Mother of 2 PKD babes

[Taylorpaige94]

My daughter was diagnosed at 2 months old, and my son was diagnosed in utero. Their father was recently diagnosed as well, and his mothers side of the family have it heavily. I don't even know where to begin. I want to ensure my children have long, healthy, unaffected lives.

[Taylorpaige94]

I should also clarify they both have ADPKD!

[Porphyrogennetos in reply to Taylorpaige94]

I did not know that it was possible to dx so early. I have two kids as well.

I wish you all the best for your kids. There is a lot of research going on. Who knows what can be within ten or fifteen years.

P.

[Mgt8]

Hi

My daughter has also inherited ADPKD from me but thankfully my son is ok....

This progressive illness does not really affect us until we're older....i only discovered I had it when I was 54!

It is true that those who are involved in kidney research are finding new things all the time which help slow development of cysts down...i believe that people at stage 3 can now take a medication that may be helpful at this.....

My daughter is in her 20s now and is fantastic about keeping her yearly appointments and forgetting it for the rest of the year. She eats healthily and enjoys exercise and avoids things that may harm her kidneys; anti inflamitories and keeps an eye on her blood pressure.. ... I am hopeful that by the time she is in her 50s...there will be new treatments available.....

It is a worrying time when you first discover your children are affected and I felt guilty, angry, helpless, ..... I still do but the joy of watching our children grow into happy confident individuals puts everything else into perspective.. ..

Wishing you the very best....

Margaret

[JDelve]

Don't panic! I've been there. Two of my three children were born with PKD (both diagnosed in utero). It's such a shock, and I cried for days. They are now aged 13 (almost 14) and 11, and doing very, very well. Kidney function still normal. Sadly inherited from me. I have 4 other siblings and 4 of us have PKD, so yes, strongly dominant. When my babies were diagnosed I went into a grief stricken panic, trying to find something that would cure it. Sadly, no cure, as of yet - that we know of. But, there are plenty of things that you can do. It's really hard when children are little, since you want them to have as normal as life as possible, but there are certainly things that you can do.

I've been keeping a blog regarding my children and myself, and the type of lifestyle and diet that can hopefully help with delaying or perhaps even put off the dreaded kidney failure.

I'm no expert though, just a Mother like you. It's all trial and error, but I'm prepared to do anything if it means my kidneys will continue to function for as long as possible and I'm feeling great with it. I have no symptoms, and neither do the children.

ourlifewithpkd.wordpress.com/

Then you can hear my story and my findings. My childrens stories are right near the beginning of the blog.

Good luck.