Baby Has Multicystic Dysplastic Kidney Disease

L.,
Hi there. I am sorry to hear of this news.
When my daughter was 9 months old, they figured out that she had bladder reflux. So I had to take her for the VCUG test. To be honest, this is a very difficult test to have to watch. My husband wouldn't even go with me to help in fear that he would punch one of the nurses. This test becomes more difficult (if possible) the older that the get. When my daughter turned 3, they made her do her final testing so that they could clear her, and trust me when I tell you that it is harder on you than it is on them. When they are pottie trained, it become really hard to have to hold your kid down so that they can do this test. They could not get her to go to the bathroom because she was laying on the table, and not on the toilet. I had them pouring water on her and everything just to try to get the solution out. It was the worst thing I have ever had to experience. I think that no matter how prepared you are for this test, you are never going to not cry. Lots of love to you and your family. God bless all of you and I hope this helps.

Dear L.,
I have done a little reading about this disease and if you do the same, I think you will realise that you cannot skip the tests and do nothing at all. This is a serious disease and you must keep up with medical followthrough to protect the health of your child. Renal ultrasound is a noninvasive procedure, by the way, completely painless and easy - I have polycystic kidney disease and have this done regularly. Your daughter will have ultrasounds regularly until age 5. They have to do other tests regularly to be sure the kidney doesn't turn malignant. The risks are low but you will want to be sure. I suggest having a good talk with your doctors and find out exactly what they recommend.
take care, S.

I am not familiar with this disease, but you SHOULD NOT skip the tests! You can't always tell from the outside how the inside of a person is doing. It is wonderful that your daughter appears to have no symptoms--hopefully, she will remain very healthy, and this disease will not affect her much. However, the doctors can determine what treatments need to be done to ensure her health--they are trained to do this--and you need to let them figure out what needs to be done by the results of the tests. I know you love your baby and want what is best for her, but she is so small now, she won't remember a catheter. Besides, I have had them, and they aren't that bad...I know none of us want to see our children hurting, but you know the saying, "prevention is the best medicine"--perhaps by doing these tests now, you can avoid more trauma in the future.

Yes. I can help you. I have a 5 year old little girl with MCPK Disease. We found out during our ultrasound when she was still in the womb. Even before they discovered it was a girl. We drove and flew all over the country trying to find out answers. I had ultrasounds done a Duke Hospital about every week or two weeks to check on the baby and her kidneys. At 2 weeks she had a rental scan and they found that one kidney only functioned at about 4%. It never shrunk and was causing delays in her physical motor skills due to her big belly so the doctors removed the right kidney when she was two. Out daughter is healthy and but we have been through more than any one ever prepared us for. If you have more questions please respond or provide a phone or e-mail.

My know 4 year old DD has The exact same condition, we found out about it like you after an ultrasound before her birth, The test that are ran after they are born are actually quite easy and the babies seem to have no real issue with them other then they have to be very still and that can sometimes make them mad, I scheduled them at nap time so she would be sleepy and it worked like a charm. My neice actually has the same thing and I can tell you both girls are very healthy and have had no problems form the condition the one good kidney picks up the slack and will grow larger then average to accomadate it. What they are looking for is if the urine is going back up into the kineys/bladder and this only happens in a small percent of children with this condition. Do the test intially(sp) we havent had them done again, my Ped has a little knowledge in this area and my DD Urologist has said that so long as we have no other chronic problems the we don't have to have her brought back in until she turns five, and so far we have had none, not a single bladder/urinary/kidney infections. You do need to watch things like soda intake when he is older and football will be out when he is older, any form of hard hitting contact sports where there is a chance of bruising the kidney can't be done, we do not allow any hitting of my DD's stomach at all ( no hitting is allowed but they are kids) if you have more Q's leave me a message! Things will be fine!

Hey, I had Multicystic Dysplastic kidney disease, I had my right kidney removed shortly after birth (that was 23 yrs ago). I am perfectly healthy (minus having Lupus but it is totally not related to the kidney disease just bad luck) and even with both of these things going on I live a pretty normal life. Do not stress, they will draw a lot of blood and run tests to make sure that the other kidney is doing alright. I would do all the tests because you want to play it safe. Make sure that while she is growing up you explain her situation to her so she is well informed about being careful durring sports, and what to look for pain wise that there is a kidney infection and DO NOT let a UTI go untreated. I actually have a 2 yr old daughter (so you can expect grand babies with no complications!) and she gave me my first kidney infection but because it was treated right away everything turned out just fine. If you ever have any questions or need someone to talk to about Multicystic Dysplastic kidney disease feel free to e-mail me at ____@____.com, good luck!!

Hi, my name is S.. My son was diagnosed with grade 3 bilateral uretheral reflux. He started having VCUG test and renal ultrasounds when he was 2 months old. I'm not gonna lie it was a very difficult thing for me to go through but he didn't really know what was going on. His last VCUG was done on him when he was 1 1/2 years old. This was probably the worst test on me because he cried so much, but if you ask him today what happened to him he doesn't remember a thing. I would say if the doctors think that these tests are necessary then I would do it. Your daughter will be fine and she will not remember it at all. Good luck and God Bless

We don't have experience with MCKD, but when our daughter was 1, and after having chronic UTIs, was diagnosed with grade 2.5 Urinary Reflux. We went up to Primary Childrens and saw a pediatric urologist. We underwent the ultrasounds and VCUGs yearly, which, when they are younger, they actually tolerate it better than when they're older. We did our best to distract her and had her "smile for the camera (x-ray)", and she was a trooper. The hardest part was that they filled her bladder thru the catheter and she hated the pressure. Another fun thing we did was put a sticker or washable tattoo on her belly to have something to distract her and show the radiology team and doctors. This worked well. After doing the VCUG for a few years doctors found that she wasn't growing out of this reflux, so at 3 1/2, when her chances of growing out of it were pretty slim, and her symptoms were worsening, even on constant preventative antibiotics. They did surgery and fixed the problem, and she hasn't had a UTI in over 4 years. We didn't have to do the VCUG anymore either after that.

I would go with your gut feelings about doing the tests. Do your research on her condition and try to arm yourself with knowledge and then you can make a more informed decision.