Lennox-Gastaut Syndrome

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    When Your Child Doesn’t ‘Grow Out’ of a Seizure Disorder

    My son Aaron always wanted to be his father’s sidekick. We live in the country in Western New York, so this meant being together outdoors, working on our land, and anything involving a mower, hitches, or tractors. Aaron is 32 now, and for most of his life, this was impossible — it was just too risky that he would have a seizure. Before his first seizure, Aaron was a healthy toddler who was meeting all his milestones. Then one day, while I was home alone carrying Aaron in my arms, he stiffened up, throwing the toy in his hand. I noticed his eyes rolled to the back of his head, and he was slightly convulsing. I didn’t know what it was — I had never seen a seizure before. After about 30 seconds, his eyes fixed on me, and I realized he had come out of it. I called 911, and we took our first ambulance ride to the hospital. The doctors said this seizure could be an isolated incident and ran some tests, but we didn’t get any answers. Aaron had another seizure two days later. We went to the nearest children’s hospital and ended up with the Chief of Pediatric Neurology. Because Aaron had a “normal” birth and had been meeting his milestones, they said it was a seizure disorder he would likely grow out of. We hung onto that possibility for years, even as his seizures became more difficult and led to more trips to the ER. Trying to manage his seizures was a roller coaster ride. Things would be stable for a while, but then turn on a dime. For the bulk of Aaron’s life, his seizures mostly happened at night but there were also seizures during the day. Every time he had a seizure, I wondered if I could’ve done something differently. “What did I feed him? What did we do that day? Was there extra stress or was he extra tired?” We tried a combination of medications for a while, but they’d always stop working, so we’d change over and over again. I was constantly watching him, worried he was going to have a seizure. As much as we want to keep our children small, they get bigger. I remember when I could no longer scoop Aaron up at night and move him to the middle of his bed. When he first grew hair on his legs, I thought, “This little boy is becoming a man,” and I wondered how I would be able to take care of him. Eventually we were connected with a great doctor at a facility a couple of hours away, and that connection was a lifeline. We would look forward to each appointment, hoping there was a new answer, a new medication, or a new direction. We still held onto the possibility that Aaron would outgrow his seizure disorder. When Aaron turned 18 years old, we were devastated to learn we had to switch from his pediatric neurologist, with whom we had a long-standing and trusting relationship, to an adult neurologist. Luckily, we found one close by who was wonderful. During that very first appointment, she asked us, “You’ve been told he has Lennox–Gastaut syndrome, correct?” We answered, “What is Lennox–Gastaut?” That was how we received our diagnosis. It was a shock, but at the same time it was a relief to have a concrete answer. Of course, we went researching online. I learned that LGS can be one of the most difficult-to-treat forms of epilepsy and symptoms can evolve over time, masking the signs needed to confirm a diagnosis. In addition to seizures, children often experience, an inability to solve problems, and attention-seeking behavior. Up to nearly two thirds of young children with LGS may also show signs of developmental delay before the first onset of seizures. Even with this diagnosis, there were still a lot of unknowns about what our future would look like. I read about clinical studies and researched treatment options, but the best resource for us was connecting with a community of other parents through the LGS Foundation . We learned about an upcoming conference in California. Even though travel was always a challenge for us, we applied for a full scholarship. We were in the dark for so long about Aaron’s seizures and eventual diagnosis and felt so isolated and alone. When we received the scholarship, we felt like we had won the lottery. Attending a conference full of information and getting the opportunity to talk with actual families living with LGS and going through the same things we were was an incredible experience. It was great for Aaron, too. That conference was a wake-up call in terms of exploring everything that could be possible for Aaron in terms of treatment. My husband and I left even more committed to find more options for Aaron. It was through another conference we attended that we heard that CBD, or cannabidiol, was an upcoming option that may help people living with LGS have fewer seizures. Of course our first thought was, “Is Aaron going to have to smoke something? Where do we even get this?” We were surprised, yet curious. We learned about EPIDIOLEX ® (cannabidiol), the first and only FDA-approved prescription CBD medicine (note: EPIDIOLEX is approved to treat seizures associated with LGS, Dravet syndrome, or tuberous sclerosis complex in patients one year of age and older). It made us feel better that the active ingredient in EPIDIOLEX – a highly-purified form of CBD – is plant based and not synthetic. And because it follows the strict regulations of the FDA, we could trust that it didn’t contain contaminants like toxic heavy metals or pesticides. IMPORTANT SAFETY INFORMATION Do not take if you are allergic to cannabidiol or any of the ingredients in EPIDIOLEX. EPIDIOLEX may cause liver problems. Your doctor may order blood tests to check your liver before you start taking EPIDIOLEX and during treatment. Please refer to the EPIDIOLEX Medication Guide and Instructions for Use for additional important information. Please see additional Important Safety Information & Indications below. We then talked to our healthcare team about trying EPIDIOLEX. We discussed possible side effects, including diarrhea, sleepiness, and potential impact to liver enzymes, but believed EPIDIOLEX was worth trying. After starting on EPIDIOLEX, we began to see more space in between Aaron’s seizures during the day. When we checked his monitors in the morning, we saw he was also having fewer seizures at night, including some nights without any seizures at all. He continued having fewer seizures as we worked with his doctors to find the right dose for him. When he would get a break from some of his seizures, it was like this massive fog began to clear. Fewer seizures meant Aaron was able to have better rest at night and more rest in between seizures during the day, giving his brain more time to process what was happening around him. With that time to recoup, he was able to think a little more clearly and talk in complete sentences. We saw him retaining more information and his ability to socialize grew. We’ve had friends over, and even they saw  changes in how Aaron interacts and speaks with them. Now, we’ve reached a point where we feel more comfortable letting Aaron do things without us being right there with him. He loves bowling and playing basketball with the Special Olympics. We’ve had at least eight bowling birthday parties for him! He’s involved in a day program where he joins other people in the community for exercise and learns about academics, nutrition, and life skills. Of course, Aaron still absolutely loves being outdoors. He’s a hard worker and looks forward to projects he and his father can do together. Before, my husband would be a nervous wreck most of the time, always on edge and ready to grab Aaron in case he had a seizure. Now, we’re more comfortable knowing he’s not having as many seizures, and my husband loves having Aaron’s help. He’s finally able to truly be his father’s sidekick. To be where we are today is quite a blessing we didn’t expect. I would encourage anyone raising a child with a seizure disorder to never give up hope. Don’t look too far in the future, because you don’t know what the future holds. Take it one day at a time, and enjoy your child and their small successes, or “inch-stones,” as we like to call them. Learn more about Aaron and his family’s story, and watch videos from other families on their journeys living with epilepsy here. Learn More Important Safety Information & Indications (continued) What is the Most Important Information I Should Know About EPIDIOLEX (cannabidiol)? EPIDIOLEX may cause liver problems. Your doctor may order blood tests to check your liver before you start taking EPIDIOLEX and during treatment. In some cases, EPIDIOLEX treatment may need to be stopped. Call your doctor right away if you start to have any of these signs and symptoms of liver problems during treatment with EPIDIOLEX: loss of appetite, nausea, vomiting fever, feeling unwell, unusual tiredness yellowing of the skin or the whites of the eyes (jaundice) itching unusual darkening of the urine right upper stomach area pain or discomfort EPIDIOLEX may cause you to feel sleepy, which may get better over time. Other medicines (e.g., clobazam) or alcohol may increase sleepiness. Do not drive, operate heavy machinery, or do other dangerous activities until you know how EPIDIOLEX affects you. Like other antiepileptic drugs, EPIDIOLEX may cause suicidal thoughts or actions in a very small number of people, about 1 in 500. Call a healthcare provider right away if you have any signs of depression or anxiety, thoughts about suicide or self-harm, feelings of agitation or restlessness, aggression, irritability, or other unusual changes in behavior or mood, especially if they are new, worse, or worry you. Take EPIDIOLEX exactly as your healthcare provider tells you. Do not stop taking EPIDIOLEX without first talking to your healthcare provider. Stopping a seizure medicine suddenly can cause serious problems. What Else Should I Know When Taking EPIDIOLEX? The most common side effects of EPIDIOLEX include increase in liver enzymes, sleepiness, decreased appetite, diarrhea, fever, vomiting, feeling very tired and weak, rash, sleep problems, and infections. EPIDIOLEX may affect the way other medicines work, and other medicines may affect how EPIDIOLEX works. Do not start or stop other medicines without talking to your healthcare provider. Tell healthcare providers about all the medicines you take, including prescription and over-the-counter medicines, vitamins, herbal supplements, and cannabis-based products. What Additional Information Applies to Women? If you are pregnant or plan to become pregnant, EPIDIOLEX may harm your unborn baby. You and your healthcare provider will have to decide if you should take EPIDIOLEX while you are pregnant. If you become pregnant while taking EPIDIOLEX, talk to your healthcare provider about registering with the North American Antiepileptic Drug Pregnancy Registry (by calling 1-888-233-2334). The purpose of this registry is to collect information about the safety of antiepileptic medicines during pregnancy. Because many medicines like EPIDIOLEX are passed into breast milk, talk to your healthcare provider about the best way to feed your baby while taking EPIDIOLEX. What is EPIDIOLEX (cannabidiol)? EPIDIOLEX is a prescription medicine that is used to treat seizures associated with Lennox-Gastaut syndrome, Dravet syndrome, or tuberous sclerosis complex in patients 1 year of age and older. https://ad.doubleclick.net/ddm/trackclk/N5654.3695630THEMIGHTY/B25145162.336889159;dc_trk_aid=528633434;dc_trk_cid=172181409;dc_lat=;dc_rdid=;tag_for_child_directed_treatment=;tfua=;ltd=”>EPIDIOLEX is safe and effective in children under 1 year of age. Please refer to the EPIDIOLEX Medication Guide and Instructions for Use for additional important information. You are encouraged to report side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch , or call 1-800-FDA-1088. You may also contact Jazz Pharmaceuticals at 1-833-424-6724 . EPX-25927-0422

