My 3 year old has 15mm staghorn stone

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Hello my 3 year old son has a 15mm staghorn stone. Laser was successful in eradicating a second 8mm stone however this larger one is wedged in a lower Medulla. He has had a stent in for approx 5 months which has been changed every 6-8 weeks as he has treatment. We are now looking at having to have an external puncture that pierces the kidney to get a more direct shot with the laser. My question is has anyone experienced this before. He is so young and despite being completely confident in our specialist the risks really scare me. Any advice/thoughts appreciated.

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3 Replies

  • Posted

    Hi Marie,

    I have just joined this forum to see if anyone is in a similar situation to me.  I was so shocked to read your post.  3 year old!  The pain and discomfort he must be in must be unbearable.  The reason i know this is because i have a 19 year daughter who is suffering with a similar situation.  When she was 17 she started to get water infections. A year ago she was rushed into hospital where it was eventually discovered she had a staghorn calculi in her right kidney.  She had keyhole surgery in December last year to remove and a stent placed.  She was in agony over Christmas and had to pull out of uni due to her falling ao far behind in her work.  The stent caused her so much pain and eventually fell out on its own.  Her kidney again is full of stones and she has just recieved a second blasting last week.  This weekend i had to take her to hospital as she was in severe pain.  She is home again now but very unwell.  She is very under weight and constantly feels sick.  She has even been told by the hospital that the NHS is on its knees and they are doing their best to give her treatment.  What concerns me is why at 19, and 3 are they getting kidney stones?  Sorry i have not been any help, and i hope both our children get these dreadful stones out of them so they can live a normal life.

     

    • Posted

      Yes it is very hard seeing your children (no matter their age) go through something like this. Being three it is impossible to properly explain what is happening. The stent has been the worst part for us. He has had one in continually for months and only now that he is on a break for a few weeks have I see. Just how much it was effecting him. All his tests as to why he got them came back clear so we don't know why in the first place. Our problem is the stone is 15mm and wedged right down the bottom and he is so little ??

    • Posted

      I am in Wester Australia though and am lucky that we have an amazing health system. The care he is receiving is personal and we have the same specialist we see each time.

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