Hope For Hypothalamic Hamartomas
Hope For Hypothalamic Hamartomas
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Our Role in Advancing Education, Research and Support - Hypothalamic Hamartoma - A Lifelong Syndrome
Session 5: Our Role in Advancing Education, Research and Support - Hypothalamic Hamartoma - A Lifelong Syndrome
Erica Webster, BS - Hope for HH Cofounder, President
Lisa Soeby, MBA - Hope for HH Cofounder, Vice President
- Video Chapters -
0:00 - Intro
0:22 - Our Role in Hypothalamic Hamartoma Syndrome Education, Research and Support
4:40 - A Personal Story - Grace Webster
9:04 - A Personal Story - CJ Soeby
15:36 - Closing Remarks
Find out more about gelastic (laughing) and dacrystic (crying) seizures associated with hypothalamic hamartomas by visiting Hope for Hypothalamic Hamartomas website (hopeforhh.org)
มุมมอง: 306

วีดีโอ

Treatment Options & Potential Complications - Hypothalamic Hamartoma - A Lifelong Syndrome
มุมมอง 761ปีที่แล้ว
Session 4 - Surgical Treatment Options & Potential Complications - Hypothalamic Hamartoma - Diagnosis & Treatment of a Lifelong Syndrome Alexander Weil, MD, FRCSC, FAANS, FACS Pediatric Neurosurgeon, CHU Sainte-Justine Associate Neurosurgeon, University of Montreal Hospital Center (CHUM) Associate Professor, Université de Montréal Surgeon-Scientist, Sainte-Justine Research Center - Video Chapte...
Diagnosis of HH in Infancy - Hypothalamic Hamartoma - Diagnosis and Treatment of a Lifelong Syndrome
มุมมอง 339ปีที่แล้ว
Session 3 - Diagnosis of HH in Infancy - Hypothalamic Hamartoma - Diagnosis and Treatment of a Lifelong Syndrome Julia Jacobs-Levan, MD, PhD Associate Professor at University of Calgary Adjunct Professor University of Freiburg Director at Alberta Children's Epilepsy Program - Video Chapters - 0:00 - Intro 1:11 - What is the earliest seizure type? 9:50 - How to diagnose HH in infancy? 13:19 - Is...
Current Understanding of HH - Hypothalamic Hamartoma - Diagnosis & Treatment of a Lifelong Syndrome
มุมมอง 615ปีที่แล้ว
Session 2 - Current Understanding of HH - Hypothalamic Hamartoma - Diagnosis and Treatment of a Lifelong Syndrome Nathan T. Cohen, MD Assistant Professor, Neurology & Pediatrics George Washington University School of Medicine Epileptologist, Children’s National Hospital Washington, DC - Video Chapters - 0:00 - Intro & Overview 1:01 - Clinical Summary 4:57 - Diagnosis, Pathophysiology and Imagin...
Learning Objectives - Hypothalamic Hamartoma - Diagnosis and Treatment of a Lifelong Syndrome
มุมมอง 195ปีที่แล้ว
Session 1 - Learning Objectives - Hypothalamic Hamartoma - Diagnosis and Treatment of a Lifelong Syndrome Felippe Borlot, MD, MSc, CSCN (EEG) Assistant Professor of Neurology and Epileptologist Section of Neurology, Department of Internal Medicine Max Rady College of Medicine, Rady Faculty of Health Sciences, University of Manitoba
Learn more about Hope for Hypothalamic Hamartomas and why we continue to do the work we do
มุมมอง 237ปีที่แล้ว
Our Role in Advancing Education, Research and Support - Hypothalamic Hamartoma - A Lifelong Syndrome Erica Webster, BS - Hope for HH Cofounder, President Lisa Soeby, MBA - Hope for HH Cofounder, Vice President - Video Chapters - 0:00 - About Hope for Hypothalamic Hamartomas and Our Role in Advancing Education, Research and Support 4:13 - A Personal Story - Grace Webster 8:50 - A Personal Story ...
Caring for the Caregiver
มุมมอง 822 ปีที่แล้ว
In this presentation, we will identify barriers to self-care and various strategies to improve self-care, when taking care of others. Dawn Herring, LMFT Licensed marriage and family therapist Dawn Herring is a licensed Marriage & Family Therapist practicing in California. She specializes in the areas of trauma, healthy relationships, and caregiver burn-out. She works for the military as a clini...
Beyond the Seizures: Family Impact of Hypothalamic Hamartomas
มุมมอง 2662 ปีที่แล้ว
The learning curve about the medical aspects is one challenge for families; however, the psychosocial impacts on a family are also just as important to address. Family dynamics, behavioral challenges, financial burden, and other stresses can add up. We will examine the range of challenges, help you to recognize signs of stress, and offer some strategies. Dr. Madison M. Berl, PhD, ABPP Director ...
Hormonal Changes of Hypothalamic Hamartoma: The role of an Endocrinologist
มุมมอง 3842 ปีที่แล้ว
Discussion summarizing the currently available data on hormonal changes associated with hypothalamic hamartomas. - A review of the data regarding the effects of radiosurgery on hormonal changes. - A discussion on the practical strategies for screening and follow-up of hormonal changes for those with hypothalamic hamartomas. - A review of current treatment approaches to hypothalamic obesity - A ...
Mental Health and Hypothalamic Hamartoma: A Life-Span Approach
มุมมอง 3002 ปีที่แล้ว
The nature and rates of psychiatric and psychological challenges in individuals with hypothalamic hamartoma will be presented. Families report that the emotional, behavioral, and cognitive manifestations may present a significant burden, and these aspects are common - likely at least 50% of individuals with one or more mental health difficulties. The range of symptoms and disorders includes all...
Current State of Focused Ultrasound with a Contrast to Laser Ablation
มุมมอง 2472 ปีที่แล้ว
Dr. John Ragheb Director of Pediatric Neurosurgery Chief of Surgery at Nicklaus Children’s Health System
Gelastic Seizures with no laughing
มุมมอง 35K3 ปีที่แล้ว
Gelastic seizures are the most specific symptom associated with hypothalamic hamartomas (HH). These are also referred to as laughing seizures although not all individuals with gelastic seizures present with a true laughing sound. They are usually brief, often lasting less than 30 seconds, however they can go longer - sometimes up to a few minutes in duration. They can be occasional or very freq...
Introduction to Hypothalamic Hamartomas (HH) and the Hope For HH organization
มุมมอง 1.1K5 ปีที่แล้ว
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HH 2019 Andreas Shulze Bonhage
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HH 2019 Andreas Shulze Bonhage
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ความคิดเห็น

