FREQUENTLY ASKED QUESTIONS

Great question! Several symptoms are similar to those in adults! Most people are familiar with the FAST acronym shared for adult stroke awareness. Those are the same! (Face Drooping, Arm Weakness, Speech Issues, Time to call 911). However, in young children, there are a few additional symptoms that often get overlooked by parents, caregivers and even medical doctors. Seizures are often the first indicator of neurological issues or stroke in infants. Hand preference before the age of 1 is also a sign that often gets dismissed as, “Oh, he/she is already left-handed.” True hand preference isn’t typically seen until after the age of one. Many times children aren’t diagnosed until they begin missing milestones, such as sitting or walking, even sometimes well into grade school! If children are past conversational age, they may complain of sudden vision changes, severe headache, dizziness and adults may notice loss of coordination.

Not all providers are a good fit for everyone so it's important to find someone you work well with and that works well with your child. We suggest looking for a provider who has experience in pediatrics that specializes in Cerebral Palsy or whatever it is you are trying to work on. Don't assume they know everything. Continue to do your own research and ask others for referrals. A provider should be flexible when working with your child and adapting to what works best for them. Always remember you know your child best!

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JACE'S STORY

Our son, Jace, was born on April 29, 2012. He was born premature via emergency c-section due to fetal distress at Shawnee Mission Hospital. When Jace was born he had to be bagged and taken straight to the NICU. Approximately 12 hours later Jace began having apnea episodes. When these would occur, Jace would stop breathing and need physical stimulation to start again. After several tests, the hospital decided it was best that he be transferred to Children’s Mercy Hospital for further testing. Jace was almost two days old at this time.The day after Jace’s arrival at Children's Mercy Hospital the doctors had run numerous tests, including a head MRI. The neonatologist sat my husband and I down and told us that our baby had suffered a significant stroke prior to his birth. His right carotid artery and right subclavian artery were completely blocked. They estimated that it had occurred roughly one week before birth, based upon seeing the new pathways that had already formed around the clots.

The doctors then explained that Jace was at high risk for Cerebral Palsy and may never walk or talk. They also said that they weren’t sure if he could even see or hear. However, above all else, he was breathing on his own and his heart was in perfect condition, so eventually he would get to come home with us. Luckily for us this happened just 13 days later.

Those first few years were a whirlwind! Jace was on blood thinner shots, twice a day, for three months. During that time he had weekly blood draws to monitor his levels. After three months, one clot was completely gone and the other was diminished enough to have blood flow through it. Jace is now doing great! He has continued hitting his gross motor milestones, and at 10 years old he’s a very rambunctious boy. Jace’s therapists and doctors have been amazed by him and what he can do. He currently receives OT, PT and Speech while at school as well as additional OT and Speech at an outside facility to help monitor and keep him as close to typical as possible. Cognitively, he has some delays but continues to make great progress and move toward where typical children his age are.

Those apnea episodes Jace had after birth(which stopped shortly after arriving at the children’s hospital) were found to be subclinical seizures. He was seizure free from 3 days old until September 15, 2015. His epilepsy is now controlled by medication.

Despite everything he has been through he is the happiest and most determined child! You will rarely see him without a smile on his face!!

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SADIE'S STORY

Sadie was born in the VERY early hours of January 30, 2016 at Overland Park Regional Hospital via an extremely uneventful cesarean after she was in no big rush to come out half sunny side up and over a week overdue. Our first day went as planned, with no significant issues and plenty of family and friends present to share our joy. The next morning, our family care practitioner and earthly angel came to check on both of us. After determining we were both doing great, we began to have a social discussion while I was holding Sadie. We noticed simultaneously that Sadie turned a mild shade of blue and she immediately took Sadie to run tests, during which she was oxygenated through her bouts of apnea. We were beyond blessed to have a wonderful, efficient and extremely timely care experience after our immediate NICU transfer. This included an EEG, echocardiogram and an MRI that revealed Sadie had suffered a left middle cerebral ischemic infarct or more simply, a perinatal stroke, based on her brain development this likely happened approximately two weeks before her delivery. While the most common known causes of pediatric stroke are congenital heart defect, clotting disorders, or placental abnormalities, the majority of strokes occur without a definite cause being determined. Sadie falls into the latter category, although placental infarct is still a plausible option. We began therapy immediately in the NICU with speech and feeding therapists as well as physical therapists all giving us suggestions for home. Most recent studies are showing that early diagnosis, intervention and significant therapy can have lasting positive effects on long term outcomes as well as taking advantage of the ability for baby brains to rewire, a term called neuroplasticity. The area of Sadie’s brain affected is correlated to right hand function and speech. Currently, after significant therapy, she is showing only mild right hand weakness and is actually ahead of her age from a speech and cognitive development perspective. We are so grateful for the amazing care she has received to date and are overjoyed at watching her flourish as a typical child. We are grateful every day, but continue to work to ensure Sadie has access to whatever care she needs to give her the best opportunity at having the most limited effects possible from her stroke. My standard line, compiled from various sources since Sadie’s diagnosis is, “Prayer, modern medicine and REALLY hard work go a very, very long way.”

