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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BIRDIE JUNE'S STORY
My daughter Birdie June was born 4-11-2020. My pregnancy was perfect. I went into labor at exactly 39 weeks. Labor progressed slowly, despite her being my 4th baby. Once she was born, I noticed something was off. Dr's insisted she was fine. Finally a nurse took her to check her and realized she wasn't breathing. She was immediately intubated and put on an oscillator. She was on all the support our hospital could give her and she was still struggling to survive. They said her only chance at survival would be to be ok ECMO. The only hospital with that equipment was 3 hours away. They couldn't send a helicopter due to storms so they sent an ambulance. They weren't going to take her due to how sick she was and not believing she'd survive the trip. We told them to try anyway. They got her to Kansas City Easter morning and put her on Ecmo. She had her stroke 24 hours later. She had a rather large stroke on the right side of her brain. She had small seizures at first and one large febrile seizure at 1 year. It took us a few months to notice deficits. She is mentally and physically delayed by a year or so. She just turned two and cannot talk, walk, crawl, or comprehend things a child of similar age. It took her a very long time to eat solid food. We have therapy 4 days a week and are also doing all we can at home. Scooting on her bottom is her main way of getting around and she has recently learned to pull up to her knees . She does have asthma and has been in and out of the hospital non-stop it feels like. I'm not sure if that's related or not. She also has pigment mosaicism which they believe was caused by her stroke. She is an incredibly strong and special little girl. Her stroke has made our lives significantly harder but it's given me a whole new purpose and I know it will make her such a strong woman one day.
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KYNLEE'S STORY
Meet Kynlee she is 7 and in the 1st grade. She suffered a stroke in utero that affected her entire left side of her brain causing right side hemiplegia and cerebral palsy. She was lucky and diagnosed at 2 days old when she started having seizures while still in the hospital. The seizures ended up being partial seizures caused by the damage from the stroke. Things were very scary back then and we did not know what to expect. We were told to expect the worst because her stroke was so large and the damage was so bad that she may not ever walk, talk, crawl or do anything for herself. We immediately started testing to see what happened and why and found she had Factor V Liden, a blood clotting disorder that likely caused the stroke and will be a risk factor for future strokes forever. At 5months old she developed a 2nd type of seizure disorder called infantile spasms that set her even further behind. After 7 years of very intense therapies we are happy to say that she is doing all the things that we were told she wouldn’t and more. She has been seizure free for several years controlled by medication. She was up to 8 therapies a week at one point that included everything from music therapy, behavioral therapy, PT,OT,Speech to multiple hippo therapies with the horse. We have scaled back as she has gotten older but still attends several a week to keep her moving forward. We are so proud of the smart, caring, stubborn, strong willed warrior princess she has become! She loves anything Disney, music and playing with her Mastiff/ American bulldog mix Kash who is the beast to her beauty. She also enjoys anything outside from watching her older brother Kole play travel baseball to just playing at the park or in the yard or riding her monster truck power wheel and being a typical 7 year old. Kynlee is a pediatric stroke survivor!
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KYNLEE'S STORY
Hey everybody! This ray of sunshine is Emma Alyse. She's right at 1 1/2 years old. She was 6 months old when we noticed her favoring her left side, no right side movement and stiffness, and contracture development of her right hand. At 7 months old we received confirmation of a left sided stroke affecting all lobes, except the occipital lobe. Shortly after the diagnosis we noticed spasms, tremors, and jerking movements on the affected side. She would stare off, not blink, not communicate, and then slowly come back to. These episodes lasted about 5 minutes total. My husband did a great job of videoing these episodes for confirmation and proof. Based on the video it was determined she would experience cluster focal seizures and was put on 2 medications: Trileptal routinely and Diastat for emergency situations. She attends physical therapy, occupational therapy, and speech therapy. She's learned to chew foods safely and loves all the veggies! Within the last month she has conquered a major milestone--scooting. She's picked it up so quickly her new nickname is Scooter. Currently we are learning to stand, pull up, and take assisted steps with an adaptive walker at PT. We've also been working on using a transition nipple and cups for thinner liquids at OT and ST. Emma loves being outside--swinging, riding the golf cart, riding on the tractor with daddy, attending Dixie Youth baseball games, and so much more! Emma is so strong and embodies the word warrior. She has the purest spirit and is unbreakable. Through it all she continues to smile and live her life with gratitude and happiness! This little girl makes her mommy and daddy so proud!
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CHLOIE'S STORY
This is Chloie. Chloie had a stroke on January 12, 2016. She was 9 years old. She had no prior health issues, she was healthy. She was at school when it happened in gym class and told the teacher she felt dizzy which they excused her to the nurse. She then passed out in the hallway and being unresponsive they called the ambulance. She was rushed to the local hospital where they airlifted us to the children's hospital in Iowa city. There it was confirmed chloie had an ischemic stroke. She lost usage on her right side and slurred speech. She spent a total of 2 months in the hospital between icu, children's floor and then transferred to a rehab center. They took her out of school for the rest of the year and did intense rehab. She has to learn how to walk and talk again. We did therapy for about a year when they said that was it. That was as best as she was going to get. We never got a real reason what caused her stroke. She is on blood thinners and has had some other health issues since her stroke. She is now 15 years old! Her hand still doesn't work correctly and her foot drags and leg gets tired easily and she has some learning disabilities but she does not allow anything to hold her back! She is amazing in every way!! Here is a picture of Chloie then and now!
