He had an appointment with the neurologist last week. It seems that the long EEG showed that the seizures are coming from the Occipital lobe on the left side (back left). This is different than previously thought, because we thought that they were coming from the back of the frontal lobe. The occipital lobe is known to control vision, the frontal lobe controls speech. So, we may expect some right side periphrial vision loss in the future, because as these seizures continue they damage the tissue. But, this may be good news when it comes to speech development in the future.
Another interesting thing is that the neuro said that periphrial vision is only most important when driving, and that he could compensate by turning his head. The doctor made it sound like Lincoln might drive someday! This is a suprise to me, because I had pretty much thought that there was no hope for something that advanced from him.
We started a new medication called Trileptal. This is a med that focuses on focal seizures. But the main side effect is that it can increase Infantile Spasms. Well this is okay if the focal seizures are brought under control, because the Infantile Spasms are triggered by the focal seizures. So the theory is no focal seizures = no Infantile Spams.
We started to taper the Topamax, from 6 pills a day, down to 4 a day. The neuro wanted to completely taper the Topamax to nothing, but that worried me, because the Infantile Spasms were brought under control with the Topamax in mid-April. So after talking with the doctor, we decided to try to taper the Vigabatrin instead, and leave the Topamax at 4 pills a day, unless we noticed some changes.
Well...yesterday I noticed some changes. He started to have seizures that looked like Infantile Spasms again. It is difficult to tell for certain because his focal seizures look like a quick rythmic head nod, and the Infantile Spasms look like a slower rythmed head drop...but they both have varying degrees of severity depending on the episode. So I called the neuro just in case, and we upped to Topamax back to 6 pills a day, we know that he can handle that dosage okay, so it is no big deal even if what I was seeing were not Infantile Spasms. Once we get to our theraputic level of Trileptal we will see if the focal seizures are under control. If not we will try something else.
Today we had our weekly physical therapy appointment and the PT said that he has everything he needs to crawl, he just has to put it together. He has been doing some crawling these past few days, but he is so long that he can stretch out to get much of what he wants without moving too far. The farthest he has crawled is about 3 feet. I have a feeling that he will be crawling much farther before he is 11 months old. **crosses fingers**
We also had our speech evaluation today for speech therapy. Unfortunately he had a seizure half way through, so that made him cranky and out-of-sorts. But, he did pretty well, and showed off the sounds that he has been making recently. She seemed to think that he was doing okay. A little delayed, but not huge at this point in time. She gave us a few pointers and is going to come back in 1 month to see how he is doing.
Anyway, that is about all that is going on for now.
Now for the pictures!
This is one of Linc's favorite games: standing! He tries to stand on his own, but needs some help getting his 28lb 8oz off the floor. Once he is standing and leaning against the couch he can be pretty stable. Of course he fell (but didn't hurt himself) right after I snapped this picture. I am usually and sitting right behind him while he plays like this.










2 comments:
Glad to hear the good news about Linc!! He is such a cutie pie!
I'm sorry you guys are going thru so much uncertainty, but by looking at his pics he just seems like one happy little soul to me! I <3 is hair!!
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