Finding Strength in the Chaos & Hopelessness of Epilepsy

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As a parent it means your world has permanently changed. You will never see things in the same way again. You dread phone calls from their school because you know that it may be THE call. You have many sleepless nights because of seizures and potential for them, as well as several due to stress. All of the emotions, stress, and fear you experience stems from your love for your child. It will all test your resolve, but your child is worth it all.

As a nurse it is a little different. It starts as compassion, and as you bond with that child it becomes a little more personal. It can be difficult to watch them have seizure, especially as you grow to care about the kid.

When your life has an intersect between these two, there's a whole lot of emotions you will encounter. When I became a nurse I didn't think I could ever work pediatrics. I knew that having a child with severe medical problems would make it like rubbing salt on an open wound. What got me the job in pediatrics was my experience with different seizure types, and my employer sees it as a specialty of mine. I have had moments where I feel like my entire life revolves around seizures. Having my daughter has definitely had a huge impact on my professional life. It has allowed me to understand what the families go through in a way that can only be achieved by experience. My education and experience has also helped a few times in caring for her.

In both aspects you will learn what true strength is. You will see strength in the child that will surprise you. It leaves me in awe when I reflect on the strength of my child and patients I have and had. You will also find strength in yourself that you didn't realize you had. Will you recognize it? Maybe not when you feel like you need it, but even then it's there. You will see it though, when you have some time to breath and reflect on the chaotic moments. During those moments though, you will need to remember they are just that; moments.

Caring for a child with epilepsy is a labor of love. It has bad moments, but it has some pretty great moments too. Caring for an epileptic child means you always hold on to hope, even when it feels hopeless. Taking care of a child with seizures is having strength you may not even be aware of, even when you feel like you’re at your weakest. Being a caregiver of an epileptic child is knowing what love truly is, and the limitlessness of that love.

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About  Jason:

Jason Walker is a father of two beautiful daughters. One of which is severely epileptic, and has other health and developmental issues. He is a LVN for the last seven years and has worked  in pediatric homecare for over four years.

How We Got Started with CBD

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Aaron J Harding, MS is a retired naval officer and clinical laboratory scientist professional who has a 13 year old son with a neurodevelopmental disorder and rare disease, SynGAP Syndrome. This article is a summary of the countless calls and conversation Aaron has had with a number of parents asking him about CBD. Neither Aaron nor SRF (SynGAP Research Fund, who helped contribute to this blog) has any financial interest in any of the people or companies mentioned here. Further, none of this is medical advice, we are just parents sharing with other parents what we have learned to help our kids from day to day.

Our Journey

Confronted with a surgical option to control our son’s intractable seizures from a rare disease called SynGAP1 Syndrome, a friend recommended that my wife look into cannabidiol or CBD. After being put in touch with a family who had seen positive results, we began to research medical marijuana.

Having grown up in the 80’s watching Cheech and Chong and Spicole from Fast Times at Ridgemont High, we had to change our paradigm of marijuana. After talking with people, searching the internet and reading research articles, we grew more comfortable with the idea of using CBD. We spoke with our neurologist who wrote the script, then we were off to to see the medical marijuana physician who issued the card, which was crucial since our son is a minor child. Finding a local distributor for CBD wasn’t easy. Eventually, we had a 1 mL syringe with concentrated CBD tar delivered.

After a few days of giving a half a grain of rice sized amount — which was approximately 2.5 mg — we tested our son by placing him in front of patterned objects. We knew these objects triggered reflex seizures in our son. This time no seizures were observed. We were becoming believers.

After further research, we reached out to Jason David and started using Jayden’s Juice from Modesto, CA. Jason David is in the cannabis industry and his son has an intractable form of epilepsy called Dravet. Jayden’s Juice is what Jason David created for his son Jayden — there are a number of SynGAP parents in California who are very loyal to this product. For four-years now, we’ve had 100% control of our son’s seizures using Jayden’s Juice as a secondary medicine with clobazam. We tried to be on 100% CBD but saw seizures, plus the quantity of CBD increased driving up cost over $300 per month, so we had to reintroduce the clobazam.

