Dilated kidneys - x posted

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Postby jesscc » Wed Jul 16, 2008 8:03 pm

Thank you so much for your concern and input. I would like to meet with a pediatric urologist, or any specialist really who could give me some more information. There's this real "wait and see" attitude, which is really hard, especially since I know things aren't improving. The dilation is now at about 8 and 8-9 in each kidney respectively. I live in a very small town, and they are not referring me to anyone, just to come back in 6 weeks, and that a pediatrician will need to monitor the baby right away. I suppose I could interpret this as positive...they aren't that worried? The Dr. doing the u/sounds is a maternal fetal medicine specialist with a good reputation. I am generally very proactive and informed about my / baby's healthcare, and in this situation I feel sort of left out in the cold.

What do you think? Any ideas about where to go from here, or just try and wait and see?

I am hoping the next step for you is really positive, and I'm glad you're Dr.'s are more positive and encouraging. It sounds possible that there may be good outcomes for both of us. I hope the rest of your pregnancy is progressing very well.
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Postby hoping4another » Thu Jul 17, 2008 1:51 pm

Hey Jesscc,
Do you think if you asked your doctor to refer you to a pedi urologist if you asked him? Even if you could get a phone consult, that would maybe help you get more answers. We had to drive 7 hours away to meet with a perinatologist and urologist, but I am glad that we did. How many weeks are you? From what I have read... in all of the trimesters 5-9mm is still considered to be "mild" dilatation.
A friend of mine from softball told me that this also happened to her little girl. Both of the kidneys were mild to moderately dilated and both ureters throughout her entire pregnancy. She had to be checked after birth and the kidneys were still dilated. She just had to follow up every 6 months. She just had a checkup last week and her kidneys are now normal and she will not have to follow up anymore ( she is almost a year and a half old). She is a completely normal little girl. I was glad that she shared that story with me.
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Postby jesscc » Thu Jul 17, 2008 8:47 pm

I am so glad to hear from both of you, and your input makes me feel better. I think meeting with a pedi urologist would be great. Who referred you - your regular pediatrician, OB or MFMS? I'm not sure who to ask...they all seem like "wait and see". I would be more than happy to travel, of course, as I would like to feel more prepared (especially since I have a 19 mo. old DS to care for at the same time). Do you know which Dr. I would ask for a referral? I will talk with my OB again when I see her next week.

I am glad to hear that the condition is easily managed after birth. I wonder what is causing the dilation though - and can it mean a serious condition that is more difficult to manage? These are the sorts of questions I need to ask someone....

Thanks again for your input. It is just tremendously helpful to have feedback from people who are going / have been through something like this. Your positivity is also very reassuring!

(My ticker doesn't work over here....I'm 28W 3 d today - baby due Oct.6)
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Postby hoping4another » Fri Jul 18, 2008 6:24 am

Hey Jesscc,
I bet that you could ask either of those docs for a referral... gosh, I am sure that it would help to put your mind at ease. And you would be able to have some questions answered.
My regular OB referred me to a perinatologist (basically a MFMS) then the perinatologist referred us to the pedi urologist.
As far as the dilatation it could be (from what I read) related to reflux or in response to the mother's hormones. There are also possibilities of an obstruction more near the kidneys... but from what I have read... the dilatation is usually more severe with that. Alot of times, they don't know what is causing the dilatation until after the baby is born.
It sounds like our baby will have to have some tests to see what is causing the dilatation, but right now the doc is speculating that it could be reflux, or that there could be an obstruction where the bladder meets the ureter.
I am so thankful also that we have these boards to be able to communicate with others that are going through something similar.
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Postby jesscc » Fri Jul 18, 2008 10:34 am

No kidding on being thankful. It is really hard to talk with people about something like this unless they have gone through or are going through something similar. This really helps.

My MFMS hasn't referred me to anyone. I wonder if this is because she isn't that concerned or why? I wish I could ask, but you can't just call and talk with them, it has to be through an OB who already sent me there....I'll ask my OB (who is pretty casual about everything). I would really like her to let me see someone else!

