Need happy thoughts and any input on kidney problems...

odusgolp
odusgolp Posts: 10,477 Member
edited October 2024 in Chit-Chat
My son (5) has been having issues and had an ultrasound this afternoon that did not go well. Thus far we've gathered he has Vesicoureteral Reflux (VUR) and Renal Nephrosis. They said he has a bit of scarring already and his right kidney is not currently fully functioning and appears to be blocked. That damage has led to Nephrosis which is a disease where his kidneys are filtering out proteins and he's retaining fluids, etc. (We've noticed this in his eyes since the last fall).

Long story short, the Urologist locally wanted to admit him. But we paged our pediatrician who agreed that we could wait to get him into Children's Hospital so he can see a pediatric specialist instead. The local doctor has very limited experience with children and we just weren't comfortable with him... Alas, we took him home and we are expecting a call from Children's in the morning to see when we go there.

So, if anyone has a clue what the **** any of the above actually means or has experience with such a thing, I'd obviously like your input or story.

Everyone else, if you could send up some happy thoughts for my little three footer, I would absolutely appreciate it :smooched:

Replies

  • CaptainGordo
    CaptainGordo Posts: 4,437 Member
    Everyone else, if you could send up some happy thoughts for my little three footer, I would absolutely appreciate it :smooched:
    Done, and will continue doing, kiddo.
  • Contrarian
    Contrarian Posts: 8,138 Member
    Everyone else, if you could send up some happy thoughts for my little three footer, I would absolutely appreciate it :smooched:
    Done, and will continue doing, kiddo.

    Me too. xo
  • taso42
    taso42 Posts: 8,980 Member
    This is the first thing you've ever posted that has upset me. :cry: Hoping for the best outcome.
  • odusgolp
    odusgolp Posts: 10,477 Member
    Thanks guys :) Two of my favorite blue baldies!
  • sandrinamsilva
    sandrinamsilva Posts: 651 Member
    Sending HAPPY THOUGHTS to you and your little 3 footer.
  • odusgolp
    odusgolp Posts: 10,477 Member
    This is the first thing you've ever posted that has upset me. :cry: Hoping for the best outcome.

    Make that three favorite baldies! All in one place... And thanks, T. I try not to be too serious, but am so worried for my little man. He's an awesome trooper and never complains. Kids are amazing.
  • emmelean
    emmelean Posts: 7 Member
    That is so sad! I feel your pain. I have hereditary nephritis and have passed the gene to both of my children. This disease (also known as Alports Syndrome) progresses faster in males. It is hard for me and my husband to know that our son will be facing renal failure in his late teens/early twenties. We just take it one day at a time. You need to start taking your son to a pediatric nephrologist to see how much his kidneys are functioning right now. Ask him/her if an ACE inhibitors (blood pressure medication) can help slow the progression of the renal failure. Also ask about his diet. Some kidney diseases might benefit from a renal diet (lower protein, lower potassium, and/or lower phosphorous). I hope you get some good answers from the specialist soon. Good luck to you and your family.
  • CaWaterBug8
    CaWaterBug8 Posts: 1,040 Member
    This is the first thing you've ever posted that has upset me. :cry: Hoping for the best outcome.

    This is the first thing you have ever posted to make me tear (and not from laughter)! :sad:
    I am sending many thoughts, prayers, good vibes, the whole shebang!!! :flowerforyou: :smooched: <---Those are good flowers btw
  • CaptainGordo
    CaptainGordo Posts: 4,437 Member
    I try not to be too serious, but am so worried for my little man. He's an awesome trooper and never complains. Kids are amazing.
    Your positive attitude (as tough as it is to maintain) and sense of humor, along with his trooper-ness will carry you both though this!
  • Thomasm198
    Thomasm198 Posts: 3,189 Member

    Everyone else, if you could send up some happy thoughts for my little three footer, I would absolutely appreciate it :smooched:
    Hope he's ok. :flowerforyou:

    And as CAWaterbug sad: these are the nice type of flowers.
  • ShapeUpSidney
    ShapeUpSidney Posts: 1,092 Member
    It may comfort you to know that VUR tends to decrease in males as they age, since the ureter length increases. At least that's something.