Where to find more information

The following is information we found helpful in our journey with CBD. The documented benefits are real. Of course, it is recommended before starting CBD to discuss it with your physician. Additionally, any product used should be manufactured using Good Manufacturing Practices, which includes third party testing for quality and quantity.

Education and Support. Our primary internet sources of information on medical marijuana came from Dr. Bonnie Goldstein, MD and Realm of Care.. Here are a couple of videos that I recommend:

Dr. Goldstein on Medical Cannabis Treatment and Realm of Caring Research Registry. Additionally, Project CBD is informative with easy to read articles. We found numerous research articles on the use of CBD for seizures. Also, look for a local support group, this may take you outside of your comfort zone, but you won’t find a more supportive and informed group of people who can relate to your challenges.

Marijuana versus Hemp. Without getting into too much Botany marijuana and hemp are the laymen’s terms for different subspecies of the genus Cannabis. Marijuana CBD generally has 15–40% THC, while hemp is often 0.3% or less THC. CBD is the same molecule regardless of the plant it comes from, but CBD is extracted from the whole plant, so all the components — such as terpenes — of the plant are included, this is called the Entourage Effect. This is not a single molecule product, you are getting a benefit from the combination of cannabinoids like CBD, THC, terpenes, etc. In fact there are ten each having a different beneficial health effects.

Legality. With the passing of the 2018 Farm Bill this past December, hemp is removed from the Controlled Substances Act (major accomplishment) which results in a whole host of opportunities, but there is still a watch and see attitude for how this is going to all play out.  Without over simplifying this, essentially the federal government is caught up with states you have already approved its use and it now allows states slow to pass state legislation to align state with the new federal law. What doesn’t change, hemp will have virtually no THC, but Marijuana and the CBD oil derived from it has THC and is therefore illegal under current federal and some state laws. So, you can mail order hemp based oil, but not marijuana since USPS is a Federal entity. Confusingly enough, Epidiolex is now the first FDA approved CBD product for use in the U.S.

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Source: http://www.ncsl.org/research/health/state-medical-marijuana-laws.aspx

Charlotte’s Web Hemp Oil is widely available and can be ordered online anywhere in the US and, generally speaking, internationally.

If THC is available, why consider adding THC? CBD and THC work together on receptors which improves the effects of the CBD while CBD counters the psychoactive effects of the THC. Determining effectiveness of THC with CBD differs based on the medical condition. In 2018, the Minnesota Department of Health published a comprehensive review of medical cannabis research for defined medical conditions. For each medical condition, it describes what dose of CBD and THC, which is helpful as a guide. The ratio of CBD:THC you choose will be dependent on the individual’s response.

Side Effects/Drug Interactions. Based on Trial of Cannabidiol for Drug-Resistant Seizures in the Dravet Syndrome (Devinsky, O et al.), they reported side effects compared to a placebo group were diarrhea, vomiting, fatigue, pyrexia, somnolence, and abnormal results on liver-function tests. There also is some indication that CBD might harm the liver, especially if taking valproic acid. In the article Interactions between cannabidiol and commonly used antiepiletic drugs (Gaston,TE et al.), there is a comprehensive table that list if there is a drug interaction (Table 2) and in Table 3, it lists whether or not the interaction is enhanced or inhibited. In our experience, the side effects of CBD have paled in comparison to those of other pharmaceutical products.

Dosing Guidelines. Dr. Goldstein has a comprehensive handout — A GUIDE TO SAFE AND EFFECTIVE MEDICATING. As a general rule, you want to start on a low amount and go up slow, increasing the dose approximately once a week based on observed effects.

We hope you find this summary of topics helpful which is important to think about as you begin your journey to using CBD. We can attest that CBD can change a person’s life, especially if they are struggling with a neurodevelopmental disorder and/or epilepsy.

