Hi! My name is Lexi! I’m almost 3 years old. When I was a baby, I had a stroke. I hope that you will enjoy reading about me and always remember that KIDS HAVE STROKES TOO!
CHASA: Children’s Hemiplegia and Stroke Association. Strokes occur in 1/2800 babies, and 1/100,000 children. 50-80% suffer disabilities, 20%-40% of pediatric strokes are fatal. There is a 50% chance Lexi could have a stroke again by the time she’s 5 years old; it decreases from there.
Pediatric Stroke: Lexi is a pediatric stroke survivor! She suffered from a stroke in 2010, sometime after she was born (6 weeks or so), resulting in an internal brain cyst, brain damage/scarring, and disabilities. Most people don’t associate strokes with children, but kids have strokes, too! Her specialists and doctors are unsure when exactly Lexi’s stroke occurred, or what exactly caused it. We’ve been told by doctors that she was extremely lucky to not be physically affected as much as she should have been from the size of her stroke. Pediatric Stroke is her main diagnosis, along with Hemiplegia & Cerebral Palsy. The stroke is what started it all.
Cerebral Palsy (CP): Lexi has minor CP on her Right Side. CP means that Lexi struggles with development and motor control. This is what classifies her as disabled. CP goes along with the Hemiplegia/Hemiparesis, listed below. Most people who have CP will have their arms and/or legs pulled in towards their bodies due to tightness in the muscles. Lexi does this, although it has gotten better in the last year or so.
Hemiplegia/Hemiparesis: Lexi is classified as being hemiplegic/hemiparesis. This means she has weakness/slight paralysis on her Right Side. She has less feeling on her Right Side because of this. This also classifies her as disabled.
Seizures: This has been the most common topic people have asked about. Lexi has had seizures in the past, and has had lots of seizures in the past few weeks, all varying in intensity. Most of her seizures are minor, although she’s had a few more intense ones, as well. Lexi doesn’t really realize when her seizures are happening and she is unable to control it. The seizures where she is partially conscious are called temporal lobe seizures, varying in intensity. She has absence seizures where her brain just checks out and she doesn’t respond to you. She has had one “grand mal seizure” that we know of (essentially the “stereotypical” intense one). Seizures are typically treated with medication, but Lexi is currently not on any; her doctor(s) say she might need to be on some for about a year if her seizures continue. The more seizures Lexi has, the greater chance she will have more and more. After her grand mal seizure a few weeks ago, she got an MRI to check to see if her brain cyst area was stable; it was, but they found that one of her lobe/vessels was bigger/more swollen than the others, so they think that either it just looked that way next to her brain damage, or because she’s growing, or (most likely) it’s what’s triggering the increase in seizures (reason unknown).
Therapy: Lexi attends physical therapy as well as occupational therapy 2-8x month. Physical therapy works her trunk (core area) to toes, and occupational therapy deals with her trunk to her fingers. Lexi also attends a specialized therapy session/evaluation once every couple months. These are located in Pediatric Rehabilitation Centers in Orem and Salt Lake City. Lexi also participates in Constraint Induced Movement Therapy which isolates her right hand, forcing her to use it.
Orthotics: Lexi receives orthotics, or braces, to assist her with her disability. She doesn’t have to wear these 24/7, but very frequently. She has two different leg/ankle/foot braces, and one thumb brace/splint. She is currently wearing one leg brace and one thumb brace daily to assist with stability. Her leg braces, Dafo 2and Dafo 9, are customized to fit Lexi’s foot/leg/ankle. Her thumb brace (we call it her High Five Brace) is fit to her as well, though not specifically customized for her hand. Lexi has to wear 2 different sizes of shoes while wearing her braces, and always has to wear shoes while wearing her brace. She gets new ones every summer.
Treatment: Lexi receives Botox Treatments on her Right Side every 3 months. She is put under general anesthesia during this time. She receives injections in her Right thumb, hand, forearm, pec, bicep, gastroc (back of calf), hamstring, ankle, etc. These Botox Treatments essentially kill the nerve/muscle (temporarily) and so it makes it easier and more comfortable for her to move, stretch, etc. Lexi also receives Phenol injections, which target the actual nerve as opposed to the muscle.
Effects on Behavior: Lexi is probably going to be the happiest little girl you’ll ever know! She is very well behaved, and so dang cute! However, sometimes she has meltdowns, or explosions, when she is struggling to comprehend her feelings and emotions. This doesn’t necessarily mean that Lexi has a behavioral disability, just that she lacks skills (from her brain damage) that other kids typically have. This is typically known as Sensory Processing Disorder.
