Hello.
My daughter is four months old and was born with a duplex kidney on one side. She started with a UTI a few days ago, we’re 48 hours into our second lot of IV antibiotics and she still as a temperature as she’s seemingly not responding despite cultures being done, we’re still in hospital and I’m really worried. Has anyone had a similar experience they can share or any advice please? Thanks
My daughter has bilateral duplicate kidneys and bilateral duplicate ureter tubes. We knew she would be born with hydronephrosis but were told it’s genetic, they usually outgrow it & it was more common in boys.
My daughter’s 2 month old nephrology-requested bloodwork showed she needed hospitalized immediately. After several scary days of what you were going through, they sent her home on daily doses of potassium, sodium and antibiotics... labeled with CKD.
Recurring UTIs have plagued her. Urology performed open surgery at 1 year & 1 month old because of UTIs which are scarring kidneys. That surgery actually caused true reflux. She’ll be 3 at the end of the year and has her second surgery set for right after.
We’ve moved out of state and had to find new specialists for her. Even the ones I chose initially didn’t pass a fair test of time. I’m telling you this because you will be advocating for your child if her case is anything similar, which it sounds like it is.
Antibiotics take a few days to figure out due to culture. It’s aggravating. Sometimes we’re okay at home, others we’re hospitalized. One she even had seizures with such a high temperature and heart rate they couldn’t bring down for days.
My daughter has had a rough little life....always catheters, bloodwork, IVs, sedation, radioactive-tracing dye, too many ultrasounds to count and certainly far too many tears.
I myself feel like I have and am going through PTSD with it all. It is scary, all encompassing and overwhelming at times. You learn to smell a UTI before the fever hits. You find tricks to catching urine in the bag at home so you don’t have to take her into the doctors office to wait hours while they try. Your brain remembers every detail until it just gets overloaded.
I strongly suggest, if this becomes a pattern for her, that you start a medical timeline. Keep up with dates, which bacteria made her sick, which antibiotics she was on when she got sick and which ones were prescribed to treat the UTI. She’ll have different doctors if admitted and they will want to know also.
We’ve tried almost every antibiotic and had even been on 2 a day for a while. They cause diarrhea or at best loose stools. That causes painful diaper rash...constant cycle. Baking soda baths are miraculous.
I hope your daughters situation is not as bad as my daughter’s though I know she too could have it worse.
It will be frightening but keep putting one front in front of the other, get her the best doctors you can, advocate and then try to take care of yourself if you can make time. I’m going to be working on the latter soon as her health condition has qualified her for respite care. I’m sure she needs a break from mean mommy who’s always holding her down to be tortured by docs.
Good luck. God bless you and may He heal your little girl sooner than later.
Laura
Seeking any info: Our son was recently diagnosed with kidney disease
some great news….
What do you know now, that you wish you had been told when your child was first diagnosed?
15 and Stage 4 CKD
