![Pediatric Epilepsy Surgery Alliance](/img/default-banner.jpg)
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- Просмотров 302 321
Pediatric Epilepsy Surgery Alliance
США
Добавлен 28 дек 2012
Our mission is to enhance the lives of children who need neurosurgery to treat their seizures. We do this through our impactful programs, services, and research before, during, and after surgery.
Info + Resources: Our website contains information, downloadable guides, videos, and evidence-based knowledge to help you navigate your child's epilepsy surgery journey.
Parent Support Navigator Program: Our support navigators are trained in evidence-based peer support practices. They speak English, Spanish, French, Portuguese, Farsi, and Hindi.
Surgical Evaluation Travel Scholarship: Up to $1,000 in reimbursed travel costs for families who seek an epilepsy surgery evaluation for their child more than 50 miles from home.
School Training: We help school teams understand your child's strengths and challenges. after epilepsy surgery.
www.epilepsysurgeryalliance.org
Facebook: @PESAlliance
Instagram: @PESAlliance
Twitter: @PESAlliance
Info + Resources: Our website contains information, downloadable guides, videos, and evidence-based knowledge to help you navigate your child's epilepsy surgery journey.
Parent Support Navigator Program: Our support navigators are trained in evidence-based peer support practices. They speak English, Spanish, French, Portuguese, Farsi, and Hindi.
Surgical Evaluation Travel Scholarship: Up to $1,000 in reimbursed travel costs for families who seek an epilepsy surgery evaluation for their child more than 50 miles from home.
School Training: We help school teams understand your child's strengths and challenges. after epilepsy surgery.
www.epilepsysurgeryalliance.org
Facebook: @PESAlliance
Instagram: @PESAlliance
Twitter: @PESAlliance
Feelings Before Epilepsy Surgery
#epilepsysurgery #epilepsyawareness #seizures #epilepsy
A teenager in our community, Aashna Garg, shares a story adapted from her experience about making the decision to have epilepsy surgery through this heartfelt video she made for us.
A teenager in our community, Aashna Garg, shares a story adapted from her experience about making the decision to have epilepsy surgery through this heartfelt video she made for us.
Просмотров: 84
Видео
The Comprehensive Educational Evaluation - An Introduction
Просмотров 93Месяц назад
In this video we introduce you to the comprehensive educational evaluation and why it's important. The Brain Recovery Project is now the Pediatric Epilepsy Surgery Alliance. Go to www.epilepsysurgeryalliance.org to learn more. #IEP #specialeducation #epilepsysurgery
Understanding Executive Function
Просмотров 302 месяца назад
#executivefunction #occupationaltherapy #epilepsysurgery #seizures Executive function (EF) skills impact a broad range of functional developmental outcomes. For children who have had epilepsy surgery, executive functioning challenges may impact how your child manages their academic success, social integration, motor coordination, independence in self-care, and community engagement. Dr. Lindy of...
Understanding Sensory Processing and Self-Regulation
Просмотров 934 месяца назад
Sensory processing is a term that is commonly used but just as commonly misunderstood. For children who have had epilepsy surgery, sensory processing difficulties may impact not only how they understand their worlds but also how they think, learn, communicate, move, and so on. This interactive discussion of sensory processing and regulation will help you better understand what sensory processin...
School Performance After Epilepsy Surgery: Working Memory and Cognitive Load
Просмотров 544 месяца назад
Many children face challenges at school after epilepsy surgery. They may have difficulty making or maintaining academic progress for various reasons. This Power Hour will discuss the concept of cognitive load and offer perspectives on how it can help you and your child’s team understand how they learn, both at home and at school. We will learn about working memory and its relationship to readin...
Using Neuropsychological Evaluation to Inform Your Child’s Transition Plan
Просмотров 464 месяца назад
After epilepsy surgery, the transition to adulthood can be particularly challenging. Families need to know what tools are helpful to fully understand their teen’s cognitive and functional profile to design a results-oriented transition plan. How can you advocate for a neuropsychological assessment at the time of transition? Why is it needed? How can you use this assessment to drive transition p...