News: Aaron’s and Monica’s son was one of 56 patients that participated in this study. Here’s an article summarizing a published paper by the American Academy of Neurology, peer-reviewed neurology journal “Neurology ”: https://tinyurl.com/y8a84py9

Link to: The Syngap Research Fund, Inc Blog site: https://medium.com/@syngapfund

Blog Revised: January 14, 2019

*Disclaimer: This blog post and linked articles were prepared and written by parents from the SynGAP Research Fund in their personal capacity.  The opinions expressed in this blog post and linked articles are the author's own, and do not reflect the views or opinions of H2L2 Technology, Inc.  H2L2 Technology, Inc. has no financial relationship in any of the people or companies mentioned here.  This is not medical advice.


Epilepsy, When the Chaos Hits Even Though You’ve Done Everything Right

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My 10-year old is the youngest of three – intelligent, loving, and a raging social butterfly. At the start of last summer, she began to mention that there were times when she didn’t know what was going on, or when she felt “strange.” I thought she was overtired and brushed her comments off - but the episodes continued.

That October, after she stared at the LG heater on the dining room wall of our home for about 10 seconds, wandered out of the room, and then called out to me in a disturbed voice, I finally conceded that something may be going on. I brought her in to have a preliminary electroencephalogram - a test that evaluates the electrical activity in the brain via electrodes on the scalp (“EEG”) - done at a nearby neurologist’s office, and scheduled a follow-up new patient appointment for soon after. Her EEG included the standard protocol – a photic test (flashing light), an HV test (hyperventilation), and then quiet rest.

At her visit, the neurologist questioned my daughter and myself, let us know she had read the scan and saw abnormal activity, and prescribed her a titration of Lamictal, 6 month visits, and a follow-up EEG in at least a year. Pretty standard stuff for the Epilepsy community, but a brand new world to us.

I was suspicious of such a quick and seemingly “easy” diagnosis, and am not the biggest fan of prescriptions, so I got a second opinion from a well-known pediatric neurologist who had been practicing for over 30 years. After examining and questioning my daughter, reviewing her EEG and giving her yet another EEG, not only did he second the first neurologist’s opinion, but he added that he would’ve followed the same exact treatment plan.

I realized that together these two specialists had over 50 years of experience in their field, and they were saying the same exact thing. I will never forget how I felt in his office that afternoon as he, in between jokes with my daughter, gave me more information on her diagnosis. I nodded and smiled, but inside I was sinking into despair. I was one of those moms who tried to do “everything right.” She was the only one of my three children whom I was able to nurse, and I nursed her for 9 months, supplementing with iron-rich baby cereal and ground proteins, fruits and vegetables starting at 6 months of age as her pediatrician and all the child-rearing books said to do. Just as I did with my older two children, I fed her as much organic food as I could, padded sharp corners in the house, kept an eagle eye out for danger while she played nearby, sang to her, recited rhymes, used descriptive words in conversation, read to her, bought her brightly colored toys, made sure to spend time playing with her while also making sure she spent time playing alone to teach autonomy, encouraged her talents, used positive reinforcement and redirection when she was misbehaving, and...and here were two neurologists telling me that something was wrong with my sweet girl’s brain.

I remember thinking defiantly - and feeling stupid while I thought it: “But she was the one I was able to breastfeed!” I was so angry. Tears waited in the wings; I had done everything right that I knew of and it didn’t matter because nature clearly does what it wants. I sternly told myself “Enough!” and “There are worse things!” I asked him if he thought she would “outgrow” epilepsy. I had heard of kids struggling with it in childhood and having no problems in adulthood. He laughed and said that while many things can bring on epilepsy, he’d given up trying to make those kinds of predictions. Verbally patting my back, he assured me she was in good hands with both himself and her first neurologist, and that they would make sure she was following the plan that was the best for her.   

I walked out subdued and in deep thought, while my daughter bounced out cheerfully, glad that her appointment was over. My mind was dark with frustrated thoughts, but it was a mild, sunny day and she happily practiced “Eight Days a Week” by The Beatles on her recorder while we sat in traffic trying to leave the city to go home.

