Ped urologist for bladder reflux VUR?

amother

Pear

Fri, Sep 09 2022, 10:17 am

amother Mimosa wrote:

To answer questions- this is what my kids doc said:
1. Bris was on time. Baby was slightly jaundiced so they werent sure but it worked out BH!

2. Sometimes it resolves at birth. Sometimes it takes longer. The pediatric urologist said if no reflux or obstruction then most resolve by 3 years of age but we just need to monitor.

3. Biggest thing for us is if he gets a fever to get urine sample tested because more prone to UTIs so dont let a nurse tell us "its just a virus". We need to remind pediatrician etc we need urine sample. If there was reflux then we needed to do the antibiotics daily to prevent UTIs. If obstruction then surgery may have been needed.

Good luck. One kidney was bigger than the other and found on U/s in utero.

I'm curious about numbers now. Because I know my numbers. I'm curious what others were. I guess I'll have to wait patiently (or impatiently) till next week.

bnm

Sat, Sep 10 2022, 9:32 pm

I don't know numbers- the sonographer measured it every 4 weeks but it kept going down and when done on the actual child and not during pregnancy it was way larger than the last number but they put my kid on antibiotics based on the sono done post birth. We were always on high alert for UTI even with the antibiotics. My neighbor's child - they didn't know prebirth and ended up having a UTI at a few days old too.

amother

Pear

Sat, Sep 10 2022, 9:35 pm

bnm wrote:

My numbers keep on going up. So based on your post it might very possible be even bigger than what the sono is measuring.

amother

Pear

Sat, Sep 10 2022, 10:55 pm

bnm wrote:

Just like a baby's predicted weight based on sono isn't fully accurate.....

True but yes and no at least I think so. Will see what the doctor has to say. He has the actual images so he'll be able to tell me.

amother

Mimosa

Sun, Sep 11 2022, 12:57 am

amother Pear wrote:

Thank you! How soon after birth did you see the urologist? Do you know what his numbers were at the sono before birth? Mine are pretty high I think . Another question, is why don't they do a vcug right away after birth? My understanding is that meds are given based on the results of the vcug. Isn't it important to know to right away? (My brain is racing fever at 3 days old because my nephew had that and it was a uti)

We saw the urologist at the first appointment available. Was about at 8 weeks old. Then they rechecked with an ultrasound. They then scheduled the first VCUG appointment available. But until then we were told to watch for any fever. Any fever and we call the doctor for a urine check. BH none so far.
Unfortunately not sure what the numbers were.

amother

Pansy

Sun, Sep 11 2022, 9:08 am

Just want to reassure all of you that I am 45 years old and had VCUR treated with surgery when I was 4 years old. I don't know all the medical details, but I'm quite sure it was not diagnosed in utero--I doubt my mother had ultrasounds when she was pregnant with me. I think it was diagnosed after I had recurrent UTIs as a young child (baby?) I was on prophylactic antibiotics for a couple of years until the surgery was done. I had a follow up kidney ultrasound at the beginning of puberty. I know one kidney is smaller than the other but BH I am a healthy adult and have had no problems since my surgery.

Hatzlacha to all of you dealing with this and refuah sheleima!

amother

Pear

Sun, Sep 11 2022, 9:18 am

amother Pansy wrote:

Thank you. Your post means alot to me.

amother

Periwinkle

Sun, Sep 11 2022, 10:44 am

Hi, my baby (8 month old) just had surgery in mount sinai with doc stock this past Tuesday. Obviously very hard for a mom to have her child go into the OR.. but Bh we have the ability these days to fix things that weren’t fixable in the past..
He needed the hole moved and bigger.
He came home with a catheter for 2 days
Hoping he heals well..
Doc stock came highly recommended to us from a couple of sources.
Wishing you lots of luck OP❣️

amother

Pear

Sun, Sep 11 2022, 12:57 pm

amother Periwinkle wrote:

My mind is racing in that direction. We already had the video call. He didn't want to answer much. He wants to wait for the next sono which is in 4 weeks. He did say the only way water level is related is if it goes to low. I was hoping to feel calmer after the call. I do not. Sad

amother

Pear

Sun, Sep 11 2022, 2:01 pm

I'm doing alot of thinking. And I keep on thinking why after reading whats mostly positive posts here despite the condition why I'm so sad and I decided this: every situation even minor consists of grieving and acceptance. For some reason I'm stuck by the grieving. I don't know why it is that I can't get to the "acceptance" phase. I keep on thinking "why me". Everybody has their nisyonos in life and if this is mine shouldn't I be jumping for joy that it's only this?! Something relatively minor. I wish I'd have answers....

bnm

Sun, Sep 11 2022, 6:10 pm

When we confirmed the reflux and was thinking of a second opinion in case of surgery someone recommended switching insurance so the 'best of the best' can be the dr. At the grand old age of 6 weeks old my baby was already seeing another specialist and getting specialized formula making changing insurance too complicated. I also panicked when I heard about the reflux at 20 weeks but once the pediatrician discussed it with me I did calm down.

amother

Pear

Sun, Sep 11 2022, 6:31 pm

bnm wrote:

The thing about this is #1 the numbers keep on going up #2 nothing is definite untill the baby is born. We can't know whether it's reflux or obstruction. So this whole "not knowing" phase combined with the numbers going up is driving me crazy.

amother

Pear

Sun, Sep 11 2022, 6:35 pm

bnm wrote:

You spoke to your pediatrician before you had the baby? You just called him up to ask? I might want to do that. Sounds like an idea.

amother

Mimosa

Sun, Sep 11 2022, 9:46 pm

amother Pear wrote:

You spoke to your pediatrician before you had the baby? You just called him up to ask? I might want to do that. Sounds like an idea.

I spoke to the pediatrician before birth. We were there for a different kid and I explained what the ultrasound showed. He said to let him know at birth when he came to the hospital so he could order an ultrasound then. And after birth put in an order for the referral for pediatric urologist.

amother

Pear

Sun, Sep 11 2022, 10:01 pm

amother Mimosa wrote:

So a referral I don't need because I'm already dealing with a urologist. He just doesn't want to answer questions yet even though I have a few. I understand where he's coming from but I would still like some answers even though they're not definite.

bnm

Sun, Sep 11 2022, 10:03 pm

amother Pear wrote:

You spoke to your pediatrician before you had the baby? You just called him up to ask? I might want to do that. Sounds like an idea.

Yes. I called. Told him what we saw at the 20 week sono. He knew me because my older one was there every second week for a different issue which we where finally resolving. It was a big help.

amother

Pear

Wed, Sep 14 2022, 2:33 pm

So I spoke to my pediatrician and I have mixed emotions. He did say the end result is a healthy child and I'll be able to put it all behind me eventually, but the patch till will probably be a rough one.

bnm

Thu, Sep 15 2022, 9:15 pm

amother Pear wrote:

I didn't see it as so majorly stressfull- daily it involved oral antibiotics. Extra appointments with a sono every few weeks in the beginning and then it turned into months. The urologist was a few blocks away and we walked so transportation and travel time was under 10 minutes. If the kid had a fever we did usually have to do a urine culture and he got sick A LOT but that wasn't related to the urinary reflux, he had a whole bunch of other stuff going on and the urologist was our least stressful appointments. We moved out of Brooklyn but still go back to that urologist because at this point we only have to go every 2 years, I tried finding someone closer but it was 20 minutes closer and they didn't have a sonogram machine on premises, it would require a separate sono appointment each time. I said no, thank you.