Anyone have advice on how to deal with Multicystic Kidney and pyelectasis (sp)

Re: Anyone have advice on how to deal with Multicystic Kidney and pyelectasis (sp)

• laf82005

  September 2009

  My 6-week old son has a multicystic kidney. It was diagnosed at my 18 week u/s. After it was diagnosed, we had follow-up u/s every 4 weeks to make sure that the other, healthy kidney looked good, ie. no cysts, & to check amniotic fluid levels to be sure that his lungs were developing (and that the healthy kidney was likely functioning well). We also were referred to a pediatric urologist, who our son now sees. The doctors were all reassuring that on the scale of birth defects,  a multicystic kidney is a mild one as it is most likely not going to affect his life beyond just having to take some extra precautions to not injure the one good kidney.

  I know that it is scary just to wait things out, the second half of my pregnancy was really stressful because I just couldn't help but worry about my LO. He had another u/s 24 hours after birth, and at 1 month. Then, they'll switch to every 3 months then 6 months then yearly. We have to decide whether to do a test for reflux on the healthy kidney, which requires cathetherization.  Thankfully, his healthy kidney is working great. I don't even think about it daily now, which is a big change.

  I wish you the best--feel free to ask me any more questions. I know there are a few moms on here with this issue.

   

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• Deepoet member

  September 2009

  Thank you so much! I feel a little more reassured.

  The doctors didn't tell me exactly what was wrong until my 34 week appointment after my 2nd follow-up ultrasound so it made things worse. I am just waiting now for the information on the Urologist so that we can meet with him to discuss everything.

   Its very nice to hear from someone who has a child with this issue.

  I know from family kidney issues that living with 1 kidney will be fine I guess he will never be a football player...

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• duchess0727

  September 2009

  They thought my daughter might have one multicystic kidney and the neonatalogist emphasized that one healthy kidney is all that you need so we shouldn't get ourselves worked up as long as one kidney is functioning fine.  Thankfully this never materialized.  I do have a really great Pediatric Urologist in NJ if you need a recommendation.  My son went to Dr. Michael Fleisher and I can't say enough great things about him and the other doctor he works with. 

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• slacy

  September 2009

  laf82005:

  My 6-week old son has a multicystic kidney. It was diagnosed at my 18 week u/s. After it was diagnosed, we had follow-up u/s every 4 weeks to make sure that the other, healthy kidney looked good, ie. no cysts, & to check amniotic fluid levels to be sure that his lungs were developing (and that the healthy kidney was likely functioning well). We also were referred to a pediatric urologist, who our son now sees. The doctors were all reassuring that on the scale of birth defects,  a multicystic kidney is a mild one as it is most likely not going to affect his life beyond just having to take some extra precautions to not injure the one good kidney.

   

  This.  My son is 3.5 weeks old and was dx with a Multicystic Kidney (left) at 22wm gestation.  We had to go to the children's hospital and get some tests done within a couple days of him being born (renal u/s and VCUG).  The VCUG tests for vesicoureteral reflux from the bladder to the kidneys - which I guess is one of the most common issues with babies with MCDK.  They thought DS's affected kidney had disappeared - I went for a follow up appt at 34w and they couldn't find it.  When we had the renal u/s at 3 days old - they did see it.  We go on Monday for a Nuclear study, which will tell us how much function, if any, the bad one has and how well the right one is working.  (Although for the amount of urine this little guy produces - I'd say it's working just fine!)  Then we'll meet with the pediatric urologist afterwards and I'll probably know more about future appointments/testing.

  I was VERY nervous and a little heartbroken at first after the dx.  You want your LO to be perfect!  But, my perinatologists put it in perspective.  There are TONS and TONS of people out there with only one kidney and they don't even know it!

  Best wishes!

  Sara

  Proud Mommy to Elliott 7.24.07 & Oliver 9.1.09 Our Blog
  
  
  
  

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• sugarbabyluv member

  September 2009

  Hi, my baby has a left multicystic kidney and his right kidney looks normal on the ultrasound.  I'm so scared but trying my best to stay postive.  The peritologist I went to recommeded Dr. Fleisher and I have already called his office and spoke to a very nice nurse who took the time to speak to me about my case.  She said to call back about a month before my son is born to set up an appt, bring in his films and reports from the ultrasounds, and to enjoy the rest of my pregnancy... it's very hard, I'm just so worried.    I just wanted to say that it's encouraging to hear someone from my area recommend him as well.  I just had a sigh of relief.  All the research I'm doing is saying he can live a perfectly normal life with one kidney and I'm holding on to that.  I hope his good kidney stays good and the other will shrink...it hasn't so far, and I'm scheduled for another ultrasound at 34 weeks which isn't for another 2 months.

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