  • @silly_lizzy-m2u
    @silly_lizzy-m2u 11 วันที่ผ่านมา

    that not one thats faking and laughing its rude

  • @TehRealOliverH
    @TehRealOliverH 11 วันที่ผ่านมา

    🫢😛🤪😜😂😂😂😄😄😄😃😃😃😕😕😐😧😮😲: baby

  • @Pecador74
    @Pecador74 21 วันที่ผ่านมา

    This baby is so adorable ❤❤❤❤❤

  • @AidenKeck-o3m
    @AidenKeck-o3m 29 วันที่ผ่านมา

    I know that’s real because i have gelastic seizures as well. They last about like 20 seconds and they are really controllable.

  • @moaazXyasirfriendsbombs
    @moaazXyasirfriendsbombs หลายเดือนก่อน

    Bro just pulled out his serious face

  • @NickPaine-d7w
    @NickPaine-d7w หลายเดือนก่อน

    I would be so clueless if i was a father, id just think we were playing "man he really likes me. Cant blame him i guess i am the greatest" meanwhile my child is having a literal seizure 😢

  • @EyeVeeDee
    @EyeVeeDee หลายเดือนก่อน

    I love the way at the start he decides to eat his foot like it’s actual food also he is adorable I wish epilepsy wasn’t a thing (i don’t have epilepsy) but I feel bad for all the people out there that do it must be really,really,extremely hard to cope with it

    • @LyleTuttle-b6c
      @LyleTuttle-b6c หลายเดือนก่อน

      Sounds like he just sneezed. Cute video.

  • @Winterwlc
    @Winterwlc หลายเดือนก่อน

    I have pallister hall syndrome, and let me tell you this feel euphoric like im on drugs (except i never had it) i get these seizures every once in a while. (Maybe once or twice a year) and usually happens after a dream or nightmare, it feels hollow inside like im laughing but not really happy laughing i just stare blank into space after it stops i think like what the heck happened?

  • @Skib_gamer
    @Skib_gamer หลายเดือนก่อน

    My dog unfortunately, 4 years ago passed away from a seizure. Story: my best friend was coming over for a sleepover. We went to the park for a bit cuz we were sorta young and then my mom went to get us McDonald’s for dinner lol. And then when we came home me and my friend were doing what 10 yr olds do and then my mom tells me that my friend had to go home because our dog was having seizures. Keep in mind that my dog was 11 years old at this point. So I was mad at my dog because I didn’t know what a seizure was at that point and then he kept having constant seizures and then we decided to put him down. Super sad and I miss him a lot. We also lost my cat (s) because they ran away but that’s nature huh? 🥲 my other dog which I have right now is super lazy and does nothing but she’s getting old and every day I get scared of what will happen to her next?😢

  • @BrendanBallesteros
    @BrendanBallesteros หลายเดือนก่อน

    Galaxy seizure? Nah, Retarded seizure? Yes

  • @EsmeraldaRodiguez10
    @EsmeraldaRodiguez10 หลายเดือนก่อน

    I don’t know how it feels But I think it hurts.

