Gelastic & Dacrystic Seizures

 

I came across the topic of gelastic and dacrystic seizures within one the Autism Facebook groups that I follow, and I became curious on what type of seizures these were, the cause and the effect. The symptoms leading and the actual display of the seizure is what caught my attention from the beginning. The post stated that for days her child has exhibited laughing and crying nonstop and if anyone else's child had any episodes of this behavior before. As the comments began to flow, I noticed a repeated effect of the same comment "They are seizures get him to urgent care as soon as you can for an evaluation".   

Seizures in children can vary widely in form and symptoms, with gelastic and dacrystic seizures being particularly unique types associated with specific brain conditions. Understanding these seizure types, along with terms like hypothalamic hamartoma, drop attacks, tonic-clonic seizures, and aura, is essential for identifying and managing epilepsy in children.

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Gelastic seizures are rare, characterized by sudden, uncontrollable bouts of laughter that often seem inappropriate for the situation. The laughter during these seizures is not triggered by genuine humor or emotion but rather as a symptom of abnormal electrical activity in the brain, typically originating in the hypothalamus. Children having a gelastic seizure may laugh or giggle for seconds to a few minutes, and this may happen multiple times a day. Parents may notice that the child seems distant, unfocused, or “out of it” during these episodes, which can sometimes lead to a delayed diagnosis.

Dacrystic seizures are similarly rare and manifest as episodes of crying or sobbing without an emotional cause. Like gelastic seizures, dacrystic seizures often arise from the hypothalamus, though they can also occur in other parts of the brain. These episodes may include other subtle symptoms like facial grimacing or slight alterations in movement.

While both types of seizures are relatively short and may not always include major convulsions, they often indicate an underlying neurological condition, such as hypothalamic hamartoma.

A hypothalamic hamartoma is a noncancerous brain tumor found in the hypothalamus, a small but essential region of the brain that regulates many autonomic functions like hunger, thirst, and mood. This type of tumor is rare and congenital, meaning it is present at birth. Children with hypothalamic hamartomas often experience gelastic or dacrystic seizures from a young age, with symptoms frequently emerging before other signs of epilepsy.

The hypothalamus’s location and function mean that these seizures can be resistant to conventional seizure medications. Additionally, hypothalamic hamartomas can impact a child's development, potentially causing cognitive delays, early puberty, or behavioral changes.

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Children with hypothalamic hamartomas or other neurological issues may also experience other types of seizures called drop attacks, or atonic seizures. These types of seizures involve sudden loss of muscle tone, causing the child to collapse or "drop" to the ground without warning. The attacks can be very dangerous because they increase the risk of injury from falls. Atonic seizures are often brief and may not include convulsive movement, but they can significantly disrupt a child’s life and safety.

Another type of seizures are tonic-clonic seizures also known as grand mal seizures. Tonic-clonic seizures are marked by two phases. One is a tonic phase, where muscles stiffen, followed by a clonic phase, characterized by rhythmic jerking of the limbs. These seizures are often more intense and prolonged than gelastic or dacrystic seizures, lasting several minutes and sometimes followed by a period of confusion, fatigue, or drowsiness. Children who have gelastic or dacrystic seizures due to a hypothalamic hamartoma may also experience tonic-clonic seizures as the epilepsy progresses.

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Some children may experience an aura before a seizure, which is a sensory or emotional disturbance that acts as a warning. An aura might involve feelings of déjà vu, unusual smells or tastes, tingling sensations, or visual changes. While the aura itself is a simple partial seizure, it can indicate that a larger, more severe seizure is about to follow. In children with gelastic or dacrystic seizures, recognizing an aura can be helpful in preparing for or preventing injuries.

Conventional anti-seizure medications may have limited effectiveness in children with hypothalamic hamartomas, especially for gelastic or dacrystic seizures. However, some children respond to medications like antiepileptics or newer seizure control drugs under a specialist's guidance.

In cases where medication is ineffective, surgery to remove the hypothalamic hamartoma may be considered. Surgical options like laser ablation or resective surgery can reduce seizure frequency and severity. Surgical intervention is often more successful for children whose quality of life is significantly impacted by frequent seizures. Because these seizures can be unpredictable, lifestyle adjustments are essential. Families can improve safety by reducing fall risks in the home, adding protective padding, and coordinating with teachers and caregivers to ensure the child has support and supervision.