Monitoring Progress on Your Child’s IEP Goals
Просмотров 714 месяца назад
Progress monitoring: What is it, and why does it matter? Progress monitoring is how you and your child’s school know whether IEP goals are being met. You must understand if your child is making progress, how progress is being measured, how to ask for and look at data, and what to do if your child fails to make progress. Join Julie Gardner, Educational Specialist, and Audrey Vernick, PESA’s Dire...
College Considerations After Epilepsy Surgery
Просмотров 284 месяца назад
Students after epilepsy surgery may have health conditions or physical disabilities requiring them to consider what support and accommodations they will need when transitioning to college. The laws that govern accommodations change from high school to college, as does the role of the student and guardian. This presentation covers: • The applicable laws that impact academic, residential, and pro...
Behavior & Coregulation
Просмотров 434 месяца назад
As a parent, your greatest and most effective tool for decreasing challenging behaviors is the ability to provide co-regulation for your child. Contrary to what many think, this is not simply a psychological or emotional process underway but resides deep within our nervous system and our child’s nervous system. In this Power Hour, we discuss what self-regulation and co-regulation mean and why w...
Empowering Families to Address the Sexual Assault Epidemic in the Disability Community
Просмотров 394 месяца назад
Join us for a transformative presentation where we shed light on the alarming sexual assault epidemic affecting people with disabilities. Led by passionate disability advocate Julie Payne-Neward, this session is a call to action for families and caregivers. What You’ll Learn: 1. Understanding the Epidemic: We will delve into the staggering statistics surrounding sexual abuse within the disabili...
IEP Goals - What Can a Parent Do?
Просмотров 655 месяцев назад
Do you need help understanding your child’s IEP goals? What data can you ask for, and how often? How can you be more involved in your child’s IEP development? Join Julie Gardner, Educational Specialist, and Audrey Vernick, PESA’s Director of Patient and Family Advocacy, to learn how to actively participate in IEP goal development, know when your child’s goals have not been met, and what to do a...
Evaluacion de fase 2 pruebas invasivas
Просмотров 135 месяцев назад
#epilepsia #convulsión #cirugíadeepilepsia #hemimegalencefalia #displasiacortical #encefalitisdeRasmussen #accidentecerebrovascularpediátrico #convulsiones #EEG En este video, Dr. Jorge A. González-Martínez, Director de la Programa de Epilepsia y Trastornos del Movimiento y Co-director, Centro de Epilepsia de la Universidad de Pittsburgh, discute las evaluaciones de cirugía de epilepsia de fase...
Introducción a las cirugías de epilepsia para nińos
Просмотров 255 месяцев назад
#epilepsia #convulsión #cirugíadeepilepsia #hemimegalencefalia #displasiacortical #encefalitisdeRasmussen #accidentecerebrovascularpediátrico #convulsiones En este video, la Dra. Zulma Tovar-Spinoza nos introduce a los muchos tipos diferentes de cirugías que pueden detener o reducir las convulsiones de su hijo. Nos recuerda que es críticamente importante entender todas sus opciones y que la cir...
Medical and Functional Outcomes After Hemispheric Surgery
Просмотров 2796 месяцев назад
#hemispherectomy #hemispherotomy #epilepsysurgery #seizures #corticaldysplasia #hemimegalencephaly #Rasmussensencephalities #rasmussensyndrome #pediatricstroke #epilepsy This Science and Research Update held in conjunction with the 2023 meeting of the American Epilepsy Society reviews research about outcomes other than seizure control after hemispheric surgeries (e.g. anatomical hemispherectomy...
Assistive Technology Tools to Enable Access to Any Environment and Solve Any Problem
Просмотров 736 месяцев назад
#epilepsyawareness #epilepsysurgery #epilepsy #seizures #assistivetechnology #technology #accessibility Assistive technology (AT) tools and services are available that can help an individual after epilepsy surgery with improved access to information, education, communication, employment, or leisure activities? This presentation provides an overview of assistive technology for people with learni...
