“Epilepsy is a medical condition that produces seizures affecting a variety of mental and physical functions. It’s also called a seizure disorder. When a person has two or more unprovoked seizures, they are considered to have epilepsy…A seizure happens when a brief, strong surge of electrical activity affects part or all of the brain.” (source: Epilepsy Foundation)
60-90 percent of people with tuberous sclerosis have epilepsy (source: TS Alliance). Nami had his first recognizable seizures at 4 months of age which quickly developed into infantile spasms, a life-threatening type of seizure. We were able to get them under control for many months before he started having seizures again. Since he was 2 years old he’s had seizures just about every day. Most of them are absence seizures or complex-partial seizures which often interfere with his breathing. Over the past year Nami has had about 100 seizures on most days and some days he’s had over 300.
Nami's First Recorded Seizures
There are various treatments for epilepsy, usually starting with medication. Nami has taken several medications and combinations of medications. At one point he was on 5 anti-epileptic medicines and was still having constant seizures. His neurologist says that Nami is drug resistant and that’s why he still has so many seizures.
Every once and a while Nami will have a tonic-clonic seizure (formerly known as grand mal). Once this happens we almost always have to rush him to the emergency room because our rescue medicines fail to work. The ER has to pump him so full of medicine in order to stop the seizure that he has stopped breathing twice and had to be intubated (one such experienced told in my post A Mother's Intuition).
It is extremely difficult to have a child with epilepsy. I can’t ever be more than 5 minutes away from Nami unless he is with someone that is trained to help him if he has a seizure. I’m scared to go to sleep at night because his seizures continue in his sleep. Every place I go I have to park close so that I can rush to him in an emergency. I have to take his rescue medicine and Advil/Tylenol (in case he suddenly spikes a fever) everywhere we go. There is no way to avoid him having seizures in public places, and I fear the scrutiny of others when this occurs. One of his more dangerous seizures can happen anytime, anywhere. Most of the time they occur without warning.
I live in fear that at any moment my son could have a life-threatening seizure and I won’t be there to help him. I can’t ever feel too comfortable when things are seemingly going well because he will catch me off-guard with another tonic-clonic seizure. I feel helpless because all the strategies we’ve used have not worked. Every time I get in a rut and have to call the neurologist, they apologize because he is such a difficult case. They tell me that I’m already doing everything I can and that there is nothing more to do as we work toward brain surgery (which is a very SLOW process by-the-way).
Last July I took my boys out to eat while Salesi was at work. I almost never give my boys sugar because surprise surprise, TSC also affects the enamel of your teeth. I made an exception on this HOT day and fed Nami some frozen custard. He started out attacking it, like he usually does when he’s around food…especially a rare treat. Throughout the few minutes of eating the custard, Nami changed from begging me for more to being indifferent. I was shocked but told myself that the 100 degree weather was probably making him tired and that he started eating so fast that he may have gotten a tummy-ache.
I loaded my boys in the car and we headed down the street to take Salesi dinner during his break. We were driving in rush-hour traffic near a college campus that has 5 lanes on the side of the street we were driving on. I kept checking on Nami in the rear-view mirror and he seemed to be getting more and more out of it. It was in the middle of that traffic that Nami started to seize and foam out of his mouth. I started to scream and cry. I looked at the road and there were cars piled up on all sides of me, concrete barriers and roadwork blocking all sides of the road. Then he started vomiting. I feared he was going to aspirate and I could not move over nor was there anywhere to pull off to the side of the street for at least a ½ mile. I considered jumping out of my car, but the cars were all moving, even if it was at a slow pace, and I heard the following in my head, “You will not be any good to your son if you are dead”. I had to helplessly sit in the middle of that traffic and watch my son seizing away.
I honestly don’t know how I drove that ½ mile because I was screaming uncontrollably and driving like a maniac. Yet I somehow got through 3 lights and a TON of traffic without getting into an accident. I wrote the following account in my journal: “I pulled Nami out of the car and he was burning up. I laid him on the grass on the side of the road. I was freaking out…I mean freaking out. Screaming and crying, throwing stuff all over the place. The car was still running, three doors flung open, and Kope inside screaming for his crazy mama. Nami had thrown up all over himself and his seat. I had Tylenol, so I gave him that through a syringe in between his seizing. I frantically called Salesi who didn't answer but finally called me back. I screamed at him to drive to us. I got the diastat out of the diaper bag and gave it to Nami. He continued to vomit and seize. This was all on the side of the road while car after car whizzed by.
Salesi got there quickly and ran over, keeping the vomit out of Nami’s airway. I tore off Nami’s clothes and poured ice water through his hair and rubbed it all over his body. I frantically called my dad [his pediatrician] to see what I should do. I was NOT calm.” My dad was actually at the nearest hospital with my brother who had just gotten out of surgery. We decided to drive toward each other so that I would quickly have a doctor’s help.
