I was finally able to speak to the pediatrician today, and he had read the report the neurologist wrote from the EEG. I found out yesterday that the results were "abnormal" so I was expecting them to tell me it looked like absence seizures. But, I was wrong. There was some "epileptic activity" on the center-left area of his brain, but it does not look like your typical "zone out" absence seizures. So ... it's some other type of seizure? I wasn't really prepared for that.
The next step is to have an MRI (Feb. 4), then see the neurologist (TBA). I've asked to see only Dr. Puri, even if we have to wait longer, and the pediatrician said that would be okay (even though I think he wanted us to see the first available) because they don't seem to be any kind of emergency. They would still like to see a video of one of these episodes, because they want to know if his eye twitches or he smacks his lips or he rolls his fingers or anything like that. I've never seen him do any of that, and he doesn't do it nearly often enough for me to get it on video, which is a good thing.
I guess we're afraid that the fluid in Nate's brain is causing the seizures and he'll need a shunt after all this time. We know that's not the end of the world, but come on, it's brain surgery! No one wants that for their child. I also don't particularly want to put Nate on meds. The thing is, he acts fine (well, for a 3 year old, haha). His only real delays are gross motor, and he's quickly progressing there. Will they get worse? Would he be progressing better if he wasn't having these? Is he really even having seizures?
My mind is all over the place, and I have a lot of questions, but one thing I know for sure--God has his hands on Nate and always has. I often pray that if Nate has any health issues that God will reveal them to me so I can get him help. So even though I'm a bit flustered with unexpected information, I know that whatever happens, he's going to be okay.
But I have told Nate that, after the neurologist, if he is going to add another specialist to our list, he has to drop one from our current list!
7 comments:
Hang in there guys - you are in our prayers!
Hello Colleen~ I just wanted you to know that I am thinking of you guys. My daughter Maddy had her first seizure at age 4 and an abnormal EEG. She was on meds for 2 years and we have been med free for 1 year. If you have questions or need to talk, please let me know. We love Dr. Puri. He is the best and well worth the wait. Sending prayers your way.
Colleen,
I'm sorry for this news. I will be keeping Nate and all of you in my prayers.
Nicole
We will be praying for you over here at my house:)
I can't imagine how you must be feeling right now with the idea of brain surgery. God does have his hands on Nate, and I will be praying for him and asking others to do the same.
Praying girl! When Jonathans shunt failed we were SO scared! But, God used that surgery to heal Jonathans blindness! God's still healing our sons!!!! Looking forward to seeing all HE has in store!
I thought Charity was progressing really well too- and then we got her on the right meds... it took a few months to get the dose just right, and then she was so much more, um, compliant is an okay word, but easy to work with and understanding would be better... like she wasn't constantly in a power struggle because her brain was resetting itself.
It was a big step to go into the med world, and I hate meds as a general rule of thumb, but there are certain instances where it does all work out in the end...
big hugs mama! He's one trooper, that's for sure!
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