Tyler was born on September 14, 2000. He weighed 6 lbs 1 oz. and was a healthy baby boy. The first 5 months of Tyler’s life were so special. My heart soared watching him grow and learn. My little boy: saying Mama, Dada, playing peek-a-boo with his mommy, and exploring his brand new world. Then Tyler’s world changed forever: our son was diagnosed with Lennox Gastaut Syndrome (LGS) in 2007. LGS is a rare and often debilitating form of childhood-onset epilepsy. The syndrome is characterized by frequent seizures and multiple seizure types, a resistance to medications and/or therapies, cognitive dysfunction, regression, and an abnormal EEG with generalized slow spike-and-wave discharges. LGS constitutes between 1 and 4 percent of pediatric epilepsies and typically appears between the second and sixth year of life. Some of the known causes of Lennox Gastaut Syndrome include brain injury associated with pregnancy or birth (including asphyxia, low birth weight, and prematurity), severe brain infections (including encephalitis, meningitis and rubella), developmental malformations of the brain, or a history of infantile spasms. In 30-35 percent of cases, no cause can be found.
At around 6 to 6 1/2 months, I quickly noticed something in Tyler was changing. While changing his diaper one evening I noticed what looked to be a seizure, words can’t describe how scared I really was. I brought him to the doctor and he ordered an MRI & EEG. The MRI came back normal and a neurologist had to read the EEG. The radiologist told us that the EEG showed spikes in Tyler’s brain waves, which indicated seizures. This process took almost 6 months, and we didn’t know the results of his tests definitively until after Tyler reached his 1st birthday. The doctors then started Tyler on clozapine, saying that if he went without a seizure for a full year we could take him off the medications. The clozapine made him very tired and made it very difficult for him to drink liquids, but he was not having seizures and could eat baby food.
After getting used to the medication, Tyler seemed happy but he was not reaching normal mile stones associated with a normal childhood. He had a very low muscle tone either from prior seizures or because of his medication. Either way, we had to start physical therapy to try to help him. The physical therapist worked nicely with Tyler. She showed us what we needed to do at home to help him and he improved somewhat, but nowhere near where he should have been in age. I was fine with that — understanding everything that was happening to him. Months later, Tyler started having trouble sucking his bottle, but was still able to eat baby food. I made an appointment with a Gastroenterologist to try and figure out what was happening and why Tyler’s ability to drink was rapidly declining. Unfortunately, before we could make it to the doctor, Tyler ended up in the ER suffering from dehydration. I couldn’t believe what was happening before my eyes. At one point I was reduced to giving him water through a medicine dropper – he simply could not drink from anything else. When I later spoke to the GI doctor, she asked so many questions, but I couldn’t concentrate on what she was asking. I was so upset to see Tyler this way. I remember begging the GI doctor to please don’t let my baby die, and asking over and over what I can could do to make him better. She explained that she needed to put a feeding tube into Tyler immediately to ensure that he received the proper amount of nutrition and hydration. I begged her to please do whatever she had to do: just don’t let my baby die. She admitted him to the hospital immediately, and performed the surgery the next day. When Tyler came out of surgery I couldn’t believe my eyes. I was frozen with fear. My little son was laying there with a feeding tube in his nose and another implanted in his stomach.
Due to the inflammation in Tyler’s esophagus the feeding tube that was placed in his stomach couldn’t be used yet. The one in his nose was temporary. Here I was standing in this hospital room alone and staring at my son in fear. A few moments later my cousin walked in the door. She looked at my son then walked over to me. I broke down in tears, screaming, “I can’t do this, what am I going to do?” She said with a firm voice, “This is your son and you are his mother. You can do this.” As she was calming me down the doctor came in to the room. She brought me into a private room and took time to clearly explain what was going on with Tyler. She told me I was special and that God gave me Tyler for a reason. She hugged me and told me she was proud I made the right choice by getting the feeding tube for my son.
