To CBD Or Not To CBD

There is no shortage in the news of sensational headlines highlighting the miracles of CBD and medical marijuana as a treatment for epilepsy.

The articles write about children who tried any number of medications that failed to control their hundreds of seizures a day but were all but cured by CBD.

After two years of uncontrolled seizures, we were so desperate for something that could help our son so we brought CBD up with our doctors. At the time, it was illegal in Pennsylvania and our doctors weren’t comfortable talking about it because they had no experience with it. We were unable to get into the CBD trial happening at our hospital so we discussed moving back to Colorado. Our doctors said there was only limited testing on the drug and that it was focused on specific syndromes associated with epilepsy. There was little research on its long-term effects or its interactions with the antiepileptic medications. Another concern we shared with the doctors was the inconsistent quality coming out of many CBD providers. At the time, we made the decision to not try CBD because it wasn’t worth the risk of introducing a drug with so many unknowns. We had seen what a bad reaction to a medicine looks like for our son and we weren’t willing to risk the progress that we had made.

My son was still having seizures every day so we started to make plans for a VNS surgery. I struggled for weeks with the decision and, even after it was made, I agonized over the thought of surgery for my son. Then, in April of 2016, medical marijuana was legalized in Pennsylvania. We again brought up CBD as something to try before we pursued the surgery and we were referred to doctors in Colorado. The waiting list to get an appointment was so long. Even after a trip to Colorado, we were not able to get an appointment. We spoke to one of the doctors from our neurology department that was familiar with CBD and decided to give it a try.

When the bottle of oil arrived, I tried to temper my expectations. We’ve tried and been disappointed by too many medications already and, regardless of the press clippings, I knew that, for every sensational success story, there were countless stories with less than miraculous results. It may not work at all, or my son may have a negative reaction, as he has had from many other treatments.

The dosing to introduce CBD is slow and we were told it could take months before we saw the full effects. As the parent of a child with epilepsy, I’m no stranger to hearing about patience. That practice doesn’t make it any easier, especially watching my son continue to have seizures. But we started the treatment with a hopeful, open mind and as much patience as we could muster.

After a few weeks, we were up to a functional dose but we didn’t notice any difference in my son’s seizure burden. We increased the dosage again and continued to wait. By the third month, we did see a slight decrease in seizures but nothing like the stories in the news and nothing we could directly attribute to the CBD. With the advice of our doctors, we decided to stay at the dose we were on and adjusted one of my son’s other medications. The result was our first few small stretches of seizure-free days.

I was grateful for those days but I was also disappointed. I had hoped that the CBD would be the miracle drug we were looking for. I hoped it would stop his seizures and that we could get off the other medicine and the ketogenic diet. So far, we haven’t been able to reduce any other medications. Ultimately, we’re not quite sure how much CBD is actually helping my son or if it is helping him at all. This is how it goes sometimes with any drug that tries to control something as complex as the brain. You try it, see if anything changes or gets worse, and then decide what to try next.

For us, I think our experiment with CBD will be coming to an end. We’re going to adjust his regimen and, once those changes take hold, we will start weaning off CBD. If anything indicates that it was working, we will reevaluate. I expect, though, that it will be another medicine to add to the list of ones that didn’t work for us.

My Little Miracle

When my son was first diagnosed with epilepsy, I didn’t think we needed a miracle. At first, we simply hoped that the seizure he had would be his only one, but it wasn’t. Then we hoped that the medicine they put him on would prevent more seizures, but it didn’t. Still, I believed in the science and the medicine and I thought the doctors would figure out what was causing his seizures and they would consult the great book of diagnoses and prescribe a way to make the seizures stop. But they couldn’t.

The first time I sat next to my son’s bed in the hospital while he was in status epilepticus, I started to lose hope. Or maybe I needed more than hope. I watched the EEG on the screen above his bed spike and flash a constant red alert. The seizure count continued to climb. I thought about racing against the power meter on the side of my grandmother’s house. My cousin and I used to race to see if we could make it around the house before the reading on the meter ticked up to the next number. I was fast in those days, but as I looked up at the counter on the screen, it was moving too fast even for me.

The doctors did the best they could to slow the frequency of the lightning strikes in my son’s brain. A barrage of medicine did more harm than good, leaving him toxic and unable to move. There were a lot of sleepless nights, sitting up on the purple, uncomfortable foam bed as I watched a team of doctors circle around my son’s bed. The wires, many times reattached, that went from my son’s small head to the Great Machine carried signals of coordinated chaos that mirrored the activity by the doctors scrambling to find an answer.