For families navigating the challenges of childhood epilepsy, support groups and counseling services can offer resources and coping strategies. Additionally, developmental and educational support may be necessary to help the child reach their full potential, especially if there are cognitive delays associated with the condition.

While gelastic and dacrystic seizures can be challenging to manage, understanding their underlying causes and potential treatments can greatly enhance a child's quality of life. Hypothalamic hamartomas and related conditions require specialized medical care, but with the right approach, children can experience fewer seizures and improved development. Early diagnosis, informed support, and effective treatment are key to managing these unique forms of epilepsy in children.

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Public Meltdowns: Tips for Parents of Autistic Children

As a parent of an autistic child, meltdowns in public can feel overwhelming, both for your child and for you. There’s often a mix of emotions—compassion, stress, worry, maybe a little embarrassment, but most of all, a deep desire to keep your child safe and comforted. Each meltdown is unique, but with preparation and understanding, you can manage these challenging moments more effectively. 

In this post, we’ll discuss common triggers of meltdowns, how to keep your child safe in public spaces, and tips to help you and your child feel more supported during these moments. 

Understanding the triggers of meltdowns can help you prevent them or at least prepare for when they might happen. Some common triggers include:

• Sensory Overload: Many public spaces are filled with loud noises, bright lights, and bustling crowds, which can be overwhelming for an autistic child. This sensory overload can easily lead to a meltdown.

• Changes in Routine: Autistic children often find comfort in routines. A sudden change, like an unexpected stop on an outing, or an environment that doesn't follow a familiar pattern, can be distressing.

• Social Pressure: Public places often come with unspoken social rules. If a child feels pressure to act a certain way or is confused by the actions of others, this stress can contribute to a meltdown.

• Communication Difficulties: If your child struggles to communicate their needs or discomfort, frustration may build up, leading to a meltdown.

During a meltdown, it’s natural to feel a whirlwind of emotions. There might be:

• Worry: You want to keep your child safe, especially in a public space filled with people, cars, and potential hazards.
• Compassion: Meltdowns are often distressing for children. Knowing that your child is going through something difficult can be heartbreaking.
• Embarrassment: Public meltdowns sometimes bring stares or judgment from others, and it’s okay to feel embarrassed or frustrated by this.
• Determination: No matter what, you’re focused on helping your child through this, ensuring their safety, and trying to bring them comfort.

Acknowledging these feelings can help you feel less alone and better prepared to tackle the moment.

Safety is your top priority. Here are some strategies to help keep your child secure:

1. Stay Close and Keep a Calm Presence: Your presence can provide reassurance. If your child is flailing or moving erratically, keep yourself nearby but at a safe distance where you’re able to protect them from potential hazards.

2. Choose a Safe Space if Possible: If a meltdown begins in a crowded area or near something dangerous, try to guide your child to a quieter, safer place. Sometimes, this might be a spot near a wall, a corner, or even inside your car, where they’re protected from passing crowds or traffic.

3. Use Physical Barriers: If there’s a chance your child might bolt, try to position yourself between them and any nearby roads or hazards. Safety tools, like a harness or wristband, can also be helpful if your child has a tendency to run when overstimulated.

4. Watch for Self-Injury: During a meltdown, some children might engage in self-harming behaviors, such as headbanging or scratching. If this happens, gently block their hands with yours or try to redirect their energy with a soft object they can hold.

5. Communicate with Onlookers: You don’t have to explain your situation, but if it makes you feel better, a simple phrase like, “My child is autistic and having a hard time,” can help others understand. This can also help you feel less pressure from external judgment.

While each child is unique, there are a few strategies that many parents find helpful in keeping their children safe and managing meltdowns effectively:

1. Bring Comfort Items: Pack a sensory toy, weighted blanket, or headphones. These familiar items can help your child feel more secure and provide them with a coping tool when things become overwhelming.

2. Plan Quiet Breaks: When going out, choose locations that offer quieter spaces or sensory-friendly options, and build in time for breaks. For example, if you’re at a zoo, head to the quieter garden areas or find a less crowded spot if things become too intense.

