February 15, 2007

February 15, 2007 | Updates

Well, we went to Samuel’s EEG as planned. We drove to Salt Lake where they proceeded to attach tons of wires to his head with, of course, glue. Samuel was a little upset that they were messing with his head, but we were able to get it all done without any crying, just a lot of wiggling. They then wrapped his head in bandage wrap and tape to keep the leads on his head. Then they told us to get him to fall asleep. Ha! Ha!

They had warned us when we made the appointment to sleep deprive Samuel because they needed him to come to the hospital, fall asleep and then wake back up within half an hour. I literally laughed out loud when they told me that! I explained to them that if this kid has the right notion, he can stay up for days on end. And getting him to fall asleep at the drop of a hat, well, can any parent do that with their 3 year old?! So we did our best and kept Samuel up until 1 am the morning before and then we didn’t let him sleep on the way to the hospital. We also planned the appointment during his regular nap time and fed him as soon as we got there since that seems to help him feel sleepy.

Well, he wasn’t acting sleepy, he was just wiggly. And within about 5 minutes, he had scooted clear down the bed and the leads and wrap and tape were starting to come off. So I went to find Tom (who had gone to the cafeteria) so I could give him Nathan and the nurse sat with Samuel until I got back. And guess what? She got him to sleep within about 10 minutes! I was impressed to say the least!

They let him sleep about 10 minutes and then we woke him up. And guess what? No seizures. The kid ALWAYS has seizures after he wakes up, but not this time. Maybe he wasn’t in a deep enough sleep. I don’t know. We did catch one startle seizure, though. And I about gave the nurse a heart attack trying to startle Samuel to cause a seizure. It was actually pretty funny cause she knew I was going to blow into the room at any second in an attempt to startle Samuel, but when I did, she nearly collapsed and Samuel just looked at me like I was crazy. What a kid!

We didn’t get the results from the EEG until today. The doctor explained that the EEG records electrical charges in the brain and that everyone’s brain works by sending out electrical charges. Samuel’s brain waves all seem to be there. They are, however, a bit slower than you would expect in a child his age. And then there are some eratic charges throughout his brain. Some are centralized in certain locations. Some are more generalized throughout the brain. None of them indicate severe seizures, but they are there and they are eratic and they do indicate that he could be suffering from seizures.

So, the doctor asked what we want to do since his Keppra doesn’t seem to be controlling them. I told him that this may be a fluke thing, but since I have been giving Samuel more flaxseed oil over the last week, his seizures seem to have settled quite a bit. The doctor said that many children with severe seizures are placed on a high fat - low carbohydrate diet that almost always reduces their seizures. So, it very possibly could be helping to give him the flaxseed oil (omega 3 fats). We have been giving him 1 tsp a day, but I want to raise it to 3 tsp and day and we could possibly raise it to 6 tsp a day without causing any bad side effects. I told the doctor we would hold off on any medication changes until we tried more of the flaxseed oil to see how well it helps. So, let’s hope it helps enough and we can avoid any sedating seizure meds.The only other thing we’ve really done lately is gone to the dentist. That was quite the ordeal for Samuel. They had to prop his mouth open and scrape off the tarter from his teeth. He was NOT happy. But his teeth are sparkling white again. I asked the dentist about the overbite Samuel is developing and the one crooked tooth he has in the front of his mouth and he indicated that is caused by all the thrusting forward Samuel does with his tongue. The dentist said that even with normal children this age, he wouldn’t do anything about that and that hopefully, when Samuel’s permanent teeth come in, he will be past his tongue thrusting stage. Let’s hope by then he’s eating and talking, too. Wouldn’t that be great?

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