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Tomorrow the dreaded appointment ***UPDATE***

Posted by on May. 30, 2016 at 9:57 PM
  • 16 Replies
1 mom liked this

My oldest Noah he is 9yo. He has a rare kidney disease called Auto-summinal polycystic kidney... AD-PKD. The twist is he and about 8 other kids in the US have a new mutation to the PKD gene. Out of the 9 kids.... Noah is the healthiest. And I am grateful for that every single day.

When we where preg we where told he would never make it home. That he would most likely pass within 30mins. In womb he seemed to stabilize.... So then we where told that the best would could hope for was a year maybe two. But it would be a short painful life. After birth they looked at time and said..... The best we could hope for was he would make it to nearly 6 only with a transplant before the age of 2yo. 

Here we are 9 years later... no surgeries no medication.... he is healthy.... Last year we found that after years of no progression his cycst had started to form. He had/has two large ones in each kidney. His blood work and urine came back normal so I was told not to worry.

Two years ago there was a clinical trail started for a med that would stop the progression of his PKD right where it is now.   I am really hoping they will ok a trial for kids and soon.

Keep your fingers crossed for him please. 


So we arehome from the appointment.... There is nothing new!! Which is great news!!!!! His cycst have stabilized for now. His blood and UA are normal <3 GO NOAH

by on May. 30, 2016 at 9:57 PM
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Replies (1-10):
rebecca_new_mom
by Gold Member on May. 30, 2016 at 10:21 PM

Hugs, fingers crossed and best wishes!

dawncs
by Dawn on May. 30, 2016 at 10:31 PM

You and Noah are in my thoughts and prayers!

Dawn
Asperger Syndrome Published Author and Blogger
Asperger Syndrome diagnosed May 1997 as an adult
My Author Blog 
My Author Website

MixedCooke
by Group Admin on May. 31, 2016 at 1:08 AM

GOOD LUCK!

karene999
by Karen on May. 31, 2016 at 9:33 AM

In our thoughts and prayers...let  us know what happens 

lady-J-Rock
by Niki on May. 31, 2016 at 10:16 AM
Good luck.
Charizma77
by Carissa on May. 31, 2016 at 11:43 AM
Hugs and prayers your way. Please keep us posted
brennan5882300
by Bronze Member on Jun. 1, 2016 at 3:30 PM

GREAT NEWS!!!!  :)

rebecca_new_mom
by Gold Member on Jun. 1, 2016 at 3:35 PM

Wonderful update! So, so glad.

MamaLauri
by Silver Member on Jun. 1, 2016 at 5:04 PM

I am praying for you. Keep up your positive thoughts.praying

Charizma77
by Carissa on Jun. 1, 2016 at 5:52 PM
Yay!
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