Teens and PKD

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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Teens and PKD

Postby Moderator » Tue Oct 15, 2013 2:00 pm

Recently, I met a teenager just diagnosed with PKD. She struggled with telling her friends about PKD and communicating to teachers why she sometimes misses school. Let's talk about how families help children cope with a PKD diagnosis.
To learn more, visit pkdcure.org! If you have questions, please email education@pkdcure.org.

amy boyd

Re: Teens and PKD

Postby amy boyd » Wed Nov 20, 2013 3:39 pm

My daughter is 15 and was diagnosed 4 years ago. She had no symptoms or complications until about a year ago. That was when she first had to deal with it affecting her school work and friends. At first she didn't want to tell anyone, she just wanted to be "Normal" like all teenagers. It wasn't until we signed up to do the walk that she talked about it with friends and teachers. What was amazing was the support and understanding that they showed her, some of her teachers even donated! Because they were so wonderful about it she now has the confidence in herself to discuss PKD with her friends, teachers, and even strangers. I think if we can encourage our kids to be open about PKD and what they go through, they will find that there is a lot of support and people really do care. It's not something our kids need to feel ashamed of, it's nothing they have done. My daughter has really showed me how strong she is and although she has daily struggles, she is not afraid to talk about it. I am truly in AWE of her!!

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Re: Teens and PKD

Postby LeslieW » Mon Dec 16, 2013 11:26 am

Amy, I'm so glad you shared the story of your daughter and how she is dealing with PKD - it's really inspiring!! I loved to read that being part of the walk helped her to open up and talk to others about it ... and the fact that her teachers donated is wonderful!

In my family, my mother has PKD, and even has had severe liver cysts, but thankfully no dialysis yet at age 73. She had a sister who died of stroke & heart problems, likely because of PKD but never diagnosed. I know that one of my sisters also has PKD, and we think that my sister's son has it as well. I have not yet found out if I have it or not, but I do have a sonogram scheduled for tomorrow morning. Our youngest son is giving a PowerPoint presentation about PKD to his class today, and came up with a separate presentation that gives "The ABCs" of PKD. He even obtained little bracelets, etc. to hand out to his class. I'm proud of him.

Please stay in touch, Amy, about how your daughter is doing and how she's been able to get the word out about PKD. I'm proud of her as well!

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Re: Teens and PKD

Postby bushbabe5 » Sun Mar 16, 2014 3:33 pm

Hello, I am new to this so bare with me. I have a daughter that is 14 almost 15. Three years ago we found out she had a heart murmur, she had 2 holes in her heart that they fixed. But they did say it looked like a bunch of pinholes in the inside lining of her heart there was nothing they could do for that. I think the bottom left part was still enlarged. We just had to wait to see if it goes down on it's own. About a month ago she had to get a MRI done on her heart to see if it had gotten smaller. Then they saw some cysts on her kidney, her heart doctor wanted her to see another doctor at U of M. This last Friday was her appointment, the did another ultra sound on her. I was told that she has PKD. At that time I had no clue what that was. She told me a few things but nothing in real detail. She has to get a kidney function test and some blood work done. Any ways back in 2006 I was told that they found cysts on my kidney but never said another thing about it. My mom then told me she has them to. Now from what i have read on the internet it is genetic. I also have 2 other daughters 11 and 16. I want them to get checked out to. My youngest has always had stomach problems, this now makes me wonder. She looks like she is about to have a baby but keep telling me she is constipated. Anyways I was just wondering what kind of things i should watch for or should i start her on a diet now. She gets a lot of headaches, has a few uti's, her back hurts a lot. Is there any information anybody could give me from you experiences I would love it. Thank you :? :?:

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Re: Teens and PKD

Postby Moderator » Mon Mar 17, 2014 2:11 pm

Thank you for sharing! We have a lot of information about PKD at pkdcure.org in the Learn section that will address some of the concerns mentioned in your post. You will find frequently asked questions and answers organized by stage of PKD. I will copy some information and links here to help direct you to information. Feel free to email education@pkdcure.org for more specific information.

