I've read some previous threads about this, but would love more specific advice on what to watch out for.
My son is 2 months old and had fluid in his kidneys in utero. Last week an ultrasound confirmed that the fluid is still there - hydronephrosis. I had this condition and kidney reflux as a child and know first hand how horrible the infections can be. But, as a 30 year old, I also still have vivid memories of the painful tests that were performed as a child.
I know most of you probably aren't specialists in the field, but I'm curious as to what you've heard or experiences with your children.
Does anyone know if a little fluid on the kidneys is normal? I'm wondering if they're freaking out for nothing. Do we have to be worried since he hasn't even had an infection yet?
Do they have to do the VCUG since the U/S confirmed the hydronephrosis? Won't they just put him on prophylactic antibiotics anyway? I'd rather just skip the nasty test, right?
Also, do I need to gear up to fight and possibly walk out if they tell me that retraction is necessary? Is it EVER necessary?
a very worried Mama
My DS was in a similar situation---he developed a UTI at 5 weeks of age. He was hospitalized and they did a VCUG and ultrasound---the VCUG was negative but the ultrasound showed mild hydronephrosis. The radiologist said the great majority of the time, hydronephrosis resolves without incident. In my DS' case it did, and he never got another UTI.
DS was not retracted for the procedure, but I don't regret for a minute having it done. I do have another child who has kidney reflux, and as you know, these things can be hereditary. IMHO it is ALWAYS better to be safe than sorry and with your family history I would proceed with the test. Yes, it's a pretty yucky test but it is over fairly quickly and in the grand scheme of things, a few minutes of discomfort to protect your child's kidneys is a small price to pay.
Good luck to you, and I hope everything turns out well (((((HUGS))))
I don't have any advice on the hydronephrosis, but I just wanted to say there is NO reason to EVER retract. EVER. Not for catheterization, not to "check and see how tight it is", nothing. Don't let them. If he has the VCUG done and needs to be cathed, tell the tech if they can't cath him without retracting they better find someone who can. Poor lil punkin, I hope this all resolves on its own without needing any invasive tests!
PM mamaverdi. She's here in Houston and her ds has some kidney issues. She can tell you the best drs. here and what to watch for.
Yikes! Except we discovered our son's hydronephrosis when he was three weeks old and his diaper was full of blood. ! Disastrous tip to the emergency (too long to even describe) and a week in the paediatric ward started me on my journey to figuring out what the heck hydronephrosis was. I’m no expert, but I’ve done lots of reading on it and just happened to get my DS into a nearby major urban city children’s hospital because I knew a researcher there who is a -get this- nephrologist! She was great and was able to bypass the 2 month waiting list to see another nephrologist: Dr. Harvey. She’s a well respected specialist in this condition. Check her out at Sick Kids hospital in Toronto. www.sickkids.on.ca
He had all the tests. VCUG showed that it was not reflux (which is the major cause of hydronephrosis and can only be diagnosed with the VCUG) Next step was a nuclear exam... not pleasant. Big radioactive sticker on the vial they are going to inject into your baby. Technicians saw a blockage, thought it might be a tumour, but further tests showed it was just an immaturity in the uritor. (Is that how you spell it??)
As for retraction, it was never an issue. We had wonderful nurses who inserted both his catheter and his intravenous lines without a peep from him. No kidding. He even slept through the nuclear scan. The VCUG was a little more traumatic since they had to wait for him to pee so they could trace the dye. Nurse him right before the test and it should speed things up. Our son goes back every few months for a follow up exam (ultrasound and urine testing) but so far so good!
His treatment was intravenous antibiotics while in the hospital to treat the UTI, Kidney infection and sepsis. Upon discharge he was placed on a prophylactic course of antibiotics that were changed several times due to an allergic reaction. I know, I know... ridiculous. : Anyways, once we had him in to see Dr. Harvey we were able to convince her to take him off the antibiotics at about 5 months of age. She wanted him on them until he was toilet trained, but I was convinced that would ruin him and had a good discussion with her about the risk/ benefit ratio of antibiotics versus a wait and see approach. That said, I did agree that if he ever got another infection I would keep him on the antibiotics since the damage to his one kidney was significant.
1. Get him into see a Nephrologist. Your location says Houston. They must have one there. These are Kidney specialists who specialise in hydronephrosis.
2. Go to a naturopath/homeopath. We had our son treated by a great homeopath and I swear he is the reason there has not even been an inkling of an infection since that horrific start to his life.
3. Be sure your son is on some sort of pro biotic to counteract the antibiotics. Any health food store can sell you an infant dosage.
