3 year old daughter has PKD

[BP135]

Hi everyone

My 3 year old daughter had an ultrasound of her kidneys today and multiple cysts were found - I have to wait for the report to get more info.

I was prepared for her having PKD as it runs in my husbands family, he has it so both our children could have it. Also, when I was pregnant with her, her kidneys were glowing on the scan.

I got her kidneys scanned because she has severe eczema which we can't get under control this year, she's just had back to back infections and wakes up scratching and upset most nights. Her growth is also very slow because of it. The dermatologist has put her on an intense steroid and protopic plan for 9 weeks and said if it doesn't work (which it isn't) then she will go onto methotrexate to calm her immune system down which is overreacting (she also has multiple food allergies and asthma). The methotrexate can affect kidney/liver function so I wanted to check her kidneys before agreeing to the treatment.

I'm just wondering if anyone has a child with PKD, could you let me know what happens now? My husband only got diagnosed in 2019 so not much has happened due to covid, thankfully his kidney function is still really good and he has less cysts than our daughter by the looks of it.

Will she be under a specialist for this? I'm hoping she will be so they can discuss her eczema treatment options with the dermatologist. I keep reading that it is rare for children to get symptoms, and she isn't, but does that mean you only see the GP for check ups such as BP?

I know she may still have mild PKD, and it won't necessarily lead to kidney failure, it's just a shock, I wasn't expecting to see cysts yet. My husband seems to be lucky, the rest of his family have been much worse than him and all had dialysis/transplants. I'm just venting really because I'm pretty upset for her, she has such bad luck with her health.

Thanks for reading my story xx

[Herkidney]

as you know, PKD is hereditary. I inherited it from my mother who inherited it from her father. I passed it to at least one of my children ( the others have not been tested but are aware of the family history). The best thing you can do is ask your pediatrician for a referral to a pediatric nephrologist. Once under the care of a pediatric nephrologist, you will be able to get sound medical advise that is best suited for your child. Best wishes for a healthy future for your family!

[BP135 in reply to Herkidney]

Thank you for your reply x

[nonna70]

In case you don't know, there's a "parents of children with kidney disease" in the health unlocked listing.

[BP135 in reply to nonna70]

Thank you, I didn't realise. I'll have a look x