When Tyler was sent home from the hospital, we had to have a nurse on call twenty four hours a day just in case he pulled out the feeding tube. It wasn’t long before I was calling her. Tyler wasn’t trilled having this in his nose. Then, the night before he had a checkup with the GI doctor, Tyler pulled the tube out of his stomach. I had just given him a bath and my mom was holding him when he pulled the tube right out. I panicked and called the doctor. She was telling me that a box I was supposed to bring to the appointment was his new feeding tube. She told me “I need you to place it in his stomach.” I wasn’t sure that was something I could do. How was I supposed to stick a tube into my son’s stomach? What if I did it wrong? The doctor had faith in me and calmly told me that I didn’t have a choice: I had to put the tube into Tyler or the hole to his stomach would close up. With the doctor’s instructions over the phone, I replaced the feeding tube. The next day we went to her office and she said, “Nancy you did it!! What a great job!” I was impressed with myself. To think weeks ago I was saying, “I can’t do this.” Now I knew I could – and I would.
Suddenly things started becoming easier. I was used to the feeding tube and Tyler was actually improving. Unfortunately, this grace period lasted only for a few months. The day before it would mark a year that he was on his medication, Tyler had another seizure and then continued to have seizures until the doctors increased his medications. It turned out that because Tyler’s weight had increased, the medications needed to be adjusted. During the next year Tyler didn’t make any mile stones but at least he was happy all the time. The increased in medications also worked for a little while, but then he started having seizures again. This period of seizures continued for long enough that the neurologist felt it was a good idea to put him on a second medication, called Lamictal. The new medication made Tyler tired at first, but it turned out to be a good idea. Tyler was now 2 ½ years old and was on two major medications. I figured that I should seek help both for Tyler’s therapy and his education. I had a cousin who had cerebral palsy and went to a great school a few towns away. I admit I was scared but I wanted a better future for my son, so I moved and he started Pre-K 3 in September of 2003. This was the change we needed: Tyler was doing well in school and going on a full day schedule. He was still having occasional seizures, so we had to do video EEGs pretty often to check on things. Tyler would roll all over to get what he wanted when playing with his toys, but was still in diapers and unable to sit for long periods of time. So we used a stroller, until we stared to get better equipment for Tyler, with the help of his school.
The neurologist we were seeing at the time told me one day after a regular visit that my child would be a vegetable for the rest of his life. I stepped back and said, “Are you telling me this without a diagnosis?” She replied that Tyler would always be this way. I was so angry and frustrated with that doctor that . . . well, let’s just say I got kicked out of the hospital for the day. I switched to a different neurologist, but had to use one that was in the same practice as the original one due to the fact that Tyler was on state health insurance. The state insurance policy limited us to certain doctors. Anyway, this new doctor seemed very interested in helping us. She tried her best, but if you know anything about Lennox Gastaut Syndrome, you know it’s a multiple seizure type syndrome. Not to mention hard to treat with medications and very rare. Most people – even doctors – simply don’t know very much about this syndrome.
Over the next 1 ½ years, Tyler did well in school and with therapy but it was very up and down, like a roller coaster with many seizures and changes in his medication. The doctors took Tyler off of clozapine, left him on lamictal, and started him on phenobarbital. Tyler was once again tired and up and down. I was also having a very hard time trying to understand what was happening with my son. By the time Tyler was 3 ½, he was being fed solely through the g-tube due to aspiration phenomena. Once he started having more frequent seizures the neurologist referred us to an epileptic specialist named Dr. Sousa. I was completely hopeless at this point and was crying all the time because I just couldn’t hold back how helpless I felt: no matter how much I wanted to help my son it seemed like I just couldn’t do anything for him. Our first visit with Dr. Sousa was a relief. Finally, a normal, down to earth doctor. Dr. Sousa was not cocky like the other doctors I met in the past. He was actually very sympathetic and genuinely concerned with Tyler’s condition. After going over Tyler’s very long history of seizures he asked, “What do you want for Tyler?” I said I would like for my son to be seizure free or controlled and able to walk so he could enjoy his life a little more. Tyler deserved to have a better quality of life, even if it wasn’t going to be exactly like the other children his age. Dr. Sousa said, “Ok let’s see what we can do.”
He ordered another MRI & EEG.