How does a person get PKD? Because PKD is an inherited disorder, the dominant form of the disease (ADPKD) is passed from one generation to the next by an affected parent. An ADPKD parent has a 50% chance of passing the PKD mutation to each of his/her children at conception - having a child who inherits ADPKD with each pregnancy, no matter how many children a person has. In some families, all the children are affected; in other families, none are. Many families with multiple children will have affected and unaffected children. Although most individuals with ADPKD have a family history, scientists have also discovered that approximately 10 percent of the PKD patient community became affected through spontaneous mutation.

What are complications of PKD? (I have copied a section of the answer that addresses cardiovascular complications)
Cardiovascular complications include high blood pressure, cerebral aneurysms and mitral valve prolapse (MVP), a condition where the valve separating the top and the bottom of the left side of the heart does not close properly. Sometimes this causes blood to leak back to the top part of the heart. This is called regurgitation and can be heard as a heart murmur. MVP occurs in approximately 26% of the people who have ADPKD compared to 2%-3% of the general population. Symptoms that can be associated with MVP are palpitations, a feeling that the heart is running away or that there are extra beats in the heart, and chest pain that is not associated with exercise or exertion.


We have identified clinics across the U.S. that have staff knowledgeable about polycystic kidney disease and have experience treating PKD patients. Here is a link to a map of clinics listed by state. This is not a comprehensive list, if you do not see a clinic listed near you, we have provided information about how to find a nephrologist. https://www.pkdcure.org/research/clinics.
To learn more, visit pkdcure.org! If you have questions, please email education@pkdcure.org.

SherryReece94

Re: Teens and PKD

Postby SherryReece94 » Fri Jun 05, 2015 8:40 am

My mom had PKD and I was diagnosed 3 years ago and now my daughter has been diagnosed and she is 13 years old. She also has cyst on her overies that have ruptured. I feel so bad because I didn't know my mom had this and it was inherited until I already had my children. I am bummed knowing I passed this on. I am even more bummed because I have been in a lot of pain since December with hemorrhagic cyst and she comes to me yesterday and says mom I leaned back in my chair at school and I had this sudden pain and my heart sank I knew her cyst in her kidneys must have been leaned on or it popped. She has a great doctor but knowing there isn't a thing we can do kills me. Is there a camp or get together where the kids can meet other kids with PKD? :(

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Re: Teens and PKD

Postby Moderator » Thu Jun 11, 2015 9:14 am

PKD Youth Facebook page serves as a place for young adults and teens affected by PKD to share stories, make connections, ask questions and support each other.

This group is managed by PKD Foundation adult volunteers and staff. Please note that this group is not managed by medical professionals. If you have a specific medical concern, we advise you to consult with your physician or nephrologist.


https://www.facebook.com/groups/638682756228617/
To learn more, visit pkdcure.org! If you have questions, please email education@pkdcure.org.

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Joined: Thu May 14, 2015 3:06 am

Re: Teens and PKD

Postby addseo1115 » Sat Jun 13, 2015 3:37 am

I'm sorry drama in your page. I'm just tired from work. :cry: :oops:

Guest

Re: Teens and PKD

Postby Guest » Wed Sep 21, 2016 5:17 am

LeslieW wrote:Amy, I'm so glad you shared the story of your daughter and how she is dealing with PKD - it's really inspiring!! I loved to read that being part of the walk helped her to open up and talk to others about it ... and the fact that her teachers donated is wonderful!

In my family, my mother has PKD, and even has had severe liver cysts, but thankfully no dialysis yet at age 73. She had a sister who died of stroke & heart problems, likely because of PKD but never diagnosed. I know that one of my sisters also has PKD, and we think that my sister's son has it as well. I have not yet found out if I have it or not, but I do have a sonogram scheduled for tomorrow morning. Our youngest son is giving a PowerPoint presentation about PKD to his class today, and came up with a separate presentation that gives "The ABCs" of PKD. He even obtained little bracelets, etc. to hand out to his class. I'm proud of him.

Please stay in touch, Amy, about how your daughter is doing and how she's been able to get the word out about PKD. I'm proud of her as well!


All the best!

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