The Lifelong Impact of Having a Sibling With a Disability
Просмотров 3339 месяцев назад
The Lifelong Impact of Having a Sibling With a Disability
Talking With Your Kids About Sexuality
Просмотров 3210 месяцев назад
Talking With Your Kids About Sexuality
Journey to Recovery: What to Take to the Hospital
Просмотров 13411 месяцев назад
Journey to Recovery: What to Take to the Hospital
Cuando se debe considerar la cirugía de epilepsia
Просмотров 8311 месяцев назад
Cuando se debe considerar la cirugía de epilepsia
Laser Ablation for Pediatric Drug-resistant Epilepsy
Просмотров 300Год назад
Laser Ablation for Pediatric Drug-resistant Epilepsy
Future Planning - How to Prepare for Adulthood & Beyond
Просмотров 165Год назад
Future Planning - How to Prepare for Adulthood & Beyond
Public School, Private School, or Home School - What Works?
Просмотров 69Год назад
Public School, Private School, or Home School - What Works?
Transitioning to Adulthood After Epilepsy Surgery
Просмотров 79Год назад
Transitioning to Adulthood After Epilepsy Surgery
Applied Behavioral Analysis: How It Can Help My Child
Просмотров 53Год назад
Applied Behavioral Analysis: How It Can Help My Child
Where is this Driving Simulator located in Boston?
Thank you so much for this! It is incredibly helpful as we are trying to navigate endocrinology post-op with hemispherectomy with very little resources on the subject!
I don't have any vision lost just double two the right which is a quality of life change
Ce putain de collège bientôt la fin
Left HH and Unilateral neglect from ABI in 2019. Loss my pure autonomy not being able to drive and so much more. I luckily get around with the bus system in Pioneer Valley. I miss driving ao badly
Is the PP doc or slides available? TIA
Tout bébé qui vomit vert doit être ouvert
(Ou presque ) Apage
Thank you!
searched"High Schoolers Walk Out as Adults Advocate for Transgender Rights",and this sh;t came up?!?
أنا لا أفهم اللغة الانجليزية أعلم أنهم يتكلمون عن مرض الصرع فقط لكنني أريد أن أعرف عن مدى شرحهم لهذا المرض وعلاجه فهل من أحد يترجم لي حتى ولو كان مختصرا فسأكون شاكرة لكم .
Sir I am from India and my 1 year baby girl suffering from hemimegalancephaly & 10 to 20 time seizure in a day.all are medicine apply but not improve to till.so we decided to brain surgery,so i was your video from youtube & i am feel good & trust .therfore I requested you can u help me ,whic is my beautiful baby can survive .then we will obliged to you.
There is a good surgeon, Sarat Chandra, at AIIMS in New Delhi. Can you get there?
Yes sir I will reach,, is he a paediatric neurosurgeon?
@@knmusic9 yes.
Молодец, привет из Казахстана!
Can you write down the link? I have been getting push back from the school to obtain AAC for nonverbal autistic child? He is 7 years old and still don't have AAC device. 😢
I have LHH from a GBM tumor resection in my right occipital lobe. I still have some peripheral on the left. Not all homonymous hemianopsia is total.
Awesome explanation in detail of everything I need to know regarding SEEG, a process that I am about to go through. I suggest people living with epilepsy considering surgery should look at this video to get more insight. Thank you for putting up this video; it truly gave me more insights too to the questions I should ask that I did not even ask prior.
I'm a sibling of a brain cancer survivor. She had a glioblastoma when i was 6 and she was 9. I'm 57 and she is 60 now. She had brain surgery and full head and body radiation and consequently brain injury which made her cognitively impaired.
I had this done in 2018 in Portland at OHSU and am going to be having it done again here soon. I was able to go home the next day!
Suffering from Right Homonymous Hemianopia since 1989 after a road accident and brain surgery to remove a clot. Please advise. Thanks. Rakesh Gulati, Delhi, India India
Need more information on what s you did
*Promosm*
Thanks for this!!❤❤❤❤
Can I please get the email address to request the slides for this?
info@epilepsysurgeryalliance.org
Benzema ballon d’or
thank you
thank you for this, my son 6 may have to go through this. God Bless.