I really really hope it's the hormones! When is your next appointment?
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Postby jesscc » Fri Jul 18, 2008 10:34 am

One more thing - do you know what causes the reflux, and what they do about it if it is reflux?
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Postby hoping4another » Fri Jul 18, 2008 12:31 pm

Reflux can happen when something doesn't develop quite right with the babies urinary tract. I guess that it happens more often with boys than girls before birth. (although my friend's baby is a girl) It happens more often with girls after they turn two. The good news is that... our urologist said that 85-90% of babies with reflux will outgrow it before they turn two. Others may need to have surgery, but it is something that can be corrected. Our doctor told us that if it is reflux, that they may have to put our baby on antibiotics for a year to prevent any UTI's from occuring.
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Postby jesscc » Sun Jul 20, 2008 9:38 am

Oh, thats interesting. They must test that with a dye after the baby is born. Do you know what else could be causing the dilation? My Dr. says blockage of course (but she doesn't think there is one), you mentioned the hormones, there's the reflux, can it be kidney disease? That scares me...sorry to ask so many questions. Hopefully they'll send me for a referral so I can bombard someone else lol! I have looked on various websites, but most of the information is for boys.
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Postby hoping4another » Mon Jul 21, 2008 6:35 am

From what I read and understand... they cannot check for kidney disease until after the baby is born. There are some signs that show up on an u/s.. like cysts on the kidneys that are more of a predictor of that.
It doesn't sound like there is a correlation between kidney disease and dilation of the kidneys in utero. If you want, you can google "Antenatal hydronephrosis" and that brings up tons of information. That has been helpful for me... I have also had to research that and the dilated ureter..
Hope that helps!
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Postby jesscc » Mon Jul 21, 2008 9:04 am

You are a wealth of info and great comfort to me! They haven't found anything that looks like cysts, and I didn't know that about the dilation not appearing related. Thank you thank you. I am going to do some more research.
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Postby hoping4another » Mon Jul 21, 2008 2:47 pm

Oh, not a problem. All I did when I found out about our baby was research this kind of stuff. We thought that we were dealing with the Posterior Urethral Valve and that was an awful thing to look up.... made me very scared... the more that I looked into the baby's condition, it didn't seem to match up to PUV (Thank God)!!!
It is just so hard to deal with something without knowing someone else that has gone through it. Unfortunately, we are no strangers to having something go wrong with our child. Our first son was born and shortly after started to have seizures. The doctors could never figure out why and thank goodness he outgrew them and is a smart and happy little boy. I just learned from that experience. I believe if I learn as much information as I possibly can.... that I can be the best advocate for our children.
BTW, I have rescheduled my u/s for this Friday. (I originally had it for next Tues) I had my long appt, so I wanted to see if I could get the u/s in too. I will be sure to let you know what we find out on this one.
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Postby jesscc » Mon Jul 21, 2008 6:48 pm

Good luck at your appointment! You'll have to update us right away.

You know, my mother says that when I was an infant, I started to have seizures shortly after birth. Of course, it frightened her terribly, and I ended up in the hospital for a week. They never did find anything wrong - her Dr. said it could possibly have been my calcium levels finally kicking in (this was a long time ago...). Anyway, I've never had any problems of any kind like this. I'm glad to hear your LO is just fine.

My Dr.s haven't even given me the proper terminology for what's happening with the kidneys. Just, "dilated" and "blockage". Not so helpful. Thank you for providing it - it has made it a lot more possible to research.
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Postby hoping4another » Wed Jul 23, 2008 6:10 am

That is interesting about the seizures. Thank goodness it wasn't a lifelong problem. My son had them until he was about 5 months old and hasn't had one since (He is almost 4). They were very scary and he had to be hospitalized several times because of them. Thank goodness all is well now.
I am getting a little nervous for my u/s on Friday. I am just hoping that things are better and not worse. I will be sure to post as soon as I find out.
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Postby jesscc » Wed Jul 23, 2008 12:06 pm

I'm glad your little guy hasn't had any more trouble with the seizures!
I know exactly what you mean about hoping things aren't worse. It's exactly how I feel about the Dr. appt.s now. Good luck, I'll be thinking of you.

Baby #2 due Oct. 6 2008
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