3. Identify Safe Spots: If there are places you frequently visit, get to know the quiet areas or secluded spots ahead of time. This could be a quiet corner in a shopping mall, a car in a parking lot, or a bench away from the main crowd.

4. Use a Safety Card: Consider creating a small card with a brief explanation of your situation to hand to people if needed. Something like, “My child is autistic and may need extra space right now—thank you for understanding.” This can be especially helpful if your child is non-verbal or in distress.

5. Trust Your Instincts and Take Breaks: If you sense that things might become overwhelming, it’s okay to leave the area or cancel an outing. Listening to your instincts about when to give your child a break or head back home can prevent or lessen the severity of meltdowns.

Meltdowns are challenging and navigating them in public can be even more so. Always remember that it’s okay to prioritize your child’s needs over public opinion. These moments, while difficult, also allow you to show your child that you are there for them, no matter what.

With preparation, a focus on safety, and an understanding heart, you can make public meltdowns less daunting for both you and your child.

The Importance of Early Detection in Children with Disabilities

I wanted to start at the root of the issues that we come across as parents with special needs children. Detecting that our children have delays in certain milestones at an early age is important yet we tend to ignore certain signs that are directly in our faces. The denial sets in so extremely fast because we allow how we perceived life with our children beforehand to instantly block out trying to detect anything and some parents shut down. As parents, in those moments we become selfish, thinking of how we feel and how it disrupts life plans for us and the family. Instead our first thought should be how the child feels and what they are going through mentally just trying to express an emotion. Once the information sets in and we start to understand what we are actually facing our demeanor and the way we approach things are different. This stage of the process is normal, we as parents are human and have feelings and have to learn to navigate through those along with our emotions as well. Early detection of disabilities in children is crucial for fostering their development and improving their quality of life. Identifying issues at a young age allows for timely interventions, which can significantly alter the trajectory of a child's growth and learning. In this blog post, we’ll explore why early detection is so important and how it can make a lasting impact in your child's development.

Early detection involves identifying developmental delays or disabilities as soon as possible, ideally in the first few years of life. This can include physical, cognitive, emotional, or social challenges. When my oldest son was a week old he was seen by his primary doctor for his first appointment. He was weighed, measured his head and checked his belly button, normal stuff. Before I left for that appointment I met with the doctor and she told me that my son's head size was abnormally small and that he needed further testing to see exactly the reason for this occurrence. First reaction is shock then disbelief. The thoughts of self blame crept in but in that same moment I was thinking of which specialist to contact for a second opinion as soon as possible. Close observation and an abnormality was detected by the physician. I needed that fast detection to get the ball rolling to have my son set up with the best specialist and into the program Early Intervention (As called by the state of NJ) where services began by the time he was three months old. My son was diagnosed with a severe case of Cerebral Palsy and Epilepsy. By recognizing these issues early, parents, caregivers, and professionals can work together to create a supportive environment tailored to each child's unique needs. Parents and caregivers should be vigilant about developmental milestones. While every child develops at their own pace, some signs that may indicate a potential disability include limited eye contact or social engagement, delayed speech or language development, difficulty with motor skills (crawling, walking, grasping objects), challenges in understanding or following simple instructions and lack of interest in interactive play. If you notice any of these signs, it’s essential to consult a healthcare professional for an evaluation.

Healthcare providers play a pivotal role in early detection. Just as with my son, the healthcare team was able to point out the issue very early on and he was able to receive the full benefit of the three year service. I was able to have certain services set in place and utilize the full potential of the program. Regular check-ups, screenings, and developmental assessments can help identify potential issues before they become more significant problems. Providers can also guide families toward resources, such as early intervention programs and support networks.

The earlier a disability is detected, the sooner appropriate interventions can begin. Programs tailored to a child's specific needs—such as speech therapy, occupational therapy, or special education—can provide critical support that can lead to improved outcome. The main goal of Early intervention is to help children build foundational skills in communication, social interactions, and self-regulation. These skills are essential for successful interactions in school and in life, enabling children to thrive in various environments. Research shows that early intervention can lead to better cognitive, social, and emotional development. Children who receive support early on are often more successful in school and have better long-term outcomes in terms of independence and quality of life. Early detection provides families with essential resources and support systems. 

