{"id":27969,"date":"2017-02-01T00:00:00","date_gmt":"2017-02-01T05:00:00","guid":{"rendered":"https:\/\/www.hydroassoc.org\/aging-out-of-pediatric-care-a-cautionary-tale\/"},"modified":"2024-10-11T12:40:12","modified_gmt":"2024-10-11T16:40:12","slug":"aging-out-of-pediatric-care-a-cautionary-tale","status":"publish","type":"post","link":"https:\/\/www.hydroassoc.org\/aging-out-of-pediatric-care-a-cautionary-tale\/","title":{"rendered":"Aging Out of Pediatric Care: A Cautionary Tale"},"content":{"rendered":"

\"DanBy Dan Kricke
\nGuest Blogger<\/em><\/p>\n

Four.<\/p>\n

That is how many different hospitals I visited trying to transition from a pediatric neurosurgery program to an adult neurosurgery program in the midst of a shunt malfunction<\/a>.<\/p>\n

I was as scared, frustrated and upset as I\u2019ve ever been as a hospital patient.<\/p>\n

It hardly made any sense at all. It wasn\u2019t as if I developed hydrocephalus<\/a> on the cusp of adulthood and then quickly had to transition from pediatric to adult doctors. I had been with the same neurosurgeon and hospital system for two decades. The second of those two decades was a quiet one as far as my hydrocephalus was concerned. A revision of my malfunctioning shunt around age 12 with another around age 14 and then nothing.<\/p>\n

From age 14 to 26, I would head in to see my neurosurgeon for routine check-ups every few years and little else. I\u2019d have a few pressure headaches and migraines here or there but they\u2019d fade away well before anyone thought it was time for me to head to the hospital.<\/p>\n

But then for a few weeks in the middle of winter, I couldn\u2019t shake out of\u2026something. I didn\u2019t even know what it was. My head didn\u2019t hurt that bad. But I felt so lethargic. Suddenly there was a constant pressure in my head. Not nearly as bad as some migraines I\u2019ve had in the past, but it just wouldn\u2019t go away.<\/p>\n

I discussed it with my mom and we called the office of the neurosurgeon I\u2019ve seen since I was a kid. They said because I was 25 I should see an adult neurosurgeon, but didn\u2019t recommend anyone in particular. So my mom, the advocate that she has always been, went about searching for someone familiar with hydrocephalus that could help.<\/p>\n

I wound up at a different hospital speaking with a neurosurgeon who explained that although he treated adults with hydrocephalus, he didn\u2019t have the right equipment to treat me because I had \u201cSlit Ventricle Syndrome\u201d and he suggested I go back to the hospital that placed the shunt<\/a>.<\/p>\n

So we called the first hospital back up and explained the situation. They told me to come in and I transitioned from an ER waiting room to an exam room where I waited for a long time, only to be told by the neurosurgeon on call that I was too old to be treated at the hospital. As I looked on, transformed from a 26 year-old adult to a helpless patient in pain trying to keep my headache under control with little more than hope, my mom sprang into action. She demanded to know why we were being treated this way. She spoke with hospital officials at length who apologized for telling her to come in and told us to go to their affiliate hospital that treats adults.<\/p>\n

At the third hospital, we again explained my situation, and I was examined by an on-call neurosurgeon who, I think, may have never heard of hydrocephalus. I will never forget when the surgeon said, \u201cWell, I\u2019ve googled your symptoms\u2026\u201d This is a major hospital in a metropolitan city and they\u2019re googling hydrocephalus symptoms?<\/p>\n

They gave me something in an IV to help with my headache and relax me. Whatever they put in my IV made my skin crawl. I was hot and cold and hot again. My heart was racing. It was the worst I had felt throughout the\u00a0entire ordeal. As I waited for this terrible medicine\u2019s effects to pass, that was the last straw for my mom.<\/p>\n

She called the pediatric neurosurgeon\u2019s office and explained our journey and demanded an actual referral from my long-time neurosurgeon so we could get out of the hospital we were sitting in.<\/p>\n

I\u2019d like to emphasize again how scared I was at this point. I\u2019ve never particularly liked being in the hospital but I\u2019ve never felt like the treatment I was getting would be detrimental to my recovery. Now suddenly I was visiting three hospitals in a day and trying to figure out how to keep from falling apart emotionally. This all started with me feeling a little tired and suddenly I didn\u2019t know who was going to help me.<\/p>\n

My mom\u2019s call generated results this time, as we wound up in the office of a neurosurgeon who, long story short, booked me for a shunt revision surgery in short order. He replaced the old shunt valve I had been using since I was a child with a newer adjustable model. I was out of the hospital and feeling like my old self in a matter of days.<\/p>\n

Ultimately, I wound up needing a few more revisions a few years later, but if I hadn\u2019t gotten to the neurosurgeon I wound up with, I don\u2019t know that I would have been around to get those additional revisions and meet and marry the love of my life<\/a>.<\/p>\n

My current neurosurgeon has remarked how strange he thinks it is that there isn\u2019t a better transition system for children seeing neurosurgeons as they grow into adults. And I suppose I shoulder part of the blame in waiting until a time of medical crisis to transition, but there has to be a better way.<\/p>\n

I\u2019m sharing this story both as a cautionary tale, to encourage anyone with a child who is going to age out of their pediatric hospital, to work on finding an adult neurosurgeon equivalent as soon as possible, and also to spotlight a way in which a system that should have been protecting its patients did such a lousy job with one in particular.<\/p>\n\r\n

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