“It’s something you never prepare for or expect to become overnight, but every special needs parent knows what it’s like. In the summer of 2016, my son Cayden had his first seizure; he was just over two years old. The first one will stick with me forever. I was watering our tomato garden and Cayden had been sick so he was out in just his diaper eating a sucker while the cool mist from the hose sprayed us, which I figured would be good since he seemed to be running a fever. Out of the corner of my eye I saw Cayden fall to the ground like he lost his balance and his sucker hit the ground. I said, ‘Oh honey, it’s okay, Mama’s got it.’ I reached to grab it and realized he flopped backwards and was convulsing.
I immediately dropped the hose, scooped him up and ran to the front yard, yelling for my neighbors that were outside to dial 911. I held my then two-year-old son in my arms as he convulsed and his eyes rolled to the back of his head for what seemed like hours, but was just a few minutes. I prayed out loud to God, ‘Please don’t take my son. Please protect him. Please God, help him.’ Cayden laid limp in my arms and seemed like he was barely breathing. I realized the ambulance should be there and I passed him to his Godmother so I could run in and put on decent clothes and grab my phone and things.
I jumped in the ambulance and off we went to the local hospital. They observed him, but once he woke up everything seemed to return to normal, so they sent us home the next day and said he needed to follow up with his regular pediatrician. After we got home, I was so scared it would happen again I could barely sleep for weeks. After seeing his regular pediatrician who was confident it was a febrile seizure, which can happen in children when they spike a fever, she made me feel like there was nothing to worry about. We returned to normal life and Cayden went back to preschool with no issues.
Once year later, just before summer, Cayden became sick while visiting friends. He got a fever and had another seizure. The same thing happened – after going to the hospital by ambulance, they observed him, sent him home and said to go to his regular doctor. She still at this point believed they were febrile seizures and did no further testing. We were doing fun things with family and friends, getting ready for the new school year to start. Once Cayden began preschool again with his new teacher, he was excelling at everything, and was such a sweet, well behaved boy. The next seizure was at school, which was the first one that happened with no fever present. This time my mom gut told me something wasn’t right. His pediatrician agreed and referred him to a neurologist. During this time, my marriage was imploding, but we were trying to figure out how to make it work. Cayden was due to go to the neurologist a month later and I was satisfied with that, thinking the seizures were so far apart it was plenty of time.
We went in for a 20 minute EEG in the office so they could do some tests and look at Cayden’s brainwaves to be able to observe if he had any seizure activity. During this time we were with the PA neurologist, not the actual doctor, but he was very kind and seemed to really care. After talking with the PA, he decided Cayden needed an emergency drug to stop a seizure should one happen again. He trained me on how to use it and sent us home with not much more instructions other than to see them if another seizure occurred.
About a week after, Cayden had another seizure and we went to the hospital again, but this time the EMTs asked me why hasn’t the doctor put him on a medication to control it. I started to ask myself the same question. I scheduled a follow-up with the neurologist. Once we got in again, they agreed Cayden needed to be brought in for an overnight EEG. This would give a better picture. We of course agreed and I was excited they were listening and following up with action. One week before the overnight EEG, we were in the ER again because Cayden had another seizure, this time at home.
As we went in for Cayden’s overnight EEG, I was hopeful. The Neurologist who was normally too busy and just sent his PA was the on-duty Epilepsy doctor at the hospital. He began to tell me they would be observing Cayden overnight and hoped to see something that would give clues into what was causing his seizures. The hospital stay was quick and painless since Cayden was very cooperative. They hooked him up to the video monitoring EEG in addition to doing blood and urine tests.
The doctor came in the next morning and explained Cayden had epilepsy, or rather affirmed it to me. I asked, ‘Does he have Epilepsy?’ He replied, ‘Ding, ding, ding, we have a winner!’ I was in shock and couldn’t believe his horrible bedside manner. I couldn’t focus as all these things rushed through my mind, and in big bold letters there it was – Epilepsy! The doctor started discussing anti-epileptic drugs as the first defense, since Cayden had presented with 4 seizures it was time. We went home and began giving Cayden Trileptal. It’s a sodium channel blocker, these can work to stop seizures by stopping the signal to the brain or interrupting the ‘misfire’ that causes them.