As our time in the hospital continued to accumulate, so did the seizure count on the screen. The technicians reset the system a few times. They said to make sure they were getting good readings, but I wondered if it was to hide how high the seizure count was going. As bad as it is to see the number increasing, it’s probably worse to see the equivalent of an odometer rolling back to zero from too much mileage.

By the second month in the hospital, I started to lose hope. The science and the medicine weren’t finding the answer and my son was still seizing and my sweet boy turned into an unrecognizable, angry creature trapped inside an unstable shell. The child we brought into the hospital was not the one we were taking home. With my hope faltering and no end to my son’s agony in sight, I turned to finding a miracle.

Out of difficulties grow miracles. ~Jean de la Bruyere

I always thought of a miracle as one big thing. I thought a miracle meant that we would wake up one day and my son would be healed. When we sat in the class about the ketogenic diet and heard of miracle stories of children that were seizure free on the diet and were able to wean off their medication, I wanted that miracle. When we were finally able to try CBD, after seeing the stories in the news of the miracles that it had done with children that had hundreds of seizures a day, I wanted that miracle for my son, too. But none of these miracles visited us in the way that I hoped. Or maybe, not in the way that I expected.

Sometimes a miracle is not one big thing but, instead, a lot of little things. While the pills or the diet or the CBD alone did not provide relief for my son, a combination of them slowed and occasionally stopped the rampant storm inside his brain. Dedicated and persistent teams of doctors didn’t give up finding a working dose of medicine and the therapists worked impossibly hard to restore his mind and body. My son is alive, in school and learning, dancing, laughing, and playing. He’s back with us in ways that I began to think were impossible. I was so focused on the lack of one small, discrete defining miracle that I almost missed the larger one that was slowly revealing itself.

It’s easy to give up on miracles when we don’t wake up to find a healed child, a rich bank account, or a clear purpose for our own life. We think we don’t deserve a miracle because of something we did in our past that cannot be forgiven. Or we pray harder or channel our anger at God and the universe when we continue to see someone we love struggle or suffer and they do not intervene. But the secret isn’t praying harder for the miracle that we think we want. The secret is being open to the miracles that happen around us every day.

Miracles are a retelling in small letters of the very same story which is written across the whole world in letters too large for some of us to see. ~C.S. Lewis

Epilepsy Awareness In The School – The 504 Plan

This week, my wife and I are meeting with my son’s school to update his 504 plan. A 504 plan is intended to ensure that a child with a disability has access to learning and receives accommodations to help them succeed academically. In my son’s case, his plan outlines breaks, seating placement, a shortened school day, and special assistance for attention and behavioral issues. The plan is put together collectively by the parents, nurse, teacher, and school district with input from my son’s medical team and support services and it is meant to be a “living document” that will change as my son’s condition or capabilities change.

This is our first year with a 504 plan. Even though we’re only a few months into the school year, we are pulling the team together to make adjustments. Some changes are good, such as lengthening his day since his endurance has improved. We also have a better sense of how he handles the day, so instead of basing his breaks strictly on a time, we can place them after harder tasks so that he can spend more time in the classroom with his peers. But we also need to address some issues that many parents of children with epilepsy face when trying to get the right services for their child.

Looks Can Be Deceiving

Most of the time, if you look at my son, he looks like a normal, healthy kid. I am extremely grateful for that, but it makes requesting services for him difficult because he doesn’t look “look sick”. Epilepsy is included in the class of conditions called “invisible disabilities”. While a seizure itself might be external, many of the effects surrounding epilepsy are internal. Fatigue, depression, and problems with attention and cognition are just some of the issues that my son deals with every day. On the outside, he might look like a normal 7-year-old boy and it’s easy to want to treat him that way. Too many times my son doesn’t get a break that he needs because he “looks fine” but, by the end of the day, he’s so physically exhausted that, not only is he not actually learning anything, he has more seizures that night and the next morning that cause him to start the next day already exhausted. It’s only after

Epilepsy is included in the class of conditions called “invisible disabilities”. While a seizure itself might be external, many of the effects surrounding epilepsy are internal. Fatigue, depression, and problems with attention and cognition are just some of the issues that my son deals with every day. On the outside, he might look like a normal 7-year-old boy and it’s easy to want to treat him that way. Too many times my son doesn’t get a break that he needs because he “looks fine” but, by the end of the day, he’s so physically exhausted that, not only is he not actually learning anything, he has more seizures that night and the next morning that cause him to start the next day already exhausted. It’s only after a few days following seizure-filled nights that my son physically fits the “sick kid” profile.

