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It’s ALL That Matters – The Story of the Incredible Brynn

It’s ALL That Matters – The Story of the Incredible Brynn

It’s been a long year. In March 2018, Brynn was just 3 years old. She LOVED to go to the aquarium, see the jellyfish, and get “Betsy” dolls. Our sitter at the time was going through personal “stuff”… and had already received a warning for being mean to our daughters.

A year ago today, on a normal Monday in March, our sitter took Brynn to the aquarium. And instead of buying her a Betsy doll, she took Brynn to a department store and stole a pair of jeans. An hour later I had to pick up my sitter, and my 3 year old daughter from police custody.

Needless to say the sitter was fired on the spot. But Brynn, who was barely old enough to understand what had happened, was reeling. This sitter had been in her life since she was 1 years old. She was her best friend, her protector, her confidant, and the person who potty trained her.

Brynn blamed herself for many months. We followed the advice of professionals and did not harp on the loss, yet when Brynn brought it up, we addressed it with love and tact. She needed to know that good people do stupid/bad things, and that it wasn’t her fault.

Brynn asleep in the car after 3 hours of testing last week.

After the traumatic experience of being arrested and losing her best friend, Brynn began having accidents. At first we thought she was in shock and her body was stressed. However, after 3 months she’d suffered 5 UTI’s and the doctors could not find a physical explanation.

Her first pediatric urologist “gave up” in May 2018. Then in June, we tried a new practice out on Long Island. We loved her new urologist and nephrologist, but after more (painful) testing, changes to her diet, and lots of antibiotics, the infections continued.

In September, the 2nd urologist “gave up”. We found another practice in Connecticut and started the process again. This time we tried more aggressive medication to “clear her out”, which made Brynn sick and caused her to have explosive accidents at her new school. She missed 12 days of school in the first 3 months, and was embarrassed by constantly needing to be changed.

Blood tests, uroflow, ultrasounds, failed VCUG, and still, we didn’t have any answers. Still suffering from multiple infections, Brynn began building up a tolerance to the antibiotics.

17 UTI’s in 9 month.

Could this all be from 1 single traumatic experience? The doctors said “no”… even the social workers and behavioral psychologist found it was unlikely to be the cause. It must be physical.

In December 2018, Brynn began taking a daily prophylactic antibiotic and a nightly muscle relaxer, along with many other supplements. It was also recommended to us that we eliminate dairy from her diet.

Infection free for 2 months, but still having accidents, I left her for a week to attend the conference in Napa, California. The conference was amazing. I learned to much and met so many physicians, dietitians and nutritionists who are working together to make our world healthier, happier and less stressed.

I also met the woman who represents Daiya – a dairy, nut, soy & gluten free “dairy” product company. We started talking about Brynn and her nut allergies, and her new “no dairy” diet. I told her how hard we’ve been working to try to get to the bottom of her problem, and started to well up with tears of frustration and sadness for my baby.

The woman from Daiya gave me a hug, and told me she’d send me a few products for Brynn to try.

When I returned it seemed that Brynn had another infection. She was raw with a rash and complaining of belly pain. I called the urologist and broke down. Enough is enough. We need to figure out what is going on with my child!

The nurse practitioner had a plan. “Let’s get everyone in 1 room, and run a few more tests, then see what the team recommends.” Last week I took Brynn into Yale Pediatric for a 3+ hour long doctor’s appoint with 7 practitioners in the room. 5 ultrasounds, an x-ray and a uroflow test, and they were able to identify 2 possible causes. Brynn was “full of shit”… and so backed up she probably had residual fecal matter in her that was months old. They put her on a quick “clean out” protocol which made her sick, but seemed to work!

I was hopeful and also stressed to the max. Brynn wasn’t sleeping, and so neither was I. Then one day last week, after a long day at work, I came home to 4 HUGE boxes full of dairy-free yogurt, cheese, ice cream, and other amazing products from Daiya! How amazing?! WOW! THANK YOU!!

My eye welled up with gratitude and relief. Brynn LOVES their products and no longer fights me for her favorite dairy products. My life got a little easier, and Brynn stopped having accidents!

Brynn with her Daiya products! Yummm!

We repeated the x-ray today, and she is still not cleaned out… BUT, still, no accidents for several days.

Round 2 of doc appts is coming up this Friday. The goal is to get her cleaned out, accident free, and OFF the meds by the end of the month. She will probably need physical therapy and lots of extra care and attention, but if you ever met the “incredible” Brynnie Boo you would know that she is the easiest person in the world to LOVE.

While this blog post is very clinical, it was also intended to help other Mama’s know you are not alone. SO MANY people I’ve spoken to have shared their own (gross) stories about UTI’s and poop problems. I had no idea how common these issues are, and it’s comforting to know that most kids just grow out of it! (knock on wood!)

We are continuing to stay positive, and to spend our days laughing and loving each other… because what other choice do we have? I’m her mother, and I cannot just “give up”. My children’s’ health and happiness is the most important thing in the world to me.

Throughout this painful experience I’ve gained so much knowledge, patience and have a deeper understanding and love for my amazing and tough Brynnie Boo.

Thank you for reading this story, and for your thoughts and prayers. I can see the light at the end of the tunnel, and I know little Miss Brynn will be just fine 🙂

Love & yum,

Lindsay “Mama” O’Neill