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My Son Has Tonic-Clonic (Grand Mal) Seizures

Hello, I write about real life issues that can be informative to people who want to know more.

Jeremy

Jeremy

Being Diagnosed With a Tonic-Clonic Seizure

My son Jeremy is autistic and nonverbal. I also wanted to share what happened the first time I saw him have a seizure. He is doing better every day, and I felt it was important for me to share more. I was shocked to know that my son was diagnosed with having a seizure called a tonic-clonic seizure. When the doctors told me what it was, I felt like my heart fell to the pit of my stomach; I was told in October 2018.

I didn’t know why this happened; all I know is that I was stunned by another unpredictable diagnosis. I had to accept it, and I needed to know what had to be done. So, talking to the doctors about improving my son’s seizure was the next step. It’s complicated because I don’t know when and where the next seizure will happen. I just think life is unpredictable and what is next is unknown, like an airplane fight that may not go right. I just have to stay strong for Jeremy because he needs me and his family.

Jeremy

Jeremy

Furthermore, Jeremy woke up early as usual and he had trouble sleeping. He is used to getting up early for years, he also has sleep deprivation. Usually, I see him enjoy rocking back and forth and staying up late at night. He also wakes up extremely early in the morning for years. Often between the hours of 12:00 am–3:00 am and when he’s up early he will look for something to eat so I would cook what he likes. Sometimes he may want breakfast and sometimes he may want dinner instead.

Anyway, It was a day like any other day, he is always happy just standing and rocking while I'm cooking. He will also walk back and forth a lot and doing so is due to being anxious all the time. He has anxiety and doesn't always sit still and when he gets like this. I will still do what has to be done, but I’ll try to keep him busy. He'll sit down to watch T. V. or sit down to watch YouTube on his cell phone while rocking back and forth.

He preferred to just be himself sometimes and do what he does every day. Since he wasn’t going to go back to sleep, I decided to stay up and also bake some peanut butter cookies. As I was putting the completed cookie dough batter on the baking sheet. Meanwhile, I was standing by the counter, and he was just rocking back and forth. I was preparing the cookies to place in the oven. He likes watching when I'm cooking and he's learning when he's watching.

Jeremy

Jeremy

Going to the Hospital After a Seizure

Suddenly, I looked to my left, and I witnessed Jeremy’s eyes do something unusual as if he wasn’t conscious and aware of what has happened, then his body fell to the floor. He began to shake all over and his body looks as if he was stiff too. Eventually, his brother and sister came out of their room because they heard the loud sound when he fell to the floor and they were by his side.

They said, what happened to Jeremy? I said I don’t know I have to call 911. Anyway, the dispatcher was on the phone, I didn’t know what to tell her. I just told her that my son is autistic and he’s nonverbal; he fell on the floor. I said, that my son looks as if he possibly had a seizure, but I’m not sure what has happened.

After the 911 call, I waited for the EMT’s emergency medical technicians. By the time they arrived the EMTs needed to lift him off the floor to take him to the hospital, to see what has happened. He seemed confused, drained and sleepy after the seizure. It lasted about three minutes and then he fell asleep. He was also laying in saliva that came out of his mouth, but he seems alright enough to try to get up to go to the hospital.

my-beautiful-son-has-autism-and-seizures-part-2

Doctors Talk about Autism and Seizures

As we waited for the doctor who specializes in knowing about different types of seizures, the wait was uneasy. Eventually, the doctor enters the room and my son was still resting. I began to tell the doctor what I saw happen and she wanted me to demonstrate. I had to let the doctor know that his entire body was stiff, twitching and shaking. After speaking to a couple of doctors about what has happened at home. The doctor concluded that my son has a seizure called a tonic-clonic seizure and it was a possibility that he wouldn't have another seizure.

After the initial shock about what has happened and feeling like I was in a dream that I wanted to end quickly. I knew I had to stay calm and cooperate with the doctors about what the next step was for my son. I was told that he needed medication to keep the seizures under control. Also, I needed to schedule an urgent care appointment to see the neurologist. So, she could figure out the best medication for the type of seizure he has.

Furthermore, I was reluctant to accept that he had to take medication for his seizures, I don't like my son taking any medication. Still, after speaking to the neurologist, she gave me a prescription to pick up from the pharmacy, because the medicine had to be given soon. The tablets had to be titrated slowly before he gets his daily dosage.

However, the first medication he was given for his seizure didn’t work well due to increased aggression. He was being aggressive more than before, but it seems to be working fine, only for his seizures. Therefore, the first medication had to be changed, so the neurologist had to try another medication for his seizure.