    Rachel Ablondi

    What I Want Doctors to Know About My Son With a Rare Form of Epilepsy

    My 21-year-old son Andrew is diagnosed with epilepsy. His epilepsy diagnosis is a rare one. Lennox Gastaut syndrome (LGS) affects only about 50,000 children and adults in the United States. One of the most difficult aspects of LGS is uncontrolled seizures. This is definitely the most difficult part for Andrew and our family. I’ve learned a great deal over the years from Andrew’s neurologists, and now as a seasoned mom to a son who requires constant care, I would like to share my perspective in return. I want to maintain the relationship with Andrew’s neurologist, and also continue our partnership in Andrew’s care. First and foremost, please understand there is nothing I want more than for Andrew’s seizures to be controlled. That one thing is by far my greatest wish for him, and I cannot make that happen. That weighs on me every single day. I started like everyone else as a new mom, and was immediately thrust into a world involving constant medical care, difficult decisions, medicines, medical equipment, therapies, dietary issues, seizures and so much more. In those early days, I had to do my own research. I found the need to connect with other families facing the same circumstances. I don’t know of many other diagnoses where parents and their children live this kind of life. Day in and day out we live in constant fear of losing our children, and helplessly watch daily, sometimes hourly seizures, and medication ups and downs. This life can bring you down if you let it. As Andrew’s mom for over 21 years, I can for certain say, I am an expert in “Andrew Care.” Please don’t question my decisions without experiencing personally our day-to-day lives. To get to the medical appointment to see you, I’ve lost some sleep the night before as I have worried about every move I will make to get my son out of our door, and then to your office. I have other children at home I have to arrange care for as well. I drive over an hour to get to your office, and have to circle your building until a parking spot opens that will accommodate my larger wheelchair-accessible van. We wait our turn in the furthest corner of the waiting room so Andrew won’t pick up germs from someone else. My son likes to make noise in quiet settings, and I frantically try to keep him occupied so he doesn’t make too much noise in the quiet waiting room. Oh, and I pray he doesn’t seize while he’s waiting. When my son seizes his arms and legs shake violently, and he’ll gasp for air. I don’t want others to see him this way. Andrew deserves his dignity, and not to be stared at. Doctor visits are stressful even before they begin. I waited six months or more for this appointment; please give me your undivided time to hear my questions and concerns. I know you’ve seen many patients today. I’ve been to enough appointments over the years to know you’re on a tight schedule. I have researched LGS online. I have attended conferences in person. I’ve made it a priority to educate myself as much as I can, and I don’t see how that’s a bad thing. It’s OK that I’m an educated caregiver. Medications do have side effects, especially anti-epileptic medications. We’ve learned this all too well. Sometimes when there’s an issue, it’s the simplest thing, not the most complicated. These medications aren’t benign. Consider me part of the team. My son had a procedure done recently at the hospital. A few days before the procedure, the nurse called me to go over pre-operative instructions. She asked me about Andrew’s seizures, and admitted she’d never heard of LGS. She made sure that my husband and I could be by our son’s side in the hospital. Ask for my input, ask me questions. Knowing that you are interested and having your respect as someone who knows her son and his diagnosis validates the job I am doing. Meet me where I am. When my son was 2 days old, he seized. He was whisked away from me and brought behind closed curtains. I saw the urgency in your care, we needed answers, and we entrusted his new, fragile life to your expert medical care. I was terrified. I knew nothing. You cared for my son, ran tests, shared results, directed me on what steps to take next. I was a new mom. I needed direction. You gave that to me, and even more, you gave me a shoulder to cry on. When my son was 1 and seizures that were under control returned as clusters of seizures, Andrew was given the diagnosis of infantile spasms. Heartbroken and scared, you gave me options for treatment of this new diagnosis. Over the next few years, stopping the variety of seizures was now the main focus and you recommended medications, diets and alternative therapies. Andrew tried it all. Over 15 medications and alternative therapies to be exact. Once again, you directed me with all the knowledge you had available to you, and you were there to answer my questions as we introduced new treatments. As Andrew grew older, his seizures didn’t stop, but my knowledge and experience strengthened. This is when you agreed with me that LGS was Andrew’s diagnosis. You ran more tests after those medications didn’t control his seizures. You checked whether Andrew was a surgical candidate and whether the VNS would decrease or lessen his seizures. I went down any path I could just to stop the seizures and allow Andrew some freedom from the effects all those seizures have on him. I knew you were still offering your best medical tools for this difficult diagnosis. Now, as an adult, my son still seizes. Unfortunately, very little has helped him. Seizures and medication side effects have taken their toll. I have to change my views now. I have no choice. There’s life to be lived without as many medication trials. Now, what’s important? I need to ask: Is Andrew happy? Is he comfortable? Does he eat well, sleep well, is he healthy overall? Does Andrew lead a full life? Does he stay out of the hospital? Yes. Your care for now is to maintain his quality of life. Finally, please know that I chose you to be my son’s doctor. I asked around. I researched your credentials. I am desperately seeking your input, your knowledge, your expertise on how to help Andrew. That will never change. At this point I want you to hear my words, my experiences. It’s been overwhelming. My hope is that you’ll continue to treat Andrew’s future care with your knowledge, medical expertise, compassion and understanding. Who knows, maybe my views will also help in your care for Andrew, and in the care of others as well.

    Angie Haddad

    Our Son’s Journey With Down Syndrome and Lennox-Gastaut Syndrome

