My Son the Chemistry Experiment

We've been home from NY for almost two weeks and Evan has had two experiences with tunnel vision since we got home.

The first one was the day after we got home and we blamed it on the multivitamin he was taking. He started taking the multivitamin and started having some little breakthrough seizures and tunnel vision in the same time period prior to going to NY. Then he didn't have the multivitamin in the hospital and everything was great. We came home, gave him the vitamin and he had tunnel vision. We stopped the multivitamin and he had no tunnel vision or side effects, so naturally we took turns patting each other on the back for our brilliant medical detective work.

Everything was smooth sailing until today. We received a call from the school that Evan was having tunnel vision and nausea so we went and picked him up to wait it out at home. We're pretty much convinced that the issue is related to his medication dosing because it always happens after he would have metabolized his morning dose. After talking to his doctor we are going to try adjusting the amount he gets in each of the three dosages but keep the total daily intake the same. Hopefully that will spread out the medication better and Evan will stop having side effects.

No more wires!

We are finally free!
Yesterday was a whirlwind...Evan finally got disconnected from the Video EEG, we left the hospital, packed up our stuff from the Ronald McDonald House, Grabbed a quick dinner and rode the bus home. We got home at about 10:30 last night and it is so good to be home!

The EEG was completely clean -- after 4 days of monitoring they saw no seizure activity (neither did we) and no abnormal spikes in the EEG patterns. So that's good news! As for the crazy seizure activity, tunnel vision and nausea, we don't have clear answers. Maybe it's just his body adjusting to the increase in meds last week. None of it was repeated in the hospital so we're going to watch and see how he does at home. If the symptoms persist, they will be blamed on the medication not working or Evan reacting to it and we'll switch to a different med.

So for now we wait and watch...

Pokemon Evan

Evan thinks having his hair stick up from the EEG leads makes him look like Cascoon from Pokemon. I just think it makes him look studly, especially with the GQ pose!

We haven't seen any seizure activity since we got to NY and I "slept" with Evan last night at the hospital. This morning they took blood with a finger prick and Evan scored some Yu-Gi-Oh! cards. His favorite is one called Silent Abyss -- no irony there!

After the finger prick the lab said there were issues with the blood test and they wanted a blood draw from a vein. Evan was so NOT cool with this idea. As the resident tried to convince him that it would be fast I heard blood curdling screams come from my son just at the very thought of a needle. This is not typical behaviour and in the end he won...for today at least, they'll try again tomorrow.

Things got better after that and it was great having Aria here with us...even with everything going on there is still a lot to smile about! I love how close they are.

Evan Super Moss

We are in the hospital and Evan is hooked up the the Video EEG and enjoying the opportunity to watch all the shows we never let him watch at home. In the hospital, pretty much all rules are out the window!

We left early this morning and Evan had more tunnel vision, threw up twice on the ride up to NY and then slept most of the way to the city. We are really thinking the tunnel vision / vomiting is a toxic reaction to the medication increase, but there is still the issue of the seizures that caused us to increase his meds in the first place.

I snapped this photo with the camera on my phone as we were walking to the hospital and thought it was fitting...

Today (which has technically past) was pretty rough. Evan started having seizures this morning and they just kept coming and coming. They were Simple Partial seizures and we couldn't see any movement or twitching except for in one of them. He never lost consciousness and was able to tell us when they started and stopped and we tallied 19 seizures in break-neck speed. After the seizures stopped he moved onto several bouts of tunnel vision (possibly seizures or maybe a toxic reaction to medication) and vomiting.

So we are heading up to NYU Hospital tomorrow morning and Evan will be checked in for a Video EEG for a few days of monitoring. We are bringing Aria with us on this trip and it'll be nice to have her there with us -- we gave her the choice to come with us and she wanted to go. It might be hard for her to be at the hospital for that long but I think it's even harder to be at home waiting for information with an overactive imagination.

I'll try to post every day while we're in NY to keep everyone up-to-date. We leave the house in six hours so I guess I should head to bed!