New to all of this

Do you have a young child or teenager with ARPKD or ADPKD? Talk to other parents who are caring for children with PKD.
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New to all of this

Postby meg » Thu Sep 04, 2014 3:49 pm

I'm looking to connect with others that know about PKD. We took our daughter for an ultrasound at 2 weeks old (in May 2014) to check on some extra fluid we had been monitoring in her kidneys (hydronephrosis). It looked great, so we were told to do a routine ultrasound in 3 months.

We just had that appointment last week (August 2014) and that's when we discovered the cysts on her kidneys. They weren't there at 2 weeks, but there were several that had grown to a significant size at 3 months. The doctors are thinking it is probably autosomal dominant PKD. They are also saying that ours is a case unlike most due to her very young age and the speed of the cysts. Has anyone else out there had an experience similar to ours?

My questions are:

1. Right now we are working with a nurse practitioner that specializes in pediatric nephrology. However, the hospital also has doctors that specialize in nephrology. Should we be requesting one of them instead? I'm not quite sure the difference between doctor and nurse practitioner.

2. We were told to come back in 3 months for a follow up ultrasound and that's when we will do the genetic testing to confirm PKD. Should we push to do the genetic testing sooner?

3. We also have a 2 year old. Should we test her right away? The nurse practitioner is hesitant to have us get her tested, yet I think I want to know. Is there a reason not to?

4. Should we test ourselves? The doctors are advising us to be very cautious about getting ourselves tested for insurance purposes... I'm thinking I want to know though.

It's only been a week, but I'm having trouble understanding how I should feel about this situation. Bleak? Hopeful? I just found this website tonight and am hoping to connect with some others. I'm also wondering if anyone has had the experience where this situation affected their desire to have more children. Thank you,



Re: New to all of this

Postby ambooker » Thu Oct 16, 2014 11:42 am

Hey Meg,

I just happened to start looking into these discussion forums and I came across yours and I would love to help you. I'm 19, almost 20 years old and I have been fighting PKD since the day I was born. Because the doctors think your daughter has ADPKD, I would test yourselves as soon as possible. With ADPKD it's the dominant gene that is passed on. So either you or her father could have it that would have passed the gene on. My mom was 34 when she had me and she lived 34 years of her life without knowing she had ADPKD. When she was carrying me she said she said horrible pains, like excruciating pain. I was her first child so she thought that was normal. The day she went into labor (the day before her birthday!) she had 103 degree temperature and she was really sick. Then the next morning when I was born (her birthday!) I was sick.. I came out with the same temperature my mom had, and my skin was fiery red. The doctors put me, a healthy sized baby in an incubator in a room with all the premature babies. I stayed in the hospital for 8 days before they figured out I had PKD. When my mom found out what I had the doctors looked into family history and discovered that her mother passed away from a brain aneurism, when my mom was 16 years old. My grandma had PKD, and it was passed to my mom, my uncle, and my aunt. My mom is 1 of 4 children and 3 out of the 4 were passed the gene.

Now to try and answer your questions:
1. I always saw a doctor. I live in a suburb of Chicago, so I traveled to the Children's Memorial Hospital to see a special nephrologist doctor. My parents chose him because when they had me seeing the nurses at only a few months old, they couldn't figure out where to draw my blood from and I just kept crying and screaming from being poked with the needle. My parents said that he walked into the door took the needle, found the vein in my head and drew the blood then he introduced himself. He was a very good doctor.

2. I don't know how often I went to doctors when I was under a year old. But I know that I always had a visit every 6 months and every year. When I got to be about 8 or 9 years old I just went once a year. Now because I switched doctors 2 years ago, and we found out that I have aggressive progression I go every 6 months.

3. In my opinion I would have your other daughter checked only because, just like you said, I would want to know too. Like I said, my mom lived with PKD for 34 years and didn't even know she had it.

4. I would definitely test yourselves, and look at family history. One of you have passed it on to her and if its the dominant gene than one of you are living with it and don't even know it.