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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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PEYTON'S STORY
This is our warrior, Peyton, who is almost 18 months old! She was diagnosed with a ventriculomegaly (extra fluid in her brain ventricles) at 22 weeks and shortly after birth, we learned she suffered 2 strokes. Her first one at 22 weeks and the other at birth leading to a breathing tube and 21 days in the NICU. She was transferred to another hospital and put in a special 3 day cooling system which took her core temperature to around 92 degrees to slow any potential brain damage. Talk about a long 3 days before we actually got to hold our baby for the first time! Flash forward, we go to physical therapy and speech therapy weekly and get to watch a very happy, chatty baby grow and grow. Most recently, we got some SMO (Supramalleolar Orthosis) braces that will help us learn to walk more confidently so she can chase down any good shoe sale. Ha. Everyday, she becomes more and more animated and we love having her in our life.
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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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QUINN'S STORY
My son, Quinn, was 9 years old when he had his stroke. He was a perfectly healthy kid when it happened, and it happened at the start of the pandemic in April, 2020. 2020 was rough for many people, for many different and terrible reasons. It was very rough on our family and Quinn too. Quinn was in and out of the emergency room a few times as well as multiple neurosurgeon, neurologist, genetic, cardiology appointments, and a million different diagnostic tests. Quinn was basically a human pin cushion for about a year. We traveled to several different hospitals in the eastern United States for answers. Quinn was in a neck brace for almost all of 2020, which was difficult when he returned to school in the fall of 2929, before he was finally released with light restrictions at the very end of the year.
Quinn is now 11, and an accomplished figure skater and a straight A student. He is doing amazing. He continues to have light restrictions and is on medication, but overall, he is doing phenomenal.
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HARRISON'S STORY
Harrison is a typical 6 year old (7 on May 29th) boy and as active as they come! He plays soccer and tball and loves to be outside. Looking at him now, it's hard to believe he suffered a Cerebral Venous Sinus Thrombosis stroke when he was 3. We found out it was likely caused by a prothrombin factor II gene mutation (making him clot too much) and an iron deficiency. Cincinnati Children's Neurology warned us that they were uncertain what Harrison's outcome would be because CVST is a rare form of a stroke and each patient varies greatly in their recovery. He spent 3 weeks total in the hospital between two stays. Harrison's road to recovery included years of therapies. He quickly started to walk, talk and eat again. He worked so hard and made such tremendous progress that you would never know he's a stroke survivor. Harrison has a few small lingering issues that we are working on but he doesn't let any of that slow him down! He has dreams of becoming a mechanic and monster truck driver.
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BEAUDIN 'S STORY
This little man is a fighter! Beaudin suffered a perinatal stroke right around the time of his birth, and, as a result, suffers from complications of hemiplegic cerebral palsy. Just don't tell him that because he's never let it slow him down. Beaudin is a smart, clever, jubilant, and determined kiddo who has never shown any signs of backing down from a challenge.
After delivering our baby boy at 39 weeks and 4 days our world was flipped upside very quickly. The NICU team was called in and decided to take Beau for further eval. He was just about to come back upstairs as he was doing much better, when he stopped breathing in my husband's arms. This quickly got us a NICU room for further evaluation. We were first told he had sleep apnea and was treated for that for four days. After going on a roller coaster of ups and downs they finally did an MRI. I remember the entire NICU team stopping rounds and all coming to our room, we knew it was not good. They told us our son had a stroke and the whole right side of his brain was affected. As first time parents we were terrified. We had no clue babies could have a stroke and we had no clue if our baby was ever going to come home. That day was by far the hardest day as we still did not have all the answers and we had no clue where to turn. By the next morning we were transported via ambulance to the nearest Children's Hospital for further assessment. Once we got there every test was run again and it was confirmed he had had a stroke. What the other hospital thought was sleep apnea was actually Beau having seizures. He was quickly placed on meds to control seizures and after 10 days in the NICU we were sent home. Many doctors appointments were scheduled for us and we faced many unknowns ahead. We are now 2 ½ years into this journey and Beau is such an amazing little boy who has taught us so much! Between physical, occupational, and speech therapy every week, braces on his legs and arm, and his ever changing treatment plan he is able to roll with the punches and live his best life!
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GIDEON'S STORY
Gideon was born at 34 weeks and at first only had issues regulating his blood sugars. Within the first 24 hours we started noticing some full body twitching and started questioning the nurses, as my gut was telling me something was off. One amazing nurse trusted my gut and sat with my husband and I and just watched him. Once she saw what we saw it was a blur of tests which ultimately led to the discovery that he was having seizures which was caused by a brain bleed caused by a left intraventricular hemorrhagic stroke he likely had in utero. We were transferred to Children's Mercy and spent 30 days continuing tests and strengthening him up. Being that he was a newborn there were no definitive answers or certainties on how this would impact him later, it was a waiting game. He is now 4, full of energy, healthy and our perfect warrior. There is no challenge presented to him that he isn't ready to attack head on.