Does this apply with kids with autism? Have a verbal and nonverbal kids. What assessments would I need?
As a former special education teacher I would see this presentation being very beneficial to all educators as an inservice opportunity. As stated often in this presentation even trained professionals do not have the knowledge to understand and assist with techniques needed for educating children with Rasmussen's Encephalitis who had a hemispherectomy. The information shared provides so many positive "tools" for assisting students with varying abilities. Thank you for sharing your experiences and creating such positive environments for your children to flourish.
Thank you for this suggestion! We do offer free school training and will consider adding several of these points to the presentation. We’re grateful for your feedback. epilepsysurgeryalliance.org/resources-for-school-teams/school-training/
Mrs. Emcee Epileptic seizures has nothing to do with eating right or sleeping right !! You should not give advice you know nothing about!!
Page 599 bientôt la fin les gars (non)
Jsuis a bout ☠️
Le meilleur pour la fin
Hahaha 😂
621/840 mtnt
Which side of the head so I slap people who tell me just to movemy head?
What kinds of accommodations could be made for my son who has recently had a hemispherectomy two years ago at age 6. He is now 8 and struggling and I believe this could be a large part of it. Also shine what on the Autism spectrum. Just wondering what kinds of solutions you have for these kids?
Please see: epilepsysurgeryalliance.org/wp-content/uploads/2022/12/Strategies-for-CAI-after-Hemispherectomy-1.pdf
Also: epilepsysurgeryalliance.org/about/what-is-epilepsy-surgery/hemispherectomy/hearing-listening-hemispherectomy/
I would love to see the reference list used for this presentation
Question? How does a parent find a doctor that will dig far enough to find the answers? I have a 20 year old son who's had an epilepsy diagnosis for 17 years. Weird thing is; in probably close to a dozen neurologists, no one can definitively "find" his seizures? We're talking level 4 epilepsy centers with neurologists who have 20 plus years of experience reading EEG's. At least 6 LTM's, and I've lost count of how many other office EEG's. There's very clear epileptiform activity. Posterior left temporal lobe with cross over to the right temporal lobe. Some discharges in the frontal lobes and sporadic generalized discharges that appear in random places across the rest of the brain. No change in EEG on or off meds (vimpat and depekote). (February 2022 - Cleveland adult epilepsy unit) Currently classified as "intractable". He's lost some neurological function over the past 4 years. Think he's had 4 MRI's at this point. Recent T3 epilepsy weighted; "sparse nonspecific punctate FLAIR/T2 white matter hyperintensities of the cerebral hemispheres" and "Left posterior temporal lobe developmental venous anomaly" (known on first MRI done when he was 4 years old). Also "Note is made of calcification along the falx." (First noted on MRI 2019 between the two hemispheres frontal lobes.) Current neurologist tells me the MRI is "normal". The current issues are memory, language processing, executive function and a constant tremor of the extremities. Right side of the body is weaker than left; comparatively speaking, arms have more strength than legs; is ambulatory with some balance and gate problems. Difficulty going down stairs, but not so much going up. He fatigues easily (maybe can walk 20 minutes to 1/2 hour before having to sit down) and sleeps between 10 and 12 hours a day. No ability to keep track of time. Has a bit of anxiety in busy public places because he states he gets confused. Emotionally stable affect though irritable when fatigued or physically uncomfortable. Had significant speech delay / processing and motor cross over midline / motor planning difficulties as a child. Was in OT until 4th grade and speech therapy until 6th. Lots of stereotyped odd posturing had been caught on previous sleep EEG's. All said to have not been seizures. Sent for 4 sleep studies over the years. Sleep clinic had no diagnosis for this behavior. Only noted frequent arousal out of stage two sleep. Much of this behavior subsided with age. Only occasional and barely noticeable now. Is more prevalent off meds though. Still stated to be non seizure. (Can't find EEG discharge correlation.) I'm told the hypothesis is "yet to be determined genetic epilepsy