Wednesday, July 18, 2012


I've been  meaning to give an update on Tuba's seizures. In April he had an EEG. His last EEG was about 8 years ago! Whoa. I couldn't believe that much time had passed. When the Dr. ordered a new EEG I was not excited. In the past every time he had one we learned new information and none of it was good news. Also, when he was tiny we used to have to do what is called a "sleep deprived" study. This means me had to get Tuba up at 4:00 a.m. and keep him awake until the EEG at around 9:00 or 10:00 a.m. This meant I had to have my MIL ride in the back seat with Tuba and keep him from falling asleep. It was awful! He would be so tired and CRABBY! Not to mention that I was also sleep deprived. Then we'd have to try and get him to hold still and fall asleep for the EEG...with a bunch of electrodes glued all over his head. I would tickle his face and sing to him for HOURS to make this happen. It was always a VERY long day.

I was relieved to find out we no longer had to bring him in sleep deprived. Yeah! That was the first piece of good news. I was worried that Tuba wouldn't tolerate the gluing to his head. But, he surprised me by holding very still and turning on all the charm for the technician. He was an angel! Yeah! More good news.

Now, the REALLY good news! The results of Tuba's EEG showed: Abnormal focal discharge with slowing on the left back side. Now, this might not seem like good news. But, the right side had normal rhythm. The very good news is that 8 years ago his EEG showed abnormal on both sides. Overall his EEG is MUCH improved. Not only on the right side but the slowing on the left side is less than it used to be! So...YIPEE!! I'm so happy. They went on to say that he may never have a normal EEG but that it could continue to improve over the years. Glory!

As for seizure activity we see about 1-2 very small ones a week. This is such good news. After years of horrible (100+ a day huge seizures) lack of control. I pray (pray with me too) that he continues to have less and less and that his brain will continue to heal.


  1. I can see the changes in him every year...more language skills, more social awareness (yes, he is starting to act like a teen-age) and more appreciate of things like music and family and consequences of behavior. Thanks for the up-date.

  2. I agree with Sue. Tuba has made such tremendous strides and growth in the last few years with the addition of his brothers and sister to the family. He can be a stinker but he will always be our angel. I love your mother's heart and it always shines through your posts on all of your children. Love you!

  3. We had to do a sleep deprived EEG on my then 1 1/2 year old. Talk about torture on a momma! Fortunately, results were good for us as well! But that was not a very fun appointment!



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