PKD diagnosed at 6 years of age

[Niamh61]

Hi 

I am posting on behalf of my daughter. Her father has PKD and numerous small cysts were spotted on her kidneys when she had a ultra sound aged 6. Cysts were described as small. She has had one kidney infection. I am wondering what the prognosis is for her. I tell her cysts may never grow as this is what I understood but would like confirmation of this please if possible. I encourage good diet and healthy life style, ( she is 14 now). Is it possible she will go through life symptom free?

[atropa]

Hi Niamh61,

has your daughter been diagnosed with ADPKD (autosomal dominant PKD)?  There is also ARPKD, and a small number of cysts in the kidneys can be normal.

You can find more information on these sites:

pkdcharity.org.uk/

pkdcure.org/learn/adpkd

kidney.org/atoz/content/her...

[Niamh61 in reply to atropa]

Hi

Yes her father and grand father also have PKD Thanks for links

[Twinkle30]

Hi there,

You mention your daughter is now 14, have you been advised about her not using the contraceptive pill? 

Although we don't know if our daughter has inherited Pkd and want to leave the decision of being tested to her, we have been advised and researched how we can help her keep the best life style. The female hormones can fuel cyst growth hence the consultant advising us she shouldn't go on the pill when she gets to that stage in life. 

Also another monitoring element we discovered at a PKD charity information day was checking their blood pressure regularly. This can detect a number of things.

If you get an opportunity to go to a PKD charity information day, they are well worth a visit.😊

[Niamh61 in reply to Twinkle30]

Thank you for this information. It has not been discussed with her. 

[Zhiwei]

Really hard to say if they will grow fast or not. But healthy life style does help. We found cysts on the kidney of my daughter as well. She is just five. We have to keep monitoring. Hope technology advancement is the next 20 years will help your and my daughter out.

[Niamh61]

Yes I have great hopes for gee editing.

[Niamh61 in reply to Niamh61]

Should say gene editing!!

[Zhiwei in reply to Niamh61]

UK is trying to do this now. Should be done when mothers are just pregnant. If not editing, the gene should be checked as early as possible. I believe this will come one day.