Before Max's epilepsy was discovered we never had an ambulance come to our home. In all these years we had never had to take our two boys to the emergency room. And I am talking about very active boys, one who has autism, a disorder which, by definition, means that the affected individual lacks an awareness of danger. Was this due to our somewhat overprotective nature or just blind luck? If it was luck, ours ran out this past winter.
How does one respond when you see your child turn gray, lifeless, and unresponsive? When my eldest son called me to come downstairs I knew immediately something was wrong. I saw my husband hunched over Max on the living room floor. He was listening for breathing and didn't think he heard anything. In an instant my world stopped. Everything slowed down like they show in the movies, frame by frame. The images snapped in staccato-like procession: My husband breathing into Max's mouth, my eldest son frantically calling 9-1-1 and my cries and whimpers that this could not be happening.
When the paramedics arrived in full force Max was finally able to be roused. He seemed confused and disoriented. He began to curl up in a fetal position to go to sleep seemingly unaware of all the commotion and people in the room. We tried to describe what we had seen the best we could. Arriving minutes late to the scene, I grasped for any explanation. Max is allergic to peanuts, a potentially fatal type of allergy. We don't allow peanuts or peanut products into our home but there is always an outside chance that this could happen. It is a fear that has caused me nightmares over the years. But no peanut products could be found anywhere. It just didn't make sense until one of the paramedics asked if our son had ever had a seizure. This possibility seemed plausible. But if this was a seizure it was not like any I had seen before. I did not see any convulsions. But I was not present for the entire episode.
It is my belief that by the time I saw Max he was nearing the end of his seizure and transitioning to what is known as the post-ictal phase. Later, as it was explained to us, limpness, loss of consciousness, a grey pallor, and shallow breathing can be symptoms of a seizure. One of the tell-tale symptoms for Max is also an odd clicking sound of his throat as though he is choking. Once I hear this sound I know that a seizure is beginning. They seem to occur as he is drifting off to sleep.
Now that I have seen four of these episodes I am far less frightened than I was that first night. But the fear never totally goes away. As I write this I am near tears at the memory of that evening. It left an indelible mark on our entire family.
But there is a somewhat happy ending as Max's epilepsy can be controlled through medication. There is much that can be done to control the seizures of epilepsy once that diagnosis is made.
I want to make note here that epilepsy manifests differently for each individual. Some experts report that there may be as many as forty different types of seizures. We tend to think of epilepsy as always involving muscle convulsions. Not every seizure is like this. Some last mere seconds and are hardly noticeable. The child may be accused of daydreaming. Other types of seizures may cause feelings of deja vu or an altered awareness. Some seizures cause loss of bladder control as the person loses consciousness. Other seizures may cause jerking of the limbs on one side of the body while the individual remains conscious. In other words, epilepsy does not always mean one thing. In fact, it is entirely possible that a person with epilepsy can have more than one type of seizure.
In addition to differences in types of seizures, individuals who have epilepsy may vary greatly in their triggers, auras, and responsiveness to medication. As with anybody with a medical, mental or developmental disorder, no two patients will be alike.
One of the things that helped me as a parent to understand epilepsy was the support of other parents who have gone through this. I am fortunate to have a very good friend who knows epilepsy inside and and out as two of her children had been diagnosed early on with this disorder. Her years of hard earned experience with her children gave me great comfort that we would get through this. Thank you friend for your support. It is my hope that she will share her knowledge here with us to help you as she has helped me.
We will be discussing epilepsy in depth on this blog but for now here are some resources to get you started in exploring this topic:
If you have any resources or experiences to share about living epilepsy please don't hesitate to comment.
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