Autism and Seizures Treatment

Eventually, after the second medication, he wasn’t aggressive as much as he was with the first medication. So, I felt that he was getting used to the medication. Although I noticed he was tired and he would sleep right after the medicine was given. He isn't sleeping right away anymore; he stays up until it's time to go to bed at 8.30 pm.

Besides, I continued to see seizures but gradually he wouldn’t just fall to the floor. He wasn’t shaking, twitching and looking stiff while he was moving. After a couple of months, I noticed that he would sit up when he was in a chair and he would have a staring episode seizure instead.

Also, when he would stand, he wouldn’t fall to the ground. As time pass, his seizures lasted less than 1-2 minutes, but his seizures use to be at least 3 minutes. However, if a seizure is more than 5 minutes, then he would need to go to the emergency room immediately, but his seizures never lasted that long.

Even though the medication is working, I don’t like giving my son medication at all, but I feel he needs medication given for his seizures and medication for aggression. Sometimes I would tell the doctors I had a hard time to feel comfortable from the beginning to give him medication; I let them know that I just thought he didn't need it, but he does.

Jeremy

Jeremy

What Happens During a Seizure?

After I observed if the medication isn't given, then I would have to go to the emergency more often. He would have more seizures and the seizures would last between 2-3 minutes. He will also sleep between 4-6 hours and he would seem confused and drained after a seizure. His medication must be given every day and on time.

I don't always need to go to the doctor, but I also follow the doctor's medication schedule. So his seizures wouldn't get worse because it will come more often. If I see any changes that I'm concerned about, then I would call the neurologist who prescribed the medication. Communicating with the doctors to help them to know how he's doing keep them informed about what is happening with the seizures and Jeremy needs the medication long-term now.

When he has his seizure medication, he sleeps less. Only 2-4 hours and his seizures last about one minute now. Instead of seeing his seizures four times a month, I see seizures twice a month. Also, if he is sitting up, it depends on how he's sitting because he may or may not fall on the floor.

Therefore, I think the seizure medication is extremely important for a person with seizures. The medication Jeremy needs for his seizures helps him function every day. If he has a seizure at school the teachers will let me know what has happened. They tell me how long it lasted and what he was doing when it happened. He also has a seizure action plan so the teachers know what steps to take when Jeremy is having a seizure.

Managing Seizures at School

After a seizure at school, Jeremy must sleep right after, because he struggles to stay awake. So, the teachers place him on a mat to rest for a while before he goes on the school bus at the end of the school day.

The seizures can also be triggered because of sleep deprivation. Often, I'll let the teachers know if he woke up early and if I noticed that he looks very tired because there is a possibility he'll have a seizure.

Sometimes I come close to knowing when Jeremy could have a seizure. Although I’ll never know exactly when a seizure would happen, I'll watch him a lot at home. As long as someone is keeping an eye on him then he will be fine.

He has to be supervised at all times and there are many things he cannot do alone. Such as going in a pool or sitting in a bathtub full of water or staying in the shower for a long time. He also shouldn't walk behind anyone, he must walk side by side with someone when he is outdoors.

I also leave his bedroom door open to hear if a seizure occurs and moving everything away from the area he's near is crucial. He may fall so the floor has to be cleared at all times. After the seizure, he'll wake up as if nothing happened.

Overall, I just take one day at a time and I try not to worry. He is an amazing teenager who is always happy no matter what he's going through. He loves his family and he loves going to school daily because it makes him happy.

Besides, he'll be in the same school until he is twenty-two-years-old. The special education teachers know him now, but it took some time for them to get to understand who he is as an individual with severe autism; I trust them with Jeremy. Eventually, he'll learn more about young adulthood and that's a new chapter in his life.

10 Tips If You or Someone You Know Has a Seizure

  1. Pay attention to how long the seizure lasts.
  2. If the seizure is longer than five minutes, the EMTs must be called.
  3. Lean the person on their side so the saliva can come out.
  4. Always keep the floor cleared because falling on the floor may happen.
  5. Call the doctor the following day if having any questions or concerns after a seizure.
  6. Take the seizure medication every day and on time.
  7. Keep in touch with a doctor to keep the prescription sent to the pharmacy as scheduled.
  8. Don't stay in the shower for a long time.
  9. If the seizure doesn't seem to be getting better talk to the doctor.
  10. If the medication doesn't seem like it's working right for you, talk to the doctor.

This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.

© 2020 Jacqueline L Smith

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