Now I have an alarm on my phone for her morning and evening med doses, but we are not a family who is used to these timed, absolutely necessary type of meds. More than once I’ve grabbed her medicine and raced downstairs to her room in the evening, gently shaking her awake so she can sleepily swallow her Lamictal. I’m apprehensive about her sticking to her medicine routine when she and her sisters visit their father in Germany during the summer. I wonder if this will be a problem for the rest of her life. I mentally bite my nails as I worry about it getting worse as she gets older. I had read about people not being able to drive or seizing to death at night while sleeping.

But I also know that as much as the bad is possible, so is the good. And while I hate for her to be stuck on a medicine schedule, I am thankful. So far, Lamictal has given me back my happy, carefree girl who just wants to be a kid. She has not had one episode since starting it (knock on wood), but I know this is only step one of her epilepsy journey and is only one of many different kinds of steps in her lifetime. Epilepsy may play a prominent role and it may very well not. My job is to do my best, focus on the good, remain grateful, and to teach her to do the same.

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About Kimberly:

Kimberly K. was born in Wisconsin, has moved over 30 times, lived abroad, and is married with three children. She has a BS in Health Services Administration from Drexel University and works in the medical field. Her interests include languages, writing, traveling, video editing, and making memories with family and friends.


Finding Answers and Becoming the Epilepsy Warrior My Daughter Needs

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“March 28th at 3:40 PM.”

The neurologist turned away from the computer where he had been entering notes and looked at me quizzically. “You remember the exact date AND time?”

I was surprised by his surprise. How could I NOT remember the specifics of watching my daughter have her first seizure? It was a traumatizing experience and a clearly defined beginning point on her epilepsy journey. My journey as her advocate began with realizing how little information we had been given to care for her well-being and safety.

On that March day, C had a tonic-clonic seizure that cycled through three terrifying phases of tonic, clonic, and then back to tonic. Time was suspended in a horribly twisted tension as I both prayed for whatever was happening to end; while also wanting to stay in that moment forever because I knew at least she was still alive. I was convinced I was watching something trying to kill her. By the time we arrived at the emergency department (“ED”) of the nearby children’s hospital, I was sick with fear. We were fortunate to have a sympathetic ED doctor who calmed many of our worst fears but could give few answers. She told us to see a neurologist in the next two to three days. We left the ED anxious for answers from the neurologist and completely unprepared for how comically unrealistic it was to get an appointment that quickly. Despite efforts from my husband’s human resources department and our family doctor, the earliest appointment we could get was two months out. We were told to be thankful we got one that quickly.

The electroencephalogram (“EEG”) captured several absence seizures. C was diagnosed with Childhood Absence Epilepsy (“CAE”) with idiopathic generalized tonic-clonic seizures and prescribed Depakote. The neurologist made it sound very easy: the medication almost always worked, it rarely had side effects, and the seizures would be gone in two years.

The nurse gave us a single sheet of paper to get us started.  One side had some basic information from the Epilepsy Foundation of America. We were given a stern warning not to read anything about epilepsy except what was on that website. The other side had a list of famous people with epilepsy.  As we gathered our things to leave, I asked the nurse if there were any things I should look out for as we started giving C the medication. “No, not really.”

These were the tools and the information we were sent home with. No rescue medications. No safety precautions, and an unrealistic certainty that neurology itself rarely warrants. I didn’t even know enough to realize how unprepared we were. I left the appointment thinking we had gotten off easy. We would hardly have to think about it! I texted everyone the good news. I tossed the list of side effects the pharmacy stapled to her first bag of meds - why needlessly scare myself, right? - and gave her the pills without a second thought.

Of course, things are rarely that easy. C was a zombie and frequently fell asleep sitting up. She had terrible mood swings and often cried with stomach pain. At one point, the pain was so severe I called the nurse hotline and was told to take her to the ED to rule out pancreatitis. This time, we did not see a sympathetic ED doctor. He scolded me for coming to the ED despite my repeated reminders that it was one of the hospital’s own nurses who told me to come.  He lectured me for being an over-reactive mother who got too upset over a few seizures. “You know, some kids have grand-mal seizures every day. What are you so upset about?” He put his face inches from C’s face and said, “Have you ever heard of taking a Tylenol?” I left with lab work showing there were no signs of pancreatitis and a determination we would never be treated that way again.