    Our first child, Jordan, was born with Down syndrome in 2001. I was 31 years old. My husband and I were not expecting this diagnosis and it was overwhelming at first. Jordan stole our hearts the moment we saw him. As soon as was possible, Jordan received early intervention. After evaluations, he was considered to be in the mild/moderate range of intellectual and physical disabilities. He was a wonderful child, with some behavioral issues starting at the age of 3. We got most of his behavioral conditions under control around the time he started first grade, but he would have some challenging days and was diagnosed with ADHD, anxiety and a sleep disorder. We had some tough days with his behavior and all of his endless energy but with medication, therapy and patience, we were making it work for the most part. At the age of 9, our energetic little boy began falling for no reason and had several injuries to his chin and face. We had no idea why he was simply falling to the ground. Once while getting stitches for the second time in less than a week for a chin injury, the doctor thought Jordan may be having atonic seizures. He told us to call a neurologist and make an appointment. It was difficult getting an appointment and we were on a waiting list for three months. I was frustrated and told our school nurse. The school nurse told us the next time Jordan falls, take him directly to the ER and tell them you think it’s a seizure. I did so, and this was some of the best advice I received since I knew we could not wait around for three months to figure out what was becoming more apparent each day. It was confirmed in the ER that Jordan was having seizures. They ran an EEG on him for a few days and discovered abnormal brain activity. I felt relieved to know what was causing the falls, and thought a medication could provide the help we needed. He started taking medication, and it did not help. We increased the amount – it did not help. For weeks this continued. For weeks, it seemed to get worse – even more seizures than before. Then, we tried another medication and it did not help either. I cannot even remember all the names of the medicines, but I know we tried at least eight different ones. Some medicines caused undesirable side effects, worse than the seizures themselves, such as psychotic and manic behavior, sudden weight loss, insomnia and incontinence. After several months of taking a variety of medications, Jordan was later diagnosed with LGS, Lennox-Gastaut syndrome — a rare seizure disorder that can be life-threatening. There is no cure for LGS and the best thing one can do is to manage the condition. Hearing this was like the first time I heard Jordan had Down syndrome – it was a lot to take in and I wish I could do something to help my child not struggle so much in life. Since no medication or combination of medications were working, our second line of defense was VNS therapy (Vagus Nerve Stimulator). The VNS was surgically placed inside his upper chest to help with shortening and decreasing seizures. At first, the VNS appeared to work but as time progressed, the seizures came back. With this failure, our next strategy was brain surgery. In 2015, Jordan had a special brain surgery (a partial corpus callosotomy procedure and then a full corpus callosotomy was done four months later) to once again fight the seizures he was routinely having. The surgery did not give him freedom from all seizures, but it was able to give him a better quality of life. The surgery was not an easy one – I felt guilty putting him through this and not knowing what he would be like afterward. I knew it would not be 100% effective, but at this time, I just wanted him to have a more comfortable existence – his life was completely restricted before his surgery for fear of falls and his daily seizures were causing him and us to be more socially withdrawn and stressed. After the surgery, his seizures were less severe and less frequent. However, the brain surgery did negatively impact his speech. Speech was one of his best attributes and this was a big loss. Fortunately, with increased speech therapy, he has made some improvements. In the Fall of 2019, Jordan began taking a new medication combo. At first, it made him extremely tired. He would sleep 18 hours in a 24-hour day. Once the dosage was continually adjusted (after several weeks), we did notice some improvements. Currently, Jordan takes less medicine than before (since last Fall 2019) and has some seizure-free days, but is not seizure-free. On an average day now, he has one or two small seizures a day, but remains somewhat sleepy (but is up a majority of the day instead of sleeping 18 hours a day). He has regained some speech and is more active than six months ago. Overall, he is doing his best now than in several months and years ago when his seizures first wreaked havoc on his life. There are still some rare days when he may have a clustering of seizures. On those days, we use a seizure rescue medicine. If the rescue medications do not work, we notify his neurologist and take him directly to the Mayo Clinic ER in Phoenix. Our life now: Jordan can say words with prompting and has some independence at home with activities, but still requires much supervision for safety reasons. He needs help with eating, bathroom and bathing. For outings, we use a travel wheelchair to transport him safely. We use a velcro back brace to put around the wheelchair so he is contained well, and if he does seize in his wheelchair, he will not fall out of it. When we moved to Arizona from Georgia in 2017, we opted for a one-story house. Not dealing with stairs put us at ease not worrying about falls and injuries due to a seizure on the steps. At our old home, we used baby gates for stairs and would supervise him and escort him downstairs always. We have no hard furniture in his bedroom. We use faux leather brown ottomans to put his clothing and other items. If he falls at night, he will not hit a hard surface. We have bean bags and area carpets in his room to make for soft landings. We have large walking spaces throughout our house and furniture with protruding corners are nowhere near Jordan’s immediate living area. We still travel and live our lives but we bring his travel wheelchair, a helmet, and all of his medicines, including his rescue medicine. Jordan attends a respite program, but has stayed home most of 2020 as COVID is a big threat to his life. He has friends, he loves music and Disney Pixar videos, his dogs and has a full life with our accommodations. It has not been an easy journey. Most people will never know what it’s like to have a medically complex child who also has Down syndrome. We simply do what we can, make it work and always do our best for our son.