Not All Epilepsy Is The Same

Epilepsy covers a broad range of seizure disorders. A teacher mentioned that she had a student with epilepsy that would have a seizure, sleep at her desk, then wake up and be fine. When she described that experience, she did so in a “don’t worry, I clearly know epilepsy so I’ve got this” tone that raised the “you don’t got this” alarm bells in my head.

Epilepsy is more than just seizures and there are an infinite number of variables surrounding the seizures that make each case unique. My son rarely has seizures during the day, but depending on how tired he is, he may have more at night and in the early morning hours, which affects how rested he is going into the next day which perpetuates the problem. The state of his brain at any given moment dictates his behavior and his ability to retain and recall information. His head is constantly swimming in medication and the side effects of those medicines are exacerbated depending on his cognitive load, seizure burden, and his physical condition. So not only are not all cases of epilepsy the same, but people with epilepsy can show a wide range of symptoms and effects on any given day.

Not Everything That Looks Like “Normal Behavior” Is

“All kids his age…” Anytime someone starts a sentence with that phrase, I know that I’m going to have to break out the soapbox. First, “all kids” don’t do the same thing. But most importantly, the behavior that looks like the “normal” attention problems of a first grader are actual misfirings of the neurons in my son’s brain that are preventing him from recalling any information. The glassy eyes and the “no one is home” look could be the result of a seizure or the way that his medicine is affecting him today so his extra-slurred speech and his frustration trying to piece together a complete thought are not normal development problems, either, especially when they vary throughout the day.

Even with the best intentions, treating something as “normal” has both the risk of setting my son up to feel like a failure because he can’t control what is happening to him and prevents the identification of what is actually causing the behavior and the ability to address that cause.

Things You Can Do

We are very new to this world, but we are extremely grateful to have a wonderful support network around us and to have had many people go before us and share their lessons. To continue on in that spirit, here are a few of the lessons that I have learned that may help you navigate this long, difficult road.

Have The Conversation

Balancing my desire to have the world treat him as a “normal” kid and making him feel like a normal kid with the reality that he has special needs is a challenge I face every day. Not everyone else does or has a reference for what that means. Having a dialog with the teachers and the school district and talking about their perceptions is an important piece of having everyone on the same page. “It’s great that you have seen a seizure, but here is how my son is different from that other student.” As the teachers have more interactions with my son, and as we continue to talk about what they have seen and what things we are seeing at home, we’ll all have a better picture and be able to adjust the plan to better suit my son’s needs as they continue to change.

Have The Information

My wife and I have talked leading into this meeting about what is working with his current plan and what isn’t working. We’ve talked about what things we need to bring up, how to bring them up, and what documentation we need to provide to support our position, and we will have that documentation available. Doctor’s reports, neuropsychological tests, reports from wraparound services. Perceptions are hard to change but the best way to support the request for services that your child needs is with data.

Have A Support Network

One of the best resources that we have available to us is our support network. Other parents that work tirelessly to navigate the system, social services through the hospital and the state, and epilepsy groups such as the Epilepsy Foundation of Eastern Pennsylvania that have programs to bring epilepsy education into the classroom. This network provides the guidance and information we need to ensure that we are asking the right questions and asking for the right services for our son. In some cases, we’ve brought people from this network into these meetings. In the end, we have built a team that we can leverage to do what is best for my son.

Have The Courage To Fight

If you’re averse to conflict like I am, get over it. It may seem like the system is set up to oppose these special services. They cost money, they disrupt the normal flow and structure of the school day, and especially with an “invisible disease”, the system may try to convince you that your child doesn’t need these services. As we’ve been told many times, there is no one that will be a bigger advocate for our son than us. Be that voice. Partner when you can. Fight when you must.

Additional Information

There is a lot of good information about what to ask for in a 504 plan, and I wanted to share these links that I found useful. If you have other suggestions or resources to share to help other parents going through this process, please share them in the comments.

A parent’s guide to Section 504 in public schools

Sample 504 plan for epilepsy: http://www.epilepsynorcal.org/wp-content/uploads/2015/07/Sample_504.pdf

NEXT UP: Be sure to check out the next post tomorrow from Eisai/Sean at livingwellwithepilepsy.com for more on epilepsy awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com. And don’t miss your chance to connect with bloggers on the #LivingWellChat on November 30 at 7PM ET.