pediatric stroke

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    Funny interaction

    Dealing with the medicaid office can be stressful. I had to call them for the first time in my life but certainly won't be the last, but I thought I would share a little snippet of the conversation to bring a little bit of joy, cause I sure giggled about it later:

    Worker: are you disabled?

    Me: yes.

    Worker: How long have you been disabled?

    Me: since birth.

    Worker: *shocked* excuse me? Since birth?

    Me: *confused by reaction* yes. Since birth

    This was genuine shock, the worker wasn't trying to be mean or judgemental. You would have thought that she never met someone that was born with their disability... Maybe she hadn't. Maybe she was surprised how calm and matter of fact I was and not shy about it. I don't shy away from facts. Still, the experience of it was so funny to me. I hope it brought a little bit of a smile to your face
    #CentersForMedicareAndMedicaid #Disability #MentalHealth #HealthInsurance #funny #cerebalpalsy #Stroke #PediatricStroke

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    Community Voices

    An Open Letter From A Mama Whose Child Became Medically Complex After Adolescence

    Yesterday two of my three children went back to school for the 2022-2023 school year. We did all the things to prepare for the first day: schools supplies, meet the teacher, picked clothes out, talked about what they looked forward to and what they were fearful of.

    I walked them to school (we live a few houses away), hugged each of them and waved goodbye reassuring them they were going to have a great day. Then I turned around and headed home.

    On my walk I was flooded with the feelings my heart had been storing. My other child will not be returning to school with his siblings because just 11 months ago he suffered a severe hemorrhagic stroke caused by a ruptured aneurysm at the site of an unknown arteriovenous malformation within the left portion of his brain. That was a lot of words right?!?! Yep, that’s what I thought too when it all happened.

    The aneurysm that led to a catastrophic bleed resulted in a brain injury we could have never foreseen. See that’s what happens with rare diseases; there is not enough research or education for people to be aware they even exist. Even when the result is lifelong recovery to a degree that is different for each case.

    Some parents are informed pre-birth about genetic anomalies or diseases because of genetic testing or ultrasound results. Some find out after the birth of their child takes place or within the first few months because of difficulties or symptoms. We were completely unaware there was a ticking time bomb tucked deeply away in our son’s brain just waiting to explode.

    Having your child acquire their disability and become medically complex after their adolescent years is… well, not something words can describe or that I would wish upon anyone. The grief is heavy and the learning curve steep.

    I have joined groups of other parents with similar diagnosis’s only to be utterly discouraged by seeing so many others’ miraculous recoveries or much shorter timelines.

    I have also built community with other moms who know all too well what it is like to have a medically complex child. I feel more support in these relationships, but still a hole and lack of relation when it comes to the stage of life we are in and grieving what we have lost.

    I cannot care for my now 10 year old the way I could if he was 4 or 6. He is just too big. I need to use a lift for transporting and a slide sheet to move him in bed. I cannot pick him up and move him from place to place nor can I easily change him.

    The advocacy and focus is also different. They advocate to embrace who their child is and the fact that they are no less and their needs are human, not “special.” WHICH IS ALL COMPLETELY, 10000 PERCENT ACCURATE AND ON POINT!!

    I’m just not there. I’m not in that place or space. My child, at this time, is no longer capable of expressing who they were or doing the things they once did. My advocacy is more towards awareness about grief, sharing space and about his condition.

    Only a parent who has experienced their child acquiring a brain injury, through disease or trauma, later in life knows the mourning and pain that accompanies every old photograph, every childhood video, every backwards milestone, every part of moving forward your other children experience without their sibling, every word not spoken, every smile not taken, every dream not lived every story not shared.

    My goal here is not to discredit other parents’ grief or pain they experience with their children’s disabilities. Or their voice and message. Mine is different, not better or worse.

    I grieve what was, what would have been and what could have been. Others grieve what would have been and what could have been. Both are still grief that needs to be explored and dealt with. Both have experiences that are valid and real.