I started reading research articles and neurology book chapters on Medscape and PubMed. I joined an amazing parent support group on Facebook. When her neurologist did not measure her drug levels with her first round of blood work, I got our family doctor to do it because I knew from other parents it needed to be done. I learned that her neurologist was wrong not to prescribe rescue meds and insisted he prescribe them. I started learning the different safety precautions that we were never told. When the neurologist insisted that Depakote could not cause the stomach pain that plagued C, I knew the patient insert had four different GI disturbances in its “most common” side effects list. I got information from our family doctor on adjusting her diet to reduce the GI issues. When we finally decided it was time to move to a new neurologist who better met my daughter’s needs, I was not surprised when he said her symptoms better matched the research on Juvenile Absence Epilepsy. I had seen the same research and had the same thoughts. Recently, when her neurologist decided it was time to change medications, we discussed research and the pros and cons of each medication together. I felt confident with the final decision.

The lack of information and education provided to newly diagnosed families is unacceptable. We must educate ourselves and advocate for our children. I worry about families who do not have the resources I have: graduate school training in reading and evaluating research as well as access to other parents who have more experience and can provide guidance and support. Eventually, I became a moderator in the Facebook support group that had helped me so much. I am heartbroken by the number of parents who have just heard the diagnosis of epilepsy and left that appointment without the basic information they need to care for their child. The medical community must do better. In the meantime, it will fall on parents to be the warriors their children need.

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About Susan:

Susan is a pediatric speech-language pathologist who works for Communication Interventions in Atlanta, Georgia. Susan lives in Decatur with her husband and their 15-year-old son, 11-year-old daughter, and three dogs. She enjoys reading (education and psychology are favorite topics), knitting, cooking, and yoga.

Being the Best Caregivers We Can Be with Good Record Keeping

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Our epilepsy experiences began at the birth of our second oldest who had obvious struggles from the onset, but for which we were left without a name, a label, a condition, or anything to explain the barriers she was facing … for many years. Subsequently, we had no targeted treatment to provide her that addressed the underlying issue head-on during this critical developmental time. Excellent record keeping was our key to obtaining her primary diagnosis, despite having subclinical seizures (non-observable symptoms). It opened the door to a neurologist willing to see us, and to memorably exclaim once the electroencephalogram (“EEG”) spikes revealed the truth, “We usually don’t get to see a kid like this.”

It is exactly because my record-keeping was the key to our daughter’s vastly improved future that I am passionate about tools that assist caregivers in organizing, accessing, and sharing with designated health partners their hard-earned data. We as caregivers are gathering data all the time - be it symptom tracking, appointments, referrals, specialist contact information, medical resources, and insurance coverage. The personal caregiver databases we create highlight our willingness and capability as a potential health partner with our medical team. These same databases help us be more efficient at being the “eyes and ears” of the team as each treatment option is evaluated for efficacy. Our research and observations provide key terms and references at our fingertips to communicate concisely to those beyond our medical teams in our charge’s social and educational circles. Good records help make us the best caregivers we can possibly be.

We are now seizure-free (to the best of our knowledge without constant EEG diagnostic confirmation) and medication-free, but my record keeping continues. Epilepsy is a chronic condition and it continues to require more of me as a caretaker.  We certainly have more peace and less urgency in our lives, but (optional: because children with no typical seizure symptoms are rarely seen, and when they do, have had a treatment delay, we don’t have a sense of how long-term epilepsy data, its risk factors and prognosis after seizure control, applies to us. Sudden death in epilepsy (“SUDEP”) risks, the odds of emerging to other types of epilepsy despite securing absence seizure control before puberty, we just do not know.) We stay vigilant. We sync and record data from her wearable medical tracking device. And, we have the concomitant health issues of anxiety, sensory and sleep that continue. I don’t mind synthesizing this information because it prepares me to have concise information to share and advocate with her education and medical teams.  Besides her symptoms, I journal education and physical accommodations and how effective they are. I track correspondence among other caregivers as my daughter’s world expands to include counselors, principals, a host of middle school teachers and after-school instructors. We reference our treatment timelines, success and failures as we assist others in their search for a definitive diagnosis and successful treatment. And, of course, we record her ever growing strength and capacities which is such a wonderful thing to document and share.