    Rachel Ablondi

    The Importance of Taking a Respite Break as a Caregiver and Parent

    I just returned from spending two nights and three days with six women I had never met at a home located only a few miles from my own house. And I loved it! I absolutely cannot wait to do it again. Why was this time spent with strangers so close to my own home, away from my four kids and husband so special? Let me fill you in. A respite inn designed for giving caregivers a much needed rest opened about two years ago in my hometown. It is located so close to my house it seemed silly to even consider staying there. How could a stay in a home so close to my own provide me any kind of rest? I finally decided though after hearing from so many others on a social media group as to how restful it was to stay that I would go ahead and make a reservation. I booked a room for a stay which was eight months away. If I needed to cancel, I had a few excuses ready and waiting. My son was sick, my mom needed my help, etc. If needed, I could back out. The weekend approached, I received an email reminder from the owner about my stay and she asked for confirmation that I would be coming. Did I really want to go? I knew I needed a break, but did I really need a break? I had just come back from a family vacation. I was good. I rarely get away from my four kids. I can count on one hand the number of times I have actually done that in 21 years as a mom. I was just about to cancel, when my husband pushed me and said, “just go.” So, I did. I arrived at 5 p.m. on a Friday evening at The Terrace Guest House in New Market, Maryland. From the street you can see the house is a beautiful, all brick, historic tavern home nestled among other historical homes in a very quaint and charming town, but the home is located on Main Street, which is quite busy. I had to admit I was a little skeptical. How was I gonna rest here? I entered through the front door and immediately a warmth took over. Oddly, the sounds of the passing traffic were non-existent. Instead I noticed the sounds of the steps I took on the rustic hardwood floors. It was clear this house has some history to it. It was beautiful inside. The stairwell was right in front of me, but I was drawn straight ahead to the kitchen. It was full of the modern amenities necessary in any state of the art kitchen today, but the wood beams added a homey, old timey warmth. On the butcher block countertop was a sign that welcomed me and the other six house guests. A quick turn to the left was a sun porch overlooking an immaculate backyard garden area. The area was bustling with colorful birds, energetic squirrels, cute chipmunks and rabbits. I didn’t realize it right away, but I would soon be enamored in every move all these creatures would make throughout the day. I found myself admiring things like the wallpaper, and touching the lush blankets draped over chairs instead of what I am usually looking for, which is a way to get my son’s wheelchair in and around the house, or picking out the best spot to change him. I was drawn to continue exploring this warm, inviting space. At each turn, every decoration, detail and furnishing was perfectly in place. There was a lot to explore here. Thankfully, I had all weekend to do so. In the living room of the house, I was welcomed by four of the guests. We shared a little about ourselves, and a little about our sons and daughters who share the same diagnosis. Our kids all live with the diagnosis of Lennox-Gastaut syndrome (LGS). LGS is a rare form of epilepsy. Those who struggle with it deal with daily seizures, take many medications that do not offer much help, often have intellectual delays and/or behavior issues and may have host of other issues. We live in different states, have different aged kids, but our stories were all very similar. Most of our days are taken up with scary seizures, medication dosing, doctor appointments, diaper changing, therapy appointments. I had never met these ladies, but quickly realized we were living similar lives, involving full time caregiving and very little rest. They were just as educated as me on CBD Oils, epilepsy medications, excellent doctors and hospitals, ER visits, behaviors and seizure safety. It was refreshing to be around others who get all that comes with the LGS diagnosis. My four kids, including my 21-year-old son who is diagnosed with LGS, were at home with my husband. He would pull double duty this weekend, taking time off work, and taking care of all the activity at my home. One mom had arranged with several different caregivers in several different homes to stay with her son so she could be there, another had relied on close family members. We had all made arrangements long ago, some easier then others so we could benefit the most from this much needed time away. Very quickly, we learned that we all were coming from pretty much the same place. We understood each other. We know how common it is for others to take for granted an uninterrupted night of sleep, time alone, time to just read a book, eat a meal or shop without anyone else. These weren’t things we were used to. We were all here to simply get some sleep, have some quiet time and to just get a break from the caregiving we do every second of our days. We wanted to sleep without our child screaming for us, or without a seizure waking us up. We wanted to read a book in one sitting. We wanted to eat at the seafood place where we usually cannot. It was immediately clear we were all grateful to be away here in this cozy space with other mothers who can relate. Our first (and only) important decision of the night, was where would we have dinner? And guess what? We really did eat dinner at a restaurant we chose, at a time we chose, and we simply enjoyed the taste of the food, all while enjoying each other’s company. During dinner our conversations turned to favorite movies or tv shows, favorite mixed beverages, what we would be doing in our own free time this weekend. The worries of seizures, administering medications, caregiving had thankfully taken a back seat. That was so refreshing. We arrived back at the inn on that first evening and enjoyed a little more conversation, and then we all went our separate ways. I was delighted to make my way to my comfortable room. I couldn’t wait to climb into the bed which was so plush and inviting. Gosh. I was truly alone. I am rarely alone. I chose to read. I could hear in the distance the racing of the cars on the nearby interstate. In another time, I might have been bothered by that noise, but here and now it was one last reminder that it was OK for me to take time for myself even though all the craziness of the world was still swirling around me. I was quickly and happily coming to the realization that I had two more days here all to myself. I didn’t realize how much I had really needed this time. If you’re a caregiver, a respite break may be just what you need, too. For more information on LGS, please visit ​www.lgsfoundation.org For more information on respite, please visit ​www.amothersrest.org