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CARTER'S STORY

This is Carter. He is thirteen years old, and had his first ischemic stroke on 08/23/21. He experienced difficulty speaking and left side paralysis. He was admitted to the ICU at our local children’s hospital where he received IV Heparin. He seemed to be improving, but on 08/26/21 he had a second stroke. He underwent a thrombectomy to remove two clots and was given TPA. Following surgery his symptoms did not resolve. Repeat scans revealed vasospasm, and he was again taken to surgery so that medication could be injected into the artery to stop the spasm and relieve his headache. What was supposed to be a relatively quick procedure turned into hours. As we sat in the waiting room, I knew that something wasn’t right. When the neurosurgeon came to speak with us, he said that the medication did not stop the spasm and that another clot was found. They attempted to remove the new clot, but couldn’t do so because removal would cause hemorrhage. There was nothing further they could do.

He was transferred to Cincinnati Children’s Hospital. The MRI scans were devastating! However, he could speak and had regained movement in his left extremities. As the physician reviewed his scans with us, she stated that his images did not correlate with his ability to communicate, move his extremities, etc. It was elected to leave the clot and not attempt further surgery. After a few weeks of rehabilitation he improved and was discharged home with outpatient therapies.

He was recently discharged from outpatient physical therapy, but continues occupational and speech therapies. He has mild left sided weakness, slowed processing speed and is often fatigued, otherwise he functions much like he did before the strokes.

He was diagnosed with Focal Cerebral Arteriopathy of unknown etiology; however, the cause of his strokes remains unknown. His carotid artery continues to be irregular and is nearly completely occluded. He is being monitored for MoyaMoya. We return to Cincinnati at the end of May for repeat scans.

We are forever grateful for God’s healing, the medical providers and therapists, family and friends, and the online support groups that have provided so much information!!

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KARTER'S STORY

My son Karter had a stroke in utero. While I was pregnant they told us that he had an enlarged ventricle and monitored it my entire pregnancy (they thought it was just excess fluid). It never grew, just progressed with his size, so they weren't too concerned. When he was born they did an ultrasound and kept monitoring him until he 6months. At that point they wanted an MRI to confirm or deny any assumptions. Mind you, at this time nobody had uttered the word stroke at all. So we went down to a children's hospital and they did the MRI. The doctor came in and said well, it looks like he had a stroke in utero. He most likely won't be able to walk, talk or interact like "normal" kids. At that point I was shocked, the only words out of my mouth were "will he play on the playground" and the doctor said probably not. I later asked if he needed therapy and he said to wait until about 1 year. So we went back home and I noticed he started having twitches. I called my husband and then parents and told them something was seriously wrong. We got into a neurologist that week and she hooked him to a 24 hour video EEG. After 4 hours she came in and had the nurses take off the probes, she said he has Infantile Spasms. We immediately started on ACTH. Poor guy went from about 17lbs to 30lbs in about 5 weeks. He was miserable and it was awful to see. That wasn’t working alone so he also started on Sabril. That eventually stopped the spasms because they turned into seizures. The neuro in our town kept saying, I've only had 1 kid I had to send to Cincinnati. It turns out that we had to go to Cincinnati as well. We got in and did a 4 day stay there to track everything that was going on so they could take that information to the board. About a month later the nurses called and he was approved to have surgery. It was important to get him in quick so he didn't fall any more behind developmentally. His surgery was scheduled about 3 weeks later. He had surgery at 10 months and has been in therapy for speech, orthopedic and physical since then. He is walking, talking and playing with kids his age. He is a little behind, but he has come so far and we know he will continue to progress! He is doing amazing things in the short 3.5 years he has been on this Earth and is truly a warrior.

