Gabriel Dubos, 16, still wears his Sickle Cell Foundation shirt proudly — even if it’s quite a few years old, faded and getting a little small for a growing teenage boy. Perhaps it’s a reminder of where he once was, a shirt he received many summers ago, or perhaps it’s an encourager of who he plans to become. Either way, somewhere along Gabriel’s journey, through learning to manage sickle cell disease to surpassing learning obstacles because of the cerebrovascular disease, Gabriel proudly accepts Sickle Cell as part of his identity. However, Gabriel doesn’t let it define him.
“I’ve always encourage Gabriel to be aware of his illness,” says his mom, Emma. It’s important for him to know how to take care of himself. I just want him to grow up to be the best he can be and know that he can still achieve all of his dreams.”
At 3-years-old, Gabriel had already been hospitalized four times, that’s one more time than he had even celebrated his birthday. He was diagnosed with Sickle Cell Disease as a newborn through the California Newborn Screening Program, hospitalized for multiple infections and needed chronic blood transfusions, to prevent Stroke because of his abnormal blood vessels in his brain. This was too much. Doctors knew he would need a bone marrow transplant. Luckily, one of his sisters was a match, and he successfully had a bone marrow transplant, which stopped many of the complications he experience as a young boy Amazingly, two of his sisters were perfected matches. His mother, Emma said “Let’s go for it. I don’t want him to have a stroke and I don’t want him to receive transfusions for the rest of his life and suffer!”
Since the bone marrow transplant, Gabriel has not been hospitalized again. In addition, he has not had any sickle cell related complications such as progressive cerebrovascular disease or stroke. However, he continues to receive leading follow-up and psychosocial care at the Pediatric Sickle Cell Center which is part of Jonathan Jaques Children’s Cancer Center (JJCCC) at Miller Children’s Hospital Long Beach and will continue, until he becomes an adult. He also goes to the Stroke Clinic yearly and is a part of the STAR Late Effects program and receives follow-up for his bone marrow transplant.
Gabriel did have some learning and neurodevelopmental issues related to his cerebrovascular disease, but he regularly undergoes neuropsychological testing at JJCCC, with a trained psychologist. He has made significant progress over the years since his transplant. After years of practice and hard work, Gabriel recently scored above average on the verbal part of his neuropsychology testing – the first time he has ever done so in that category. The neuropsychology team is now helping him prepare for his exit exam for high school.
Today, Gabriel is healthier than ever thanks to the specialized pediatric care at Miller Children’s and gets to spend more time at the Jonathan Jaques Children’s Cancer Center as a volunteer, than as a patient. Every year he participates and volunteers for the Torch Run, helps support the Hearts Campaign and can even be found working in the JJCCC office, sporting a faded, but loved, Sickle Cell Foundation.
Stroke Outpatient Program
The Stroke Program at JJCCC provides comprehensive assessment and treatment for children and infants who suffer from strokes and employ preventative measures for children who are at-risk for stroke. Newborns, especially full-term infants, are susceptible to stroke. Also children with sickle cell anemia, congenital heart disease, congenital heart defects, immune disorders or problems with blood clotting are at a high risk of stroke. Miller Children’s Hospital has the only pediatric Stroke Clinic in Los Angeles and Orange Counties.
Symptoms of Stroke in Kids
Symptoms of stroke in children are the same as they are in adults. Although most don’t realize that children can have strokes, so recognition of a stroke is often delayed or missed. Early recognition and treatment during the first critical hours and days after a stroke helps to ensure best possible recovery outcomes and prevent recurrence. Some of the symptoms include:
- Weakness or numbness on one side of the body, in the face, arm or leg
- Trouble with mobility or walking
- Slurred speech, problems speaking or understanding language
- Severe headache, especially with vomiting and sleepiness
- Trouble seeing clearly in one or both eyes
- Seizures
- Extreme tiredness
Treatment & Preventative Measures
In many cases children with cerebrovascular disease, transcient ischemic attack (TIA), an overt stroke or a silent stroke, treatment focuses on restoring blood flow to the brain. If less than three hours has passed since symptoms began, doctors may use a medicine that dissolves blood clots. Other medicines may be given to prevent blood clots and control symptoms.
The Stroke Clinic care team follows all patients who have had a stroke, a transcient ischemic attack (TIA), patients from the Sickle Cell CCS Center or newborns from the newborn nursery at the MemorialCare Center for Women, who are at-risk or suspected of having a stroke, are screened at the Sickle Cell Clinic. Some of these patients have been referred after preliminary screening and testing has been done elsewhere. Screening is done through a transcranial Doppler ultrasound at the Stroke Clinic, which provides early detection of patients at risk for stroke.
The hematologist/oncologists and all members of the multi-disciplinary JJCCC care team plus a neurologist help to prevent a stroke from occurring or work to ensure that a reoccurrence won’t happen, through preventative measures.
- Through screenings – a transcranial Doppler ultrasound is given every six months – one year for children with sickle cell disease
- Regular blood transfusions – sometimes every three to four weeks, to prevent recurrence of stroke or to avoid stroke in a child who is at risk for stroke
- Neuropsych testing – to ensure brain functionality and cognition and assess the extent of impairment to a particular skill and to attempt to locate an area of the brain which may have been damaged
- MRI
- Imaging studies
Visit the Stroke Clinic.
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