Finally, Tyler was diagnosed with Lennox Gastaut Syndrome. I had never heard of it, before. Dr. Sousa told me that LGS was a seizure disorder and we should consider a VNS. A VNS is an implant that would be put into Tyler’s chest to help control his seizures. We all went home with yet another medication adjustment. Tyler now was 4 ½ years old and I was pulling my back out due to his increased weight. I had my own doctors telling me if Tyler stayed the way he was I was going to end up badly hurting myself. Being 5ft 2inches and 110lbs this wasn’t something I wanted to hear, but knew it was true. With much thought of his safety, I made the decision to place my son into a nursing home. That was the hardest decision I ever made in my life. Putting Tyler into a nursing home was the last thing I ever wanted to do. It wasn’t right. I was supposed to take care of my son. Not some stranger who didn’t really love him. I cried all the time. Tyler still went to school and I went to see him and spent time with him every day. I remember that I wouldn’t allow myself to leave his side until he fell asleep every night. I cried the whole way home. Then, when I got home I would bury myself into my husband’s shoulder until I cried myself to sleep. This went on for months: at any giving moment I would cry and once it started, I couldn’t stop.
My husband wasn’t Tyler’s biological father – but you would never know it by the way he treats him and helps me to take care of him. I met my husband when Tyler was 3 ½ years old. He always treated him like he was his own. That meant and still means the world to me. We would take Tyler home from the nursing home on weekends. I became very much like a robot. I couldn’t stand what was happening to my family. I was sad and angry and frustrated all at the same time. My husband understood my mood swings. I always felt like I was taking this out on him, but he would always say, “I know you’re not upset with me. You just wish things could be normal.” I wanted so badly for things to be normal. This just wasn’t my reality. This wasn’t the way my life and my son’s life were supposed to be. I was so angry at everyone and everything.
On March 14, 2007, one year after being diagnosed with Lennox Gastaut Syndrome, we had a VNS placed in Tyler’s chest. Vagus nerve stimulation (VNS) is designed to prevent seizures by sending regular, mild pulses of electrical energy to the brain via the vagus nerve. These pulses are supplied by a device that is similar to a pacemaker. Tyler came out of surgery giving everyone “high fives.” He spent two days in the hospital following the surgery – thankfully with no issues. This was like a miracle. Tyler was having fewer seizures and when he did have one, we would use the magnet to start the VNS. It was like magic. The VNS would stop the seizure instantly. We were so happy that this was working! I finally thought we were actually going to make it. Tyler was doing wonderfully and becoming very alert and stronger every day. He was even using a walker with assistance at school. This actually lasted a few years. Tyler would have a seizure once in a while, but they weren’t anything the VNS couldn’t handle. I was so happy to see Tyler progressing. He was sitting up on his own for longer and longer periods of time. Tyler was saying “Mama” all the time. I kept telling my husband that Tyler was going to walk and that he was going to be able to come home. This was my dream. I dreamed that Tyler would learn to walk on his own so he could really enjoy life and able to come home.
I married my husband, Matt on November 14, 2009. Tyler, of course, was the ring bearer and both my men dressed in all white suits to match my wedding gown. Tyler was unbelievably cute and happy. At the church during an Irish Prayer Tyler vivaciously expressed himself out loud. It made me feel complete that Tyler was so happy that he had to express himself in front of a church full of people. This was a very special day not only because it was our wedding, but because it was also the beginning of our life together as a family. Matt and Tyler’s relationship was strong from the beginning so I was over the moon when Tyler let us know how happy he was that we were finally, officially, a family.
Over the next nine months Tyler enjoyed additional improvements. He was in his walker at school two times a week and loving it. His teacher asked me to come to school to see how well he was doing in his walker. I couldn’t wait to see, all I could think of was WOW look at my little boy becoming himself. He was so excited to show me he was walking. I kept saying, “Come give mommy a hug.” He would finally get to me and I would take a few steps backward and say you almost got me, before grabbing him and enveloping him into the biggest, proudest hug I could ever give. I was cheering him on and he was taking steps. It was so nice to see my son really making progress. Dr. Sousa was happy as well. The doctor was so pleased with Tyler’s progress that he even suggested that we start to wean Tyler off of his medications. The doctor explained that the VNS was designed to replace medications – or at least some of them. At this point Tyler was on phenobarbital, Lamictal and Keppra, so I told the doctor to go ahead and start the process of taking my son off of these serious medications. We were actually able to wean him completely off of Keppra without any issues. We were ecstatic and Tyler was doing awesome. He was much more alert, aware of his body, and his surroundings. Then we started to wean him off of the phenobarbital.
