A rollercoaster

The last few weeks have been hard. Really hard. The day before thanksgiving I took Jack to get his hair trimmed for our family pictures. During the process I noticed him startle and get that scared look on his face. I knew something wasn't right. A few days went by and he seemed fine so I though, prayed, that I was just paranoid. But he started jerking more.

The second time I saw it I called the neurologist's office right away. They told me to get it on video. The problem was that it happened so fast and was over so quick that it was impossible to catch. So I did the only thing I could think of, I took as much video as I could. I have hours of footage and some really cute ones too, like this:



Knowing that there was something horribly wrong and not being able to do anything about it was... I can't even come up with words to describe it.

After so much recording I finally caught some of it. On Monday the doc saw it and told us he wanted an EEG immediately. I woke Jack up from his nap, left him in his pj's, and tossed him in the car. And somewhere in there I called Jonathan and told him to meet us there.

Dr. Kane was actually traveling that day but was headed back to town. Tuesday morning I got a phone call that he wanted to see us. Long story short, the spasms are back. The spasms that there was less than a 10% chance of re-occurrence, the ones that could do permanent brain damage, are back. We caught it super early because the short EEG actually looked fine but we already know that the long EEG isn't fine meaning he's having 2 types of seizures.

To make a long story short we're treating it with a med that was only recently approved by the FDA. It's only been available here since September but it's been used everywhere else in the world to treat IS (infantile spasms) for over 10 years. Today was his 3rd day on it and he didn't have any seizures so we're hopeful that it's going to work. He'll be on it for 6 months in hopes that it controls things and gives him time to outgrow the spasms. If he doesn't outgrow them they will eventually turn into some other type of seizure as infantile spasms are specific to infants. He's doing well on the meds though, no major side effects and he's still sleeping okay, thank God.

There are 2 sides to this. On one hand for having what he has Jack is in the best possible position. His development is on track. He's a happy, curious, social little guy and you would never know that anything is wrong with him by looking at him. AND the doctor expects him to continue to stay on track.

On the other hand, we have no clue what this means long term. He could have problems with seizures his whole life. They could still do brain damage and to be completely honest we don't know if they have done any damage or not. Something is going on in his right frontal lobe. We do a repeat MRI (that's going to suck) in a few months so maybe we'll learn something from that.

This whole thing breaks my heart. I've planned for this child since I started college. I've always wanted to be a mommy and I've never done anything so fulfilling. This little guy is my world and I feel so helpless. I've done everything I can possibly think of to get this baby better and it simply hasn't worked. He's at the perfect age. I LOVE these baby days but for his baby days I'm riddled with worry. I just want him healthy, I need him healthy.