When Alex had Epilepsy

My brother was born with Hydrocephalus, three months premature. With that in the back of my mind, I was vigilant about the head to body ratio when Alex was born. The doctors confirmed that his head was larger than his body and that was enough for me to get a CAT scan. The results showed nothing abnormal and for that, I was thankful.

One summer we had a friend visit. He noticed that Alex would stare off and not pay attention quite often throughout the day. We, busy working parents that we were, never noticed it. Running him immediately to our pediatrician, they suggested we take him to a neurologist.

After an EEG, we were told that Alex had epilepsy. Petit mal seizures or absence seizures. They looked like staring spells, only you could tell these were different. He would sway slightly, lick his lips repeatedly and tug lightly on his shirt. These “ticks” were very, very slight. If you sat and watched him, for extended periods of time without interruption, you could see it. This happened at least 30 times a day by our count and they would last for 15-20 seconds at a time.

The EEG tested for his trigger. For some, the trigger is flashing strobe-lights, like in video games. For others, it’s hyperventilation. That was Alex’s trigger. So whenever he held his breath underwater, whenever he played tag with friends, blew bubbles, and especially during his one extracurricular activity, Karate, he would have seizures. I remember the Sensei telling us that little Alex was always off in dreamland, how he would be great at first, but would lose focus and zone out. I would talk with Alex and ask him if he just didn’t like Karate anymore. He would always tell me that he really was paying attention. He didn’t know. Mike didn’t know. I didn’t know. And when we found out it was all a part of epilepsy, we were riddled with guilt.

When Alex had #Epilepsy @fillpraycloset #motherhood #workingmama

Every week, Alex had his blood drawn. The medication he was taking, Ethosuxemide, was the most trusted and commonly prescribed medication for his type of seizure. A side effect was possible decline in white blood cell count. Alex was doing well and had no side effects, at first. Soon, his blood tests showed that his white blood cell count was steadily getting lower and lower. The doctor assured me that it would be ok, that we had to monitor him, and the moment he had a fever, we had to rush him to the emergency room.

Low white blood cells meant low immune system. A cold or sinus infection could be very dangerous for him. I remember one day coming home and kneeling in front of Alex to check his temperature, like I did every day after I got home from work. I would do it in such a way that it wouldn’t alarm him. I would kiss his forehead and ask him how his day was. This kiss, on this day, at the doorway of my bedroom, came back hot. That was the last day Alex was home for the next month or so. He was immediately quarantined. I stayed with him. Every day and every night. It was a children’s hospital, so they had a sofabed for parents who had to stay with their children. I had a laptop and worked as Alex slept. Mike would come every day and then spend the evenings with our children.

Alex’s levels wouldn’t increase. Turned out that Alex was one case in a million cases of having an allergic reaction to the medication. I gave him that medication twice a day, for weeks. There was so much in him that he was practically depleted of white blood cells when he entered the ER. The doctor spoke with other neurologists around the country. They never heard of an allergic reaction to this medication, it was that trusted.

After a few weeks, the hospital was so concerned that his levels weren’t getting back to normal that they tested for Leukemia. My little 4 year old Alex had a bone marrow aspirate. His right arm was in a splint to keep it steady for the constant pokes, draws and IV drips. He tested negative for Leukemia, but the scare it instilled? I pray for parents, their families and the children that have to endure it.

Alex couldn’t get visits from the neighborhood kids, so it was just he and I mostly in the room with the nurses and doctors. Mike held down the fort at home, brought me food and time to take a shower and rest. It was then, I realized I couldn’t work full time anymore. Something had to be done. Alex needed care, a lot of care. Long story short, I became a stay at home mom.

When Alex had #Epilepsy @fillpraycloset #motherhood #workingmama

It’s been two years and Alex is seizure free and I am back at work full-time. I still watch him like a hawk and when he daydreams, I panic. I will always panic. I will always worry. Day dreams are supposed to be fostered in children, and I have a hard time allowing him to daydream for very long. I always shout “Alex?! Alex?! Can you hear me?” When he had seizures, he couldn’t hear me, or see me until the seizure was over. It was like his brain was on a loop and he was stuck in limbo until the needle on the record player was moved to the next song. Snippets of his life, would just be missed.

He tells me that he doesn’t have brain freezes anymore. But with every fever, I am that mom again, on her knees with hot lips, remembering the look on his face, and his sweet, calm demeanor. Never worried about himself, and just wanting to make sure his “Favorite Mommy in the whole world is ok”.

When Alex had #Epilepsy @fillpraycloset #motherhood #workingmama

 

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28 thoughts on “When Alex had Epilepsy

  1. So glad you had a happy ending! I couldn’t imagine what I would do in your situation. I’m always watching my kids for different issues. I’m always scared I’m going to miss something. Glad it was found for you guys and everything is ok now. Hugs!

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  2. I remember Aggie’s story! I read a book by Emily Cook about her daughter’s condition, (different case though because she had oglioastrocytoma), she has been seizure free many years now. I cried buckets of tears over that one! I cannot imagine the fear Cristina. I’m praying for the total healing of Alex. Emily blogs at Weak and Loved by the way and I just know you will love reading her posts!

