Wednesday, September 16, 2009

A Ray of Hope?

I was so upset about the 9 minute long voice mail that I got from Daniel's teacher the other day that I couldn't even think. I asked Mike to listen to it so we could discuss it before deciding what action we were going to take. Mike told me that Daniel's teacher said something that really resonated with him. The line was this:

Daniel will just be sitting there working and then it's like he's suddenly gone.

Mike said he could relate to this and even said that he experiences it as well. It's like he's listening and the next thing he knows, someone is saying, "are you listening to me?" He says it's really frustrating but he can't help it.

As we were talking, Mike casually mentioned that his brother has Epilepsy. I knew that but it wasn't on my radar. Yesterday, I, on a whim, Googled Epilepsy in children. The first article that popped up was something about getting the school ready for a child with seizures. I clicked on it and I couldn't believe what I was seeing.

The first thing they said to let the school know was "my child is not ignoring you. He's having a seizure. Please let me know when this happens." What? Aren't seizures where you lose total control of your body and have convulsions? Apparently, there are many types of seizures.

There is a type called Absence Seizures where someone hits the pause button in the brain. It gets turned back on after 10-20 seconds and the child has no memory of it and, aside from appearing to be daydreaming, there are often no other symptoms. Some have eye rolling or fluttering but most just stare. The scary thing is these can happen 50-100 times a day. And it's often genetic.

I call Mike and he tells me that this is the type of seizure his brother has. Now we're getting somewhere. I called the pediatrician and we have an appointment for Friday morning. I was talking with my friend, Vivian, last night at TKD. Her husband is a neurologist and she told me that more than likely they'll just send him for an EEG for an official diagnosis. That's what Marc told me as well. I also called his teacher and told her to write down any time she may see him appear to be daydreaming. I don't know if she'll actually do it but we'll see.

My gut tells me that this is what it is. Everything I've read about it and everything I've seen on YouTube of kids with it tells me that it's seizures. Not that I want him to have Epilepsy but it would explain so much and it's completely treatable. My research tells me that most kids are able to stop meds after 2 years. The school will also be forced to make accomodations for him, like repeating directions and offering extra help.

Please pray for Daniel on Friday. The poor thing needs to get rid of the label of being a bad kid.

4 comments:

the Joneses said...

I'm so glad you might have found an answer! And maybe he really IS ill, in which case he does need a pediatrician, but I still hold it against the school for suggesting that so much. It's not like they suspected Epilepsy.

Keep up updated.

-- SJ

Michelle said...

These seizures are the exact ones that we were told to watch for in Jonathan and I like you thought that seizures were jerking, falling etc.

I will keep you all in my thoughts and prayers and please keep me updated!

On a lighter note - make sure you take a picture of Daniel when he has his EEG - we have many of Jonathan and hey are funny.

Barbara said...

Sara...they absolutely wanted me to put him on Ritalin (or an equivalent). They just can't come out and say that because it's illegal but they can recommend that we take him for an evaluation.

Michelle...does Jonathan have this? If so, is he responding to treatment????

debbie said...

Goodness Barb, I've never heard of them. I sure hope they can find out something soon.