Polycystic Kidney Disease (PKD) Support Group

Lynne,
I can only imagine how confusing this must be. We are all born with the PKD gene and how it manifests just varies by individual. Some of us actually develop cysts in utero while others develop cysts later in life. There is no standard and for most of us, there is no need for any imaging at an early age becasue we have no problems. I was diagnosed at age 26 ONLY because my brother was in a skiing accident, was diagnosed and thought to have lost both of his kidneys and possibly needed a kidney donor (turns out he didn't need a kidney and he's doing just fine). Otherwise I wouldn't have known anything about PKD until at least 5 years later and that's only because I had a massive kidney stone stuck in my kidney (and chances are no one would have discovered the PKD then because the stone was found with X-rays, no CTs or MRIs were done).

What's important is how your daughter's kidneys are functioning. As long as she has good kidney function and she stays healthy (maintains good hygeine practices to avoid more UTIs, always wiping from front to back, wearing cotton underwear that breathe, changing out of a wet swimsuit as soon as possible and avoiding bubble baths), drinks plenty of fluids, eats healthy and avoids heavy duty contact sports, she should be fine. Be sure to keep an eye on her blood pressure.

As for why adult and not infantile PKD...it's because you have ADPKD and there is a 50/50 chance that each of your children will inherit PKD. You and your husband don't carry the recessive gene for ARPKD (if you did there would be a 25% chance that each of your children would inherit ARPKD...and there is only one documented case where someone had ADPKD and carried the ARPKD gene). Rest assured, ADPKD is much less aggressive than the recessive form and if had to chose one over the other, ADPKD is the way to go (not that I'm about to chose either).

No one can predict the future so all you can do is be a loving parent and take care of her....and let her be a normal 9-year old. If she has normal kidney function now, chances are very good she will not need dialysis in the near or even distant future. Just work with her nephrologist (pediatric nephrology is a different speciality than adult nephrology) and let her be a kid. I'd say don't worry, but you're a mother and you're going to worry no matter what.

Gentle hugs,
Ruth

thanks ruth, i do worry cos her cysts have grown far quicker than mine have, i was diagnosed at 18 im now 41. ive had problems the past 2 yrs, but untill then been fairly ok..my uncle was diagnosed so we all had to be checked. all dads side were affected!!! i had a cyst removed from out side my kidney when i was 5 but no one found polycystic kidneys.ive lived in denial about pkd up untill very recently and i now feel scared 4 me but more so 4 my daughter.your reply has made some sence to me so thanks again xxxxxx

Yes...my brother who just turned 16 had his PKD discovered in the womb.

He is symptom free so far aside from High Blood Pressure.

The best thing to do is just educate and encourage to live life to its fullest.

My parents told me the same thing when I was 7...."it won't affect you until you're grandpa's age". That wasn't true....and I think honesty is the only policy people should practice.

I'll never lie to my brother or tell him anything that's not true.

But what I do tell him is to just keep on keeping on.

It's a hard thing to deal with but I'm sure you'll find a way to support your daughter.

And do NOT feel guilty....she came into this world and it was for a reason, right?

Hi Lynne, my daughter was diagnosed with ADPKD at age 8 and started on medication for high blood pressure. She is now going to turn 14 in December and her kidney function is still good.

I remember having the same concerns as you when Brianne was first diagnosed so I addressed then to the social worker connected with the clinic. She in turn went directly to the doctor. So the upshot was, ADPKD affects everyone differently so therefore everyone's outcome is different.

I realize this doesn't provide much assurance one way or the other but at least it doesn't point towards early dialysis either. I am much more relaxed about it now that 6 years have gone by without any loss of kidney function.

The fact your daughter still has good blood pressure is promising. Hopefully she will not have to worry about dealing with symptoms until there is a treatment available for her. Take care Kelley

thank you every one,im so relieved to hear from some one with a child of similar age with pkd especially.not sure where you are kelley im in uk. please keep on touch.hope your little girl is doing ok. im glad to hear some one else was diagnosed in the womb 2, i was always told it didnt show till you were a late teen, i feel a little calmer knowin others are doing ok. thank you all so much xxxxx

Hi,
I am a father of a now 12 year old girl that was discovered to have PKD near the beginning of this past summer. I know exactly what you are going thru. In our case, it took us completely by surprise since there is no family history (our daughter is the first). Some may think that after 9 years, you would have overcome the feeling of guilt, which is of course unfounded, but the mind is a tricky, and we all need to control it. It is none’s fault, it just is, and we all need lots of strength and courage to handle it. It’s normal for the mind to wonder sometimes, I know mine did constantly, and sometimes it still does.

Let me tell you a short story that might make me sound as the most horrible person on earth, but I call them as I see them. I remember when we got the news of our daughter’s PKD, the doctor send me, my wife and our 10 year old boy to get checked. As horrible as this may sound, I was praying I did not have PKD and wish it was my wife. Not because I was afraid of having the disease nor the consequences, but because I thought I would not be able to live with the guilt, and yes, all kinds of crazy stuff when thru my mind. Had it been my wife, I would have never blamed her at all, I swear, cause the rational part of my brain knew there was really no one to blame, unless it was me (the tricky or irrational mind at work). That was my crazy and irrational side thinking. The truth is that it is no ones fault, it is a disease and we all need to learn to deal with it. Don’t let your mind wonder too much, because there is really no one to blame.

Your daughter at 9 may have lots of cysts, but later in live she may grow fewer, our doctor says he has seen this happen many times, and hopefully, that will be your daughter's case (we are in a similar situation, where our daughter only had what we all thought was a single cyst for about 10 years, and then in 1 year she grew 8). If I try to make a prediction, Ill go crazy, and most probably for nothing, since changes are our daughters will be ok for the next 30 or 40 years, and by then, science will hopefully and most probably have a solution by then.

Finally, I am no preacher or religious freak, but when in doubt, turn to God, in no specific way, make it in your own way, speak to him from your heart, and he will give you strength, and will keep your daughter safe.

Good wishes to you and your family,
PKDAD

as you have already been told, we with PKD are all born with the disease. the term "adult" is confusing but trust me, be glad it is the adult form and not ARPKD which is usually fatal in infancy.
and I suppose most of us carry some guilt for passing it on to our children, tho most of us did not know we had PKD when our children were conceived.
unless there are things going on with your daughter she should be allowed to live a normal life, just as you were. you also had PKD as a child and were probably not put in a bubble, she should not be either.

i was had it sinve i was 6months an i am only 15 and i have had a lot of problems. but it should tgo away. they is two types of pkd so ya i have been fighting ablot i hopethis helps