Our daughter, Claudia, had a stroke on July 31, 2017 when she was 8 years old. She was perfectly healthy one minute and suffered a stroke the next. Thanks to our babysitter, we were notified right away and the paramedics were called. The responding EMT immediately realized that Claudia was suffering from a stroke. We were dumbfounded. How could a perfectly healthy 8-year old child have a stroke? Those only happen to older people, not children, right? That is what I said to the EMT, only for him to tell me "As long as you have blood pumping through your veins, you can have a stroke".
We were in the ambulance and on our way to Cincinnati Children's Hospital, one of the best hospitals in the world, within 1 hour of her first symptoms. After a brief exam, they knew she had a stroke. We were immediately taken into the trauma unit, and Claudia was surrounded by doctors and nurses. Everyone was asking her to do the same stuff - try to say some random words, try to lift your arm, try to follow my finger with your eyes - and she was failing all of those tests. Her speech was really slurred. Her smile was was drooped, she couldn't lift her right arm, and she had a terrible headache. She later said she felt like she was being hit in the head with a hammer.
Claudia was taken in for a CT scan and then an MRI. Then, another CT scan. The stroke was confirmed, but the cause of the stroke was not. The CT scan and the MRI were showing conflicting information regarding her left carotid artery. We knew where the stroke occurred, and we knew that the vessel that caused the stroke was fed from that carotid artery, but we didn't know why. The CT scan showed a possible dissection of the carotid artery, but the MRI did not. We needed to know why. The two big questions with a stroke are "What caused the stroke to happen" and "What do we need to do to prevent it from happening again". She was placed on a heparin (blood thinner) drip, and we were admitted into the ICU. A place we never thought we would be. The Critical Care Unit. The neurologist put in an order for her to have neuro checks every hour, 24 hours a day, a spinal tap, and a cerebral angiogram. We still needed to know why it happened. If it was a dissection of the carotid, it would be treated one way, if not, another way.
After the angiogram, ,it was discovered that the carotid artery did not have a dissection, which was great news. Now, how were we going to treat it? The neurology team had recently discovered a study that had come out of Switzerland just 3 months prior that showed progress in treating this type of pediatric stroke with high-dose steroids, along with blood thinner, and for Claudia, we also had to elevate her blood pressure. So that was the plan. We started the steroids, and continued checking her every hour 24 hours a day.
After a 5 night stay in the ICU, Claudia had improved enough to move to the main neurology floor!! We were so excited. She was like a Rockstar! The team of doctors was so excited to see such amazing progress in just a few days. This small study that they discovered, and we agreed to was working. Just 3 days after she was moved to the main floor, we were released from the hospital. Eight days after she had a stroke, we were home. Her official diagnosis was "Focal Cerebral Arteriopathy. My husband and I had to learn how to give her blood thinner injections, which we did twice a day for almost 7 months. She was on steroids for several weeks, and we gradually stepped down the blood pressure medicine over the next few weeks. That was it.
She had to do some therapy - mainly occupational, but for the most part, she was back to herself. She had some minor weakness in her right arm, her handwriting was different, and she no longer had any interest in reading. After some therapy and testing, we discovered that the part of her brain that was affected by the stroke was where her reading comprehension was stored. Our once avid reader no longer wanted to read. AT ALL. What once came so easily to her no longer did, so she didn't want to do it. She could read the words, but couldn't comprehend what she had read. So, we started all over. I started reading to her again like I did when she was a baby. Before we knew it, she started asking if she could read to us. Then, next thing we knew, she was back to reading just like before. Her brain just had to reroute, and find a new place to go for reading comprehension. The brain is an amazing organ!
Now, here we are, almost 3 years later, and Claudia is 100% back to where she was before her stroke. After the blood thinner injections, she was on an aspirin regimen for another 18 months, but on August 1, 2019, she was taken off of that too. She is on NO medicine and has NO therapy. Her recovery has been nothing short of miraculous. We signed her up to be part of the international pediatric stroke study, and she goes to the stroke clinic once a year. That's it! And there is not a day that goes by that we aren't grateful for everyone who made that happen. Our babysitter for acting SO fast, the EMT who prepared the hospital for a pediatric stroke victim, the incredible team of doctors and nurses at Cincinnati Children's Hospital, and of course, the families that allowed their children to participate in the stroke study that came out of Switzerland. We are so grateful to those families!
