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PKD Discussion Forums - View topic - treatment

treatment

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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cindywill

treatment

Postby cindywill » Sun Jun 28, 2015 7:29 pm

My two week old baby was diagnosed with PKD1. He has been found to have high blood pressure. They are talking of treating him with a daily dosage of medication. Has any ever given medicine starting at such a young age?Were they weaned off it?
What were some experiences of kidney function when the baby is diagnosed at such an early age?

I am new at this and feel lost. Please share your experiences to ease the burden.

User avatar
Posts: 59
Joined: Fri Oct 11, 2013 11:38 am

Re: treatment

Postby Moderator » Tue Jun 30, 2015 4:47 pm

Thank you for your post. The PKD Foundation has a virtual Chapter for parents that have children with PKD. Our PKD Parents Chapter supports parents and can help you connect with others that can share their experiences with you. Learn more about the PKD Parents Chapter at

PKD Parents also has a Facebook group page if you would be interested in connecting with other parents through social media. You can join this group at
To learn more, visit pkdcure.org! If you have questions, please email education@pkdcure.org.

abooker25

Re: treatment

Postby abooker25 » Wed Sep 16, 2015 1:59 am

Hello Cindy,

I am 20 almost 21 years old and when my mother had me is when they diagnosed me with PKD. My mother didn't know she had it until she had me. I also had high blood pressure and still do, I've been taking medication for it since I born. I don't know off the top of my head, but there was another medication I took that I was only on for a couple years it was when I was very young. The blood pressure medication I am given is Lisinopril (10mg for the first 18 years and now on 5mg), and my doctor tells me that the reason I am on this medication is more of because it's a high bp med that also protects the kidneys. I hope this helps! It can be so scary, I'm sorry for you and your family to have to deal with this. Feel free to ask me as many questions as you would like! I will try to check back as much as I can!


Allison

Jean_George125

Re: treatment

Postby Jean_George125 » Thu Apr 27, 2017 6:50 am

I have gone through the dialysis and as a patient I always refer what my doctor tell me. I would recommend www dot davita dot in, they are no.1 Kidney treatment specialist in Bangalore.

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