Cayden's Journey
Cayden is diagnosed with medically refractory epilepsy, Autism, ADHD, a genetic mutation and brain malformation of unknown significance and a severe learning disability. He had his first seizure when he was just over two years old.
The first one will stick with me forever.
I was watering our garden and Cayden had been sick. He seemed to be running a fever so he was in just his diaper, eating a sucker while the cool mist from the hose sprayed us. 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 that he flopped backwards and was convulsing.
I immediately dropped the hose, scooped him up, and ran to the front yard yelling for my neighbors to call 911. I held my son in my arms as he convulsed and his eyes rolled to the back of his head for what was the longest few minutes of my life. I prayed out loud to God. “Please, don’t take my son!” “Please, protect him!” “God, please help him!”
Cayden laid limp in my arms and his breathing was shallow. The ambulance took us to the local hospital where they observed him for some time, but once he woke up everything seemed to return to normal. They sent us home the next day and told us to follow up with his regular pediatrician.
Cayden’s doctor was confident it was simply 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.
The next summer, Cayden became sick while we were visiting friends. He spiked a fever and had his second seizure. The same thing happened after going to the hospital by ambulance. They observed him, sent him home, and said to go to follow up again with his regular doctor who still believed they were febrile seizures and did no further testing. We continued with our then normal, doing fun things with family and friends and getting ready for the new school year to start. Cayden began preschool again with his new teacher, and he was excelling at everything. He was such a sweet, well mannered boy.
The third seizure happened while he was at school and was the first one that wasn’t accompanied by a fever. My mom gut told me something wasn’t right. His pediatrician agreed and we scheduled an appointment with a neurologist a month later. Cayden’s seizures had been so spaced out until this point, the wait didn’t seem like a big deal.
During this appointment, we met with the PA who ran a 20 minute EEG where they looked at Cayden’s brainwaves to observe if he had any seizure activity. After talking with the PA, he decided that 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 basically to wait and see.
Less than a week went by before the fourth seizure occurred . I called and scheduled a follow up with the neurologist. Once we got in again, they agreed that Cayden needed to be brought in for an overnight EEG which was more comprehensive than the previous one. I was excited that they were listening and following up with action. One week before the overnight EEG, we were in the ER again after Cayden had yet another seizure at home.
As we went in for Cayden’s overnight EEG, I was hopeful. The actual neurologist that was the on duty epilepsy doctor at the hospital that night, and not just the PA. He told me about the procedure, and hoped to see something that would give clues into what was causing Cayden’s seizures. The hospital stay was quick and painless since Cayden was very cooperative. They performed blood and urine test, then hooked him up to the video monitoring EEG. The next morning, the neurologist came in to review the results. He began talking about genetics, seizures, and all the other medical jargon, but I couldn’t focus. All I could hear was him saying that something was wrong in a roundabout way, and he didn’t know exactly why.
I asked the doctor, “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. This feeling quickly dissipated as my brain then tried to digest the news that my suspicions were correct. EPILEPSY! The doctor started discussing anti-seizure drugs as the first defense. We went home and began administering the medication twice a day.
As winter approached, I saw major changes in my once happy, carefree child. Cayden was withdrawn and started to not like playing with his siblings or classmates as he loved before. I felt as though he was getting further from me. Many special needs parents know what this feeling is like. You are helpless watching it happen and don’t know how to fix it. I called the doctor and expressed my concerns about the behavioral changes I was seeing. His wrote it off as a side effect of the medication, and that Cayden would adjust.
Two weeks before Christmas, Cayden was running around the house chasing his siblings. I sat on the couch and watched as they were laughing and having fun when I saw him fall and began having another seizure. I called the doctor and explained what happened. Their solution was to increase the medication. Reluctantly, I agreed and we increased the dose slightly in the hopes that it would work.
As the weeks passed into the next year, Cayden was not himself. He was extremely withdrawn. We had seen 2 breakthrough seizures, but the doctors made me feel like this was normal. We increased the dosage again. By January 16th , Cayden had had 5 breakthrough seizures. This mom was at her breaking point. How can the medicine be working if Cayden kept having seizures that were getting worse and more frequent? We went to the ER and I demanded he be admitted.
The doctor that night was the same neurologist whose bedside manner was less then 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. Cayden seemed fine with the switch and didn’t seem to be having side effects. We were only in the hospital 2 days before the doctor said we could go back home. That 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 it could be months before they will.” I sat in the hospital room completely broken and wondering how we got here. Why this was happening? Why can’t this hospital figure out what is wrong with my child.
Another doctor came in and he handed me a paper with the heading, “Lennox Gout Syndrome.” He explained that they believed that Cayden has this condition and now the child I once knew would be gone and he would regress. “Don’t all parents want their babies to stay babies? Now yours will.”
I sobbed and thought why on earth would you sit here and think that is the right thing to say? I had to process this and just wanted to be alone with my son so I nodded and said I had no questions so 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 questions, grief, 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 why on earth should 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. 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 wondered why this wasn’t being addressed with the urgency I felt it deserved. I yelled at the ER doctors to do something, but they said that 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. I would not be giving him any dose increases until they saw me in the office at the very least. They obliged and gave me a same day appointment to which I had to bring my other two children along.