At first it was amazing to see what a smart and strong boy Tyler could be when he wasn’t on so many debilitating medications. I could see it in his face how happy he was to be able to control himself better than ever before. His school kept telling me how wonderful it was to see him really coming into his own. Unfortunately, on August 14, 2010, I received a phone call from the nursing home. Tyler was having a lot of seizures and the VNS wasn’t working. They had to give Tyler Diastat to try to stabilize him, but it wasn’t having a very good effect. I couldn’t believe what I was hearing! We rushed over to the nursing home to find a very heavily sedated little boy. He was in good spirits and just stared at me and fell asleep. I was on the phone with Dr. Sousa freaking out because I had never seen Tyler this bad. Dr. Sousa told me to bring Tyler to his office the next day. When I picked Tyler up in the morning he immediately started having seizures and didn’t stop for two straight weeks. The first week he was home with us. We tried to get him stabilized with Dr. Sousa’s help. We increased the amount of his phenobarbital, and gave Tyler Diastat, hoping it would stop the seizures. It didn’t. I listened to every word the doctor said. Matt and I started logging the time, length, and body parts involved in Tyler’s seizures. Tyler was having seizures every thirteen minutes.
After many phone conversations with Dr. Sousa and 3 visits to our house to check on him, Dr. Sousa finally told us that Tyler needed to go to the hospital. We all were on the fence about bringing Tyler into the hospital — at no point did I want my son intubated. Tyler had been intubated once before and it didn’t turn out good. He regressed so much it was like watching him turn back into a helpless baby. But we knew he had to go, so Dr. Sousa made a few phone calls and we were off to the hospital. Once there the hospital staff hooked Tyler up to the EEG machine and were able to get him stable within a few days. By the end of this period, we realized that Tyler had managed to have one hundred seizures a day for two weeks. I was so beside myself; I didn’t know what to do. I can still remember thinking on the way to the hospital that I was never letting him out of my sight, ever again. After watching everything that was happening to my son, I couldn’t bear to leave his side. By that time, Tyler had spent four years in nursing care. He was now almost ten years old and enough was enough. The hospital finally stabilized him and I made arrangements to bring him home for good.
Dr. Sousa had told me that we detected focal seizures in the left rear part of his brain. Tyler could be a candidate for a resection surgery. Resective surgery is a procedure that removes an area of the brain that causes the seizures. I thought that this was great news. Finally we might be able to do something to help my son. Dr. Sousa told me let’s give him a break for a while and see how he does, then we can go onto the next step toward surgery. At that point, Tyler was paralyzed on the entire right side of his body. The doctor told us that the paralysis could be temporary or it could be a permanent thing. Only time would tell. Plus Tyler was on more medications, including new addition called Triliptal, which made him appear drunk and out of it all the time.
This was crazy, but it didn’t matter. I knew deep down inside that I was going to get him better. Plus, all I could think about was that I was finally bringing my baby home for good. His birthday was coming up and I wanted to make it extra special for all of us. No more nursing home and heartache. I felt alive and ready to take on anything, including resective surgery if that would finally help my son. My brother came over the day before we brought Tyler home to build a ramp up to our apartment door. With the help of my brother and my husband’s friends the ramp was up and done in under two hours. Everything was falling into place, and I was feeling very blessed. God was giving me my life, and my son, back. Tyler’s 10th birthday was on the way and I was so happy to invite our family and friends over for cake. He was a little sleepy during his party, but managed to stay awake the entire time. I had so many emotions going on inside me. I was happy that he was home, but nervous at the same time because I didn’t know what to expect. I was doing everything in my power to get the best care for Tyler. Dr. Sousa even wrote a script for a full sized, netted and enclosed bed for Tyler to sleep in so that he would be safe when lying down. Tyler had no problem getting into a sitting position from lying down. He would sit up in a normal bed, get on his knees and then fall over. He’d do that all day long if you let him, and was not aware that if he falls off the bed he could get hurt. Trying to get the enclosed netted bed on the other hand was a complete nightmare.