    The intent of my writing is to shed light so that when comfort or advice is shared, it is done so with knowledge and wisdom. When you approach a mama to a medically complex, rare disease, disabled child and share words, please be cautious to not put her in a stage of life she is either not prepared for or will never reach. If you do so, those words become a poison that attacks her heart and mind instead of a balm that soothes her soul. #BrainInjury #TBI #avm #PediatricStroke #RareDisease #disabilityparent #MedicallyComplexChild #MedicallyFragile #medicalmama #medicalmom #Caregiver

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    Community Voices

    I am new to The Mighty

    Hi, my name is Alex Hatch. I had a stroke when I was 10 & I never fit any of the normal molds with my disability. If anybody has ever felt this way please reach out to me. I would love to exchange stories with you & let you know that you are not alone.

    #TheMighty #mystory #Stroke #PediatricStroke #advocate

    1 person is talking about this
    Community Voices

    Visit website for recently discovered PAN Vasculitis.

    This type of Vasculitis is thought to affect 1/3 of those affected by PAN Vasculitis. The genetic links to what is termed DADA2 were discovered in 2014. Very interesting story about the discovery and the hundreds of patients (most young children), families, physicians, and researchers internationally affected. There is much interest that other forms of Vasculitis may be genetic as well. New cases of DADA2 are discovered regularly.

    This new field may be of interest to many current Vasculitis patients and medical professionals. Read the story of how a Nashville doctor discovered that two of his daughters are affected and his subsequent work in medicine and advocacy around the world. Read about the interesting patients, families and researchers involved and how they advocate for the benefit of all. This is inspirational for all of us suffering with rare diseases.

    New research appears often - symptoms range widely as do the age groups and types of genetic abnormalities affected. There are both early onset and late onset disease.

    The website for dada2.org is http://www.dada2.org. There is a group for patients and families on Facebook. #DADA2 , #RareDiseases , #Vasculitis , #GeneticDisorder , #GeneticCounselors , #GeneticDisorder , #GeneticTesting , #Rheumatology , #PolyarteritisNodosa , #PediatricStroke , #PediatricHypertension , #PediatricLiverDisease , #ADAdeficiency , # adenosine deaminase2 deficiency

    Community Voices

    Snow Therapy!

    <p>Snow Therapy!</p>
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    Community Voices