The PA walked in and examined Cayden as I explained to him that we had been dealing with multiple seizures a day and I am watching my once thriving child slip away into an epilepsy abyss. I wanted them to understand that even though they thought this was just our new normal, I would not just accept that answer without them explaining why or how. Not only did he not have any answers, but he wrote another prescription for a medication that he believed would break up what they were calling seizure clusters. This was his solution to try and band-aid an issue that I felt required an immediate hospitalization and their attention.
The pictures are a reminder of the intense emotion. I was sobbing but trying to keep composed for my other children The PA’s assistant leaned up against the wall with her head down looking somber. It was gut wrenching as a mom to feel helpless and as though the people that are supposed to help had no idea what they were doing.
I went to the other hospital to see if the doctors there had any other suggestions but the truth of the matter was the main hospital was larger and far more experienced with epilepsy. 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, Dr. Anna Mrelashvili. She believed what was happening was not our new normal, but instead was leading to an emergency. I was told the hospital was expecting us, and we were to be admitted immediately as soon as I could get Cayden to the hospital.
Cayden and I settled into our room where we met Dr. Anna for the first time. 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. Second, she truly cared about answering the why and how. Cayden was hooked up to 24 hour EEG and video monitoring. Dr Anna watched seizure after seizure. She asked a lot of questions and ordered many tests, but we weren’t getting many answers.
Cayden was declining again, barely able to stay awake without having more seizures. As a mom, this was literally gut wrenching to witness. I couldn’t eat. I barely slept. 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 and always tried to put a smile on his face. Those are the things we are still thankful for; nurses and staff that truly care.
In early February, Cayden required intubation in order to run tests after yet another seizure. They were able to remove it right away, but a few days later, back-to-back seizures forced us to be moved to the Pediatric ICU.
Now that we were in the PICU, the realization that intubating him again may be their solution made me very nervous. Dr. Anna decided to take Cayden off the Keppra. She switched him to Depakote and Onfi. They came in to start it as a loading dose. Loading doses are used to start a patient off right away at the proper blood level that is suitable for treatment rather than allowing it to build up over time. Other doctors thought that it was too much medication, but their disagreements only reaffirmed to me that this hospital was out of its scope when it came to Cayden. But I trusted Dr. Anna. We started to discuss hospital transfers in case they were not able to stabilize Cayden.
Fortunately, he woke up a couple days later and was starting to eat and play. It seemed we were in a better place, but it was clear that Cayden was now unable to walk and talk like he did before. We immediately started rehabilitation in the hospital.
The hospital physical therapist and speech therapist determined very quickly that Cayden’s regression was so severe he required in-patient rehab, so he was transferred to Atlanta Children’s Hospital. Cayden remained at that hospital for about 2 weeks. This was the first time I felt like I could leave the hospital and take a break since Cayden was in a better place. During that 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-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 my two older children, and I was so relieved that she was still be 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. It was nice that she could stay longer so I was able to see her as well. Those days home were filled with so much love, laughter, and playing between my three 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 recommends 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 that 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 Doctor’s 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 that Doctor 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. Doctor 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 it was decided that Mayo Clinic was the best option. Their flight team arrived, and we said goodbye to Doctor Anna and Molly our favorite EEG technician. We got in the ambulance to ride to the airport and Cayden had a seizure, so the flight team had to administer iv meds to stop the seizures once again so we could fly with him. We arrived in Rochester MN to be greeted with so many Doctor’s and nurses and I thought surely our prayers were answered. 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 thinking that had been enough I asked for him to be put back on the medication immediately. At this point they had informed me that Cayden had an underlying brain malformation, and he was not a candidate for surgery. They told me that 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 Doctor 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 Doctor’s 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 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, its 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. At this point I had enough, and I wanted him flown out of there immediately I yelled at Dr’s and nurses to do something but they acted like I was being unreasonable. I went to our Air-bnb house to call the other hospital in Memphis TN to see if they would take Cayden. Doctor 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 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 Mayo clinic a few more days to try and figure this out. There were so many Doctor’s there I don’t even remember how many we met but what I do remember is that I was not happy with any of them, and it seemed they weren’t understanding that 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. He was also in starvation ketosis which was actually making his epilepsy worse. At that point Mayo Clinic offered to fly Cayden wherever I wanted him transferred.
The Le Bonheur Children’s hospital flight team came and got Cayden. When he arrived at Le Bonheur Cayden was treated by Doctor Wheeles and his amazing team. They ran several tests and stopped the medication that 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 every-day in his coordination and speech. It was hard to believe that they were able to achieve this so quickly and it seemed now that I could finally breathe again. We were discharged after another two-week hospital stay and spending Easter at Le Bonheur. Home seemed like a foreign place as now it had been over 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 that it wouldn’t last, so we were making the most of our time with Cayden free from seizures.
The other kids not just Cayden have been through so much, my new husband and I do everything we 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 course of 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 that is the greatest gift. He is witty and smart in other ways that let you know he’s more aware than you suspect. He loves Skibbi Toliet, Minecraft, Roblox and other things most 10 year olds love. 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 gets hot then suddenly cold, 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 seizure free. Our Journey with Cayden is far from over, but we are in a great place so for that we are eternally grateful!
