An abbreviated but long overview…
On April 5, 2014 Larson was playing in our living room when he collapsed. He was extremely dizzy, could not regain his balance to stand up and if moved he would vomit. We took him to the quick care and a CT scan was completed. The diagnosis was Larson was suffering from a migraine. After some nausea and anti-migraine medicine, we were sent home to follow up with our pediatrician, or got to the E.R. if the symptoms continued. After a few short hours we were in Summerlin Hospital ER. Larson was seeing double, lethargic and still nauseous. They gave him more of the same medicine, and he slept there for about 4 hours. They released him with the diagnosis of a migraine. He had been lethargic all evening, and by midnight he was screaming in pain to make it stop, along with uncontrolled vomiting. We returned to Summerlin ER and were admitted and had an MRI. It was determined then that Larson had had a stroke and we were transferred to the PED-ICU in the hospital. During this 9 day stay Larson had a Cardiogram, cardio ultrasound, CT, MRI, 2 Lumbar Punctures and numerous amounts of blood work. We also found out from the MRI that he had a stroke prior, in approximately the beginning of January 2014. The only incident we could possibly connect was there were a couple of times he awoke screaming of a headache in the middle of the night. And he vomited a couple different times in the early morning. He had no fever and felt fine afterwards. We assumed it was food poisoning or from an allergy headache. He had also been having increasing headaches that we attributed to seasonal allergies. No cause could be found for his strokes. Cardiologists cleared him and nothing obvious was found to be wrong with his blood. The focus was then placed on a possible genetic disorder. Larson was placed on a blood thinner to try and prevent future strokes and his physical activity was limited by 75%. (No more Karate, swimming, PE or even recess at school) In addition he was placed on several other medications to try and counter a suspected genetic disorder, MELAS. Each month after we followed up with the cardiologist with more cardiograms. And the hematologist ran more blood work. At the beginning of July Larson had his 3rd stroke. This one presented itself with slurred speech, no balance to walk, and a migraine. It was confirmed with an MRI, and his blood thinner was changed. Unfortunately, this one is an injection that must be given twice a day. We were finally approved to visit a Genetics Dr. at LA Children’s Hospital and a Hematologist at UCLA. A huge thanks to Dr. Walsh, our Hematologist. She made it happen and has been there for us at every turn, even while at UCLA. We began the process of more tests and blood work that needed to be completed prior to our arrival at UCLA Mattel Children’s Hospital. August 11th 2014 we went to Sunrise Hospital for Larson’s TEE test (Trans-Esophageal Echo-cardiogram. The TEE test takes a detailed picture of your heart and its major blood vessels.) While waiting to get sedated for the test Larson fell asleep and then became unresponsive. He was rushed for a CT scan, to the ER and then into the Pediatric ICU. A few hours later he had another MRI and he was shown to have had another stroke. Larson was unconscious for two days. When he woke up he could not speak and had little control over his arms. He was drooling, and appeared to have trouble swallowing. After 9 days consisting of more tests, including finally getting the TEE he was scheduled for a cerebral angiogram. (A cerebral angiogram is a procedure that uses a special dye and x-rays to see how blood flows through the vessels into the brain. It produces a 3D image)
The cerebral angiogram showed Larson had a vertebral artery dissection (VAD) on the right side. (Vertebral artery dissection (VAD) is a relatively rare but increasingly recognized cause of stroke in patients younger than 45 years. Although the term spontaneous VAD is used to describe cases that do not involve significant blunt or penetrating trauma as a precipitating factor, many patients with so-called spontaneous VAD have a history of trivial or minor injury involving some degree of cervical distortion.) We now knew what had been causing the strokes. We didn’t know what caused the VAD and had to decide how to treat it. The options are to coil or stint it, which still can cause strokes. Shut it down completely, leaving him with only his left vertebral artery. Which is dangerous for a child who has a whole life ahead of him, and not know if there is any underlying condition that could injure the only vertebral artery he would have left.
3 days later Larson was airlifted to UCLA. Our first day at UCLA we met with the Stroke Unit, Pediatric Neurologists, Adult Neurologists, Hematologists, Rheumatologists and of course Pediatricians. Later other departments including Genetics were brought onto the team. The conclusion at UCLA was to not operate on the VAD but instead let it heal. Larson is now on a blood thinner and Lovenox which keeps the platelets from sticking as well as anti-migraine medications. While the VAD could have just been caused by something as simple as a sneeze or fall on the playground we are currently undergoing additional tests to determine if this could have been caused by an underlying genetic disorder. As of September 17th Larson has returned to school a few hours a day and is in Speech, Occupational and Physical Therapy. His speech has returned but is still limited and slow. Larson is relearning most things like counting and writing but he can read OK. He has a hard time following instructions, and his behavior has regressed a few years backwards. He has lost a lot of memories, but there are also a lot that comes back to him each day. It is a long ways off from the straight A student, chapter book reading, Lego Master Builder, story writing young man we had just a few months ago. The one thing that never changed or even faded for a second, even when he couldn't speak was his sense of humor and his sweet caring side. He is the most lovable, hugging little guy ever!