  • @uwucatkittyuh
    @uwucatkittyuh หลายเดือนก่อน

    𝐆𝐠𝐠

  • @uwucatkittyuh
    @uwucatkittyuh หลายเดือนก่อน

    𝐕𝐡𝐡

  • @MrButterVR
    @MrButterVR หลายเดือนก่อน

    why is she laughing??

  • @user-Angelisa57
    @user-Angelisa57 หลายเดือนก่อน

    What is the next treatment out there I suggest that people start giving it to their patients.

  • @sonicshell2443
    @sonicshell2443 หลายเดือนก่อน

    It doesn’t look like it has a seizure

  • @JodiePerrigo
    @JodiePerrigo หลายเดือนก่อน

    That's not a seizure he's playing and laughing

  • @AshleyCoons-i8g
    @AshleyCoons-i8g หลายเดือนก่อน

    This is my daughter. For many of you stating it looks just like a happy baby…you are correct which is why Hope for HH has posted this video. We didn’t know at the time of this video or for several months after that our daughter had a tumor and these were seizures. We genuinely thought this was her laugh. But she would do this while I rocked her to sleep (two times in a row) and immediately fell back asleep. She also would have dacrysric seizures in her sleep as well.

    • @LyleTuttle-b6c
      @LyleTuttle-b6c หลายเดือนก่อน

      How is she today? Too many people are putting videos out with their baby's going through spasms/seizures etc, and do not follow up with their present situation.

  • @ieatbaconbcitsyummy
    @ieatbaconbcitsyummy หลายเดือนก่อน

    I have probably done that when I was a little baby

  • @EchoPulseX
    @EchoPulseX 2 หลายเดือนก่อน

    😂

  • @rickytran1757
    @rickytran1757 2 หลายเดือนก่อน

    “You’re crazy” was wild 💀💀💀💀💀

  • @Rebecca_1202letgo
    @Rebecca_1202letgo 2 หลายเดือนก่อน

    Oh no

  • @shonbrossard7859
    @shonbrossard7859 2 หลายเดือนก่อน

    Is this baby what they call a Mongoloid?

    • @DallastxBee1
      @DallastxBee1 หลายเดือนก่อน

      That termed is deemed offensive, and referred to a child with Down syndrome.

  • @DimaJr-j2b
    @DimaJr-j2b 2 หลายเดือนก่อน

    😀😃😀😃😀😃😀😃😀🤨🤨🫨

  • @AustinTheKingRapper
    @AustinTheKingRapper 2 หลายเดือนก่อน

    It not a seizure it call being silly

  • @Its_Shanna
    @Its_Shanna 2 หลายเดือนก่อน

    He is so cute

  • @prokwwgamer
    @prokwwgamer 2 หลายเดือนก่อน

    Dude. U should be rushing him to the hospital. Not recording this and using ur own child to get likes and subscribers. I urge alot of people to report this video for child abuse.

    • @jameson1465
      @jameson1465 2 หลายเดือนก่อน

      I’m pretty sure if someone is diagnosed with epilepsy u don’t need to take them to the doctor with every minor seizure

  • @Dawn-c4f
    @Dawn-c4f 2 หลายเดือนก่อน

    What is that

    • @erinhingley6544
      @erinhingley6544 15 วันที่ผ่านมา

      A seizure

    • @Dawn-c4f
      @Dawn-c4f 11 วันที่ผ่านมา

      @erinhingley6544 how is that a seizure

    • @erinhingley6544
      @erinhingley6544 11 วันที่ผ่านมา

      @@Dawn-c4f some people experience seizures where their eyes or mouth twitch and this is kinda like that and they can’t control it this seizure is most common in babies

  • @CaitlinFord-o9x
    @CaitlinFord-o9x 2 หลายเดือนก่อน

    Why can’t this just be normal for a baby to giggle

  • @Amit-i6i9u
    @Amit-i6i9u 2 หลายเดือนก่อน

    "Planet Ayurveda has truly made a difference for me. Their epilepsy-focused products are not just effective but also safe for long-term use. Highly recommended!"