Medicaid gave me a huge problem about the bed. They kept asking me why I wanted to put my son in a cage. One guy actually told me that some parents try to swoon me into getting their kids a bed. I just replied, “Listen, sir, I’m married so I have no time to swoon anyone, all I’m trying to do is keep my son safe.” This ordeal took six months before we finally had a bed that was safe for Tyler. Thank God, because by now Tyler was starting to sit up and roll around again. In the meantime, Tyler’s paralysis went away. In fact he was only paralyzed on his right side for 7 to 8 weeks. The therapy he receives in school is great and helps him out a lot. Tyler started having some mild seizures in the morning once he was used to his new medication. The fact that he hardly ever had a seizure in school was also a huge plus. Once in a blue moon, Tyler would have a small seizure in the evening. By now I knew this syndrome would always be difficult, I was just dreaming about him getting to the next step safely.
My mom, mother-in-law and a few other family members helped me with babysitting but they all stated they were nervous when he would have a seizure. I spoke with a case manager and she came to my house and told me about a special program thru Medicaid for children like Tyler. She was confused as to why I had been without professional care for Tyler for so long. In October 2011 we started having nurses come to our home every day for two hours in the morning to help get him ready and ride the bus to school. The nurses would also come back in the afternoon to ride the bus back home with Tyler and stay with him until 8pm every night. I was embracing all the help and once I got used to having people constantly in my home I actually allowed myself to start to take a break from all the worrying. We get to see our case manager once a month and I thank her every time I see her. Her help is always so genuine and she’s always asking how we’re all doing. What a God send.
We waited a year before implementing any changes to Tyler’s medications or treatment routine. After a year, Dr. Sousa and I felt that Tyler was ready to take the next step that would hopefully result in successful resective surgery and the chance of a somewhat normal life for my son. This is where it got crazy. Dr. Sousa referred Tyler to New York University Hospital for an intracranial EEG. But, of course, Tyler’s insurance company denied coverage for the procedure at that hospital. They did, however, refer us to Hackensack Hospital in New Jersey. I went to see the neurosurgeon and he said he would do whatever he could to help me, but I had to meet with his team. So I made an appointment with his team and told them everything I could about Tyler and his condition. After that meeting, the new doctor at Hackensack Hospital said he was happy to help Tyler. The next step was to have Tyler admitted to the hospital and have him hooked up to a regular video EEG. This process involved admitting my child into a seizure monitor unit, where they weaned him off of phenobarbital to capture seizures as Tyler experienced them to try to isolate the part of the brain where the seizures were originating. Unfortunately, taking Tyler off of the medications had a bad effect on him: he started to have grand mal seizures. After spending a week in the monitoring unit we were left with more medications, including Benzal. This didn’t really make a difference for Tyler, but the doctors claimed it could be used to get him off of the phenobarbital. The doctor was saying the only thing they could do for Tyler was to put him on a ketogenic diet or to perform a corpus colostomy. A corpus colostomy involves cutting some or all of a band of nerve fibers connecting the two halves of the brain to disable communication from one side of the brain to another. The thought was that the procedure might reduce generalized and drop attack seizures. This is usually an option when no single focus for the source of the seizures can be identified.
