Sunday, November 22, 2009

In Which Connor Has Another Seizure

I was intending to post more about the house today, but Connor decided we needed a change of topic. So he had a seizure today.

A new kind of seizure.

I put him down for a nap after lunch, and remarked to Jer that he seemed to fall asleep very quickly-- he'd been down for less than five minutes and had abruptly stopped talking. Even though his alarm hadn't gone off, for some unknown reason I decided to check up on him.

When I walked into the room he was halfway on his back, his eyes partially open and fixed straight ahead. His mouth was open and I could hear a faint rattling noise, as if he was having difficulty breathing. I moved into his line of sight and called his name, which met with no response.

I picked him up and carried him into the living room where Jer was. I told him that I thought he was having a new kind of seizure. Connor's eyes were still fixed, and while he was totally limp he was still breathing. His jaw began to tremble uncontrollably. Every once in a while he'd weakly move an arm or a leg. I put Connor down in Jer's arms and ran to get his oxygen tank. About the time I got back, Connor stopped breathing.

His eyes were still open and his jaw was still trembling, but now he was turning blue-gray. I lay him down on the floor to attempt mouth-to-mouth, but while every other muscle in his body was totally limp his jaw was locked shut. Then all of the sudden his eyes closed and his mouth relaxed. I started rescue breathing, and after about a minute he began breathing on his own. He woke up shortly thereafter and was his usual post seizure self: tired, scared, and angry. The whole thing lasted about a minute and a half, and after he slept for about three hours he woke up and was back to his old self.

This seizure was very disturbing because up until he closed his eyes and went limp it looked very different from what we've seen him do in the past. I'm e-mailing his neurologist about it and we'll see what he says, but it's concerning on a number of levels. For one thing, Connor's apnea monitor works by sensing movement-- any movement-- and the alarm goes off if it doesn't sense any for more than fifteen seconds. So the trembling Connor was doing meant that the alarm didn't go off, and wouldn't have gone off until he had gone totally limp-- a good thirty seconds or so after he stopped breathing. I have no way of knowing how long he was seizing before I got in there, though it couldn't have been for very long since he'd been talking up to shortly before I got up to check on him.

It's also disturbing because it's a change in Connor's seizure activity. This combined with the possible mini seizure he had on Tuesday and the long seizure he had at the end of October suggest that his current seizure medication is not quite as effective as it has been. This is upsetting because the Keppra, which Connor is currently on, has had little-to-no side effects and has worked well for a year and a half.

As a result of the seizure today, we have put Connor back on a pulse oximeter in addition to his apnea monitor. As the pulse ox machine tends to have frequent false alarms, we'll also be investing in a color video monitor so that we can see how Connor is doing. Otherwise I will be getting very little sleep at night, since I will need to check him every time the machine beeps (five times while writing this blog, thus far). Right now Connor is sleeping in our bedroom so it's not as big of an issue, but once we are in the new house he will be back in his own room again so we'll need to have a way to check and make sure he's okay. Once we add in the video monitor this means that he will be sleeping with four pieces of equipment. That's a lot of stuff.

He's made such fantastic strides in the past few weeks that it makes a setback like this seem to hit even harder. Two steps forward, one step back. That's the way it goes around here sometimes.

I'm just glad he's okay.



Niksmom said...

Oh, Jess, I am so sorry that Connor's seizures are changing and not as well controlled right now. It's stressful as it is when your child has multiple medical issues (ours have been different but we've been there), but the changes on top of everything? Ouch. Sending prayers that there is a simple explanation and even simpler treatment/fix.

leah said...

The change in seizure type is stressful, especially if his monitor can't pick up the new type. I hope Connor's neurologist can get back to you very quickly. They really need to come up with better pulse-oximeter monitors- ones that don't go off because they slipped out of place, etc.

Hopefully this is just a bump in the road and things will settle down very soon.

Julia O'C said...

How completely terrifying. Thank God the Mommy Monitor was working and you decided to check on him.

I'll get the prayer line going. I wish I could do something other than pray and tell you that I'm thinking about you guys. I hope you hear back from the neurologist soon and that he/she has answers for you.

Julia said...

I'm so sorry. So frightening and stressful. I hope you get effective treatment for it soon. We have a black and white video monitor that is great -- although very sensitive to interference, and sometimes no matter where we put the receiver we can't get a clear signal. Fortunately, the video is usually clear enough, even if we have to have the sound turned down because of static. My advice would be to go up-market on the monitor, and read customer reviews.

J. said...

oh my, glad to hear he is alright, i hope the neuro can find something that works without to much struggle.

Cjengo said...

I cannot stand seizures, they are just horrible.

Katy said...

That is disturbing.

We're switching over to Keppra and our doc says that there's a lot of wiggle room in dosing--maybe Connor just needs a little more?

xraevision said...

Oh Jess, what a troubling experience. I'm thinking of you guys and sending lots of love.

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