Saturday, August 01, 2009

Copy of my facebook status from last night: Laurel is getting over one of the scariest experiences ever, Leo had a seizure early this morning and we spent all day in the ER getting tests run to figure out why. We have a few guesses but no real answer yet. He's feeling fine now. I'm not.

The long explanation is; Leo had an early morning seizure right beside me, in my bed. He seized for a short time, maybe 30-45 seconds and then was unresponsive until after we'd called 911 and taken an ambulance ride to the Children's Hospital. The seizure itself was horrible; his lips were blue, his eyes rolled up and the whites of his eyes were grey but the 20-30 minutes of unresponsiveness was worse. I can't explain with words the relief I felt when he "woke up", looked straight at me and said "Mama?"

We spent about 12 hours at the hospital because the seizure was not fever induced so we had to look for other possible explanations. Leo was a champ all day long. Every nurse and technician praised him (and me) for his bravery and great attitude - he had blood tests, an EEG, a CAT scan, and an EKG. The EEG showed some slowing in the frontal lobe and it was this result that warranted the CAT scan.

After all the tests were done a neurologist came down to examine Leo and ask me a million questions. Then a second neurologist (a head honcho type) joined us and he explained what he thought was going on and said that we'd need to do a sleep deprived EEG in the next couple of weeks to try to confirm his suspicions. Leo will also be scheduled for an MRI and that should round out his use of the medical system.

The doctors think that the seizure is a symptom of a syndrome associated with migraines (BECRS). It is benign and typically is outgrown by the age of 15. The chances are high that he'll never have another seizure but if he does have more there are meds that are very effective in treating them. Overall prognosis is great, now that we've seen inside Leo's head we know there are no lesions, or tumors or other frightening possibilities. We did however confirm the size of Leo's head, the neurologist measured it and immediately commented "he has big head." He then measured my head and said, no, it is not from you. Does his father have a big head? I had to call Marc and get him to measure his own head so we could compare. Turns out Leo doesn't have a genetic good reason for the size of his noggin and this is the reason for the upcoming MRI (I think).

So, Leo is acting perfectly fine and normal now. Marc and I are still a bit gun shy. We are staying home from camping at La Minerve with everyone which is a huge disappointment. Hopefully we'll figure out a way to camp and or at least have a campfire soon since the kids are both very disappointed. I'll be waiting for phone calls next week giving me the dates for the upcoming round of testing which means I don't even know if we are going to be able to go to Toronto at all. I'm bummed. I'm glad my boy is going to be fine but I don't like being afraid and I don't like being forced to stay in town during the time I'd intended for "vacation." I'm sure I'll feel differently in another day or two, we'll figure stuff out, we always do :)

4 comments:

*Jess* said...

oh my goodness Laurel! How scary! I cannot imagine what you guys have all been through :( I am so sorry! Give Leo a hug from his APU friends in SC! I hope you guys find answers soon (hug)

earthmama said...

laurel...i'll be thinking a lot about you and your family, mama. lots of hugs and prayers... and keep us posted, please.

Natasha said...

Gosh, how scary! We're also thinking of you...

xoxoxo and big hugs and kisses for all of you

Anonymous said...

we had lousy camping waether sunday, so you didn't miss much. I hope all the test continue to go well, from unfortunate experience the staff at the children's are the best and will explore any and every possibilty. I'll be thinking of you good luck
katja