This definitely wasn’t what I was expecting to hear. Dr. Sousa and I spoke about a resective surgery. So here we have two opinions and one mother once again feeling helpless and unable to help her son. The hospital eventually stabilized Tyler and sent him home with us. Tyler seemed to have taken this testing well. I mean even after having all that happened to him, he was back to his normal self very quickly. He was still having his normal seizure or two in the morning, but otherwise he was going along just like always. I was actually pretty impressed by how well he was doing and how well he bounced back from being purposefully taken off of his medications for the monitoring. The doctor from Hackensack Hospital said he would be having a meeting about Tyler and would present for the intracranial EEG that we were looking to get at the NYU hospital, but he told us his team didn’t feel it was appropriate. I didn’t believe what I was hearing. Here you have a child who is now on five medications and with a VNS, and still having seizures. To top it off you must always do an intracranial before any type of brain surgery. So why wouldn’t they say yes. We even tried to get an MRI done but with the VNS no one wanted to do it — it’s just too risky they told me. I felt so uncomfortable with what was going on. How unorganized this process was.
We went back to Dr. Sousa. Tyler was doing well and it had been four months since our last hospital stay. Dr. Sousa and I made the choice to try to wean Tyler off of the phenobarbital again. We had already increased the Benzal. This was working out great. The old Tyler was back in action and making progress. Unfortunately, as soon as we got back down to the amount of phenobarbital we were giving Tyler in 2010, things took a major turn for the worse. All hell broke loose. On September 14, 2012, at 7:30 in the morning of Tyler’s 12th birthday, when I went to wake him up with kisses and birthday wishes he was happy as always and laughing. Just as I was taking the moment in, Tyler started a seizure. I used the VNS and he went in and out of a seizure and then stopped. A few minutes later another one started and continued for 3 to 5 minutes. I immediately called Dr. Sousa and by 12pm we were in his office. Tyler had more seizures in his office and on the way home. Once home we gave him Diastat. This made him sleep, but once he woke up he immediately started to have more seizures. At 1am my husband was on the phone with Dr. Sousa and was fumbling with the Diastat box. I woke up, and said, “You’re not comfortable with that are you?” He said, “No not at all.” I gave the Diastat to Tyler and it helped put him to sleep. By the next afternoon, Tyler woke up and within a few hours started the seizures all over again. We went to the ER and were admitted to the EMU department.
I met a different doctor from this Hackensack group: what a nice man. He listened to everything I told him about how we got here, again. He mentioned that we were here in April, and that there was an idea of seizures in the left rear put of the brain. I felt even more confused than the first time I was told Tyler had a seizure problem. He told me the same as everyone else I’ve met, besides Dr. Sousa. “We’ll get him stable and you’ll be going home soon.” I explained to him that no mother should have to pray to God to take her son because she doesn’t want him to suffer any longer. He said he would present Tyler’s case again for an intracranial EEG and we left the hospital on September 19th with his phenobarbital increased to 40 ml at bedtime. I still have no answers as to what direction we’re going in or where to turn to help my son.
Feeling hopeless all the time is such a horrible feeling. Knowing there is a test that could tell the doctors more accurate information in a hospital that is more than equipped to perform the procedure, but either won’t, can’t or the insurance company refuses to cover it. This just doesn’t seem fair: if it’s not the insurance denying you it’s another doctor saying it is a hopeless syndrome. I wish every doctor believed in Tyler the way Dr. Sousa does. He believes in finding the root of the problem and correcting it. That’s what a doctor is supposed to do — not continue to medicate your son and send you away. I believe all these kids that have Lennox Gastaut Syndrome should be able to get the tests they need in order to improve their quality of life and try to relieve them from seizures.
I will continue my fight for my son and for other families in our situation. I pledge to make people aware and understand this syndrome, for it is very rare and unknown to many people. With our voices we can make a change on how most doctors look at this syndrome. I will continue to fight our way to a better life without medication for as long as I have to for Tyler. I vow not to give up hope and turn all my insecurities into positive energy for the fight on seizures. This is Tyler’s story.
