Sorry so long since an update. It's been kind of hectic the past several days. From OT (occupational therapy) to him getting sick and not to mention the Houston trip...we've been busy...and tired!
I'll start with the most important. Austin had his EEG yesterday. This is the second one so far. He had the first back in May and it was what aided them in making the diagnosis of IS. I'll start with a condensed explanation of what it is and what they look for...
EEG -This test measures the amount and type of electrical activity the infant’s brain is producing. It involves placing little metal discs on the skin of the infant’s head and connecting them to a computer. If the child has infantile spasms, the EEG is usually very different from normal even when the spasms are not happening.
When the EEG shows the most typical features of the infantile spasms, it is said to show hypsarrhythmia. Sometimes the EEG clearly demonstrates that infantile spasms are occurring but does not show the typical features of hypsarrhythmia. It may not matter whether the EEG is said to show hypsarrhythmia. But it does matter that the EEG shows features that suggest the cause of the spasms
is the epilepsy called infantile spasms.
is the epilepsy called infantile spasms.
There were two parts to this EEG. One was the presence of the hypsarrythmia and the other was background activity. It's a little confusing, even after our neurologist explained it over and over again. Unfortunately, I cannot explain in detail about the background activity because I'm still in the process of researching it to getting a better understanding myself. I will just explain how it relates to Austin.
Austin's EEG in May showed the typical characteristics of hypsarrhythmia. Yesterday's, however, showed less consistency, but it's still present. Overall, that's positive...BUT, the fact that it's still there is a concern.
From talking to the neurologist, my understanding about the background activity is that if it's present, it definitely a positive. She said they typically see no background activity in patients with severe developmental delays and mental retardation. What I didn't know was that the EEG in May showed no background activity...which was not a good thing. Fortunately, it is present now, but still a bit slowed. I'm still confused as to why it was not present then but is now. He was dead-on developmentally then...no problems whatsoever. He doesn't have many now, but the spasms have been going on for over 3 months...???? Don't know what to make of that.
Now the REALLY confusing part...Since Austin didn't have a typical spasm that I saw during either EEG, they have no basis for comparison. According to the EEG, there was definitely seizure activity happening, but since they had no prior spasms recorded in either EEG, they could not say definitively whether or not it was the spasm activity occurring or new seizures that have developed. That is probably the most important aspect they were looking for but we have nothing to go on there.
Soooo, the plan is continued monitoring with EEGs and medication. We will be waiting to see if the current dose of Zonegran will work for about another week. Then we will be adding Keppra to the mix. If that fails, I will be pushing for Vigabatrin...that non-FDA approved med that I've mentioned before.
To sum it up...not 100% positive, but I think a definite improvement...better than I expected.
NOW, the cool part...Austin stood up totally independently! No couch, no Mommy, nothing...just Austin on the floor! So cool to see!
His occupational therapist was also impressed with his motor skills. He's just truckin' along! She gave us some great tips on working with him, so I'm really excited to get her back over for more practice!
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