So at the diagnosis today we did not get the 'all clear' from the Pediatric Neurologist as we had hoped. Chase has been having Absence Seizures, which we have not been aware of.
They caught two small seizures during the EEG testing. I believe the Neurologist said they both happened while he was still awake while I was reading him a story. I had noticed him fluttering his eyelids, but I had just thought he was blinking hard trying to stay awake for the story... little did I know I was witnessing one of his seizures. Now that I know this, I realize he has done it before... I just didn't know. (how did I not know?!?)
Absence is one of the most common types of epilepsy in kids, and does no damage to the brain (thank goodness!).... most patients grow out of it by their mid-teens. It is often overlooked because it just looks like the child is daydreaming. It is genetic. While the Dr was giving examples of situations, they completely resonated with me... being in the middle of a class and then 'all the sudden' having the teacher talk about something else, and being confused. 'All the sudden' noticing the kids around you had their books open to a specific page and realizing that yours is still shut and not knowing what you were supposed to be doing. I remember feeling this exact type of confusion as a child in class. Either I really was just day dreaming, had ADD, or just maybe, I was also having Absence seizures and no one was aware of them.... If I did, I must have been one of those people that have grown out of them because I have not had any type of situation like that since high school.
Some kids have only a few seizures, while others might have hundreds per day... scary huh?
To figure out where Chase stands, we are going to be doing a 'take home' two day EEG test. Chase will have the electrodes on his head hooked up to a 'backpack' that he will have to wear constantly for two days. We will also have to constantly video record him during those two days. The camera is on a 3-5ft cord that will need to be positioned so that his eyes can be seen by the video at all times... so that they can see how often he has a seizure as well as measure the brainwaves. There is also a button that the parent/adult can push when the think the child might be zoning out or having a seizure, or even just a strange behavior and it will show up on the readings. Chase is going to need constant supervision. This will be interesting.
We are going to try to have this test done the first weekend in August... which will also be when we celebrate Ami's first birthday. So for the photos, Chase is going to be in that mummy hat again with a funky backpack... that should be an interesting one for the photo album :(.
On the bright side of things, medication has been proven to cure this type of seizure. In Chase's case, the Dr says that about 1-2 years on medication should completely cure him of the seizures and he will be fine for the rest of his life. Side effects might be liver toxicity, but probably not to the levels that would actually hurt him. I guess I am just glad that we know SOMETHING now, and are not just sitting here wondering what is going on. And I am also thankful that this type of seizure 1) doesn't hurt his brain 2) is cureable and 3) that he really is still a healthy kid and will not have a loss of quality of life.
We will just have to take precautions with him, like not letting him swim alone, bike ride alone, climb high places (this will be a tough one), and basically not allow him to be in situations where he could be hurt if he 'spaces out.' But thankfully, this should only be for a few years, not his entire life. So for that, I am especially thankful. But for my baby boy, I just wish I could take it for him and not let him have to go through this. Hopefully he won't remember most of this, because we caught it while he was still young.
Thank you friends and family for all your thoughts and prayers through all of this craziness for the last month. They have sustained us, given us courage and hope in this time of 'unknown' and stress. We rest in the knowledge that God is our creator and knows every sorrow no matter how small... and that in all situations, brings love and hope that sustains us.