Understanding a child's challenges allows families to connect with other parents, professionals, and organizations that can offer guidance, information, and emotional support. Being apart of some type of support system is vital because we as parents need that outlet. That allows us to see things and situations from different angles, perspectives and through other peoples experiences. Importance of early detection in children with disabilities cannot be overstated. By identifying challenges early and providing timely interventions, we can significantly enhance the lives of these children and their families. Everyone—parents, educators, healthcare professionals, and communities—plays a part in creating an environment that encourages early detection and supports children in reaching their full potential. Let’s commit to being proactive and vigilant, ensuring that every child has the opportunity to thrive.

Understanding Tantrums Vs Meltdowns.......What Is The Difference?

 

When it comes to understanding the behaviors of autistic children, distinguishing between tantrum and meltdowns is crucial for parents, caregivers, and educators. Both responses can be challenging to manage, but they stem from different causes and require different approaches. In this blog post, we will explore the characteristics of tantrums and meltdowns and provide strategies for managing these behaviors. 

Let's start by talking about tantrums, typically a behavioral response. This occurs when a child is trying to get what they want or express frustration. In autistic children tantrum can be used to gain attention, gain an item or for a specific outcome. Children may engage in a tantrum to influence their surroundings or the people in them. They may also use tantrums as a way to express their frustration, often when they feel they are not heard. Signs of a tantrum could be crying, yelling, shouting, stomping or throwing items. The time frame for a tantrum is short and can be calmed with redirection or given them what they want.

On the other hand, a meltdown is an overwhelming response to stress or has had a sensory overload. Meltdowns are not intentional and often happens when a child feels they can no longer cope with their environment. Autistic children may experience sensitivities to sounds, lights, or textures which leads to a meltdown. When our children struggle to express their feelings or needs, it can result in a meltdown. Prolonged exposure to stressor can build up, leading to a point where the child can no longer manage their emotions. Signs to look for of a meltdown are loss of control over emotions and behavior, hitting kicking or collapsing (dropping to the ground). The length of time of a meltdown is longer and your child may need time to recover afterwards, depending on how intense they become. 

Now let's breakdown the difference between the two behaviors. Tantrums are often goal driven, while meltdowns are reactions to overwhelming situations. Tantrums typically last a shorter time and can often be redirected. Meltdowns on the other hand, can last longer and may require support to calm down. You may see after a tantrum that a child may feel satisfied if they get what they want, yet after a meltdown a child may feel exhausted or distressed.

Understanding what causes tantrums or meltdowns for your child can help in managing their behavior. Keeping track of these behaviors to survey patterns is also an option. Parents we have to identify the triggers for these behaviors in order to help manage them. Reducing sensory overload by creating a calm quiet space, where your child can go when feeling overwhelmed. Teaching our children coping skills helps them develop strategies to manage their emotions, such as breathing exercise, fidget toys, or taking breaks often work as well. Visual aids or communication devices help your child express their needs and feelings more effectively. It's crucial to maintain your composure during a tantrum or a meltdown. You being calm gives your child reassurance and makes it easier to de-escalate the situation. 

Recognizing the underlying causes of these behaviors allows parents and caregivers to respond appropriately, fostering a more supportive environment for growth and emotional regulation. 

Please feel free to comment your thoughts or experiences!

Navigating the Storm: Parents' Emotions After Their Child’s Medical Diagnosis

Receiving a medical diagnosis for a child is a life-altering event that evokes a whirlwind of emotions in parents. This experience often feels overwhelming, filled with uncertainty and fear alongside hope and love.

Initially, many parents feel shock, as the news can seem surreal. Denial may follow, with some believing the diagnosis is incorrect, serving as a protective mechanism to process the information.

As reality sets in, fear and anxiety emerge. Parents worry about their child’s future, potential treatments, and the diagnosis's impact on daily life. Questions like "Will my child be okay?" often plague their thoughts.

Feelings of guilt and self-blame are common as parents may question their role in the diagnosis. It’s important to recognize these feelings as natural, not reflective of actual responsibility.

