Polycystic Kidney Disease (PKD) Support Group

Wonderful to hear your son is doing well. Most of the people here have ADPKD. I did a little web searching and found a link for ARPKD that looks like a good group. Maybe you would be interested in checking it. http://www.arpkdchf.org/pt.%20info...

I am so glad your son is doing well and you are doing all the "right" things to keep him healthy. knowing his is loved and cared for will go a long way in giving him the will to stay as healthy as possible.
the "adult" form of PKD ran rampant in my family, coming from my mother, but the "childhood" form (ARPKD) is not known to us.
whatever form, love and cherish your son, his little head is thirsting for knowledge so fill it up with good things, read to him a lot, kids love it, if the housework suffers because you are reading to your child I sincerely believe that God will not only forgive a less than perfect home but reward it if the child benefits.
please keep us informed of his progress and know you and your son will be in my prayers.

There have been incredible advances wtiht eh recessive form of PKD. It is very different from the autosomal dominant form that affects that vast majority of us, so it's hard to compare what we're going through to what you're beautiful son is.

There is a longitudinal study following patients with ARPKD forever. The only requirement to enroll is you be at least 6 months old and they have ARPKD patients who are in their 40s to 60s and still going strong on their native kindeys, so yes, there is hope! You can find more information about this trial at: http://www.clinicaltrials.gov/ct2/... The National Institutes of Health will pay for you and your son to come to NIH and stay at Children's House on the NIH campus, give him an thorough physical with special focus on all aspects of ARPKD (kidneys, liver, etc.) and give both of you (you for now, both of you as he gets older and more involved in his own care and treatment) all the latest and greatest information about treatment and treatment. While they do not provide direct care, they will coordinate recommendations for care with your son's nephrologist and are available to you at any time for any questions whatsoever. I know a few families with children with ARPKD who speak very highly of the researchers and their compassion and knowledge.

There is another core study at the University of Alabama; I'm not sure exactly what that entails (I think it may be a genetic study). Again, the information is available at www.clinicaltrials.gov and search for ARPKD.

The ARPKD chapter of the PKD Foundation is a virtual chapter; they are spread out across the nation and indeed the world and the coordinators will not only talk with your about their personal experiences, but can put you in contact with a family in your area who is going through the same experiences you are. They are incredible people who have all had or have a child with ARPKD. One of the coordinators, Julia Roberts, has two children, both with ARPKD, one of whom just received a kidney transplant on her birthday last month. You can read all about their experiences from diagnosis to today on her blog, www.kidneysandeyes.com. The other coordinator has a now 6-7 year old. I think he too is post transplant, and is an absolute delight. But rest assured, I've also met many children in their teens and much older with ARPKD who have yet to need a transplant, so while these 3 children have, there are wide variations to how the disease affects children as well and your wonderful curious little boy may do just fine for years to come.

There is always hope and your son is a fighter; he's survived the most challenging part of the journey, those first 6 months. Please consider yourself and your precious baby boy hugged!

Best wishes,
Ruth

My friend's nephew has ARPKD and is doing very well. He is now 13 years old and still has good function. He is a happy kid and does well is school and has lots of friends. His uncle (my friend) called me a while ago to say he would have liked to see if he could be my donor but he is "saving" his kidney should his nephew need it. How wonderful that your son has a mom who is such a good advocate for him.

I want to thank all of you for responding. Your reply has given me encouragement and helpful links to move us further in understanding this disease. Thank you so much!!!!