    As for nephrotic syndrome and proteinuria...I envision quite a bit of diagnostics in your future. Baby steps for now. At least you've identified the problem and he is getting care. You don't have a differential diagnosis yet, so there's still plenty of room for HOPE
  • kjtemp51
    kjtemp51 Posts: 1
    From what you said about the nephritis ask the doctor if it could be minimal change disease? My husband has it but it mostly occurs in children under the age of 10. They can treat it with steroids and it usually has a good outcome! Wishing you and your little three footer the best and hoping he has a good outcome! Wishing and sending him happy thoughts! :happy:
  • NA_Willie
    NA_Willie Posts: 340 Member
    I had nephrotic syndrome when I was 2.

    I don't remember it, but I'm sure it was no fun.

    I take that back, I remember the kidney biopsy.

    FYI - My weiner is 100% fine now.
  • kericson
    kericson Posts: 14 Member
    Hi there. My son (now ten) was born with very similar problems. Hydronephrosis, VUR, duplicated collecting systems, and a barely functioning right kidney. Long road but very long story short he's just fine now. Message me if you want to talk I'll be happy to help any way I can. And of course I'll be sending lots of happy thoughts your way...I know how hard this stuff is! Take care.
  • odusgolp
    odusgolp Posts: 10,477 Member
    I had nephrotic syndrome when I was 2.

    I don't remember it, but I'm sure it was no fun.

    I take that back, I remember the kidney biopsy.

    FYI - My weiner is 100% fine now.

    *LMAO* Thanks Willie :)
  • NA_Willie
    NA_Willie Posts: 340 Member
    I had nephrotic syndrome when I was 2.

    I don't remember it, but I'm sure it was no fun.

    I take that back, I remember the kidney biopsy.

    FYI - My weiner is 100% fine now.

    *LMAO* Thanks Willie :)
    And that was in 82, so your kid has 30 years of mediciene on his side.

    He'll be fine.
  • thor1god1of1awesome
    thor1god1of1awesome Posts: 481 Member
    Sending happy thoughts that your son will be OK. Im sorry for what.your son and you and your family is going through.
  • odusgolp
    odusgolp Posts: 10,477 Member
    Thanks everyone. For now, I'm just going to wait to get a second look at things and a confirmed diagnosis. But I'll look at this thread to read back your suggestions when I understand more of what we're facing!!
  • TDGee
    TDGee Posts: 2,209 Member
    Try not to worry too much now, there will be plenty of time to stress and worry once you have more information. Sending love and happy thoughts your way. Hang in there, the not knowing is the worst part.
  • WarriorMom2012
    WarriorMom2012 Posts: 621 Member
    I'm so sorry you have to go through this. I know as a mother, you would take this disease x 10000000 just so he didn't have a twinge of pain. My heart goes out to you and your family.

    I will definately keep you in my thoughts and send all the happy vibes I have in me to you!!
  • stephabef
    stephabef Posts: 936 Member
    Glad you went with your gut and are waiting for a hospital that specializes in pediatrics. You're in my thoughts!! <3
  • MEMA5
    MEMA5 Posts: 93 Member
    HI I DON'T KNOW WHAT STATE YOU LIVE IN BUT YOU CAN GET SOME INFORMATION FROM THE NATIONAL KIDNEY FOUNDATION. THEY WOULD KNOW WHERE TO DIRECT YOU IN YOUR STATE FOR A QUALIFIED PEDIATRIC NEPHROLOGIST.ALSO GO ON RENAL WEB.COM FOR MORE INFORMATION,,GOOD LUCK TO YOUR BABY,,PEACE ISSY
  • cabaray
    cabaray Posts: 971 Member
    You are taking the right steps by taking him to a pediatric specialist. I'm sending prayers and hugs. Having a sick child and being uncertain about things is tough!
  • HollieDoodles
    HollieDoodles Posts: 678 Member
    Glad you went with your gut and are waiting for a hospital that specializes in pediatrics. You're in my thoughts!! <3

    I agree. My son has kidney stones. I know it's not even close to the same issue, but I still had to deal with a kidney specialist. I'm very happy that I went with the pediatric specialist. As I understand it, their little bodies are compacted there compared to when they grow up. I was glad that his doctor knew what he was looking for.
    Hang in there sweetie. You're all in my prayers :flowerforyou:
  • takehimaway
    takehimaway Posts: 499 Member
    Praying for you!
  • Cait_Sidhe
    Cait_Sidhe Posts: 3,150 Member
    I really have nothing to add of any importance. My knowledge of kidney problems is limited to dogs and cats. But I just wanted to send my happy thoughts and hopes that everything turns out okay.
This discussion has been closed.

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