    Community Voices

    Online support when you're living with a rare disease

    The year was 1990. My younger brother Michael, age three at the time, started having seizures out of nowhere. I was seven years old; I had never seen a seizure before and thought he was going to die. I had no frame of reference at that young of an age to understand what was happening to him; what is a seizure? What does it do to my little brother’s brain? And why (oh WHY?) did he continue to have dozens of seizures per day despite taking a few different medications?

    These questions ruminated in my young mind, but even more so in my parents’. They asked questions during their routine visits to the neurologist, and unfortunately, their regular trips to the emergency room, but were left with little to no answers as to why Michael was becoming more and more severe by the day and why his seizures were still so uncontrolled. At the time, my mom worked at our local library, and turned to periodicals and encyclopedias to learn as much as she could with the limited information she had access to. As a reminder, this was 1990, before the internet’s golden age, and before you could google your questions or symptoms and get answers in nanoseconds.

    It was a version of the Encyclopedia Britannica where she found a paragraph under the epilepsy section that described Michael perfectly: Lennox-Gastaut Syndrome. A rare and catastrophic epilepsy characterized by “mental retardation” (the term they used back then), multiple seizure types, and a distinct EEG pattern. My mom’s fears were confirmed when she followed up with Michael’s pediatric neurologist and received the formal diagnosis at one of his next visits. Not knowing anyone else who had a child with the syndrome, she felt alone and desperate for more information.

    Fast forward 17 years. The year is 2007, and the internet is ubiquitous. Facebook was gaining enormous popularity and other social networking sites (SNS) (i.e. Yahoo! Groups and Myspace) were being used as a way to connect with others electronically who shared similar interests, or of course, a rare disease. Other SNS would soon emerge in the next few years (such as The Mighty!). And boy, this time was ripe and ready for an LGS Foundation, which provided an excellent opportunity (finally!) for families to connect with one another online, to feel less isolated, ask questions, and form friendships with others who “got it”.

    2007 was the year that I founded the LGS Foundation, the first non-profit organization in the world dedicated exclusively to Lennox-Gastaut Syndrome. The impetus behind starting the LGS Foundation was my brother of course, but it was also compounded by nearly two decades of my family feeling isolated and scared. Michael was 20 years old at the time when the Foundation was launched, and we had never met, or spoken to, another family facing the same disorder. That all changed with the formation of the LGS Foundation and the ability to connect with families from all over the world through our website and social media channels/ social networking sites. The connections that were made through these platforms undeniably lead to the Foundation’s growth and what the organization has become today.

    This leads me to the topic of social support. Social support is defined as the way in which a person feels supported, especially during times of hardship or crisis, and how connected a person feels as a part of a supportive social network. For those of us living with a rare disease or caring for someone with a rare disease, you may have experienced increased social support from using SNS without even realizing it. I think one of the greatest things about social support from SNS is that it can be instantaneous and can transcend distance, time, and other barriers. Snail mail? Who needs it when you have instant messenger!

    Sometimes, I need to take a step back and think about what life was like before the internet. How did our family manage those feeling of isolation, the lack of instantaneous information, and the dearth of information available to us as patients and caregivers? I’m not sure, but we did. Thank goodness for the internet and what it is today, and thank goodness for other families, like you, who are willing to offer the support that we all need through social networking sites and websites like this one.

    Community Voices

    CBD Crash Course: The Hype Lines

    Navigating the Cannabidiol

    (CBD) product landscape as a patient can be overwhelming.  Fancy websites with glittery products hint

    that by adding CBD to your health care regimen that YOU TOO could live the life of your dreams.  All your pains will just go away and vitality

    is yours for the taking.  CBD is being marketed in everything from

    hamburgers to pillows, and active wear to coffee.  Everywhere, people are talking about the

    wonders of CBD.  When we listen carefully,

    we hear consumers talking about www.foxnews.com/health/just-how-safe-are-cbd-products-experts-weigh-in and products that www.kmov.com/news/cbd-consumers-concerned-about-products-wit....  Patients

    are also talking about www.projectcbd.org/medicine/cbd-drug-interactions/p450 they didn’t get warnings for and being misled

    about potential negative consequences, like being dismissed from pain

    management over a failed drug test.  Patients

    don’t have the luxury to think about supplements like CBD as nutrition.  We have underlying issues and conditions that

    these supplements can legitimately affect, especially when it comes to immune

    system function.  It is important that we

    treat cannabidiol just like any other therapy and ask the same questions we would

    for pharmaceuticals.


    has been an amazing tool and according to a blog.arthritis.org/news/patients-tell-us-cbd-use
    , many with arthritis and autoimmune arthritis diseases

    are trying it out.  A statement by www.who.int/medicines/access/controlled-substances/Cannabidi...
    found that CBD had no potential for abuse, a good

    safety profile, and most adverse effects were from pharmaceutical interactions

    and underlying conditions.

    Unfortunately, those of us with Chronic illness and fighting terminal

    illnesses fall into those last categories.