At this point I knew the most important thing to do was to get Nami’s fever down in order to help him stop seizing. There was a Walmart on the way so I ran in to buy some Tylenol suppositories since he had vomited all his medicine. I was not functioning and couldn’t see the medicine, so I begged the pharmacist to come help me find the it. I almost ran out without paying but remembered at the last minute. I gave Nami the medicine. We met my dad and Nami was still steaming hot so we were wiping him down with a damp cloth. My dad said that although Nami was still having intermittent twitches, he was able to bring his eyes midline which was good. We went to a nearby pharmacy to get more rescue meds and were going to keep a close eye on Nami who was continuing to vomit all over himself and Salesi.
My journal account continues: “My dad and I went into the pharmacy and my dad explained he was a doctor and needed to call in a prescription for his grandson who had just had a seizure. The pharmacist was completely annoyed with my dad and in no hurry to help him. When he finally paid enough attention to my dad to get the information down, he told us we could pick it up in 15 minutes. WHAT?!?!?! Who does that? You really want to exert your power in an emergency of a 3 year old boy? Whatever!”
When I got back in the car Nami was completely jerking with his seizure, so we went across the street to the emergency room. “My dad picked up Nami and we walked into the emergency room’s ambulance entrance. You have to have a badge, which my dad had, to get in. He walked right in and asked where he could put his grandson who was seizing. Everyone was very confused because we hadn’t followed the proper protocol of going into the emergency room, but then they sent us to a room after my dad explained he was a doctor and had rights to practice in that hospital. They got Nami all hooked up to the IV and different monitors and gave him Ativan. He continued to seize.” The ER doctor called Nami’s neurologist and she told him to give Nami Fosphhenytoin (which we had already asked him to do). There were some awkward moments in the ER as my dad was trying to help but the ER doc was trying to push him out of the way. He did finally allow my dad to help after my dad explained he had rights to practice there (even though he doesn’t do much at that particular hospital). It still remained awkward with the ER doc throughout the process, though.
After about a 45 minute long seizure, they were finally able to get it to stop. My poor baby was so out of it, but then he looked at Salesi and said in a very quiet, singsong voice “dadadada”. We were finally able to take a breath. Salesi and I had vomit all over us and it was all over the car. Our car was a disaster from tossing things all over the place. We had also lost Salesi’s keys and phone.
Like always, my sister Meridith rushed to our aid, getting us what we needed from our house and then taking Kope with her while we stayed in the hospital. She is my constant lifesaver! We finally got settled in the hospital and I was able to fall asleep by 1 am only to have the raging Nami wake up a couple hours later. Every time he has that much medicine pumped into him, he rages uncontrollably for hours. These rages lead us to try to get released from the hospital as soon as possible so that he doesn’t injure himself as he’s hooked to so many wires.
Once we got home he was so mad that he wouldn’t stop tearing through the house. If I tried to stop him to keep him safe, he would kick and punch me like crazy, and he’s a strong kid. Kope had no idea what was going on, so he got really upset too. I was more than exhausted and I had no idea what to do. This went on for about 2 hours. About 30 minutes into it, I tried giving Nami benedryl to see if it would calm him down, but we had no luck. He was beating his head against the walls and floors, including the tile floor. I just cried and cried out of desperation. During this episode, Meridith called to see if there was anything she could do and I said, “Yes! Just come help me manage my kids”. And, she rescues me again.
After about two hours of driving, Nami finally fell asleep, only to wake up with a fury a couple hours later. Needless to say it was a difficult night. It often takes days for Nami to recover from an episode like this. He is a danger to himself and we had to start even more medication after this episode to get him to calm down. After giving him the new medicine, Nami went from looking like an angry raging drunk 3 year old to a happy giggly drunk 3 year old. I still had to follow him everywhere because he continued to try to stand up and then he’d fall down. He’d try to pick something up and it would go flying. Apparently Kope found this amusing and began to mimic Nami. So, it looked like I had 1 and 3 year old goofy drunks falling all around my house.
This is a little snippet of our lives with epilepsy. We have had to learn a “new normal”: one that includes constant fear, preparation and vigilance; one that includes having to identify the quickest exit and location of the nearest hospital no matter where we are; one full of many medications, bills and phone calls; one where we fear any illness that our son may catch because it might lead to a tonic-clonic seizure; one where we are not free to travel, go on typical family outings or just relax.
BUT…more importantly, our new normal includes constant love and support of family, friends, and even strangers. It includes one where we are blessed with the best doctor in the world as my dad (and no I am not biased). It includes bright moments as we see our sons interact and care for each other. Our “new normal” is not what I had ever imagined, but despite its difficulties, it is full of a richness that I never knew existed.