Cayden’s dad and I were not on the same page about what was happening to our son. He wanted to trust the doctor’s, but I wanted concrete answers before putting him on to me what were very scary drugs. At the time, I wanted to believe Cayden taking medicine twice a day would be the solution, so we continued with life. As time passed and we went from fall to winter, I saw major changes in my once happy, carefree child. He was withdrawn, started to not like to play with his siblings or classmates like before, and I felt as though he was getting further from me. Many special needs parents know what this is like and it’s hard to describe because it’s a feeling you have. You are helpless, but know it’s happening – almost like when you’re falling.
I called the doctor and told him the changes I was seeing were not positive and I wasn’t happy with this. His attitude was this was just a side effect of the medication and Cayden would adjust. Two weeks before Christmas, Cayden was running around the house chasing his siblings. They were having fun, laughing as I sat on the couch. I saw him fall, and he began having another seizure. His brother and sister sobbed as his dad and I comforted him. This time I called the doctor and explained what happened and their solution was to increase the medication. Reluctantly I agreed and we increased the dose slightly in the hopes it would work. We spent Christmas with my family that year in California. I prayed Cayden’s medicine would keep him safe for our travels and into the new year.
As the weeks passed into the next year, Cayden was not himself; he was extremely withdrawn. January came and we saw 2 breakthrough seizures, but the doctor’s made me feel like this was normal, so increasing the medicine was again their solution. By January 16th, Cayden had had 5 breakthrough seizures and this mom was at her breaking point. How can the medicine be controlling them if he keeps having them and why are they getting worse and more frequent? We went to the ER and I demanded he be admitted. The doctor was the same neurologist whose bedside manner was less than desirable. He agreed the medicine wasn’t working but wanted to try a different one.
We began a loading dose of Keppra, which is usually a first defense against seizures. This one is a different type of drug as it’s a calcium channel blocker; these stabilize the electric currents in the brain rather than stopping the signal altogether. Cayden seemed fine with the switch and didn’t seem to be having side effects, but we were only in the hospital 2 days before the doctor said we could go back home. This was the last thing on my mind. I wanted them to do every test and procedure to figure out what was wrong with my baby, but he told me, ‘Insurances don’t just approve all these tests and things and it could be months before they will.’
I sat in the hospital room completely broken. I wondered how we got here, why was this happening and why can’t this hospital figure out what’s wrong with my child? Another doctor came in and he handed me a paper. At the top read ‘Lennox Gout Syndrome.’ He explained they believed Cayden has this condition and now the child I once knew would be gone and he would regress but ‘Don’t all parents want their babies to stay babies, so now yours will.’ I sobbed and thought why on earth would you sit here and think this was the right thing to say? I had to process this, and I just wanted to be alone with my son. I nodded and said I had no questions so the conversation would end and he would leave. We were discharged and went home to what I was told was our new normal.
The next few days were a complete blur as the emotions, questions, frustration, confusion, and anger all started to build up inside me. Cayden was waking up and starting every day with a seizure. He would then sleep it off, play for a few hours, nap and sometimes wake up to another seizure. I kept asking myself why wasn’t the doctor doing more? Why won’t they keep us in the hospital and how on earth can anyone have to endure this with their child? I went back to the ER and I asked them to please do something, this can’t be his normal and there had to be a solution. The doctor refused my request and would not even come down to the ER area to see my child. I was distraught and didn’t understand why this was happening, but also why this wasn’t being addressed with the urgency I felt it needed. I yelled at the ER doctors to do something, but they said once again the solution was to increase the new meds.
We did this until January 23rd when I called and told them we had been dealing with breakthrough seizures every day and their so called anti-epileptic drugs seemed to make my child worse, so I would not be giving him any dose increases until they would see me in the office at the very least. I had to bring my other two kids to Cayden’s appointment because his dad would not take the day off to be with them. The PA walked in and examined Cayden as I explained to him we had been dealing with multiple seizures a day and I am watching my once thriving child slip away to an Epilepsy abyss. I wanted them to understand even though they thought this was just our new normal, I would not just accept this answer without them explaining why or how.
Not only did he not have any answers, but he wrote another prescription for a medication he believed would break up what they were calling seizure clusters. This was his solution to try and band-aid an issue I felt required an immediate hospitalization and their attention. It was gut-wrenching as a mom to feel helpless and as though the people who are supposed to help had no idea what they were doing. So instead, I went to the other hospital to see if the doctors there had any other suggestions, The truth of the matter is the main hospital was larger and far more experienced with Epilepsy, but I was desperate. A seizure in the morning then the afternoon, recovery was getting hard on Cayden and it was more and more difficult for him to play, eat and be a normal kid.