    We are almost always on pharmaceuticals and have underlying conditions

    or symptoms we need to accommodate.  It

    is up to us, the patient and consumer, to question claims being made, ask for

    science, and check for interactions.  Always

    double check the information being given with a trusted member of your medical

    and/or legal team.

    CBD works

    because it interacts with receptor systems in our body’s cells.  While this is important for a healthy person

    to know, it becomes essential when someone is considering CBD to help with

    chronic/terminal illnesses.  A lot of

    these interactions are desired, but people with chronic illnesses need to know

    what to expect upfront.  Knowing there is

    a risk to mitigate, whether legal or medical, can make sure the patient has the

    best chance for success.  Here are some

    common misleading marketing buzzwords that contribute to hype and general

    misunderstanding.  Marketing is designed

    to make you feel safe about a product.

    All products have hype, and the CBD industry is no different.  Their products have some serious hype, and it

    is our job to dig through it.

    Here are the top 6 patient

    picks as the “most confusing hype-lines”.



    even from hemp and isolates, are not “legal in all 50”.  Internationally, the same ambiguous situation

    exists.  Always check your local,

    state/province, and federal/country laws before choosing a product.  You

    may find there are THC limits, local areas may have banned hemp CBD, or some

    other complication exists.  Most

    CBD sales sites claim hemp CBD products are www.buscherlaw.com/state-hemp-legality, and will cite either the 2014 Farm Bill or the

    2018 Farm Bill.  The 2018 Farm Bill did

    deschedule cannabinoids found in hemp, but it placed them under the FD&C

    Act, giving the FDA full regulatory authority.

    The FDA classifies all cannabinoids as “www.fda.gov/media/112426/download
    ”, which makes them not so legal when introduced into

    commerce.  Just as before the Farm Bills,

    hemp and hemp CBD is subject to state legality.

    This has created a very ambiguous legal framework that no patient could

    really understand to comply with.  Add

    this governmental nonsense to the constant hums of CBD marketers trying to

    practice law and it becomes next to impossible to follow along.  Websites and hemp traders will sing about the

    federal deschedule but forget to mention that many areas still consider hemp

    CBD and CBD isolate to be illegal.  For

    example, check out this statement from atg.sd.gov/OurOffice/Media/pressreleasesdetail.aspx,

    “Current South Dakota law makes industrial hemp illegal and all

    forms of CBD oil illegal.  The only exception is the prescription drug

    Epidiolex which was recognized by this year’s legislature as a controlled

    substance under SB 22.  Governor Kristi Noem signed that bill into

    law on February 19, 2019, with an emergency clause, therefore having the law go

    into effect immediately.

    This action leaves any other use or possession

    of CBD oil as a violation of state law.”

    Always check with the local

    authorities to see if CBD is legal in your area.  Legalities are complex and “legal” doesn’t

    always mean “legal”.

    2.      You will often hear phrases like “FDA

    Compliant” or “FDA Approved”.  The only

    FDA approved CBD product is Epidiolex.  If the product is marketed www.fda.gov/consumers/consumer-updates/it-really-fda-approved, walk away.

    Epidiolex is a prescription CBD tincture that is rarely prescribed for

    Dravet Syndrome and Lennox-Gastaut Syndrome and is the only FDA Approved CBD

    product.  Also know that hemp CBD

    manufacturers are still www.fda.gov/news-events/public-health-focus/fda-regulation-c... to come out with their regulations, and as

    of this publication, they have not yet done so. (March 2020) “FDA Compliant”

    can mean many things.  Their farm may be

    FDA compliant in some way, not necessarily relating to hemp.  The packaging could be FDA compliant.  This phrase does not imply the product is

    approved by the FDA, or that the product is more trustworthy.  Right now, any implied FDA stamp of approval

    should raise eyebrows.  Make sure the

    company is clear about what they are being “compliant” about and whether it is

    relevant to hemp.

    3.      In the United States, CBD (even isolate

    use) is illegal in minors unless you participate in the state medical cannabis

    program.  Make sure you consult with a lawyer that specializes in

    CPS cases before you make any decisions.

    It seems so

    contradictory that www.youtube.com/watch

    use when you can purchase it in every corner store.  Unfortunately, every state has a loophole

    that allows them to investigate, and only a few states have taken steps to

    protect families from CPS interference.  If your state has a medical cannabis program, protect your

    child and your family.  We observed that

    investigations involving parents who are actively on the state registry tend to

    get their cases dropped.  Unfortunately,

    a lot of doctors and CBD companies are telling parents that they don’t need

    medical cards to give their children hemp CBD or CBD isolate.  Those parents are finding out the hard way.  If a salesperson is forceful and insisting

    that you don’t need a medical card, this is a red flag.  For more information and

    sources, check out this article Is It Legal to Give CBD to Children?

    4.      Watch carefully if you start hearing

    phrases like, “You have an endocannabinoid system, so you need CBD.”  Yes, you have an endocannabinoid system, and

    yes, it could plausibly be deficient.

    However, the www.projectcbd.org/science/cannabis-and-immune-system, and not something you just want to throw

    stuff at.  Right now, everything is

    theory and pre-clinical and only the most popular theory (endocannabinoid

    deficiency) is getting press time.  There

    could be other issues like over stimulation, receptor issues, and more at

    play.  Not every issue is going to be an

    endocannabinoid deficiency, or specifically related to what CBD has to

    offer.  Research is finding new

    endocannabinoids, new receptors, and new functions all the time.  Chronic illness is hard on our body, and we

    don’t have the extra leeway if we make a mistake.  Be on the lookout for those implying that CBD

    is something your body needs. This is a commonly used phrase with no real

    meaning.  Your body also has an opiate

    receptor system.  That doesn’t mean you need

    opiates or insinuate opiates are “good for you”.

    5.      Be wary when someone implies CBD is safe

    because it is from a plant.  Always

    check with a pharmacist to see if there are any important interactions you need

    to be watching for. Make sure

    you critically think about any blanket statements being made.  As children growing up in the hills, we were

    always told not to eat random berries in the woods because they could kill people.  There were mushrooms we couldn’t eat, and

    plants we had to take great care not to touch.

