I know this alertness may only be temporary. There will be new med trials to come...all bound to have their own side effects. But, this possibly temporary phase has given me exactly what I needed. It lights a fire under me again. Because I see now that the Austin I knew is not really gone. He's still in there. Waiting to be saved. And it gives me the strength to keep pushing. And this is just a glimmer of who he really is in there -under the medicine cloud. I don't want just a taste of how he should be. I want all of him back again.
Tuesday, July 28, 2009
The Good, The Bad, and The Cute!
You're all caught up on the good news we received in Houston last Friday. No hyps! Yay!
But, I did mention there was some alarming news we learned too. The bad.
I haven't been able to get into it until now. I didn't want to put a damper on the good.
So, here it is.
Our epilepsy specialist dropped the bomb. The one I've been dreading to hear for about a year now. Ever since I started suspecting that Austin was having atonic seizures instead of just single, isolated myoclonic infantile spasm seizures.
The L word.
It's a seizure disorder too, just like Infantile Spasms/West Syndrome. It has it's own triad of symptoms too. In order for a diagnosis of West Syndrome (what we've been dealing with -I don't usually refer to it as West Syndrome) to be made, the child having the infantile spasm seizures must have the following: the infantile spasms, of course, an EEG pattern of hypsarrythmia, and developmental delay. In order for LGS to be diagnosed, the child must have multiple types of seizures (typically atonics and tonics and usually resistant to AEDs), have a distinct EEG pattern, and cognitive impairment.
All kids with IS are at a higher risk for developing LGS. Kids who have developed different seizures on top of the infantile spasms are at an even higher risk. Those who have had unsuccessful treatment of those seizures over a long period of time...the risk is even higher.
Austin does not have LGS. BUT, our epi feels quite strongly he is headed in that direction. So, while the hyps-free EEG was good, the fear of another disorder around the corner is looming. It has been a fear of mine for a very long time. As soon as I learned of it and learned about it, all I could do was hope and pray that this would not be our fate.
He does not have the EEG pattern, but he is in the highest risk category he can be in at this point. He also does not have tonic type seizures either. But, he does have the atonics. A very bad sign, according to the epi.
Although he did say that LGS is just another name for another disorder and it wouldn't necessarily mean it would be worst case scenario of LGS, it scares the life out of me. Some kids with it fare well. Others. Not so well.
I haven't heard many positive stories about this syndrome. That doesn't help the fear factor. Fact is, I try to avoid looking it up entirely. And I've been that way for months. Fearing if I knew too much, I would realize it's a very possible future for us. Because he meets several of the diagnostic criteria already. My mind doesn't like to go there. Worrying about another disorder before we've even tackled the first. One thing at a time is the only way I can handle this. But, he said it out loud Friday. There's no more pretending I'm ignorant to it.
But, what can I do about it? Nothing really. Hope, pray, and love him through this. Concentrate on today before I know what tomorrow holds. Although my dreams of beating this IS and continuing on with our lives seizure and disorder free get a little fuzzy sometimes. With multiple interruptions now in my mind containing a bold LGS flashing brightly in my line of vision. All the while, constantly trying to push it aside and remind myself TODAY. TODAY. Not tomorrow. A tug of war in the brain so to speak.
So, that's what I'm working on. Today. Today, he is a happy, squealy, lively new child. There is a new light in his eyes. One that should not be dimmed because of my fears. Of what has yet to happen.
And, so, with that...(And to end this on a good note)
I give you...
The past week or so has revealed, little by little, the Austin I remember. It's been months since I've seen this personality of his that, honestly, I almost forgot existed. He's been hiding beneath this hazy cloud of medicine. Slowly, it's lifting. Each day he is being released to me just a little bit more. I can't even begin to imagine what I might see if there were no more seizures stealing their own piece of him.