Our Journey with Childhood Epilepsy

DeSean started having seizures at just three months of age. His diagnosis was called Infantile Spasms. Although it sounds like it could be equal to a muscle spasm, this is nothing of the sort. It is a specific seizure disorder. His seizures came in clusters. In a cluster he would have a series of “jerks” that would pull his head down to his chest, his legs would pull up and one or both of his arms would straighten out and go over his head. This started happening once per day, and then several times per day. Often times it is diagnosed as a part of a syndrome, and children with such syndromes can have a grim diagnosis.

We prayed long and hard. I cried as I administered his first dose. My baby. He had never tasted solid food. Now he was forced to eat so that I could give him prescription drugs. Things just did not make sense to me. The medication he was given at the time seemed to work. And his seizures were controlled. But I was grieving for him. Sad about so much. My prayers increased. My faith eventually grew. And I started remembering that nothing was impossible for God. Nothing.

I clearly remember one occasion when I stepped into the room as my son was peacefully sleeping in his crib. I leaned over the crib to watch him sleep and to pray over him. As I prayed, I sensed God speaking to my heart. He said our son was no longer having seizures and we could take him off of the medication. I followed up with the doctor, who ordered an EEG. The EEG showed that his seizure disorder had resolved, the seizures were gone. The neurologist said “It’s a miracle!” Hallelujah! We praised God. So thankful to see his healing in our sons life. At this time, DeSean’s development was on track and he was successfully reaching each milestone.

And then suddenly, the seizures returned more forcefully than before. Our little guy was only two years old. Again he was prescribed the medication that had worked for him before. It seemed to help at first, but soon it was obvious that the seizures were getting worse and the medication was not as effective. The medication was changed to an adult dose, and a more concentrated form and increased several times. With each increase there seemed to be less seizures, but within a short period of time, the seizures would break through. Unfortunately, there was a continued increase seizures. They came more frequently and more forcefully. Higher doses were prescribed. Higher still. Increased again and again. Finally the medicatioms were being given at six times higher than the original dose. Six times the amount. Six times! And twice daily….Still no seizure control. The doctor says that maybe he is having some seizure control and we don’t know how bad it actually could be if he were not on any medication. I wasn’t sure. I just knew there had to be other options. I asked about diet. He said no diet would ever replace DeSean’s need for medication. And he assured me that no diet had ever been medically proven over time. DeSean now had kidney stones from this medication. And an eye specialist was added to his team of doctors to watch for signs of glaucoma. Blindness being another side effect of this drug. Really? Wasn’t there any better options for this little boy?

So the neurologist added another medication to his already high dose of the first. DeSean seemed to have every side effect possible. Aggression, impulsiveness, hyperactivity, decreased awareness, developmental delays. Our boy was slipping away. We told the doctor that this was not the right medication for our son. He suggested we take the dose higher…after all, he said we had room to move up. I said no! You have to hear me… Our son is out of control. Not only difficult to manage, but suddenly he was unreachable. People did not understand that if you let go of his hand, he would run away. Just like that! Gone! We would put him in a stroller when we were in public, because he could so easily escape. We wanted no harm to come to him or anyone else. We could no longer send him to class at church, or allow him to be watched by any other person. He needed to be line-of-sight, and within reach of his dad or I at all times.

The doctor finally heard our concerns and changed the second medication. Still keeping the first high dose in place, the second medication was weened and another was added. He said this new medication would help and it would have a calming effect. The list of side effects were long. We were concerned. We did not want to administer ANY medications. We wanted to see God heal our son…. We wondered what we should do. We were desperate to see these forceful seizures stop. Desperate to get our boy back. Desperate to see improvement. We waited. We prayed. We hoped for heling. We prayed more. Waited longer. We asked for advice. We researched. Ugh. There were no great options. We finally chose the medication the doctor prescribed.

Within an hour of giving the first dose, our son began to drool and slur his speech. We called the doctor. Yes, this was a side effect. And he said maybe it would get better after his body became adjusted to the medication. We waited. Over the next several weeks the doctor continued to increase the dose in hopes to get DeSean to a “therapeutic level” in an effort to stop the seizures. No luck. His speech became worse. His development declined. Things he knew at age three were now gone at age four. His colors, numbers, alphabet, and growing vocabulary all stopped. He was dazed, drooling, confused, in a constant state of being overly tired and overly drugged. Our boy was continually, gradually slipping away. We grieved. We stayed up with him at night as his seizures took over his sleep…and seemingly took over his life. Our life. Consuming everything.

DeSean was having more than a hundred seizures per day. His day was plagued with various types of seizures. Absent seizures which would cause him to stare, and blink, and seem non-responsive. Seizures that would, cause his body to drop to the ground. Many clusters per day of myoclonic jerks that would cause his head to drop forcefully. He would drop anything he was holding, fall over into objects, slam his head into the table if he was sitting, fall repeatedly only to attempt to stand again, more confused than before. I would read about these seizures that are often referred to as spasms or head nods, but they are so much more than that.

I was a desperate Mama. I wanted answers. I wanted my son back.

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About jaw123456

I am a forty-something year old woman with a thousand interests. I am married to an incredible man who holds my heart. Living wholesome lives and training our children to lead lives that are worthy of the calling that God has for them is our hearts desire. Some of my interests include faith, family, adoption, homeschooling, whole and wholesome foods, cooking, sewing and living simply.
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