    Trying to make someone believe an active chemical compound is safe

    simply because it’s a plant is nothing more than a comfort zone marketing

    ploy.  The truth lies more in the

    middle.  Cannabis does have interactions

    within the body.  If it didn’t interact

    with the body, patients wouldn’t be fighting so hard for access.  Cannabis works on multiple receptor systems, www.projectcbd.org/how-to/cbd-drug-interactions, and can even cause some adverse

    reactions.  That is okay.  Often these interactions in the body are how

    we get relief, start healing, and can then talk to our doctors about lessening

    the pharmaceuticals.  I’d rather someone

    be honest than to find out when liver ALTS measure 588.   We watch for interactions and side effects

    with every other active therapy, whether supplements or pharmaceutical.  CBD and cannabis are no different.

    6.      Is CBD from hemp or CBD from “marijuana”

    better?  Guess what marijuana with a THC content at 0.3% or lower is?  Hemp.  Cannabidiol

    the molecule is the same whether it comes from something someone calls “hemp”

    or something called “marijuana”.  The

    only difference is going to be THC levels.

    Most CBD extracts come from low-THC cannabis, or hemp.  Whether an extract is effective depends on

    how your body reacts to it, and what other things are in the extract keepitlegalcolorado.org/targeting-therapy not whether it was sourced from hemp or

    “marijuana”.  If your body responds

    better to higher THC levels, then CBD from “marijuana” (or CBD with higher

    levels of THC) would be better.  If you

    respond to low-THC CBD extracts, then hemp could be the way to go.  The plants are all cannabis.  Patients really should know what cannabinoids

    and terpenes are in their products anyway.



    Sponsored By
    Kayleigh K

    The Alexa Skill That Made My Son With Lennox-Gastaut Syndrome Light Up

    This sponsored article is brought to you by Eisai Inc. Kayleigh was compensated for her time in writing this article. Any caregiver of a child with a rare disease can tell you that tools designed to support your kid tend to be few and far between. As a “rare” family, we’re constantly going through different types of therapy and doctors, not often feeling like they are truly part of our world. It’s remarkable when you find a tool that makes your child’s eyes light up. For my family, that tool is a sweet little (virtual) jellyfish named Ella. To understand the impact Ella the Jellyfish has had on my family, I first need to give you some background on my son, Dylan. He’s 11 years old and was diagnosed with Lennox-Gastaut Syndrome (LGS), a rare and severe form of childhood-onset epilepsy, when he was five. His challenges started right off the bat. He had a stroke in utero and started having seizures immediately after he was born. As he got older, he started having seizures more frequently, and nothing seemed to help. Even after he was diagnosed with LGS, it was still a battle to control his seizures, which included upwards of 400 atonic seizures every day – these cause his head to drop and lead to issues with posture and falling. He also had absence seizures, which cause him to “zone out” and become unresponsive, as well as tonic-clonic seizures (what most people think of when they think of seizures, when a person falls and convulses). These seizures contributed to Dylan’s developmental delays. At first, Dylan was able to do things other toddlers do, like talk and walk, but eventually he underwent somewhat of a reversal and started having difficulties with walking, speech and cognition. Amazingly, now his seizures are well controlled, but his mind still has so much activity and sometimes gets overloaded. This leads to frustration when he wants to do something but can’t be as independent as he’d like. Ella the Jellyfish came into our lives when Dylan and I went to the LGS Foundation conference earlier this year in Seattle. At the conference, physicians, advocates, and Eisai Inc. came together to share their insights with each other, as well as new technologies on the horizon. While exploring the conference, we discovered this new virtual tool designed specifically for kids with LGS called Ella the Jellyfish. Ella is an Amazon Alexa skill – in other words, you interact with her by giving voice commands to your Amazon Echo or other Alexa-enabled device. The development team who created Ella the Jellyfish understood that kids with LGS deal with challenges like speech, cognitive delays and limited mobility. Ella is designed to provide solace, fun and support to children and their caregivers by providing activities that may allow the child to use Ella’s features on his or her own, despite their challenges. Once you download Ella the Jellyfish from the Alexa skill store, you can get started by saying, “Alexa, open Ella the Jellyfish.” Then, you can instruct Ella which activity you want to do. For example, say, “Ella, read a story,” and her soothing, friendly voice will do just that. She can also sing songs like “The Alphabet Song,” lead you in a three-minute meditation (one particular session features relaxing ocean waves), and play games like “Ella Says,” “Freeze Dance” and “Color Hunt,” which get you moving and interacting with the environment around you. She’ll reply to your commands, essentially becoming a fun new friend who wants to play and can also be a calming presence when it’s time to chill out. Although Dylan has some speech and cognitive delays, he is able to interact with Ella easily. (Depending on your child’s abilities, you as the caregiver could take the lead with commands.) His face absolutely lights up when she talks back to him. When Ella reads him stories, he can’t stop laughing. The cutest part is when he has her make funny animal noises – he giggles the entire time. He has the voice commands down pat and can’t wait to show me how Ella works. It is adorable to watch. Communication can be difficult for Dylan, so the fact that he can talk to Ella and she talks back is remarkable. Although most kids love technology, Dylan sometimes struggles to use the games and devices other kids his age use, and we have to try and find adaptive versions. However, he can play with Ella on his own. Ella also helps him want to get up and move, which ordinarily is a challenge for him. But her games make physical activity fun. Dylan loves playing with Ella on weekends, and she is a helpful calming tool when it’s time to go to bed. Of course, Alexa is also a valued toy in the (virtual) toy box for LGS parents searching for ways to keep their kids entertained. It’s hard to find tools that will fit your needs and lifestyle when your child has a rare disease. As an LGS family, our day-to-day is similar to the daily life of families with typical kids but multiplied by 20. It’s a constant whirl of doctors, therapies and stress. We learn how to roll with the punches and do what we have to do to get through the day and support our kids. But any time we can find these little moments of joy, like what Dylan experiences when he is playing with Ella, I don’t take it for granted. I’m thankful Ella the Jellyfish is now a part of our family. Learn more at Ella the Jellyfish , and visit Amazon to enable Ella for free on Amazon Alexa.