Lexi’s Struggles: It’s interesting to observe other children who are Lexi’s same age, or younger, do things that Lexi can’t do very well, or even at all. The simple things like holding a cup, clapping, running, using 2 hands at once, stairs, and other normal activities are a struggle for her. She does great though, and is a very determined little girl. It’s a small victory when Lexi sits criss-cross-applesauce, climbs up a stair, or picks something up with her Right Hand.
Lexi’s Specialists, Doctors, & Therapists: We are very lucky to have such great people that work with Lexi. Lexi sees Dr. Susan Benedict, who specializes in pediatric stroke at Primary Children’s Neurological Center; Lexi sees her 2-6x year. Ben is her Physical Therapist, whom she has been seeing for a year and a half and she just loves him! Brian is her Occupational Therapist, and has been seeing him for about a year. Both of these men are top in their field. Dr. Judy Gooch/Beverley Krensky are her Primary Children’s treatment therapists; they recently started their own practice: Utah Neuro Rehabilitaion
How did you find out Lexi had a stroke? We found out by accident actually. She went in for a CT of her brain, checking for crainiosynostosis (plates in skull closing prematurely), and they found the cyst on her brain, indicating a recent stroke. From there, we met with neurologists, neurosurgeons, etc. and she received an MRI to get a better picture of her brain. We are so grateful to the nurse at UVMC who sat us down right after they found it on her first CT scan, instead of waiting hours before the doctors could read it. That’s definitely a day that we will never forget!
What do they think caused Lexi’s stroke? They are unsure the exact cause. Lexi went through a lot of testing to find out, but they were unable to pinpoint it. My husband and I also went through testing to see if it was a genetic thing. Obviously, it was a blood clot in her brain, but that’s as much as we know. Lexi had to go through weekly blood tests last year to monitor her blood consistency, etc.
Does that mean Lexi is behind developmentally? Yes, but she’s smart as all get out, and capable to boot! She does have developmental delays in her right side motor skills, but we were extremely blessed that Lexi wasn’t affected any more than she was. She does so well that most people can’t tell right off that she has a disability. Recently, we were told by one of her doctors “Honestly, you guys were very lucky with how severe her stroke was.” Phew!
Does Lexi have any other problems? Lexi is allergic to cows milk protein and soy protein which causes some problems in her eating! This is why she is so small. She pretty much couldn’t eat for the first 4 months of life as we were trying to figure out what she could it. She was in newborn clothes until almost 4 months old! Now, Lexi can tolerate small amounts, but, say, if she eats macaroni and cheese for lunch, she can’t have anymore “dairy” products. It’s a lot better than it used to be, though! She is also allergic to peas, just like her daddy, and yes, it’s a real food allergy! Because of her food allergies she struggles with acid reflux, but luckily is not on any medicine for it right now. Her stroke also caused her to have a sensitive gag reflux so she gags/chokes more than the average kid.
How does Lexi’s puppy help her with her disability? It’s called a therapy-dog/therapy-puppy and does wonders for people with disabilities of any kind. We just got the puppy in the fall, so we are new to this therapy, and are still working on basic puppy training. Overall, having a puppy helps Lexi do therapy without her realizing it: walking her on the leash, helping feed her, playing with her, petting her with Right Hand, picking her up with 2 hands, etc.
What are some of Lexi’s therapy activities and/or at-home activities? This question is probably one of the most frequent questions asked. At therapy, Lexi does one-handed activities (see above, Constraint Induced Movement Therapy) like picking up toys, trying to grab something out of a box, playing with balls, etc. She also kicks soccer balls, works on the balance beam, climbs stairs, walks in the grass and up hills, practices fine motor skills, swinging, strengthening, stretching, etc. One of the most common things Lexi does at her PT is walking up and down stairs. At home, we try to incorporate every day activities into her therapy program, such as doing a puzzle with only Right Hand, or giving a High-5 with Right Hand. She jumps on her trampoline a lot to strengthen her leg, foot, and ankle, rides a scooter, does silly obstacle courses, does some Yoga, works with her Sensory Bag (objects varying in texture, shape, weight, size), and other such activities. Lexi participates in gymnastics at The Little Gym and it has helped her so much. Those are just a few activities she does. She has a sticker chart that she puts a sticker on for each therapy activity she does, and when she reaches the castle – – – PRIZE! 🙂
Does Lexi have specialized equipment? Aside from her Dafos/braces, Lexi uses a few things that other kids don’t. She has immobilizers, casts, Kinesio tape, Co-flex bandaging, Thudguard helmet, and other various braces to help stretch. At therapy, she uses equipment such as a baby wheelchair, tumbleforms, and other therapy equipment. She also has a mini-trampoline, a scooter, and other various everyday items used for her therapy.
