We still see clusters. Decrease/Increase? Not sure. Some days are better...some not so much. One improvement is drop seizures. Whether they were atonics all along, who knows, but whatever they were/are, they are very seldom seen. I'd say confidently 90% of his seizures are infantile spasms and occurring in clusters. The other 10% are coming in singles, and the majority of the time it is VERY much like a spasm. A sharp jerk. Startle looking. Know-it-all nurse told me a couple weeks ago it sounded like atonics (because she said a drop is always an atonic) with generalized features. Honestly, our little conversations got my head spinning so much, I gave up on it for now. I know what I see. I've seen spasms for over a year now. These look very much like spasms. I'd like to think she is clueless to boost my confidence a little. But, then again, I'm not an epilepsy clinic nurse either. So I put it to rest with the notion that maybe more observation will tell. So far, I'm still thinking spasms.
Anyway, we reached our treatable dose on Felbatol (2mls 3x daily) last Tuesday. Today we increased to 2.5mls 3x daily. Still waiting to see where this one takes us.
To seizure freedom I hope!
5 comments:
What a GREAT picture of Austin!
And listen...you may not set appointments and field phone calls at an epilepsy clinic. But hon...you LIVE in one. Day in...day out. YOU know gobs more about your son than some nimwhit nurse. If she wants to help you understand what is going on with Austin...then she needs to come spend at least 48 consecutive hours with you and Austin. Then...her pinkie toe may have touched what your life is like. And then she may have earned the right to share. Emphasis on may.
I'm so po-ed. Is it obvious?
xoxo
...danielle
No boosting your confidence needed...that lady is clueless. Sophie's local NEUROLOGIST actually said something along the line of "it is due to my own ignorance that I did not think Sophie would be a surgical candidate" during our first visit with him post-op. Of course, that gave me the opportunity to EDUCATE HIM on why Sophie was a surgical candidate and hopefully that will open the doors for future kids he sees.
I love the pic of Austin at the bottom of your post!
That smile is such a beautiful sight!
You guys are in my prayers!!
e.
People just don't know. Hell, there wasn't even 100% consensus amongst the three EPILEPTOLOGISTS that saw Bennett during the Wed-Mon stay last week on some things regarding certain aspects of the EEG, medications, and so forth. Not to mention the well-meaning yet VERY green just out of diapers resident who I spent the better part of an hour talking to and teaching him just what IS was all about.
But nurses and receptionists? Fuggedaboudit. They know jack. And that's to be expected, they generally have to focus on the physical most of the time anyway.
Danielle -Yes, it's obvious! That's so sweet of you!!
Elaine -I often wonder that about our neuro! It's doubtful he will ever approach this topic on his own. It's me having to do the approaching. Like you did. I just hope it will get Austin the same outcome as Sophie. I'm so glad you educated him. It will probably do wonders for his future patients.
e. -Miss you girl!
Ken -I'm starting to realize that. It's a difficult balance to respect their education but stand my ground. Still learning. First, I have to gauge how much some of these people actually know. Which now I'm starting to think is very little!
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