Growing up, I never had urinary tract infections (UTIs) until I was about 23. It never even crossed my mind that this might be an issue with raising daughters.
When my oldest daughter, C, was three, she started having accidents after being potty trained. These were mostly poop accidents and then pee accidents. We went back and forth between the pediatrician, urgent care physician or nurse practitioners, the urologist, and gastrointestinal doctors. I could catch the symptoms because she usually ran a fever, and her urine smelled terrible.
She must have had 7 UTIs in a year.
We did x-rays which showed her backed up with poop. We started Miralax to keep her regular, made sure she drank lots of water, and ate more fruits and veggies. They also did a test where they put a catheter in and flushed out fluids to see the urine flow. These tests showed nothing out of the normal. I didn’t know you could have reflux in your urethra. Did you? It’s where the urine goes back inside and causes an infection. After talking to a few female friends who have experienced UTIs, I requested C be put on a prophylactic. We finally got her on Keflex, and she took it every day for two years.
Between the Miralax, diet changes, and constant reminders to go to the bathroom, we started coming around the other side. She finally outgrew the UTIs around seven years old.
I was so relieved to be out of the daily meds and accidents and constantly reminding my almost seven-year-old to go to the bathroom. I envied my friends who could take their young kids old somewhere and not have to constantly remind them to use the bathroom. It did not help that my middle child, A, was easily potty trained at 2.5 years old and even nighttime trained with hardly any prompting.
Finally, by 2020 we figured it out. C went off her medication and hasn’t had any issues since.
Then my middle child started feeling sick when we were camping. Immediately, I could tell by the smell of her urine that it was an infection. Off to urgent care we went. Guess what? She had a UTI. Then came the urgent care visits, the pediatrician visits, and referrals for urologists and gastrointestinal doctors. This time, we had one other little problem. We were now in a pandemic. Doctors were swamped, and appointments were either non-existent or months out. Then we ended up moving out of state.
She had her ups and downs, and we started the whole process over again in our new home state.
The urgent care doctors knew me. I would come in and drop off the sample and wait for results and not even bring her in. I had hats for collecting urine, sample cups, and wipes. And, I could run my own lab here, I’m sure. We eventually got her into a urologist.
We were then referred to the Bowel and Bladder Clinic that the Children’s hospital started. It’s really convenient because they have a urologist, gastroenterologist, nurse practitioner, and pelvic floor physical therapist all meeting at once with the patient and adult.
A was six at the time, and she had a catheter test done. This did not show any reflux, so an x-ray was done. The X-ray showed she had a backup of poop, so we went the MiraLAX route. I noticed it just made it runnier and didn’t seem to help. Also, I noticed a change in her behavior where she was very inattentive and had a lower frustration tolerance than what was normal for her. I mentioned it to her doctor, and we switched to Ex-Lax, which worked wonders for her. I also noticed her impulsivity would increase when she took MiraLAX. Not sure if that was the correlation, but I think it really affected her emotionally.
On recommendation from the Bowel and Bladder clinic team, we started pelvic floor physical therapy for A. Which, as two working parents with no family support nearby, proved to be interesting.
One day I had a breakdown in the shower. My husband came in to ask me a simple question, probably about dinner, and I lost it. I was bawling because I could no longer juggle the mental load of all of her appointments. It was always me changing my schedule. I took unpaid time off because I was out of sick time and PTO time. In my field, it’s not fair to my clients to constantly change their schedules. I work as a mental health therapist, which does not allow the flexibility that some other jobs have. I can’t just take my lunch at a different time. My day is very structured, and I see clients back to back just to make sure I can do school pick up and drop off for my kids.
Having to drag an extra child or two to each other’s appointments 30-40 minutes away kind of stinks.
Especially with all the extra precautions hospitals and doctors took by not allowing siblings. What a pain! I am grateful that I have talked to most of the staff, and they do not mind an extra child or two. Also, I began asking for help because I could not shoulder it alone. I asked our friend/neighbor to pick up our oldest from the bus stop by our house, and they were happy to. I have asked my husband to start taking time off work after having a long conversation with him about the importance of my job and the impact on my clients, and how I was getting pushback from my supervisors.
We went to the Bowel and Bladder clinic. It was decided she would start pelvic floor physical therapy. Months of that and working with her at home proved to be hard. We have had to constantly tell her to go to the bathroom, sit for longer than two minutes, do breathing and core exercises, and monitor her bowel and bladder output. Also, my bribe of an Ipad in the bathroom was shot down because it actually distracts kids from the task at hand. So she would just sit there and wait. She would have constant accidents.
She never wanted to “miss out” while she went to the bathroom, so we had our kids, and her two closest friends assured her that they would stop playing or pause whatever they were doing to help her go to the bathroom. This made her embarrassed, and she would not say anything. We worked so hard to get her to tell us, but she wouldn’t. Even at school, she was worried about asking to go to the bathroom and was even denied a few times. Her main teacher understood and was very supportive as her daughter had similar issues.
Mama bear couldn’t have her being denied by others at school, so I got a doctor’s note stating she was allowed to use it at any time without having to wait and ask. Her teacher was on board. It ended up being her elective teachers or substitutes that did not know she needed support in this area. Luckily, her first-grade classroom had a restroom in it. I had this added to her IEP (she already had one for speech), which was not a problem.
Almost every single day for the past 2.5 years, she has had one to four accidents daily.
I was overwhelmed and frustrated. It happened at school, at home, at friends’ houses. I have one mom friend that helped us a lot and set timers and changed her many times and never made her feel bad about it. Her daughter is the same age as my A, and between her daughter and her mom, I felt comfortable sending her over there, but other than that, I did not feel safe sending her anywhere else without me.
I was embarrassed that my seven-year-old was not toilet trained.
That she would hide it and deny it. I felt so bad for her that she didn’t feel supported. I tried my hardest to be as calm as possible, but sometimes I would get so angry (at the situation, not her) and wonder what was wrong with me? Did I fail her? Why does this keep happening? What can I do to support her? Will this ever end? I did not want to send her to activities and have her be embarrassed. She had to wear a swim diaper to swim lessons because the pool got her bowels going.
Finally, since this past June 2022, we figured out a good regimen as far as vitamins to keep her regular and prevent UTIs. She now takes daily multivitamins, probiotics, fiber, and cranberry pills. After one last visit to physical therapy in June, the tests showed her muscles were getting stronger. I can say that she had a few accidents in July when she was in California with grandma, and she’s had one little poop accident since being home at the end of July.
Where are we now?
She still wears a pull-up to bed, but overall it’s been almost too good to be true. She starts second grade this year, and I am hopeful for this year to be a better year. I will still have her take a change of clothes and wipes to school, and she can change herself. I will still address her teachers about it because I don’t want her to slip back into having accidents again.
And, I still live with chronic stress from the past 2.5 years and not feeling like I can let anyone else help her. It has been hard to let that go and trust that she is getting better. I hope one day I can just let it go. I keep telling myself this is a season, a rough one, but it will come to an end.
Out of all this, what I have learned is to continue to fight for your babies. I knew something was wrong. It wasn’t just her being lazy; her pelvic floor was just weak. I am so grateful we figured it out.