On January 26th, I got a call from the PA. He had shown Cayden’s case to another neurologist, her name was Dr. Anna Mrelashvili and she believed what was happening was not our new normal but instead was leading to an emergency. I was told the best thing I had heard in weeks – the hospital was expecting us and we were to be admitted immediately as soon as I could get Cayden to the hospital, now as a patient of Dr. Mrelashvili. Cayden and I arrived to the hospital, got up to the room and settled. We met Dr. Anna for the first time and I could not be more relived. From the very moment we started talking about Cayden’s Epilepsy, I knew two things: First, she was actually listening and second, she truly wanted to go to work to find all the answers to the why and how.
Cayden was hooked up to 24-hour EEG and video monitoring, which was something we were already familiar with. Dr. Anna watched seizure after seizure, asked lots of questions and ordered many tests, but we weren’t getting many answers. He was declining again, barely able to stay awake without having more seizures. As a mom, it was heartbreaking to the point where my gut physically hurt. I couldn’t eat, I barely slept and each time he had another seizure I cried. My new friends were nurses and EEG technicians, our favorite Molly and I became close. She was so amazing with Cayden, always tried to put a smile on his face. Those are the things you are thankful for – nurses and staff who truly care.
On February 4th, Cayden had two seizures back-to-back, which put his vitals in such a state they had to move him to the Pediatric ICU. A couple days before this, Cayden was intubated after a seizure to complete a test, but they were able to remove it right away. Now we were in the PICU, the realization that intubating him may be their solution made me very nervous. Dr. Anna decided to take Cayden off the Keppra, switch him to Depakote and add in Onfi. Other doctors thought it was too much medication, but their disagreements only reaffirmed to me this hospital was out of its scope when it came to Cayden. The only one I trusted was Dr. Anna, so it didn’t matter if the other ones didn’t agree; they hadn’t listened to me before anyway.
We started to discuss hospital transfers in case they were not able to stabilize Cayden. However, a couple days later he woke up and was starting to eat and play. It seemed we were in a better place, but it was clear Cayden was now unable to walk and talk like he did before. They immediately started rehabilitation in the hospital. The hospital physical therapist and speech therapist quickly realized Cayden’s regression was so severe he required in-patient rehab, so he was transferred to Atlanta Children’s Hospital. Cayden remained at the hospital for about 2 weeks. His father took time off work to give me a break from the hospital for a few days. This was the first time I felt like I could leave since Cayden was in a better place. During this time, he learned how to use a wheelchair, started to walk on his own, and improved his speech and other gross motor skills. We were discharged and sent home to our new normal, which seemed would be free of seizures but filled with many other challenges.
Getting home was difficult. As we drove, I began to have anxiety about how we would manage this life with a special needs child who takes medicine twice a day and wears a helmet because he falls a lot. My grandmother had been there taking care of the other children and I was so relieved she was there during this time when we would be adjusting. My family all had flown in at different times to help with the other two children so their father could continue to work and I could always be at the hospital with Cayden. Those days home were filled with so much love, laughter, and playing between our kids. I would love to say it lasted, but just after about a week of being home, Cayden had a breakthrough seizure in the car.
We drove to the ER immediately. Cayden napped but as he was waking up, he went back into another seizure. As we were in the hospital waiting for instructions from the on-call Neurologist, he had 7 seizures upon waking up, so it was clear he was in what they call status epilepticus, where seizures continue uninterrupted. The pediatrician recommended he be admitted to the PICU once again, but in the meantime, they would give him a loading dose of medication to try and stop the seizures. Once we got settled into the PICU, they informed me the on-call neurologist was the one who had misdiagnosed Cayden the first couple times.
The PICU team came in and asked me what to do. It’s insane as a parent to have doctors look to you and ask how to treat your child. He said to me, ‘This is out of our scope and your son’s case is the worst case of epilepsy I have ever seen at this hospital.’ My heart sank and I just started to pray Dr. Anna knew what to do, but she wasn’t on call for another 36 hours. Those were hard hours to wait as Cayden could barely be awake, eat or drink and was starting to decline faster than before. Dr. Anna, our saving grace, arrived and got to work immediately. We decided Cayden needed to be transferred to another hospital that specialized in extremely difficult epilepsy cases.