We were in the ambulance and on our way to Cincinnati Children's Hospital, one of the best hospitals in the world, within 1 hour of her first symptoms. After a brief exam, they knew she had a stroke. We were immediately taken into the trauma unit, and Claudia was surrounded by doctors and nurses. Everyone was asking her to do the same stuff - try to say some random words, try to lift your arm, try to follow my finger with your eyes - and she was failing all of those tests. Her speech was really slurred. Her smile was was drooped, she couldn't lift her right arm, and she had a terrible headache. She later said she felt like she was being hit in the head with a hammer.
Claudia was taken in for a CT scan and then an MRI. Then, another CT scan. The stroke was confirmed, but the cause of the stroke was not. The CT scan and the MRI were showing conflicting information regarding her left carotid artery. We knew where the stroke occurred, and we knew that the vessel that caused the stroke was fed from that carotid artery, but we didn't know why. The CT scan showed a possible dissection of the carotid artery, but the MRI did not. We needed to know why. The two big questions with a stroke are "What caused the stroke to happen" and "What do we need to do to prevent it from happening again". She was placed on a heparin (blood thinner) drip, and we were admitted into the ICU. A place we never thought we would be. The Critical Care Unit. The neurologist put in an order for her to have neuro checks every hour, 24 hours a day, a spinal tap, and a cerebral angiogram. We still needed to know why it happened. If it was a dissection of the carotid, it would be treated one way, if not, another way.
After the angiogram, ,it was discovered that the carotid artery did not have a dissection, which was great news. Now, how were we going to treat it? The neurology team had recently discovered a study that had come out of Switzerland just 3 months prior that showed progress in treating this type of pediatric stroke with high-dose steroids, along with blood thinner, and for Claudia, we also had to elevate her blood pressure. So that was the plan. We started the steroids, and continued checking her every hour 24 hours a day.
After a 5 night stay in the ICU, Claudia had improved enough to move to the main neurology floor!! We were so excited. She was like a Rockstar! The team of doctors was so excited to see such amazing progress in just a few days. This small study that they discovered, and we agreed to was working. Just 3 days after she was moved to the main floor, we were released from the hospital. Eight days after she had a stroke, we were home. Her official diagnosis was "Focal Cerebral Arteriopathy. My husband and I had to learn how to give her blood thinner injections, which we did twice a day for almost 7 months. She was on steroids for several weeks, and we gradually stepped down the blood pressure medicine over the next few weeks. That was it.
She had to do some therapy - mainly occupational, but for the most part, she was back to herself. She had some minor weakness in her right arm, her handwriting was different, and she no longer had any interest in reading. After some therapy and testing, we discovered that the part of her brain that was affected by the stroke was where her reading comprehension was stored. Our once avid reader no longer wanted to read. AT ALL. What once came so easily to her no longer did, so she didn't want to do it. She could read the words, but couldn't comprehend what she had read. So, we started all over. I started reading to her again like I did when she was a baby. Before we knew it, she started asking if she could read to us. Then, next thing we knew, she was back to reading just like before. Her brain just had to reroute, and find a new place to go for reading comprehension. The brain is an amazing organ!
Now, here we are, almost 3 years later, and Claudia is 100% back to where she was before her stroke. After the blood thinner injections, she was on an aspirin regimen for another 18 months, but on August 1, 2019, she was taken off of that too. She is on NO medicine and has NO therapy. Her recovery has been nothing short of miraculous. We signed her up to be part of the international pediatric stroke study, and she goes to the stroke clinic once a year. That's it! And there is not a day that goes by that we aren't grateful for everyone who made that happen. Our babysitter for acting SO fast, the EMT who prepared the hospital for a pediatric stroke victim, the incredible team of doctors and nurses at Cincinnati Children's Hospital, and of course, the families that allowed their children to participate in the stroke study that came out of Switzerland. We are so grateful to those families!
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