VERY normal life like any other 11 year old girl! I hope that our story helps you out in some way!

Stan87
Stan87 in reply to kacl3179

Thats an inspiring story, I hope your family will do that good for long years. Could you please tell what was an approximate size of you daughter's kidneys? Was her stomach visually enlarged in neonatal period?

JDelve
JDelve in reply to Stan87

I’ve just seen your post. It’s such a shock isn’t it? I’m so sorry to hear about your daughter. I was panic stricken and had a knot of fear in the pit of my stomach 24/7 when my daughter was born. Her (and my sons) stomach was hugely distended. But as they have grown it’s far less noticeable. My daughter is now 14, full kidney function still, tall, slim and beautiful. No distended stomache at all, despite the enlarged kidneys. My son, now 11, almost 12, is much smaller than he should be. But kidney function is normal and doing sooo well. So, as the lady above said. It’s so slow progressing, and quality of life is, on the whole totally normal - other than regular hospital visits. You forget you even have it most of the time! So please don’t panic, it’s not a death sentence. We simply say we’re all part of a Kidney Club.

Hi! My son, 8 yo, has ADPKD. He has multiple large cysts on both kidneys, the biggest 3.5/2.5. His kidneys size are 9.5 cm and 10.5 cm. His GFR is 114 ml/min/1.73m2.

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