Multicystic Dysplastic Kidney

[ruralmar]

DD (now 6 mths) has MDK (diagnosed at 20 wk scan). Seems completely fine now but taking Trimethoprim daily and having 4 mthly scans. Would like to know of anyone else who has a child with this and how their consultant is monitoring it.

my lo,(9 weeks) has this condition, as well as the second kidney being abnornal! we found out about the mdk at the 20 week scan, but didn't find out the other till 2 days after birth! lo has had alot of test, some because of the second one being abnormal, these are what lo was having due to mdk, a scan at 2 days, a dsma (gamma camera kidney x ray) we are waiting for the results now, and a reflux test not had yet i think this is called vur? lo is also on Trimethoprim, and we have a apointment with the pead in a couple of weeks. do you know if your dd's mdk started shrinking yet?

the reflux test is called a VCUG.

dd now 13 months and all fine. The mdk has not started shrinking yet but hasn't grown with her which is good. Going to see specialist soon to discuss wether it should be removed via laproscopy if it doesn't shrink. How is your lo getting on?

Hi my 7m has bilateral MDK with duplex systems and reflux, a cystocoele too. All is well at the moment. Basically this means she has a normal part as well as a multicystic part on both sides. The MDK part on the right is shrinking and on the left so far no change. We are waiting to see what they want to do if anything as we seem to be keeping infections at bay so far. Luckily combined renal function is normal and they have remarked at how suprised they are about that. Usual scans done and a follow up USS recently to review which am waiting for a letter about. Seems to me that all we can do is wait and see and I guess they wont touch surgically unless cystic parts growing / infections despite abx, regarding the reflux. A little nervous to hear about laparoscopically removing the cystic part--why??

My 3 month old DD has a left kidney which functions perfectly normally but a right kidney which does not. It is duplex and the top part is MDK. She has had an ultrasound and a DMSA kidney scan and we have just seen a consultant to explain things - the first one that explained things in language that I (think!) I understood. She is taking her notes to a Dr's meeting next week to discuss whether to leave it and monitor the MDK (apparently they can shrink and go?)or whether to do key hole surgery to remove the MDK part of the kidney. From what I understood 'safetypin' (and I'm no doctor) they are considering removing the MDK part as that kidney is more prone to infection and once an infection occurs, there is a danger of damaging the good part of the kidney as well as the one that works perfectly well (DD on Trimethoprim as I think alot of these LO's are). As it's duplex, I believe that means the bottom part will continue to work as normal even withouth the top part (which doesn't work anyway) Hope that helps but remember I am just a Mummy with no medical experience and am only stating what I think I understood from DD's consultant!

My daughter has an MCUG or VCUG test coming up in a few weeks to test the function of her left kidney, she has a duplex kidney. I’m terrified it’s going to hurt her, has anyone got an experience with this test? Are they put to sleep or do they insert the catheter while they’re awake? She’s been on trimetheprne since she was born to prevent UTIs.
Would love to talk to someone who has experienced this test. She’s 3 months old.

My son had this test at 4 months old. They are not put to sleep, no. The insertion of the catheter was the worst part but the test was fine. Take someone with you for support if you can. Your daughter will be okay and have no memory of it.