    Medical Parenting and Regret

    <p>Medical Parenting and Regret</p>
    Community Voices
    Gaby Medeiros

    Advice for Teenagers With a Chronic Health Condition

    When I was 16 years old, I woke up one morning to find myself in a very unsettling state. I was disoriented and although I knew something wasn’t right, I couldn’t help but fall in and out of consciousness. And when I was conscious I would laugh at myself because I thought I had forgotten how to walk. Panic never set in, not until I heard my voice, that is. When I opened my mouth to call for help getting up, I didn’t hear my voice, I heard someone else’s, someone who was old and frail. A weak and distant “Mom” sound came out of my mouth, but it wasn’t my voice. That’s when the panic set in. From the moment I heard a nurse in the emergency room tell me that I had a stroke, to the day I was diagnosed with a rare inflammatory disease called Takayasu’s arteritis, and every day since then, I’ve learned many things. Life isn’t something that should be taken for granted. Although it sometimes feels like the end of the world, it isn’t. Even though what you are going through sucks, there are worse days ahead of you. But rest assured, there are also amazing days. Days you’ve never even dreamed of. I can’t go back in time and tell myself all of these things, but what I can do is post my advice on the big ol’ internet and hope that this brings clarity and comfort to someone who may need it. No one can even begin to understand what you are going through, but just remember you are never alone. 1. It’s going to shock you. It’s going to shock everyone. You’re going to want to scream and cry and let it all out. And that’s OK. Before you can begin to heal, it is important to get all your anger and emotions out. 2. Every day is going to be a challenge. There’s nothing you can do but face it head on. You are going to get frustrated with so many things, but power through it. You will prevail. 3. You are going to appreciate so many ordinary things you never thought you’d miss. For me, I was dying to get back to school to take my finals. I realized how lucky I had been to be able to go to school and even though I hate tests, I wanted nothing more than to sit in a hot, sweaty gym in the middle of June with all my classmates and sit through hours of testing. I wanted to be “normal.” 4. You may feel like a freak, but trust me, you aren’t. You are just an ordinary human dealing with very unordinary things. You have a disease, but you are not your disease. 5. People will tell you how brave you are. Know that they are not lying. What you are going through is something that no one should ever have to face. Old, young, female, male, good or bad, no one should have to know what it’s like to emotionally and physically feel like you’ve lost control. And you are handling it to the best of your ability. For you, bravery is not an option, it’s what you have to do, but that doesn’t make your bravery any less admirable. 6. You may experience memory loss from time to time. You will survive. Things will get better with time. 7. Depression and anxiety are easily triggered by traumatic experiences. Never be afraid to talk to someone or seek help. Your recovery is important and the best way to get better is to feel better. No one can make you go, it has to be when the timing is right for you, but from my experience it might just be better than medicine. 8. Rehab. Rehab. Rehab. You might want to quit, but don’t. By quitting, the only person you are hurting is yourself. Do your future self a favor and put in the hard work now. The more time that passes, the harder it’s going to be on you in the long run. 9. Keep your sense of humor. You’re going to need it. 10. You’re going to see a lot of doctors and they are going to ask you a lot of personal questions. Be ready to answer them honestly and without shame. Never be embarrassed to tell your doctor if you’re sad or how many times a day you peed (trust me, this will come up). I promise you they have heard and seen worse things than whatever it is you have to tell or show them. It’s their job. Listen to your doctors and talk to your doctors. They only want the best for you. 11. You’re going to get sick of all the appointments, all the tests and definitely all the medications, but someday it may all be worth it. A certain satisfaction and pride in yourself comes along when you finally hear good news, or when you can finally stop taking that medication you were prescribed and have always hated. 12. You are going to know far too much about the medical world, much more than you ever cared to know. You will learn the names of different medications and what they are used for, you will be an expert at dealing with pain, you will know the right questions to ask and what an MRI looks and sounds like from the inside. Take pride in that knowledge, although you are struggling, you are learning so much. 13. You are going to be OK. Whatever life throws your way you will deal with it. And you will be a better person for it.

    Jamie Jonz

    To the Mom Who Just Heard the Words, 'Your Son Had a Stroke'

    Dear Jamie of 2009, This afternoon you are going to get hit with news that will drop you to your knees and take your breath away. This afternoon you will find out your son, Aidan, had a stroke. You will hear those words: “Your son had a stroke.” I know you thought as long as you guys got through his heart surgery, everything was going to be OK. It will be OK. Just not how you thought. So much is going to change. There are so many things you need to know. You will be sad. You will cry. You will be angry. Your life will be filled with doctor’s appointments and therapy. You will do everything you can, and your son’s life will be better for it. Trust your instincts. Trust yourself. Know you are not perfect, but you are doing your best. Know the doctors do not know everything, and frankly, there are no easy answers. Although things will come harder and slower to Aidan, every accomplishment will be that much sweeter. Celebrate those victories. Try not to let the setbacks knock you down. You will blame yourself. And you shouldn’t. There is nothing you could have done. Let go of the guilt. It does nothing for you or Aidan. You will get completely caught up taking care of Aidan and everyone else around you. Take care of yourself. If you don’t, you will never be able to take care of anyone else. You will lose friends and family members along the way, but you will make many new friends. Friends who have children with disabilities. Many of them parents of children who have had strokes. Some of them you will never meet face-to-face, but they will still touch your life daily. You will hear stories of children who have had a stroke and lose their life. You will hear stories of children who had a stroke and go on to accomplish so much. You will worry constantly what the future holds for Aidan. Don’t. It doesn’t help. He will continue to grow and surprise you, and you won’t know what the future holds until you get there. Above all, love your precious baby who is a complete miracle and gift. And don’t forget to love yourself. From, Jamie of 2016 A version of this post originally appeared on Pediatric Stroke Warriors. The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

