Hydronephrosis and toddlers

[boiler717]

T was diagnosed with hydronephrosis in utero and has been monitored ever since. A year ago it had pretty much resolved, down to grade 1. Now it’s worsened and back to grade 2-3. The doc thinks it’s from PTing, and wants us to focus on him going to the bathroom more often (every 3 hours during the day at at least every 6-8 hours overnight). We have not pushed night training at all, but he’s been dry in the AM for awhile.
Did you wake your dry, PTed kid overnight (if they had hydronephrosis)? It just seems really overwhelming to do that, and I wonder how necessary it is. We go to bed right after he does so it would involve setting alarms for us, waking him up, etc. He hasn’t woke up overnight since 5m old, I have no idea how he’d react to it, either (but I don’t think good!). The doc was like “just try taking him before you go to bed or when he wakes up middle of the night”, so I don’t think he totally gets what a big change that would be for all of us.

[mpc]

DS was also diagnosed in utero and still has it at age 5.5 (both kidneys). Our doc has never mentioned a grade so I can't speak to that. He did emphasize that during potty training we needed to make sure that DS didn't try to hold it and that he peed often. He didn't tell us to wake him overnight. He did suggest that we add an extra time pee-ing to our nighttime routine. i.e., go to the bathroom, brush teeth, read books, go to the bathroom one more time, sleep. That would help make sure he was really really empty before bed. Now at 5 years old, we aren't setting timers anymore or having to be so strict about it. Has T had any other symptoms? DS has had no symptoms and we wouldn't know about it if it weren't for ultrasounds during pregnancy.

Oh, as for waking up, I don't necessarily think you have to, but if you do, I wouldn't worry about it being too bad for him. We did take DS during the middle of the night during a phase at 4yo were he was wetting the bed a lot. He barely registered being up and always went straight back to sleep. I don't even know if he remembered it the next day.

[lilac05]

I don’t have experience with hydronephrosis, but I would ask the doctor if it would be OK to try having him go to the bathroom more often during the day for a period of time and then re-testing. If sleep has to be interrupted for his health, you’ll figure it out...but it would be great to try some changes without interrupting sleep first!

[mpc]

Both of my daughters also had hydronephrosis discovered during pregnancy. Apparently I make all my babies that way. DD1 was resolved when we checked after birth, but DD2 (2 months old now) still has it, a similar severity to my son. But apparently it's not as big a concern in girls because of their different anatomy. None of this is really relevant to you, lol, I'm just sharing because usually people don't even know what it is.

[boiler717]

mpc he hasn’t had any symptoms or issues, although when he hit his face he became dehydrated SUPER quickly.
I’m a little annoyed because I asked about PTing at his last appt, and the doc was like “oh no issues!” And then today he said “we often see issues with this and PTing.”
I am worried he doesn’t pee often at school, so I need to figure out what they can do there. Maybe a watch with reminders? I think we should start with more frequently during the day, voiding completely, and then see how he is doing in March before waking up MOTN.

[pinotgrig]

I’m going to butcher her screen name because all I can think of is her real name, but I think @carolinagirl85 ‘s has this.

[vtdiamond]

My son has vesicouretheral reflux which causes his hydronephrosis. His is grade 3-4, at his last appointment they had said it improved a little bit. But they had no instructions for us as far as potty training and MOTN wake ups.

[ohgillian]

Nov 30, 2018 11:21:38 GMT -5 pinotgrig said:

I’m going to butcher her screen name because all I can think of is her real name, but I think @carolinagirl85 ‘s has this.

carolinagirl831? 

[carolinagirl831]

Yes, my DD does. She was diagnosed at 6 weeks, she was on prophylatic antibiotics for her first year. then after her VCUG revealed she still had grade 4, she underwent the deflux procedure at age 1. She was fine and off antiobiotics until age 2.5-3 when we started potty training, it was constant stream of infections, Fever, UTI,vomiting, very sick. Every UTI showed a different bacteria, it wasn't just one she couldn't kick.
Finally we saw two urologists who both recommended the open surgery. She has the open surgery Sept 25. She has been SOOO much better ever since. Her urologist said she would likely never grow out of it because her ureters were too short and angled wrong causing the back flow of urine. At first I was so hestitant to do it, but i am so glad we did. She will be on antibiotics for 1 more month and then she can finally go off.
I am glad it was fixed before she started school otherwise she would have missed so much school with home many UTIs she was getting.
I would get a second opinion if i were you. It wouldn't have mattered if we woke her up at night (which I wouldn't want to do either).
Good luck!

[boiler717]

Nov 30, 2018 11:57:30 GMT -5 carolinagirl831 said:

Yes, my DD does. She was diagnosed at 6 weeks, she was on prophylatic antibiotics for her first year. then after her VCUG revealed she still had grade 4, she underwent the deflux procedure at age 1. She was fine and off antiobiotics until age 2.5-3 when we started potty training, it was constant stream of infections, Fever, UTI,vomiting, very sick. Every UTI showed a different bacteria, it wasn't just one she couldn't kick.
Finally we saw two urologists who both recommended the open surgery. She has the open surgery Sept 25. She has been SOOO much better ever since. Her urologist said she would likely never grow out of it because her ureters were too short and angled wrong causing the back flow of urine. At first I was so hestitant to do it, but i am so glad we did. She will be on antibiotics for 1 more month and then she can finally go off.
I am glad it was fixed before she started school otherwise she would have missed so much school with home many UTIs she was getting.
I would get a second opinion if i were you. It wouldn't have mattered if we woke her up at night (which I wouldn't want to do either).
Good luck!

That sounds really difficult, I’m so sorry! my son had a VCUG done when he was an infant and his hydro isn’t caused by that, his ureters are just narrow. I’ll ask if we need to repeat.