Tyler update: 2013
We gave Tyler a break from doctor’s appointments and hospital stays. We slowly weaned him off of Benzal since it was ineffective. We utilized Tyler’s VNS as his primary source of seizure management. Things were going okay for Tyler, but he was still having long, frequent seizures. We had good days and we had bad days. On the bad days Tyler would have seizures up to 10 minutes long. As Tyler’s seizures progressed, I found myself not knowing what to do next, and I decided it was time for another opinion on brain surgery. We saw a new doctor from Morristown Medical Center along with a consult with a brain surgeon. The brain surgeon referred us to the new neurologist in the hospital who would complete some new testing. Tyler was placed in Morristown Medical Center for video EEG testing, which did not go well. The first night Tyler had ripped all of the EEG leads off of his head before the morning. The leads were reattached and this time, Tyler had to wear a helmet. Six hours into the EEG, a three day old, post-op screaming infant was placed in our room. The poor baby screamed for hours straight. While the baby was screaming, on the third night of our stay, Tyler jumped out of bed at 4am toward me, falling onto the floor. It was a harrowing moment, but we were able to pick Tyler up, uninjured, and place him back in the bed. After the EEG testing, we had a follow up appointment with this new neurologist. At this visit, we were faced with the challenge of the original doctor’s partner, a neurologist we had never met before who handles all the outpatient visits. We talked about increasing Lamictal and getting bloodwork to start Tyler on a ketogenic diet. We went home and slowly began increasing the Lamictal. Tyler got the bloodwork done and back to the neuro we went. The neurologist had no recollection of Tyler’s first visit to see her or of our conversations about medication changes and the ketogenic diet. She quickly sat me down and started speaking about brain surgery, wanting to complete a corpus callosum (a surgery in which they disconnect the brain’s cerebral hemispheres). This is what the last brain surgeon suggested and is absolutely not something I was comfortable putting my son through. I became very upset because Dr. Sousa was nice enough to refer me to this new neurologist to get a second opinion since he didn’t have privileges at Morristown Medical Center. This doctor actually told me that she was certain I must have too much on my mind because she was certain that she had never met Tyler before. After I reminded her that she had actually already changed the Lamictal orders, she proceeded to open the chart and found the copy of the prescription increasing Tyler’s medications and started to blame her front desk staff that there was oversight. I proceeded to tell her that this was completely unprofessional, and she proceeded to refer me back to Dr. Sousa. At this point, I let her know that we were not interested in surgery and that I would schedule Tyler’s next appointment with Dr. Sousa.
At my next visit with Dr. Sousa I explained what had happened with the previous doctor. He apologized profusely for her poor bedside manner and unprofessional behavior. This was when I decided to ask Dr. Sousa his opinion on medical marijuana. He said we could talk more about this on our next visit. I went home and started researching. I had been made aware of some success stories of seizure patients being treated with medical marijuana in the past, and wanted to give Tyler this opportunity to benefit from it, but first I had to be sure. I continued to research medical marijuana and spoke with Dr. Sousa several times throughout 2013. At the end of summer 2013, I watched a documentary called “Weed” with Dr. Sanjay Gupta. I was on the verge of tears while watching. My heart ached for this family, and the similarities in our lives. This child – Charlotte Figi – had Dravet syndrome, another debilitating seizure disorder that is very similar to Lennox Gastaut.
This documentary was the last bit of evidence I needed that this was the best choice for Tyler. I had made up my mind that he needed to have these benefits and nothing would stop my pursuit of helping my son. I obtained a medical marijuana doctor within weeks and proceeded with doctor visits. As some of you reading this may know, insurance does not cover palliative treatments, which medical marijuana falls under. We had to have a total of four visits, which were several hundred dollars each time we went. Thank goodness for Tyler’s gofundme.com page – www.GoFundMe.com/3ritr4 – or there is no way we would have been able to afford these new and promising treatments for Tyler. I also had to obtain a phycologist, a pediatrician who was a medical marijuana supporter (Dr. Sousa) and a fingerprint and background check. This process took roughly six months from our first doctor visit until I was able to obtain medical marijuana for Tyler.
By law, I was able to purchase two ounces of medical marijuana per month in its raw form, which is anywhere from $600-$800. I did not know how to give Tyler the marijuana so I went to a smoke shop with the hope that I could use a vaporizer. The shop owner assured me that this would be possible, and I was so excited for Tyler to begin treatments that day. Once I got home, I realized that Tyler would have to perform a sucking motion in order to get the medical marijuana from the vaporizer; a motion that Tyler is unable to perform. I quickly panicked and I was once again left feeling hopeless. After my moments of hopelessness, it dawned on me that there was a way for us to get Tyler the treatments he needed. I had a CPR mask in the closet and knew that it was my job as Tyler’s mother to make sure I could help him. I used to CPR mask to transfer the smoke to Tyler. After all my research, I knew that this was the most natural and effective way for Tyler to reap the benefits of medical marijuana.
