Laboratory

Cole is a human experiment. I have met other parents that feel the same.

The constant trying to remove or add variables to see what is making the change sometimes makes me feel like I am working with an over-sized lab rat. A cute one.

This week has been a total science project. Cole has been having more seizures than usual. Perhaps even having another kind (wasn't the 5 types that we can actually classify enough)? He has been having this full body jerking for less than a minute, every day. He does not pass out, have the normal post ictal phase, and will stay standing. The majority of the time he snaps right out of it, like an absence.

It is blowing my mind.
There is no rhyme or reason, although they are more prevalent in the morning.

So starts the elimination process. Did he go outside? What are his ketones? Is he hot? Is he cold? Is it a supplement? Is it the weather? Growth spurt? Tired? Not eating enough? Dehydrated? Is it the phase of the moon?!

Also, hello behavioral problems-we're back! I feel like it's been full blown Keppra rage around here. Hitting, biting, screaming, throwing. Yet he is perfectly pleasant whenever someone else outside of the family shows up. My little actor should get an Oscar. He kicked me full-force, square in the throat when I was changing him the other day. Ouch.

We eliminated all of his supplements, (except for Carnitor, which is really a med) and only gave him Keppra. The jerking continues. SO-it's not the Fish oil, Magnesium, Vitamin D, or the Calcium. I can't even get the multi-vitamin, Selenium, Phosphate, Potassium, and Lite salt in him. We did not go outside for two days and it still happened. Not the temp or the sun. Had labs drawn to see if he was deficient on something or dehydrated as he has not been totally compliant lately (read: ever). They all came back totally normal. What the heck is it?

I'm not sure, but it could be that he is just progressing and developing more types of seizures. Joy.

Brian wrote Dr. Kossoff to see if perhaps the change in ratio in the diet that we made two weeks ago could be the trigger. This month alone has been different and Cole has closed his 7 to 10 day window with more of a 5 to 6 day average for major seizures. He had 3 in 2 weeks. One where he turned a nice shade of blue, that pushed us over the edge, finally springing for O2 at home.

Dr Kossoff replied in his lightning quick fashion and mentioned that perhaps the Keppra is being metabolized differently because Cole is on such a high dose. Perhaps the diet is finally working enough that we can back it off a little? It has been that customary 3-4 months of not changing meds. I think that this theory could pull some weight and be the reason for the behavioral issues. However, I don't think that it is causing more seizures. We see our neuro on Tues. I know that he is going to suggest going on an additional med. He did last time. I just am holding on to what parents at the conference told us. "Keep him as long as you can. Don't drug him up until you have to". My baby is social, he is even polite. Answers the door with a big smile on his face and ushers strangers in with a, "Come in! Please come in! How are you? I'm doing good, good". He tells me, "No thanks!" when I try and get him to drink. He is carrying on conversations. He couldn't even talk in January! I am more than a little reluctant to let that go. It's almost like I can justify seizures, as long as he is with it.

His new favorite saying this week is, "Lets take a look". Do you think he sees doctors on a frequent basis? We were at Primary twice this week and both times he proclaimed, "We're home!" when we pulled up. If I ask him to get his shoes, automatically, "Going to see doctor?" follows. He went behind one of my clients today and reached into her pocket, took out her iPhone, and proceeded to take pictures...all without her knowing;) She was very surprised when he held up the screen and proclaimed, "It's Cole!" I don't want this to go away! Even though I understand that it might.

Until we figure it out, Brian and I are scientists. Perhaps even Mad Scientists?! Cole is our experiment and our environment is our laboratory. Maybe I should get a lab coat?