Among our health team, her education team, and the school district nurses that help communicate between the two, my records are the central file. Embarking on this life twelve years ago, I never dreamed I couldn’t just call up the pediatrician and demand all her health records as I could for my other children. I am her record. But my database reflects our trials, therapies and specialists -  those that worked and did not. We own our medical records, but until we make the effort to centralize them and make them accessible in the moment we need them, we don’t truly own them and make them work for us. True tools give us that. I was able to achieve much with what generic tools were out there and am excited to be play a small role in a product that is focused on the specific needs of chronic conditions.

During our undiagnosed time, I was not idle. As the primary caregiver during my husband’s frequent and long travels, I obtained for my daughter therapy for the known symptoms: speech, anxiety, sensory, and occupational. I collected data for potential diagnoses, tests and diagnostics taken along the way. I navigated misdiagnosis upon misdiagnosis and which doors became closed and open to us, recording it all. The physical binder became thick.

As a chemist turned medical librarian, my technical notes and observations were remarkable and appreciated. It gave us credibility and led us to a neurologist specializing in sleep disorders and what provided the justification for costly diagnostics to begin.

However, it was the migration from lugging a 3-inch thick binder to the online accessibility of a database that made a significant difference in the years ahead. The organization and updating of the database kept me focused and channeled energy into something constructive that was in my control. A critical benefit was the more involved my traveling spouse could be because he could follow the progress of our research and doctor consultations in real-time. He felt part of the process, part of the journey. He took a more active interest in our endeavors and I credit the real-time data updates to his being more readily accepting of the surprising diagnosis.  The follow through with the daily anti-epileptic drug treatment is a precise exercise in its timing and dosage and with threat of severe withdrawal symptoms if varied. He was on board from the onset.

During the treatment years my records continued to grow. Dosages had to be fine-tuned. Side effects of medication needed to be observed. Constant evaluation was required to assess efficacy of treatment. Follow-up appointments, diagnostics and blood test results needed to be tracked, reviewed and referenced. And, all along, the concomitant issues of anxiety, sensory, sleep disorder, physical and mental development issues needed to be remarked upon and judged whether they were affected by the treatment and to what extent. Through it all, I happily recorded the successes and joys. Such milestones marked our progress if only in a snapshot of a smiling girl. These visual reminders reminded me to remain hopeful and to highlight her strengths as we advocated for her with her medical and educational teams so she could reach her full potential.

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About Laura:

Laura lives with her traveling husband and four children outside of Portland, OR. She retired early from Hewlett-Packard to care for her young family and to pursue a hard-won diagnosis and course of treatment for her child with subclinical seizures. Already involved with the private, public and homeschooling opportunities in her area, Laura took advantage of a hybrid solution to educate her medically frail child in an efficient, confidence-boosting way amidst her young life of therapies and diagnostic procedures. Laura credits her science education and work experience for preparing her for her role as caretaker and mother.

Now seizure-free and medication-free, her child is thriving and attending school full-time in the local schools. Laura advocates for children in her school district with neurological conditions and related issues such as anxiety, sensory and delayed development needs. She contributes whole-heartedly to the international Facebook forum, “Parents of Children with Absence Seizures”.

Laura holds a B.S degree with a major in chemistry from Purdue University and an M.S. degree in Library and Information Science (MSLIS) from Drexel University with a concentration in the management of digital information and biomedical databases. Her career spans the chemical, pharmaceutical and electronic industries in her roles as an environmental and analytical chemist, research analyst, and corporate sci/tech and medical librarian. She is currently serving her second term as a Trustee on the board of the local municipal library.