After much thought and consideration with little input from Cayden’s father, it was decided the Mayo Clinic was the best option. Their flight team arrived and we said goodbye to Dr. Anna and Molly, our favorite EEG technician. We arrived in Rochester, MN to be greeted with so many doctors and nurses and I thought surely our prayers were answered. The Mayo Clinic wanted to see if Cayden was a candidate for brain surgery to cure his epilepsy, but it required to strip him of all medication so they could see the seizures in full force. Once this was achieved, they began to see multiple seizures and Cayden and I had to just endure it. For two days, I watched him suffer. I asked for him to be put back on the medication immediately. At this point, they had informed me Cayden had an underlying brain malformation, and he was not a candidate for surgery. They told me they wanted to try a new medication to load and ‘save’ him with, which I was very uncomfortable with. I reluctantly agreed because I wanted to trust them, and I talked to Dr. Anna and Molly about it as well.
Vimpat was not only not the answer, but it threw Cayden into a seizure flurry. Not just 7-8 grand-mal seizures, but 100’s of small ones an hour and he was having new ones – drop seizures, trembling, shaking, pretty much every kind. It’s hard as a parent to not get angry because you think these are the best of the best doctors, so why can’t they figure this out? They talked about intubating him and keeping him in a medically induced coma until they could control the seizures. These nights at the Mayo were the worst we had ever experienced. Cayden was declining and in and out of an abyss of no seizure control.
Then their team decided to try another tactic, the keto diet, which can be good at controlling seizures. However, it’s impractical for a three-year-old since trying to only allow them 2 pieces of bacon, 10 goldfish, and 50cc’s of cream for breakfast doesn’t seem reasonable. Cayden’s dad wanted to stay at Mayo, but at this point I had enough and I wanted him flown out of there immediately. I called the other hospital in Memphis, TN to see if they would take Cayden. Dr. Anna and Molly worked to send all the records over to them so they could prepare. Cayden’s dad said for the time being he was staying with him at the Mayo Clinic and wanted me to fly home with the other two kids and my sister who had been there to help. I agreed and gave the Mayo Clinic a few more days to try and figure this out. There were so many doctors there, I don’t even remember how many we met, but what I do remember is I was not happy with any of them. It seemed they weren’t understanding I had seen Cayden seizure free, so I knew it was possible.
A few days passed with no changes and even more disturbing seizures where Cayden seemed to be aware and would scream while it was happening. The Le Bonheur Children’s hospital flight team came and got Cayden. When we arrived at Le Bonheur, Cayden was treated by Dr. Wheeles and his amazing team. They ran several tests and stopped the medication Cayden was on and started a new one, Felbamate, along with the Onfi he was still on. Three days later Cayden was seizure free and he still is to this day. He made huge improvements everyday in his coordination and speech. It was hard to believe they were able to achieve this so quickly and it seemed now I could finally breathe again. We were discharged after another two-week hospital stay. Home seemed like a foreign place as now it had been four months of hospital stays. We weren’t home much anyway after we left Le Bonheur. Those first couple months we went to aquariums, zoos, amusement parks and the beach. I think we were afraid it wouldn’t last, so we were making the most of our time with Cayden free from seizures.
I wish I could say it was a happy ending all the way around our home and not just with Cayden. Ultimately, my marriage didn’t survive and as I look back on all we went through, I realized it only amplified our already broken relationship. We were never on the same page with Cayden’s care, much like other aspects of our marriage. The other kids, not just Cayden, had been through so much, so my boyfriend and I do everything I can to give them the best stability possible and to make sure we are filling their childhood with happy memories.
Cayden has improved so much over the years in his speech and gross motor skills. He is in no way academically where he should be, but he is the happy, silly boy I remember from before everything happened and as a mother it is the greatest gift. He is witty and smart in other ways; he’s more aware than you suspect. He loves trains, Minecraft and PJ Masks like most seven-year-olds. He loves mom cuddles and tells us he loves us twenty times a day, he asks the same question ten times a day, he gets every toy out but can’t seem to put them back, he eats the same things over and over, and he gives the best hugs. There are so many aspects of having a special needs child. He takes five doses of medication throughout the day to keep him safe and it’s nice to have a partner who shares those responsibilities. Our Journey with Cayden is far from over, but we are in a great place so we are grateful.”
This story was submitted to Love What Matters by Chanel Hardin. You can follow her journey on Instagram. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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