    Kaysee Hyatt

    The Moment We Found Hope Again After My Child's Stroke

    There is no memory as vivid to any parent as the day they get to meet their child for the first time. It’s the day all the anticipation comes full circle and they hear their child’s first cry into the world pierce the silence. The complications towards the end of my pregnancy made her cry even more monumental for me and even more reassuring that our beautiful girl was here. I finally got to hold her, see those beautiful red curls and soak in those 10 tiny toes and fingers — my little sunshine mixed with a hurricane was here. Those first weeks home were as beautiful as they were difficult. While most newborns sleep, our daughter had difficulty, sleeping no more than a two-hour stretch at a time. While most newborns build an appetite and yearn to eat, our daughter would eat for minutes at a time and then cry with frustration and discomfort. We were at a loss and had many questions, but we were assured at each of her appointments that she was healthy and this phase was all a part of being an infant. As weeks turned into months and sleep and eating continued to prove difficult for her, we had many appointments. There were many discussions on colic, acid reflux and allergies. We sought support from lactation specialists, therapists trained in reflux and made countless morning calls to her pediatrician to be seen that day after a horribly hard night. All attempts proved futile with the constant reassurance that she was healthy. As my daughter began taking notice of toys and figuring out her world, I started to notice that she never unclenched her left fist. I had to try with all my might to get her little thumb out of her fist to introduce toys to her left hand or to clip her nails. It was strange to me, but I didn’t have enough knowledge to be overly concerned. At first, we believed she was born to be a righty. When she continued to disregard her left hand in play, I became scared that her arm or a nerve may have gotten hurt during delivery. It was at her six-month checkup that her pediatrician agreed with my concern. Something was preventing her from using both hands. My concern of injury was met, but he added to my concern by sharing the rare possibility of a stroke — words that, no matter how hard anyone tried to explain away the rarity of it, I couldn’t get out of my mind. A child having a stroke — how is that even possible? We had a month of waiting to be seen by a specialist who performed a sedated MRI. We had to wait what felt like an eternity to get those results. In that time I had poured over Google to scour for every possibility and every relatable story. I drove myself to the brink of anxiety, questioning myself, my pregnancy and any new behavior my daughter showed. I was lost, overwhelmed and scared. Friends and family tried their best to reassure me, to help calm my feelings by saying everything would be all right and that there must be an easy explanation. Kayla’s daughter drawing on paper When the call finally came and the doctor shared the results from the MRI, there was nothing easy about the explanation. Her words came across in slow motion, indicating the results reflected a stroke. We had made an appointment to talk face-to-face and go over her scans, but the call left me in shock. The relief I had hoped to feel, after months of knowing something was wrong, wasn’t there — only new questions and huge emotions to struggle through. The following week we sat together huddled over a computer screen with the neurologist, scared and unsure of what all this meant for our little girl. The doctor began the discussion by saying that a stroke can happen at any age and that the risk during the newborn period happens to be the highest risk throughout our lifetime. One out of 4,000 newborns, and my little girl was that one. The room began to fill with words and terms: hemiplegic cerebral palsy, ischemic in-utero stroke, feeding therapy, disability, adaptive equipment. As much as we braced ourselves and as hard as we tried to retain it all and build a plan, the moment was surreal. The doctor began to show each scan from her MRI — different angles and “slices” of images taken of my daughter’s brain. There were more terms and more uncertainty until she paused on one image — an image from my daughter’s chin up to the top of her head. It wasn’t the dark void in the image on my daughter’s right side of her brain that I focused on anymore. Now I could see the outline of her little face, the way her chubby cheeks left an outline even in an X-ray, and there she was. In that moment among the fear and uncertainty, I was grounded, brought back to my senses that no matter what we could come to learn about this diagnosis, it did not define my daughter. She was still right there. My little sunshine mixed with a hurricane. It’s been three years, and not only have we learned so much about stroke, but we also learned that we have to take it one day at a time. To say it has been easy would be a lie. To be completely transparent, there have still been moments of feeling lost in emotion and worry. It’s human and it’s part of being a parent. I talk to families often that ask when it will get easier. That’s an answer that’s different for all of us. For me, I remember that moment in that room where I found my grace again, and I hang on to that as tight as I can knowing it’s going to be OK. To find out more about pediatric stroke or to connect with other families in support, visit pediatricstrokewarriors.org. Kaysee’s daughter and husband The Mighty is asking its readers the following: Share with us the moment, if you’ve had it, where you knew everything was going to be OK. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.