    Powered by

    Why It's OK to 'Drop My Sword' and Cry as a Parent

    My daughter has been living with Lennox-Gastaut syndrome (LGS) for exactly 23 years. She’s 25 now. Daily, relentless seizures took over her life and set us down a road none of us even knew existed, let alone thought we’d find ourselves on. 23 years is also the exact amount of time I’ve had to be my daughter’s fiercest warrior. Seizures robbed her of so many things. And it’s robbed her of her voice, so I advocate for her as much as possible. I once started compiling a list of all the roles I’ve taken on over the years to try to help her. All the battles I’ve had to fight. Roles I was never trained to take on, but were thrust in my lap nonetheless. Here are just a few, in no particular order: Emergency medical technician (seizures don’t always end) Ambulance driver (Did you know 911 can actually put you on hold? We’d drive ourselves.) CPR administrator Doctor Nurse Physical therapist Dietician Medical detective Safety patrol officer (I should record “wear your seizure helmet” and just hit play.) Lawyer and estate planner End-of-life planner Advocate Oh yeah, and Mom. Which of these hats I wore in a day depended on whichever way the “seizure winds” blew us. Seizures struck every day, but some days it was only five to 10. Other days, she had hundreds, too many to count. On those days, we were lucky if we managed to eat, get dressed and make it out the door. Eternally vigilant out of necessity, I’d pick up my sword each day and fight our way to the best possible treatments, therapies, and life for my little girl. Most of the time, it wasn’t actually people I was fighting against. Rather, it was unwitting agents in a broken medical system. It’s a system that is definitely not working for patients and their loved ones. It’s failed us many times. Health care providers don’t think it’s working. Payors aren’t happy. The government debates it daily. I keep wondering who the system is working for. I’m hopeful things are changing for the better. It’s slow. Over the last 23 years, I’m happy to report I’ve also become what I hope some would say is a good advocate, not just for my child, but for those that will come after her. Because of my child, I pursued a PhD in neuroscience and helped advance the field of genomic medicine (including helping my daughter). I’ve worked tirelessly to bring the patient voice to all aspects of research, therapy development, health care, and policy. And I’ve met some of the most incredible, inspirational people that give me true, unfettered hope for the future. For the record though, I admit that I do cry. Some days, I just need to drop my sword and cry for just a while. I allow it. I need it. During this time, I send myself to my room (for everyone’s protection) where I am allowed to say anything, be anything, and think anything. I can cry and rage and beat my pillow with that blue baseball bat I keep in the closet nearby. I can kick and scream and yell and bite (just not to any living things). I can cuss like a sailor, get bent out of shape, add insult to injury, bark up the wrong tree, compare apples to oranges, and have my cake and eat it too. I can even say that I hate LGS. I can do all of these things. But my one rule (apart from not harming the living) is I can’t stay there. After my tantrum is over, I must move onward and upward — somehow. I used to feel horribly guilty about these moments, which happen a few times a year now, more often in the early days of her illness. But oftentimes, after these dark moments that I’m not proud of, I emerge with a new realization, a new understanding, and sometimes a new acceptance of this road we have been set on. It’s like I shed an old skin, making way for a new one. A tougher one. It’s purifying. Then, I remember why I fight. I fight for my daughter. I fight out of love for her, as she lives and loves despite her so many challenges. Her bruises, her bravery, her tenacity inspire me. And when the outburst is over, and I’ve remembered my “why,” I can now wipe away my tears, pick up my sword, and get back in the fight. We have a future to change. Keep fighting my fellow warriors.

    Kelly Arango

    Parenting a Child With Lennox Gastaut Syndrome: What to Know

    As the mother of a child with Lennox-Gastaut syndrome (LGS), there are many things I wish I had known after the diagnosis. I hope this list will help other parents who are starting out on their LGS journey alongside their children. 1. You are not alone. When my daughter Isabela was diagnosed with LGS, it was very overwhelming and scary. It’s not everyday your world is shattered into pieces when you learn your loved one has a condition with no cure. Finding others going through this can be a big help! When I found the LGS Foundation, I felt like a part of a family– a family that was able to understand my struggles. Knowing you’re not alone helps cushion the roller coaster ride. 2. Take one day at a time. It sounds basic, but trust me, you will need reminders. This is extremely important for your sanity. This roller coaster ride hast its ups and downs. Worrying about the future will add unnecessary stress to your life, when you have enough as it is. Never lose hope and never give up on your loved one with LGS. 3. You are your child’s best advocate and voice. No matter what, always know you have the last say for medical, therapy, and school decisions. You know your child best, and therefore, even if you lack a medial degree, you are an expert when it comes to your loved one. You are more than qualified to make the best decision for your child with LGS. Always follow your instinct and weigh in quality of life in any decision you make. LGS is very complex and every case is different. 4. Find your new “normal.” Yes, it takes time to digest and embrace any diagnosis, let alone an LGS one. You will need to make adjustments to your daily living. You will be learning all this medical jargon that doctors, health care providers, and schools use. This will help you to better understand when information is being shared with you. In the beginning it will be confusing, but trust me — you got this. You will become a pro at managing situations that other parents would think impossible. Remember, with this new “normal,” never forget to enjoy life. 5. Enjoy the “inch-stones.” It was very hard for us when our Isabela never reached the milestones for neurotypical children. My heart quenched when I read those markers of what your child is “supposed to be doing” at certain points in life. This is why I came up with celebrating her “inch-stones” because any improvement is improvement. We celebrate the little things like responding to her name, smiling, feeding herself finger foods, and giving high fives! LGS has robbed us of many milestones, but we learned to appreciate her “inch-stones.” Celebrating your loved one’s accomplishments is key during this tough road. 6. Take time for yourself. “You can’t pour from an empty cup.” Thi saying is especially true for parents of medically complex children. Try and take care of yourself first. I tell my self this pretty frequently. Life can get busy when caring for a loved one with LGS. Between doctor appointments, therapy sessions, and school meetings, you are pretty much left with not time for you. You have to make time, even if it’s for a cup of coffee, a walk, or reading a book. Trust me, your body will thank you and you will feel refreshed. 7. Educate and raise awareness. Educating family, friends, and community its pivotal for success. Knowledge is power! I have found Isabela is better understood after explaining what LGS is and how we deal with it on a daily basis. Being open and willing to educate and bring awareness to the condition will open many doors for you and your loved one with LGS. Knowing my family and friends understand and cater to her needs at family gatherings and community activities has been a plus. If you educate others, you are helping to make your family more at ease, and in return, helping to eliminate the stigma with LGS and epilepsy. To learn more about epilepsy and related conditions, visit Living Well With Epilepsy.