Parents may feel profound sadness as they mourn the loss of the life they envisioned for their child, grieving for both health and affected experiences.

Anger can arise towards the situation or themselves, leading to frustration over a lack of understanding or resources. Constructively expressing these feelings is crucial.

Amidst the chaos, many parents find hope in their love for their child. Seeking stories of others who faced similar challenges can foster resilience.

Navigating emotions after a diagnosis doesn’t have to be done alone. Seeking support from family, friends, and professional counseling can provide essential outlets. Support groups can also connect parents with others who understand their journey.

The journey following a child's diagnosis is emotionally challenging. Parents will experience various feelings, and acknowledging these emotions is vital. By seeking support, they can navigate this difficult time, focusing on their child’s well-being and happiness. Remember, it’s okay to feel overwhelmed; you are not alone.

Parenthood & A Diagnosis

As a parent what was your reaction to your child's diagnosis? What signs did you see that prompted you to inquire about testing for your Ausome child? I am a mother of a child who has been diagnosed with Autism and ADHD. As my Ausome child started her milestones as a infant I noticed that she was a little off task. My daughter was not doing the babbling as children do around the ages of four to six months, it was more of a grunting and a lot of whining. What actually made me realized that my child may need to be evaluated was the fact that she was not crawling until she was almost one years old. She was given plenty of floor play and walker time but still didn't build up her strength for her to be mobile at that time. Due to my daughter being in daycare she was referred to Early Intervention, which was a huge blessing. Early Intervention in the state of New Jersey is a program designed to assist children from birth to the age of three years old who have missed milestones or have a known or unknown diagnosis. Early Intervention also provides a number of services for children which include Speech, Occupational Therapy and Physical Therapy. Through those services   we were able to address the issues that my daughter was facing and they gave us activities and exercises to complete on a daily basis to build up her strength in her core muscles so that she was able to sit up on her own without wobbling back and forth . After going through the services for about a year and a half my child was crawling and climbing full force. By the time my Ausome girl was two years old she began walking but she was walking on her toes. Toe walking is normal for some of those with Autism and can be helped by using MAFO braces to help with balance and walking. 

The early stages of knowing that my child was "different" per say was not a easy trial to go through in life, especially alone as a single parent. Sitting in that office as a doctor is explaining to me that my daughter would be non verbal, toe walker and mentally her brain functioned on a infant level at her age of three years old at that time. I honestly felt as if someone just pulled a chair from out under me. I seemed like my world crashed and shattered. A diagnosis does not just affect our children they affect us parents as well. As a parent your first thoughts of questions are what did I do wrong during my pregnancy, what could have I have done differently or how could I have prevented this from happening. Let me say this first, MOTHER'S IT WAS NOT YOU! We tend to be so hard on ourselves but once we begin our research and understand the process on our children's disabilities it becomes easier trust me. As parents we are our children's first line of advocacy so its so important to educate ourselves first to ensure we are not just accepting any treatment or medications that are children do not always necessarily need. Parents always remember to not let these diagnosis define who are children are. There are various treatment plans, medications and so on to aide us in this new age so never give up hope of what could change in your children's circumstances. God always has the final say on the things in this life. 

Now when we are talking resources, this is where my resource center Ka'Leah's Ausome Corner comes into play. Me as a parent, yet also a single parent knows the struggle through these processes first hand, not just on the level of Autism but my oldest son who is now nineteen years old was diagnosed with Cerebral Palsy at the tender age of eight months. My knowledge on the disabled population is broad in range and that is were my passion stems from when I decided to bring in to fruition my idea of a resource center. I want to be able to assist the ones in my community and surroundings with the knowledge that I did not have as a first time parent and a first time parent dealing with a child with a disability. This journey that we are going on with our children is a learning experience for us all across the board. I want to invent a safe space for us parents to have session to discuss the different diagnosis, to discuss how we feel as parents as we see our children progress/decline, behaviors and all. Parents do not always get that outlet that is needed to be there for their children eighty percent of the time and I want to create that twenty percent for them. I want our center to have open sensory play for children and eventually moving to have respite care available. Respite care takes the center to another level due to the high demand for respite care for young children in the area.