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Because every family deserves the blessing of a child with Down Syndrome...

10:41:00 PM


Last week I found out that my 9 year old bio. daughter has epilepsy. This is not ever anything a parent hopes for. But we were glad that they were able to give us a diagnosis because it was obvious that something wasn't right, and that things were getting worse.

We started noticing "episodes" sometime in May of 2009. She would zone out, space off, or not hear us. At first we weren't sure what was going on. By mid summer we were sure it wasn't a hearing problem, but she definitely would zone out for a very short time, sometimes as little as 5 seconds and sometimes a little longer.

By September the episodes of zoning out were more noticeable, lasting a bit longer and more frequent. I started to think maybe she was having seizures. That seemed so unlikely. Then her teacher witnessed a couple episodes and gave me a call.

So to wind things up, we took her to the Doctor. He ordered an EEG. 2 1/2 weeks later we got the call. The doctor confirmed that she was in fact having multiple seizures and she is now starting medication.

Epilepsy is a brain disorder involving repeated, spontaneous seizures of any type. Seizures ("fits," convulsions) are episodes of disturbed brain function that cause changes in attention or behavior. They are caused by abnormally excited electrical signals in the brain.

My daughter experiences what is known as Absence seizures, or childhood absence epilepsy.

Childhood absence epilepsy (CAE), also known as pyknolepsy, is an idiopathic generalized epilepsy which occurs in otherwise normal children. The age of onset is between 4–10 years with peak age between 5–7 years. Children have absence seizures which although brief (~4–20 seconds), they occur frequently, sometimes in the hundreds per day.

Absence Epilepsy

People with absence epilepsy have repeated absence seizures. Absence epilepsy tends to run in families. The seizures frequently begin in childhood or adolescence. If the seizures begin in childhood, they usually stop at puberty.

Although the seizures don't have a lasting effect on intelligence or other brain functions, children with absence epilepsy frequently have so many seizures that it interferes with school and other normal activities.

Absence seizures.

Absence seizures, also called petit mal (which means "little sickness"), cause a momentary loss of consciousness. These episodes usually last less than 30 seconds and may be so brief that they go unnoticed. People with absence epilepsy can experience as many as 50 to 100 of these seizures a day. They may look as though they are simply staring off into space or they may go rigid or jerk and twitch.

Epilepsy usually is diagnosed after a person has had two or more seizures that are not provoked or caused by a specific medical illness. When epilepsy is present, a person is said to have a tendency to recurring seizures. While seizures can be caused by injury to the brain or family tendencies, the majority of times, there is no known cause of epilepsy.

The following link is to the video which resembles what my daughter experiences. It helps to see why it took us a while to identify what was going on as a definite medical issue.

Now that I am aware, the seizures are very obvious to me. They have also increased in time and intensity. She is ready to feel "normal" again, as she usually recognizes when she has had one. She has missed parts of tests, lectures, instructions, when to get off the bus, when we call her, when it is her turn to read aloud, when to come in from recess and more. It is so hard to see her able to take in only part of her day. To see her left with blanks throughout the day that she knows she has missed leaves her feeling sad, scared, alone and dumb.

Epilepsy is a treatable condition, and there are children waiting right now on Reeces Rainbow that are dealing with it without the love and security of a family. Do not let a diagnosis like this keep you from letting your heart fall for them!

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