So, can Lexi still feel things on her right side? Lexi has decreased sensation/feeling on her Right Side, so she can’t feel things as well as she should be able to. It will probably always be this way. Her sensory output on her Right Side can start to fix itself, but it could be years and years from now. Her sensory output has increased since she began therapy almost 2 years ago.
Where was Lexi’s stroke located? On the left hemisphere of her brain, back half, thus affecting her Right Side (specifically motor skills). If looking at an image of her brain, it would appear darker and smaller and look to be about 1/4 of her brain. This part has the cyst, and the scarring, and will always be damaged. Because she is so young, her neuro-transmitters from that location are doing a great job rewiring and rerouting themselves to other areas of her brain.
Selective Dorsal Rhizotomy. This is a surgery that Lexi will be having sometime in the next few years. A basic run down is the neurosurgeon goes into her lower spine, isolates the nerves that are signalling her Right Leg muscles and nerves to tighten. Then, the surgeon will split the nerves, causing a “permanent” treatment for her leg. Post surgery, Lexi will be spending a month in the hospital with PT every day to get her leg working again. She needs to be at least 4 years old. It is called selective for many reasons: only a handful of children/adults receive this surgery and not many surgeons are qualified to perform it. There will be more posts on the SDR as the time for surgery gets closer.
Lexi’s Hair Loss. The past couple months, Lexi has lost almost all her hair. This sweet girl has really defined beauty in it’s true sense. Despite her hair loss, she looks in the mirror and says she’s beautiful – because she is. We didn’t know what was causing her hair to fall out for quite sometime, but Lexi was finally diagnosed with extreme Telogen Effluvium. Basically, this means that stress and hormone imbalance has caused her to lose her hair all at once instead of gradually over time. Our once strawberry blonde, wavy haired girl is now sporting headbands like a rockstar. Her hair seems to be growing back and it’s about the length it was when she was around 9-12 months old.
What does all this mean for Lexi; what are the long term effects? Lexi will have a harder time with some things than other individuals. Some things that aren’t hard for normal people, are, and will be, harder for Lexi. Her head will always be smaller. Lexi will always struggle with her Right Side. As she gets older, we will find out more.
How does Lexi handle her condition? Amazingly well. She is one tough girl and such a trooper! She doesn’t know any differently, so she has nothing to compare it to. She was blessed with a happy demeanor, and the ability to handle her trials. She does have her fair share of crying and stubbornness regarding therapy or doctor’s visits, which is to be expected, but overall she rocks. Even though she can’t do things like the other kids, or not as well, she still plugs along!
Is it genetic? My husband and I did rounds of testing to see if it was genetic, or a combination of our genes that caused it. They didn’t find anything indicating that it was genetic, so, no, we don’t think it is genetic.
What are the “awareness colors” of Pediatric Stroke and her other conditions? Pediatric Stroke is symbolized by blue and purple, or, if only one color is present, it’s purple (hemiplegia). CHASA has a “mascot” that is a penguin (perfect for Lexi) named Kandu. Cerebral Palsy is represented with the color green.
How can I help? Wear a “Kids Have Strokes, too!” bracelet. Tell people about it. Write it on your car, research it, become informed. Ask questions so you can give answers. Ask your local government to officially declare May as Pediatric Stroke Awareness month. Wear a t-shirt, button, necklace, or sticker. Volunteer. Put a ribbon on your car.
Can I donate? Yes! CHASA takes donations and has great fundraising/awareness ideas, as well as Primary Children’s Medical Center or any other pediatric hospital. You can donate in honor of Lexi, or someone else you know. Lexi also has Lexi’s Piggy Bank that helps pay for her medical bills and costs.
Lexi is a fun-lovin’ girl with lots of energy. When she falls from not being able to walk properly, she jumps right back up and says “I’m okay!” She is sweet and loving and wants to be everyone’s friend. Lexi doesn’t know any different, so she just goes about her daily activities. She loves barbies, princesses, puppies, penguins, mermaids, and pirates, and idolizes Rapunzel. She loves to “dance and sing a lot”, participate in gymnastics at The Little Gym, and snuggle. She loves to make up stories about princesses, read books, and color. If she could have a pet penguin, she would!