4. Don’t vaccinate! We were on the fence about vaccines and had delayed them because of his condition, but when he finally had the first set at 5 months he was a mess. I wish I had known about MDC back then!! Again, thank goodness for homeopathy! At the very least delay them until he is totally well.
That's my advice, for what it is worth.
I went through all that when my youngest was an infant.
I won't scare you, but I'll offer this. Stand your ground. MAKE them do some legwork and guess work. I found that they just tried to process him as fast as they could and didn't want to pause to actually think of him as a person.
I was his only voice and I took it seriously. They had to explain and prove to me anything and everything they felt might be necessary. At one point they wanted to do a spinal tap to "rule out meningitis" HE HAD NO SYMTOMS!!! of meningitis. I went to the wall on that one. As far as retracting....that was an absolute no and they knew it, they never even bothered to tell me twice.
Good luck to him (and you mommy)
Everything cleared up with my son by the time he was one and he is a happy healthy intact little guy now!
According to Frank, we here in Houston live in utopia WRT foreskins and testing and urology.
I will recommend to you my son's urologist if you want. He's a not an intactivist, but he just plain doesn't give a durn if the foreskin is there or not. I've never seen him mess with it. Now I wasn't in the OR with them, but there is never any redness, swelling, irritation, etc.
Plus, the urologist I have is just an upfront guy. And he's the one of the saying I'm always quoting...he told me after I was upset with this doc for giving my kid a shot of antibiotic: "You don't have to convince anyone of anything. You just tell them what they CAN do and what they CAN'T do."
That's how I handle the people WRT my son's anatomy and testing and care. I think the problem is a lot of people get caught up in wanting other people to be happy your kid has a foreskin. It isn't going to be that way. But they shouldn't have an opinion about it that they tell you one way or the other. AND they should be able to do their job without interfering with your son's anatomy.
What you need to know is that most of the tests don't even involve actually touching the penis. And I've never heard my doc say my son's 11 infections have anything to do with his foreskin. (Mind you he's only 23 months old.)
Look, Houston is full of people from all over, including mostly Mexico. There are lots of people here that have NO problem with intact pensises. And I've never had an incident with anyone except a stupid well-baby check by a resident at a really dumb doctor's office that had a problem with the foreskin.
What you need to know is to have them flange the foreskin so they can visualize the hole (meatus), and then insert the catheter.
The people at TCH here are generally very well-mannered and kind. And if you come AT them you will have a lot more trouble than if you gently guide them for what YOU want.
Tests they ran 30 years ago may be different from what they do today. I'm going for a VCUG tomorrow for myself, so maybe I can say better after that.
Water on the kidney is not normal; however, it's relatively common, and it can be benign. It can also be serious and need to be treated.
They will not necessarily put him on prophylactic antibiotics. It depends on his condition. I would want to avoid the PAs if possible, so I would want to get a diagnosis. If he happens to have something that is correctable, better to find out now and set a plan for correcting it or waiting and seeing.
VCUG is necessary for identifying different things: reflux, obstructions, disconnections, fistulas. Early identification is the key to preserving kidney function.
ETA: I'm in a bit of pain tonight, so hopefully this is neither confusing nor sounds mean.
You need to be an advocate for your son. But you did that for your breech birth, and you can do it for his urological health as well.
Feel free to PM me.
My DS had a kidney infection at 4 months with fluid showing in the left kidney on the u/s.
The attempted the voiding cysto on him at 5 months and it was a horrible, failed procedure complete with retraction and torn, bleeding penis on an UNSEDATED baby. I still cry when I think about it. Thank God it healed okay and his foreskin is completely scar free and has not been retracted even a little bit since then.
I refused to let them redo the voiding cysto unless (a) he was sedated (b) the person doing it was a urologist and (c) there was to be no retraction. They decided to just monitor the fluid via ultrasound and within a few months it had resolved itself.
I agree with getting the tests done but you are also within your rights to demand that the procedure be overseen by a urologist, not a nurse or a tech and that your baby be sedated. Good luck, I hope everything turns out okay.
I'm so sorry for your son's experience Sara. There is no excuse for what happened to him. Were you at a Children's Hospital? It's just horrifying.
Most places do not sedate for a VCUG because it interferes with the testing. When they do sedate, they wait for the child to wake so they can void normally, to see what happens. With certain types of bladders, pressure can be high enough to cause reflux only on normal voiding.
Also, a urologist doesn't run these tests, a radiologist does. And I have worked with many of the radiologists at TCH, and they are gentle and willing to do what the parents ask. I'm not sure if Dr. Fitzgerald does VCUGs, but she is who I would ask for if she does.
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