Abigail had a slightly better day. She was not as cranky, but she was also not her usual gleeful self. As of this moment we have only seen one seizure today. That being said, we are seeing a well developed range of emotions. She has always played the happy or sad card fairly well. Now she has developed several new cards to add to the mix and throws them at you like a 10 year boy at a Pokemon convention.Lets see....we have:
I am so pissed I am going throw everything within reach card.
I am going to cry (actual tears no less) at the drop of a hat card.
I am going to giggle, laugh maniacally, and scream a high pitched burst all in the space of 3 seconds card.
I am going to be playing quietly listening to calm music one second and then lunge at my sister and head lock her in a hug while screaming KISS HUG...KISS HUG...KISS HUG!!!!!!!!!!! card.
I compare that last one to Inspector Clouseau's (original pink panther movies) man servants random kung fu attacks.
Fortunately we are used to emotional side effects for Abigail when it comes to medications, since we are using food as a medication we are not surprised to see side effects.
Abigail has tried many different Anti Epilepsy medications. ACTH (cushingoid effects made her look like the Michelin Man's love child), Topamax (No effect), Zonegran (Horrendous emotional instability..no effect on the epilepsy), Lamictil (No effect), Vigabatrin, stopped the seizures for about 9 months, we took her off the meds and they came back. We put her back on Vigabatrin and the seizures dropped in frequency and intensity but have never fully gone away again. I am sure there are more meds but I can remember them all right now.
I am sure Abigail is going to balance out as her brain and body adjust to the new chemistry her body is producing. Even when she is cranky these days she is communicating her needs verbally which is more than she has done before.
I thought you all might want a picture to make you go...awe....
1 comment:
LOL, I love the random attacks of ferocious affection!
I am curious about why the Vigabatrin was weaned after 9 months. Were there side effects? We were told that once we found a drug that worked for Jade (which never happened, of course) she'd have to be on it for at least 2 years.
I can't wait until we can start weaning some of the drugs for Jade. We think the Keppra actually made her drop seizures worse. I just hope that if the neuro agrees to the wean that her brain hasn't "learned" the drops and keep doing them. Not that we'll ever know if it was really the Keppra or just the nasty progression of the epilepsy...
Is Abigail still on Vigabatrin now?
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