1. Community
  2. Genito-urinary/Kidney
  3. Kidney Failure and CKD

Toddler been diagnosed with CKD3

Posted , 3 users are following.

jon_46085
jon_46085

Hi

Just joined the forum, and this is all very new to me. Forgive me if I misuse any words or terms.

My daughter is two and a half, and suffered kidney failure at birth. Cut a long story short, she has now been diagnosed with mild stage 3 CKD, and has a GFR of 51. She only had one kidney, as the other one was destroyed by a benign tunour, in utero. 

I was just wondering if anyone is going through anything similar, and could maybe give me some info about how they deal with it, and how it has affected their lives, or the lives of their kids?

It's all been a bit of a shock, and I'm just so worried about what the future may hold for her. 

Thanks very much. 

0 likes, 5 replies

5 Replies

  • helen54849
    helen54849 jon_46085

    Posted

    Hi,

    I am sorry you and your family are having to go through this especially with her being so young bless her, there is nothing worse that your child being poorly you just want to take it away and have it yourself.  I am not old but at least I have lived I am stage 5 end stage at the moment neither of my kidneys are any good and i'm on 11% I do have children though and have had them tested as my issue is supposed to be hereditory but they seem ok at the moment for that I am so glad as I wouldn't wish this on anyone.  Now she may stage at stage 3 with no issues and never get any worse, she will have regular check ups that will check her blood pressure and kidney function.  Its really important to have good BP as this helps maintain kidney function.  Children are very brave and deal with things exceptionally well, far better than adults sometimes.  My advice would be build a good relationship with her renal consultants and never be affraid to ask questions, its good to join forums for support but any medical questions should be addressed to qualified people, also there is no magic cure to help maintain kidney function so be wary of what you read, if there was a magic cure myself and so many others wouldnt be facing transplant if you look at it sensibly.  Please let us know how you get on and give her a great big hug from me biggrin

    • jon_46085
      jon_46085 helen54849

      Posted

      Thanks for the kind words. We're keeping our fingers crossed that this is a result of the birth trauma, and that as her kidney grows, the function will at least remain stable, if not slightly improve. 

      We are lucky to have an amazing medical team, and a very supportive family. I hope your condition improves, and that you are able to get the treatment to need. Thanks again for the reply. 

  • MrsO-UK_Surrey
    MrsO-UK_Surrey jon_46085

    Posted

    Jon, I'm so sorry to read about your little daughter and can imagine howworrying this must be for you and your partner.

    However, is it not possible that she would have slightly reduced kidney function anyway, having been born with just one kidney?  And is it perhaps not possible that her kidney function will remain stable at this level for very many years to come?  Apart from her eGFR reading, are her other blood tests normal, particularly, creatinine, urea, potassium?

    I was born with only one working kidney although that wasn't discovered until I was 12 years old following years of tests and investigations to try and discover why I was often suffering bouts of severe cystitis.  Of course they didn't have all the wonderful scanning equipment available  in those days (I am now 72).  When they discovered the problem lay with a kidney they removed it and I became fit and healthy. I don't think they had the eGFR available until quite recent years, and all the other blood tests and urine tests remained normal throughout my life until about 8 years ago when I received a call from the surgery to say that my kidney function had reduced and diagnosed it as Chronic Kidney Disease Stage 3.  At the time I contacted a Lab that do blood tests and was told that  it was quite normal for someone with one kidney to have a slightly reduced reading.

    I do hope your daughter continues to do well with stable kidney function but no doubt she will be well monitored by the experts.  

    • jon_46085
      jon_46085 MrsO-UK_Surrey

      Posted

      Thank you very much for the reply. She actually suffered total kidney failure when she was born, and very nearly died. So she has bounced back from that amazingly. 

      The one kidney she has unfortunately shows signs of dysplasia, but we are hopeful that as she grows, that perhaps her kidney will grow and stay healthy, at least enough to avoid any major treatments. 

      Thanks again, and I hope your condition does not affect you too much, and you are able to stay relatively healthy and happy!

    • MrsO-UK_Surrey
      MrsO-UK_Surrey jon_46085

      Posted

      I too hope that as she grows, her kidney will get stronger - it is often possible to confound the experts!  My fingers, toes and everything crossed for her that she has a good and healthy life ahead.  I bet she's gorgeous.  Many thanks for your kind wishes.
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.