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ALEXIS'S STORY
This is Alexis, she will turn 1 year old on May 14th. She has a twin brother and 2 other brothers who are 2 and 8. Like many others her strokes went unnoticed after birth. She was born at 35 weeks and spent 26 days in the special care nursery to eat and grow. After she came home, things were okay for a couple weeks then she progressively got more and more fussy. She cried for hours at a time and hardly slept. At her two month checkup I brought my concerns up to her doctor who agreed her level of fussiness wasn't normal. He ordered a CT scan and that is when we learned about a stroke. After getting those results we were sent up to be admitted at a children's hospital. Lexi then underwent an MRI where we learned she suffered bilateral strokes, probably early on in utero. There was significant damage to both sides of her brain and narrowed arteries to the right side. She also has cystic encephalomalacia and high risk of seizures due to constant spikes revealed in an EEG. The diagnosis was devastating. Our only little girl wouldn't develop the same as her twin. At first we couldn't see any effects of the strokes besides her irritability. She started OT and PT almost as soon as we came home from the hospital. As this past year has gone on her brother Carter started rolling, crawling, pulling up on furniture, and eating table food; Lexi hasn't. It's hard to see the delay but what she has done over this past year is amazing. She has gone from constantly crying to having the biggest smile, being fussy to giggling, sleeping only a couple broken up hours a night to sleeping 8 to 9 hours a night and she is slowly starting to gain use of her arms and hands and enjoys being in her stander. Yogurt and fruit purees have become her favorite. This first year has been so hard on all of us.. she is the strongest of us all though and I know she will continue to make progress as time goes on. While she may not hit milestones at the same rate as her twin, she will get there on her own timeline. I have a strong little girl on my hands
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CONNER'S STORY
Conner bee is 11, and is a perinatal stroke survivor. His stroke was small but has affected everything. He was born after an emergency c-section due to breech position and fetal distress after 9 hours of labor, and his whole head was bruised due to the pressure from contractions. He had apnea episodes that were labeled as due to prematurity (he was a 35 wk baby), but looking back it was more likely they were seizures. He was severely delayed as an infant in gross and fine motor and oral motor skills. We were told it was like he'd had a stroke, his left face was droopy and his left hand always clenched and pulled up by his side. They were joking though... until an mri as a toddler (his mri was clear originally, at 7m, the damage was the size of a grain of rice but it disrupted a lot of function) showed a small left side bit of damage. He is diagnosed with left side hemiplegic cerebral Palsy, severe intractable epilepsy, and autism. He is 11 now and doing well, but is still delayed about 3 years.
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SOPHIA'S STORY
Sophia was born with an Arteriovenous Malformation (AVM) in her brain. We had no idea it was there until it spontaneously ruptured in her sleep when she was almost 6 years old. She woke up with a horrible headache and left sided weakness before falling unconscious a short time later. She also suffered an ischemic stroke 2 days later while in a medically induced coma. After all the damage to her brain and multiple surgeries, she was left with only the left hemisphere of her brain functioning. But she is so strong and full of joy, doing so much more than we ever thought possible 4 years ago! She loves playing basketball, barbies and Minecraft, all of which she does one-handed due to her hemiplegia. She doesn't let her disabilities steal her happiness and is an encouragement to so many. We can't wait to see what expectation she'll exceed next!!
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BREANA'S STORY
I would like to share my story with others. My daughter had a stroke at birth, she was born at 38 weeks, following a normal pregnancy. When she was born she was whisked away to the NICU for low blood sugar, very shortly thereafter we went for a visit and while holding her she stopped breathing, and her eyes rolled back in her head, then she would quickly recover. This happened four separate times before a nurse finally witnessed the incident, and called over a doctor. Immediately they took her for an MRI, and discovered a Level 4 Intracranial Hemorrhage concentrated on the left side of her brain (Occipital Lobe & Temporal Lobe). The incident we had witnessed was identified as a seizure and she was immediately placed on seizure medication and sedated. We spent 3 weeks in the NICU , undergoing many tests and procedures, and being told that the long term prognosis was just an unknown path, we would need to just hold tight and wait to see how she developed as time went on. She came home on phenobarbital and an apnea monitor for the first year of her life. We weaned off of the medication after one year and thankfully had no further seizures. She had her last follow up MRI at 24 months old, and we discovered that she has an area of encephalomalacia in her Occipital & Temporal Lobes. Which just meant we needed to watch closely as she developed, and especially in the area of vision issues. Now after much time, love, worries, tears, joy Breana is 20 years old and has no long term effects whatsoever. We are very very fortunate and I hope this story helps someone else who might me going through something similar. As a 21 year old first time mother I had no idea this could happen to your baby, and had very little places to turn to for HOPE and hope is what was badly needed.
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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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