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ELIJAH'S STORY

Elijah suffered a Neonatal Acute Left Cerebral Stroke around the time of delivery, but we didn’t find out about it until he was 3 ½ months old.

During our time at the hospital after he was born, we had the usual specialists coming in and out to check on Elijah, and for the most part, everything was great and normal. Elijah’s left eye was not responding to the light tests, and he had torticollis with a lean to the left. We were told this was all likely due to his position during labor (he ended up being delivered via C-section after 32 hours of labor + 4 hours of pushing with no progress because he was posterior and lodged in the left side of my pelvis).

Once we left the hospital, we began appointments with ophthalmology for his eye and physical therapy for his torticollis. Elijah had hyphema in his left eye—which is typically caused by trauma (say like being lodged in my pelvis for hours while I was trying to push him out). We were prescribed steroid eye drops and dilating eye drops, and by our next appointment it had cleared up! We also started physical therapy to work on doing some stretches for the torticollis; these PT visits were video calls.

At Elijah’s 2-month checkup, his pediatrician recommended we see his physical therapist in person because the torticollis didn’t seem to be improving. At our first in-person visit with his physical therapist, she asked some clarifying questions—particularly about a noticeable left turn preference in his head and also with his eyes. She recommended taking Elijah to a neurologist to have him checked out. We thought for sure they wouldn’t find anything abnormal, but the neurologist wanted to do an MRI to check for evidence of a stroke. We honestly didn’t even know that was a possibility. The neurologist told us we shouldn’t see many, if any, cognitive delays due to the neuroplasticity of the brain, especially because Elijah is so young, and his brain is still developing. Physical therapy has now been focused on stroke recovery.

When Elijah was about 7 ½ months old, we started noticing something new. He would be doing something typical (playing, getting his diaper changed, relaxing, etc.), and his right arm would abruptly shoot out and his right hand would open. This would happen in clusters, so in one episode he would have about 5 of these “twitches” within a minute or two. They didn’t seem to bother him, but it kept happening. It almost looked like he was being startled, but there hadn’t been any loud noise or anything that would actually startle him. After about 2 weeks of noticing this, we decided to try to catch it on video to send to his doctors. His physical therapist through Early Intervention told us we should send the video to his neurologist. She said, “it could be nothing, but it could be seizure activity”. His neurologist ordered an EEG for us to go in to have it checked out, and sure enough—they found “abnormal activity”. Elijah was having Infantile Spasms. The neurologist explained we would start Elijah on a heavy dose of steroids for 2 weeks and then go to the hospital for an overnight, 24-hour EEG to see if there was improvement. This steroid treatment has about a 50% success rate, which didn’t leave us feeling too optimistic.

The week we went in for the overnight EEG, we hadn’t seen any spasms for 4 days in a row. We were very CAUTIOUSLY optimistic. After Elijah had been hooked up with all the wires for a couple hours, the neurologist came into our room and told us things were looking really good so far. They didn’t see any of the activity they had seen on the previous EEG, but we would have to wait until the next morning to know for sure. The next morning, they came in and told us there was no hypsarrhythmia, no evidence of spasms, and no clinical events!!!!!!! We could seriously feel a huge weight lifted almost immediately. We couldn’t believe the treatment worked!

At our follow-up appointment with the neurologist, he prescribed an anticonvulsant that Elijah would be on for the next year or two. Because of the stroke, he is at a higher risk for seizures (especially since he already had the infantile spasms), so we were really relieved to know he’d be on the new medication because we didn’t want to take any chances.

Elijah has a “Visual Field Defect”—meaning the right side of both eyes basically has a blind spot which affects his peripheral vision. We won’t know the severity of it until he is older though.

We have seen some motor delays due to the right-sided weakness, but we continue Physical Therapy appointments every other week and practice daily what we learn at those appointments. We just finished a 6-week CIMT program (Constraint Induced Movement Therapy)—which showed awesome improvements with Elijah’s right hand/arm.

We are beyond thankful for our sweet Elijah and so proud of how far he’s come, and we will continue to do whatever it takes to help him continue to grow and thrive. No matter what his future holds, he will be surrounded by people who love and support him.

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