  • @Amit-i6i9u
    @Amit-i6i9u 2 หลายเดือนก่อน

    "Trust nature to heal you. I switched to Planet Ayurveda's herbal remedy for epilepsy, and I’ve never felt more stable and calm. This really works!"

  • @sahriz131
    @sahriz131 2 หลายเดือนก่อน

    All of that looks so normal, how did you recognize there was a problem? Can you explain please? This scares me for my kids. 😮

    • @Cute123kb
      @Cute123kb 7 วันที่ผ่านมา

      Okay why is she smilling randomly, you can tell the way it’s uncontrollable and she can’t stop it. Also there wasn’t a reason she smilled/laughed so that’s how u know it’s a seizure

  • @LyleTuttle-b6c
    @LyleTuttle-b6c 2 หลายเดือนก่อน

    Nothing wrong with his baby. I have seen to many videos of baby's crying. This is a breath of fresh air.

  • @DOTTORE_FOX
    @DOTTORE_FOX 2 หลายเดือนก่อน

    What was the result of the EEG? Would you update us? Was it a seizure in the end or is this behaviour more relatable to a psychogenic cause?

  • @Teenler420_69
    @Teenler420_69 2 หลายเดือนก่อน

    Laughing baby to a sneeze

  • @yasmindilaycan6546
    @yasmindilaycan6546 2 หลายเดือนก่อน

    To people who doesn’t know anything about epilepsy and still talking. Epilepsy has maybe 50 different types and it’s very hard to detect on babies

  • @Deuce_NM
    @Deuce_NM 3 หลายเดือนก่อน

    We thought our daughter was gassy & teething, she would kick every night in her crib and we would hear crying off and on through the monitor every night. After a long period of this “ Painful Laughing” we knew it was more than anything we had knowledge about. We recommended our child’s Primary Care Provider to do further tests. Luckily my wife works in the medical field and came across a condition called laughing seizures aka HH. And that’s when we had an answer.

  • @YouShallNeverKnowMe
    @YouShallNeverKnowMe 3 หลายเดือนก่อน

    My mother has epilepsy

  • @paularobinson-x7i
    @paularobinson-x7i 3 หลายเดือนก่อน

    Dr Daniel curry operated on my daughter August 2019. He saved her life and gave her future back to her.. daily seizures since birth gone after her operation. Bless you Dr Curry 🙏🏼💫

  • @anonym1775
    @anonym1775 3 หลายเดือนก่อน

    I had gelastic seizures. They are very painful

  • @Jessicavargas-ig1zm
    @Jessicavargas-ig1zm 3 หลายเดือนก่อน

    I’m very confused as to how you even recognized that something was wrong, i mean babies laugh and smile, i would have thought this was completely normal behavior?!!

  • @paularobinson-x7i
    @paularobinson-x7i 3 หลายเดือนก่อน

    Our family owes you our daughters life. Thankyou Dr Curry for saving Tianas life and giving her her future back. 5 yrs since on since her surgery, Tiana is living her best life at 18yrs old. Bless you Dr Curry from our family here in Melbourne Australia

  • @Weirdo.f5
    @Weirdo.f5 3 หลายเดือนก่อน

    Poor thing… :(

  • @zacharyaxlleduna9391
    @zacharyaxlleduna9391 3 หลายเดือนก่อน

    A Glastic seizure is normal in times. Can be caused by laughing problems, or mysteriously laughing. The cell send messages faster at the same time.

  • @SkyYT101
    @SkyYT101 3 หลายเดือนก่อน

    OMG this is so scary 🫣 I’ve never had a seizure before but my best friend has and my brother😢😢

  • @Violety42
    @Violety42 3 หลายเดือนก่อน

    Poor baby, his smile is adorable though.

  • @loganhailey-mp7gw
    @loganhailey-mp7gw 4 หลายเดือนก่อน

    I thought it was a sneeze but NO! It isn't

  • @Indy6457
    @Indy6457 4 หลายเดือนก่อน

    😂❤

  • @Straight_in_a_diagonal_way
    @Straight_in_a_diagonal_way 4 หลายเดือนก่อน

    I thought i was having a panic attack in 7th grade whenni startedd laughing unvontroulably for about 10-15 minutes i started crying while laughibn i couldnt stop it was either a panic attack or thsi which is genuonely scary to find out even after the fact

  • @s-ianandreigaliza
    @s-ianandreigaliza 4 หลายเดือนก่อน

    "Gelastic seizure" is expressed by sudden bursts of energy, giggling, and laughter. Not to be confused by "Pseudobulbar effect".