of unknown seizure presentation" Yet he's had every single genetic test they can run. Nothing! Mitochondrial blood work and genetic testing = nothing! My hypothesis is cognitive temporal lobe epilepsy with secondary generalization. Though I don't discount the possibility that he could have more than one form of epilepsy. IQ reasoning capacity score = 94 Memory subsets only score high 50's to mid 60's Overall IQ = 84 (Last IQ assessment done when he was 17.) Only attained about 6th grade education for lack of ability to remember / executive function organizational issues. Was diagnosed with "Aspergers" in 1st grade. Changed to PDD-NOS by 9 years old. By 14 years old; no longer met threshold for "Autistic spectrum disorder" according to DSM-5. Was given diagnosis "social pragmatic language disorder" by psychologist. I don't think he has ever really had autism. He's too aware as per "theory of mind". Understands emotions, read facial expressions, maintain eye contact, gets jokes, understands other people have different opinions. Capable of in-depth philosophical conversations that are in line with an IQ of 94. Doesn't drive, not employable. Individual martial arts lesson as form of physical therapy and acupuncture treatments seem to help. Mom here is worried about his future and current quality of life. Contacted neurology team at Henry Ford in Michigan; but we live in NY. (Waiting for response.) Any other suggestions for epileptologist who will dig far enough to find the answer as to whether or not surgery would work for him? Thanks; these videos were helpful.
My son is already 4 years old now, he is diagnosed with Hydrocephalus and put a shunt on his head and undergo surgery when he was 4 months old. Now he is suffering different type of seizure and I am so afraid of what will happen 😭
BONJOUR JE VIENS DU COLLEGE DE PEDIA
Can you use EMS on anoxic brain damaged patients?
Voilaaaa le collège de pieda représente
why can't u just remove or fix whatever it is without removing any part of the brain we need our brains also why can't u go into the brain very carefully to reconnect whatever it is instead of wanting to remove a portion of the brain because we need our brains and if it were me I wouldn't want to have an after affect after surgery and what is up with wanting to drill in somebodys brain u make it sound as if ur target is too kill people with seizures or epilepsy
Amazing!! For the first time I am knowing about the assesments necessary for my child. Thank you so very much Audrey and Mónica for this massive information 🙏🙌❤
please your number
This was really eye opening, because we were told from the beginning that our son would need surgery. I am so grateful we live in Utah and were connected to the right people to help us. I was so unsure about surgery and was a reck that day, but my son has a quality and full life. We lived in and out of the hospital with his seizures. He was on 4 medications right before surgery. Our team was just trying to wait until he was 3 months before surgery, but after having non stop seizures for an hour and a half we couldn't wait. Our little one was 7 weeks old and is now 4 years seizure free! He is doing amazing. Growing and developing.
This is my worst fear. I’m 14 years post opp. I had one seizure a year later. I was recently given Keppra for a non epileptic event. It’s been almost 2 weeks and I’m still terrified.
I'm 11 and have epilepsy and take keppra and clobazam and aptiom. So I take like over 1000s of mg of medicine a day because I need to but I hope ur better now
working w an 11 year old boy w intellectually disabled. he is at the beginning. he doesn't know letter sounds I desire greatly for him to be literate and know to count money
Thank you so much for this. I definitely need to watch multiple times but this is so helpful!!! I have 2 children now with IEP’s out of 3 kids one is in 3rd, the other is 3 years old but he should be in the district preschool which is for children with special needs as well as typically developing “peers”. He qualified for an IEP and is getting PT since not walking yet but they say he doesn’t qualify for the preschool. 🙈 makes no sense
❤❤❤️
where can I get this stuff, or how to built it
Thank you, very Informative!
Teaching Sammie to read
I will recommend you all to Dr Omar regarding infantile spasms. His medication is unique, very effective and fast in action. You can as well subscribe to his youtube channel via Dr Omar Meds
Adorei