Hunter

Our son, Hunter, was 18 months old when he started to vomit randomly, up to 8 times a day. We visited countless doctors, urgent cares, and specialists for answers, but no one had a clue why our son was vomiting so much and so often. 10 months into the vomiting episodes, we were finally able to see a gastrointestinal (GI) doctor, but he cleared Hunter of any GI issues.  

A couple of days went by, and Hunter’s pediatrician called us to go over his symptoms and case. After further discussion, she referred Hunter for an urgent MRI of his brain, which showed enlarged ventricles, along with other abnormalities. A month after the MRI, we saw a neurologist at a children’s hospital who told us that our son was ‘completely fine with no signs of hydrocephalus’. We left the appointment determined to find a doctor who would listen to our concerns and help our son!  

As parents, we knew something was not okay with our son. We weren’t going to stop until we were heard, and our son is treated properly! A week after his neurologist appointment, we saw a neurosurgeon at a different children’s hospital. At the first appointment with the neurosurgeon, I broke down and cried. She answered everything I had questions about without me even asking anything! She ordered different tests, labs, and scans, which Hunter had within a few weeks of that appointment.  

Everything came back pretty normal, so she was thrown off a bit. She was not sure if his symptoms were based on his Chiari I Malformation or if he had hydrocephalus. She decided the best course of action was to do a trial of Diamox to see if that slowed down the symptoms and hopefully gave her clearer answers. The Diamox helped Hunter’s symptoms for a month, but then it stopped. 

At this point, she ordered another urgent MRI of his brain, which showed no difference in his ventricles. She decided the next step would be intracranial pressure (ICP) monitoring to check the pressure inside Hunter’s skull. So, five days later, our 2-year-old boy had an ICP bolt placed in his brain and had a 2-day intensive care unit (ICU) stay. At the end of the second day, his neurosurgeon said his numbers were not concerning and mostly normal. We were discharged home at noon that day.  

We drove 1.5 hours back home, but we noticed that Hunter had a lot of swelling in his forehead. I sent his neurosurgeon pictures via MyChart, and she called to inform us that we need to bring Hunter back and go to the ER there ASAP. We drove all the way back to the hospital, where he underwent another brain MRI. This MRI showed a collection of cerebrospinal fluid (CSF) under his scalp. She told us she was now convinced that Hunter does have hydrocephalus and that she is intrigued by his case, as she has only seen this rare complication two times in her career. She placed a programmable shunt in Hunter.   

The first couple of days with his shunt were rough, but it’s been a little over a year now, and we couldn’t be happier and more thankful for all that the shunt has done for our baby boy! Hunter hasn’t vomited since he received his shunt, his eyes do not cross as severely, his speech has improved tremendously, he no longer has absent seizures, and he no longer sleeps all day long. He is able to be a pain-free child, and our hearts couldn’t be happier!

Parents, ALWAYS follow your gut! If we had never followed our gut instincts with our son’s symptoms and scans, he may not be here with us today! We know ourselves and our children better than anyone else! 

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