I know I'm only 19 years old, but I've always thought about what to do about having children in the future. I want children, but of course there is the risk of passing it on. With ADPKD there is a 50% chance as I stated before. My mom said she had a hard time carrying me, well thats because her kidneys were so large. A normal adult kidney is 6cm. PKD kidneys can get up to the size of footballs. Right now at age 19 my left kidney is 15.3 cm. and my right is 19.8cm. My doctor has said kidneys usually reach about 22cm-24cm before the function starts to decrease. I said I would always adopt my children, but the more I thought about it the more I thought that I would really want my children to look like me. I always wondered if there was a way to test certain eggs to see if they carried the gene. And then I always thought about a surrogate. It's ultimately a hard decision to make.

I really hope this helps. It gets overwhelming at times, because you have to realize that this is a disease that has no treatment and no cure. My advice is for you to become as knowledgeable as possible, find out if your area has a Chapter and attend the meetings. Join support groups, and even continue to do these discussion posts. This is my first discussion post, my mom, boyfriend and some family are doing a PKD Walk in a week. My mom and I living with PKD are now trying to be as involved as possible. My uncle has 12% total kidney function left and just recently started dialysis. MY doctor estimates that my mom has about 60% function. My mom and I have a kidney that is the same size and shes a lot older than I am. By the time I'm 30 I'll probably have to start dialysis. I really really hope I have helped in anyway. I will continue to check this forum if you ever want to talk for support, or if you have other questions. I'm praying for you and your family.

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Joined: Tue Nov 18, 2014 11:59 am

Re: New to all of this

Postby ceeceeharley » Tue Nov 18, 2014 12:08 pm

Hello, My name is Clare and My daughter who is 9 got diagnosed yesterday with ADPKD. It has been very overwhelming. She went to the doctor with a pain, and they found out she had a kidney stone, and then after an ultrasound they saw the multiple cysts in each kidney. We had an MRI last week and she was diagnosed yesterday. My ex husband is having an ultrasound today and I have had kidney issues, but I was never diagnosed with ADPKD. So, we have a son, who is her Twin, and we are going to get him tested as well. My question is did you suffer from Kidney stones at all? How has your life been? Have you experienced pain throughout your teens?

Thank you for your help, and I hope you will continue to be healthy


Re: New to all of this

Postby Michelek » Mon Dec 01, 2014 7:56 pm

I wanted to respond here as well. I have two boys with ARPKD. My youngest was diagnosed first when he was 4 weeks of age. We were then told there was no need to test our older boys but we went ahead and had sonograms done. Our oldest was six at the time and showed echogenic kidneys. It is controversial to have other children tested and you could get ten different opinions from ten different people. For us it was the right thing to do because I couldn't live with not having an answer. But that being said once you have your child diagnosed then they cannot get life insurance. But who knows if that will change by the time our children are adults. But with ADPKD it might not show up now but could show up later in life. So my suggestion would be most importantly to check blood pressure, urine tests, and blood work to look at creatinine frequently. My opinion is also to see a pediatric nephrologist, preferably one who is knowledgeable on PKD in children. I hope your children are doing well Clare and Meg.

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Joined: Tue Dec 16, 2014 8:35 pm

Re: New to all of this

Postby ambooker » Fri Jan 30, 2015 4:39 pm


I am so sorry I just now checked back on to see if any posts had been made. I have yet to have kidney stones, knock on wood. My life has been alright! The only set back is that when I was a kid in the neighborhood I always played rough games with the boys and all the parents had to be told to watch out for me because if I got hit or fell the wrong way that could potentially make my kidneys bleed. So contact sports were always out of the questions. I have to watch how I lift things and how much I lift, because it could potentially cause a cyst to burst. I still work out and lift weights and what not but in moderation. As far as pain goes, I've not had too much as a child, or as a young teen. I am 20 now, and just since the age of 17 I was experiencing lower back pain a lot. I also have heart burn horribly which is caused by my kidneys being so large pressing on the other organs. I was also having horrid headaches which can be associated with brain aneurisms which is directly related to PKD, it's what my grandmother passed away from. I had an MRA of the brain to see if I had an aneurism and thankfully I did not. I hope this helps! I hope you, your ex husband, and your children are okay!


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