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  3. So scary! I can’t imagine. I’m so happy he has been seizure free for so long. Is he on medication or did he just grow out of it?

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    1. He just grew out of it. The doctors told us he would closer to 18-20! Not 7! So no more medicine. EEGs nothing. There were other meds he took after that made him aggressive and physical. He didn’t know why and it would make him sad. It was a really awful time.

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  4. Cristina, your story about Alex made me cry. I can only imagine how you must have felt, especially seeing your little boy in the hospital like that. I’m crying just thinking about it. I’m so glad he’s doing so well. Love you guys.

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  5. There are so many mysteries in medicine, so many unexplainables it reminds me the only explanation is a divine one. Your sweet little guy… how frightening that must have been for him! I’m glad he is better now and I know, I know, the worry never goes away completely!

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  6. I’m so glad he grew out of it! What a trying time, though! I’m glad you were able to look after him well, and make the changes needed to support him :)

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    1. There are more tentacles to this. The changes we made had long lasting effects financially. Rough times man, but sometimes, you take the lesser of the two crap sandwiches and learn to like the taste of it.

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      1. C’est la vie, Salty. Keep looking for Silver Linings, and live that way. Life’s never easy, and some say it’s not meant to be (those people suck. Especially when they’re smug about it, but there ya go,..)

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  7. So scary…I’m glad he is better. I had a classmate who had this type of seizure when we were growing up. Everyone knew about it, and when it happened at school, we all just went on with what we were doing. So strange to think of it now.

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    1. I can’t even begin to talk about him and school during this time. I am still incensed at how the teachers dealt with it – never adding it to his file, or remembering. The report cards would come home “doesn’t pay attention”, “daydreams”, “could use more focus in this area”. NO KIDDING! We’re working on it! We sent in sheets for them to add notes of when he was having the seizures and never got one back. Not one! I completely understood that the teachers had 20 other children to watch and it would be extra work for them to complete, but, as someone who’s two classes away from a Master’s in education, I know you figure out ways to make the time! Just glad we’re in a better place.

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  8. My son has epilepsy, too, with absence seizures. He’ll be six in September, and he was diagnosed on his fourth birthday. He’s been on trileptal for almost two years, but he’s been seizure-free. The hope is that when we go back to the peds neuro this fall, they’ll be able to gradually back him off the meds and he’ll have outgrown it.

    It’s awfully scary to think about what is happening inside your child’s brain and to know something isn’t quite normal. His EEG didn’t show a reaction to any of the usual triggers, and they couldn’t produce any seizures in the office, so it was diagnosed on our report. I’ve occasionally worried that maybe we didn’t see what we thought we saw and he’s been taking these medicines all this time for nothing…but mostly, I’m just grateful that this drug seemed to work for him. We have dealt with some not-fun side effects, but mostly, it’s just been a blessing not to have the seizures.

    I’m so happy (and encouraged!) to hear that Alex outgrew his epilepsy…praying we’ll have a similar outcome. Thanks for sharing your story.

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    1. First, thank you for sharing this Abbey. There were so many instances when I wished I had another mom to talk to about this. It was just Mike and I trying to console one another through it.

      Alex was also taking Keppra at one point. That made him SO angry and physical, and then after those episodes he would feel so badly because it’s not his usual temperament. In the end, he took Lamictal and that worked really well. The trial and error of medication schedules are awful. We had to increase the dosage over three months, so we had charts and charts of amounts, times and effects an hour before and after administering. Then the same when he needed to taper.

      Please know that if you need someone to talk to, I’m here! I am always, always around. Praying for you, your family and your little guy.

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  9. What a terribly difficult time you had!!! So grateful you got the help he needed–but still, I’m sure you live with the fears and concerns that so few of us can really know.

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  10. Wow wow wow thanks for sharing this! So thankful that he doesn’t have to suffer with seizures anymore. Such a scary thought that it was so subtle and couldn’t be so easily detected. My 7 year old Aiden is finally “growing” out of his asthma stage. He is lucky that it’s not exercise induced so he can run around with no problems but it’s cold and weather related (change in atmosphere pressure jacks up his lungs). His indicator of respiratory distress is coughing so with every cough, every symptom of a cold, every change in weather conditions keeps me on alert. Many hospital stays and MANY sleepless nights with breathing machines have been my norm.

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  11. Loved your post. I will be sharing it with my sister! Her daughter has seizures associated with cerebral palsy and it has been a long tough journey for her.

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  12. Hey Cristina——your story is “powerfully positive” in every way—I had no idea your family has triumphed Epilepsy! So proud of Alex … and Gabe,too! Many families can learn from what your family has experienced. Cannot wait to hear your magnificent singing voice again. Happy days ahead :)

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    1. Hi Kris! Thank you for stopping by and for leaving such uplifting words. Alex is a great kid (Gabriel too!!) Can’t wait to see you again! xoxo

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