This post is written and sponsored by Overland Park Regional Medical Center. When your child is sick or injured, trust the expertise of The Pediatric Center at Overland Park Regional Medical Center to get them back to being a kid again. To learn more about The Pediatric Center and meet our pediatric specialists, visit hcamidwest.com/pediatrics.
My daughter, Nora, had a pretty uneventful birth. She is our second child. After having preterm labor at 35 weeks that progressed very slowly, I had made it to 6 centimeters at my 38 week appointment. Just a few hours later, our sweet girl was born with no complications.
However, we started seeing issues right away. She shook uncontrollably immediately after birth and that lasted several days. When test didn’t reveal the cause, hospital staff reassured us it would go away. It eventually did.
Then Nora struggled to breastfeed because she couldn’t relax her body to get into the correct position. We began seeing lactation consultants, chiropractors and primary care providers. Nora was diagnosed with colic, but the lactation consultant said she was the stiffest baby she’d ever worked with, which was concerning. Nora refused to take bottles, so we continued to breastfeed frequently to help give her body a break. But at just 10 weeks old, Nora dropped from the 56th percentile down to the 6th percentile for weight, and she seemed to be in constant pain.
When we finally found our current pediatrician, she said Nora was the sickest baby she’d ever treated. Over the next several months, we consulted just about every specialist at the first children’s hospital we were referred to. Everyone found an issue – something different each time – but no one could tell us why all these things were happening. As her parents, we knew a bigger overarching issue had to be going on.
We saw our first pediatric neurologist, who told us there wasn’t any neurological concern. We explained how Nora postured, seemed to be in pain a lot, struggled sleeping and missed milestones. We even asked about dystonia, a neurological movement disorder, because it seemed to fit her symptoms. He told us it was incredibly rare for an infant to be diagnosed with the disorder, because Nora would have shown signs immediately at birth and the condition is genetic. At this point, Nora started one of her screaming spells. She was inconsolable and moving uncontrollably, which she did frequently and is a classic sign of dystonia. We were referred to a genetics specialist, prescribed medication to help calm Nora down and were told to return in four months. We refused to wait and instead pushed on to get Nora help.
Over the next couple of months, Nora was put through a ringer of tests as we were referred to 14 different specialists. She had MRIs, CT scans, ultrasounds, blood draws, an airway surgery and more. We were getting frustrated. We wanted answers, and I knew that Nora needed care from a pediatric neurologist now. When we asked around about a second opinion, several people suggested Pediatric Neurologist Dr. Brian Aalbers with The Pediatric Center at Overland Park Regional Medical Center.
When I called to make the appointment, I was thrilled that they would be able to get us in within a few weeks. Nora was almost 7 months old and miserable. Her weight was declining and she needed a feeding tube at this point. The clinic called me back 20 minutes later, and said that Dr. Aalbers heard about her case and wanted to see her that week. I just lost it! There was so much hope that maybe this would be the appointment to give my girl some relief.
Meeting with Dr. Aalbers exceeded every expectation I had as a mother and advocate. He had actually fully read every detail from Nora’s chart before our appointment and completely listened to every concern and question we had. Most importantly, he knew how to take time explaining things. I could cry just thinking about what a wonderful provider he is for our girl and how he has changed her life.
He did his due diligence by running more tests, but he immediately saw what we did in her symptoms. He began Nora on a new medication that was an absolute game changer, and by our next appointment, he had officially diagnosed her with dystonia and hypotonia (low muscle tone).
Although especially rare in infants, dystonia causes involuntary and sometimes painful muscle contractions, which can result in twisting, repetitive movements and abnormal postures. It’s often misdiagnosed as cerebral palsy. Nora does a lot of falling and struggles with balance and controlling her body. We still aren’t sure why Nora has dystonia, but Dr. Aalbers has assured us he will not give up looking for answers.
Nora will be on medicine for the rest of her life to manage her symptoms and pain, and she will undergo aggressive therapy to learn how to work with her body. She goes to physical therapy once a week, as well as doing occupational therapy, speech therapy and feeding therapy once a week. She had surgery a few months ago to place a g-tube, a surgically placed device in her stomach for supplemental feeding, hydration or medication. She can now safely take all her needed medications because dystonia affects her swallowing function. Motor skills and speech will continue to be hard for her, but our girl is very determined. We are even picking up her first walker this week!
While Nora certainly has a hard road ahead, I can’t imagine where we would be without a team of people who would listen to us like Dr. Aalbers and the pediatric neurology team. They literally changed our lives. Without these answers and this treatment plan, I can confidently say Nora would still be miserable and failing to thrive.
Nora turns 1 this month, and being her mom has taught me so much. When it comes to being a medical mom, I have learned to trust my mom-gut, ask all of the questions and advocate fiercely for my child. My biggest hurdle when it came to all of that was learning to stop being so concerned with offending doctors. Don’t be afraid to ask for a second opinion! You know your child best. You are with them every second of the day, while the doctors see a chart and your child for 30 minutes. A great doctor welcomes second opinions because they are confident and care more about your child than their ego. That’s what we found in Dr. Aalbers. So, moms, keep fighting for your kids. You are their voice!
Jenni Wilcoxen lives in Fort Scott, Kansas. She is a mom to 1-year-old Nora and 3-year-old Jude.
When your child is sick or injured, trust the expertise of The Pediatric Center at Overland Park Regional Medical Center to get them back to being a kid again. The Pediatric Center provides an excellent experience for kids and their families who are looking for continuity of care and the highest level of expertise at the bedside. The Pediatric Center offers:
- Comprehensive pediatric services treating newborns to teens
- Pediatric ER with short wait times
- Quick and convenient access to pediatric specialists including cardiology, endocrinology, gastroenterology, general surgery, neurology and orthopedic surgery
- A pediatric inpatient unit for children, which includes a medical-surgical inpatient unit and pediatric ICU staffed by pediatric hospitalists and intensivists, as well as specialty physicians, all with pediatric-specific training
- A Level III NICU, which is the most advanced NICU in Johnson County, offering care for newborns with serious health issues and babies born as early as 22 weeks gestation, also called “micro-preemies”