After this first dose, Tyler received a dose every 24 hours. Tyler immediately went an entire 48 hours seizure free for the first time in his life. This was the first medication in thirteen years that had ever been so successful in treating Tyler’s seizures. Words can’t described how this made me feel. Being able to help my son for the 1st time since he was 6 months old. I made many dosing adjustments as I figured out what worked best to limit Tyler’s seizure activity. Within a few months, Tyler was much more aware, alert, and oriented. His physical improvements and the decline in his seizure activity were amazing. His seizure activity used to be 8 minutes per day, frequently throughout the day and was now limited to short 3-10 seconds seizures, and he would often go 24-48 hours without any seizures. It was becoming increasingly difficult to give Tyler treatments through the CPR masks. Because at he was improving, Tyler was actively pushing me away, holding his breath, and other natural reactions of a 13 year old boy whose mother isn’t giving them enough space. I found a group for parents of children who use medical marijuana. Through this group, I discovered what a Magical Butter Machine was, and quickly learned how to become a chemist. I placed half an ounce of medical marijuana and some melted coconut oil into the Magical Butter Machine and let it cook for an hour at 160 degrees, F. After It was cooked, I would filter it and seal it in a mason jar. I now had medical marijuana oil that I could easily treat my son with by putting it through his feeding tube. This seemed to be the perfect solution! I was no longer annoying him by being in his personal space, and he was still able to get the treatments that were reducing his seizure activity by an amount I had never thought possible to happen so quickly. After a few dosing adjustments, Tyler was so much more active and alert and on the road to recovery.
Most people don’t know enough about marijuana based on what the government puts out and labels it as a Schedule 1 drug – in the same category as heroine and methamphetamines. Cannabis (aka Medical Marijuana) is broken into two components: CBD and THC. THC is what gives you a head high, and CBD is what gives you the calming effect. Cannabis comes in many different strands. High CBD strands have been proven to cure epilepsy and 26 other diseases. I made many trips to the medical marijuana dispensary and learned more about each of the different cannabis strands each time I went. Slowly, Tyler’s seizure activity was getting more frequent and his seizures were getting longer. I mentioned to the dispensary that Tyler was not only a seizure patient, but also going through puberty. The dispensary explained that many families in a similar situation to mine were giving their children strains with high CBD, and also a low, but slightly higher THC level. I obtained this new strand, and Tyler’s long, debilitating seizures stopped again! Tyler’s nursing staff and I quickly noticed how much better he was getting. It was such a blessing to see my son being so into his toys and physically doing so much better than he was back in 2010. I thought ok we are going in the right direction.
In the beginning of February 2015, while we were at a visit with Dr. Sousa, Tyler’s Vagal Nerve Stimulator (VNS) read ‘low battery’. Dr. Sousa said we needed surgery ASAP to replace the seven year old battery in Tyler’s VNS. Tyler’s seizures were getting worse again and getting longer within days of receiving this news. It’s been three weeks since the VNS read ‘low battery’, and while Tyler has been waiting to get surgery I have had to increase his medical marijuana dosage to control his seizures since the VNS is not working to its full capacity. I am thankful that it only took me a year to find a strand that really truly works for my son. I have high hopes and faith that replacing his VNS battery will bring him closer to achieving a seizure free life. I will continue with medical marijuana to try to obtain seizure freedom and eventually take my son off of all pharmaceutical medications. I can only pray to god that Tyler comes through his surgery with no complications and we continue on our road to success. To whom ever is reading this please do what you can to make people aware of Lennox Gastaut syndrome a form of epilepsy. Once again this is a 1 in a million debilitating seizure disorder. Thank you to everyone that has supported us along the way, and for those of you who have read & shared Tyler’s story.