3 year old daughter with PKD

[BP135]

Hi everyone, I've just posted this on the Kidney disease page too so apologies if you're reading it twice!

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

[TCM75]

my son is also 3 and has ADPKD. You will definitely want to see a pediatric nephrologist as she will need regular bloodwork and ultrasounds. Blood pressure is one thing that will need monitored from here on out. While a lot of drs say it’s rare for children to have symptoms, I am part of a parents group on FB and there are a lot of kids out there with symptoms, including high BP and back pain as well as UTIs.

Hope this helps.

[BP135 in reply to TCM75]

Thank you for your reply. I hope your son is well x

[RonZone]

I have PKD. I'm 69 and just starting dialysis. I definitely agree with TCM75, get a pediatric neph on board, so they can help you speak with the other doctors, or if nothing else, tell you what to tell the other docs to help preserve your child's kidney's for future use. I also had severe asthma when i was a child. Not sure if the medicines I took for that harmed my kidneys or not. Don't even know what the medicine was other than it was orange, tasted awful, and burned all the way down when i took it. No one knew about preserving kidney functions back then, but I'm pretty sure I had cysts even as a child as I did have some flank pain occasionally. It's wonderful that you are researching all available sources of information. NOTE: this site is not geared to offer medical advice, but you can get ideas from it to talk with your child's nephrologist about. And do note that all nephrologists are not the same. Some focus almost entirely on the dialysis world and process in which they live 90 percent of their time and it's hard to get info out of them concerning preserving kidney function. You will also, once you find a great nephrologist for your child, look into finding a really good dietitian, once you know what your child's percent of kidney function is (called eGFR), to guide you on what diet changes might help preserve kidney function over the years to limit sodium, potassium, and phosphorus, IF and WHEN the kidney function numbers from lab test call for that, though it could be years from now. Your husband should be talking to a renal dietitian as well to keep up with the latest research on kidney preservation techniques. We hope to see your husband on these forum's some day in the future.

[BP135 in reply to RonZone]

hi thank you for that detailed response. My daughter already sees a dietician regularly as her growth and weight gain is so slow due to her multiple food allergies. Shes allergic to milk, eggs, soya, nuts, kiwi and sesame. We are also waiting for her to have a coeliac disease test. So my mind is feeling a little overloaded at the moment. Hopefully once I'm over the initial shock I'll be able to take more on board.

Hopefully the GP will refer her to a nephrologist. Although shes under an amazing hospital where she sees her dermatologist, allergy dr and dietician so hopefully we can speak to a specialist there and the team can co ordinate her care. Unfortunately its not that local to us so its a whole day to see them which is tricky with my work. Thats not a rant for today though!!

[RonZone in reply to BP135]

Hey, I totally understand. All this can be very time consuming and mind consuming. Do remember to take care of yourself! That will be very important as you deal with this over the months and years. When they give instructions on an airplane in case of loss of cabin pressure, they say a parent needs to put the oxygen mask on themselves first, so they are alert and alive to take care of their kids! So make sure you have/get a good support system in place so you can have some "me" time. Ask folks to help that you might not normally ask if necessary. And you will always find support here as well, just not as tangible as a real hug! So keep posting. It does help.

[Jane_the_Pain in reply to BP135]

Please see my note below. I forgot to mention her allergies to dairy products which will start her eczema back up again. Good luck in all your efforts 👌

[Jane_the_Pain]

My Daughter has no kidney problems that I'm aware of and she's now 36 years old.She was born with clear skin which soon changed to eczema, especially in the soft skin at her joints.

Hydrocortisone cream was prescribed, (the worse cream ever invented), which made it spread all over her body, absolutely every where!

She was in so much pain and her skin would crack and bleed. I could not bare to see her like that. So I took her to an alternative treatment centre, as loads of questions to find out family history, lifestyle etc., they administered a tiny seaweed tablet under her tongue that was left there to melt.

No word of a lie, the very next day the itching stopped and within a couple of weeks her skin was clean and pure again. 🙏

As I stated in the beginning, she's now 36 years old and has only has 1 severe flare up on her face around 2006 which was cured by a local Chinese medicine centre.

It doesn't work for everyone, but it worked for her. Whatever you choose, please stay clear of steroid injections and creams.

Best of luck to your little Angel. 👋