So, I've expressed my excitement for recent absence of hypsarrythmia in Austin's latest EEG. It's a truly positive step in the direction we would like to go.
A more organized, hyps-free EEG is exactly what we were hoping to see -although I was not expecting it.
For all of you that read my last entry, I explained that it was a spontaneous run through of the newest developments...not many explanations to go along with it.
So, this is my best attempt.
Hypsarrythmia is a pattern that is characteristic of Infantile Spasms. I'm not 100% sure, but I think that this pattern is ONLY seen in kids with IS. It is a very chaotic and irregular pattern, also described as an electrical storm occurring throughout the brain. All day. Every day. Regardless whether there are seizures occurring. It just takes over. So, you can imagine what this means for our kids' development and so forth while experiencing this type of constant interruption. Another downside to hyps? It makes it extremely difficult to interpret the EEGs themselves. For a seizure focus and so forth. I am no expert, this is about the extent of my knowledge. There is more specific information available on the web, that describes the voltage and whatnot...but it's over my head most of the time anyway. I'm just explaining what I've gathered over time, and how our epi has described it to me. I guess I could include a link to more reliable, precise info. I'll have to find the best source so maybe later...
Some kids do not have this pattern, but most do. Diagnosis is sometimes difficult when it's not present, simply because there are other infantile spasm-like movements that resemble IS. Hyps is usually the identifying factor in making the diagnosis of IS. Austin's very first EEG did not show the full characteristic hypsarrythmia pattern. I believe it was more of a modified hyps pattern. The neuros at the time said that it wasn't what they would normally see, but that it was most likely headed in that direction. The next EEG, three months later, did show it. And there has been no improvement up until now.
Simultaneously with his new emerging personality. And developmental progress. Our epi said it is most likely the combination of the decrease in meds and improved EEG.
Another reason of mine for not exploding with optimism. It is typical for the hyps to start fading around this time. Dr. Chugani told me that during our visit back in March. Which reminds me, I'm debating on whether or not to contact him and let him know that the hyps are gone. He did tell me to let him know, but deep down, I still think it's too soon for Austin to be reevaluated for surgery. Maybe I'll contact him to find out where to go from here -like what other developments need to occur for us to take another serious look into surgical intervention.
So, what does this mean? I still don't know to be honest. Yes, it's good. Very good. But, his seizures are far from gone.
My main question is, what is it that specifically causes the lack of progression in development? Three factors to consider. The constant, chaos in their brains, the seizures themselves, or the underlying cause which triggered the IS disorder to begin with. Maybe some of my more seasoned IS friends can help me with that.
So, while I'm thrilled to not have that in the picture anymore for the moment, I'm still concerned for the future. This does not mean it's the end of the battle. We still could be a long, long way from the end.
But, I will still celebrate the new skills and joy that are now so evident in him, while still keeping a firm hold on my goal. No seizures and a normal EEG.
Then, maybe I can breathe again.
2 comments:
I think your gut reaction is a solid one. Having that one thing gone, which is a big thing I grant you, is a big deal, but it isn't the only deal and you know that. Hyps might be gone, but other things are there, and even non-specific to EEG, MRI, PET and everything else. You just know by the day to day interaction.
So yeah, having them gone is good, but recognizing that your road still has some hills to climb is good too, mentally keep you ready.
Sorry I have been so out of touch. I did know about the hypps being gone, but just couldn't find the time to get over here to write.
First off, congrats. This is a huge step for your Austin.
For my Austin, hypps being gone was step one. Steps 2-10,000 have been therapy, therapy and more therapy. I know, I know, Austin is already doing that, but now that the hypps is gone, the therapists should be able to get through to him better. Seeing all these new signs from him should be very encouraging. It reminds you that he's been there all along, just waiting for the seizures and hypps to give him a break. I truly hope he amazes you ad my Austin has amazed me over the years.
Remember though, it's still a long road. We got my Austin's hypps stopped (for him spasms stopped before hypps) when he was just over 2. He's going to be 7 soon. We are still doing therapy. This isn't to discourage you, but to remind you slow and steady wins the race.
Keep us posted and congrats again!
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