More improvements with ABM

So, one week after Melanie's 80-minute seizure, she was still not quite herself. She was not talking very much, and her mood was rather deflated. She was still sort of weak, wobbley and tremory...  Then Nick took her for her next ABM lesson.  When she came back in the house from her 30-minute lesson, I instantly saw our usual happy, chatty Melanie.  No doubt it was the ABM that caused that instantaneous change.  For the rest of the week, she was chatting up a storm non-stop, in a great mood and moving a little stronger.

She's still healthy and doing well. Nothing much to report, which is always nice. :-)

Last week during spring break, we had an opportunity to travel a couple hours north to a book festival, where we heard Anat Baniel give a book talk on her new book about ABM for special needs children.  We met her, had her sign our two books, and got a picture with her.  Melanie was low on sleep and beyond her melting point, so in the picture she looks rather bleary. James was tired of being there, so his face shows exactly how he felt about being there so long... 

I'm so thankful we had that experience, and her new book is fantastic!  I highly recommend it!   http://www.amazon.com/Kids-Beyond-Limits-Awakening-Transforming/dp/0399537368/ref=sr_1_1?ie=UTF8&qid=1334859870&sr=8-1

Looking Good

We started amoxicillin last night, and she's still not really showing symptoms. Mom can detect some pain somewhere in the head, and she has been leaning to her right a lot (right ear is infected).  But so far it looks like we may be on the road to curbing this infection before it gets a footing. She has not had a fever today.
Still extremely wobbly and drunk on diastat. It'll take at least another day or so to get out of her system.

I should hear from the neurologist tomorrow, when she gets back from vacation. We'll have to discuss the keppra taper and finding a new rescue med.

Back in ER

(Warning: lots of details... for the sake of our family who I'm sure long to be thoroughly updated.)

This was our first time back in the ER since sometime in 2010, I believe.

Melanie gave a few clues during the day that something was brewing. She asked for a nap 2 hours earlier than usual and then slept for about 3.5 hours. She woke up a bit cranky and 'off.'  And for a few days she's had an itchy nose and ouchy sneezes, and Mom has noticed a slight decline in overall wellness.  So I wasn't too shocked when she had a seizure yesterday.

I opened the back door to go pick up James from school, and Melanie just stood there, looking at the ground. When I nudged her forward, her legs buckled and I caught her. I had a friend bring James home, as I attended to Melanie on the dining room floor. Convulsions lasted about 20 minutes. This was our first time using the two small-dose "boosters" of diastat, her rescue med.  Well, it's rather apparent to me now that diastat likely does nothing to stop her seizures. I've suspected it all along, but now I'm sure, after she had 5mg more than her normal 7.5mg, and this was the longest one she's had since our scare two years ago, when a nearly lethal combination of drugs in the ER landed her in the PICU with a breathing tube.  We might have been facing a similar situation this time, if we hadn't waited an hour before taking her in. By the time we got to our local ER and they had her hooked up, she had ambiguously slipped into her post-ictal state of occasional voluntary movements.

I'd guess that the entire seizure was roughly 80 minutes, the last hour of which was NCSE (non-convulsive status epilepticus): in that stage she is limp, unconscious, jaw tightly fixed, and her eyes "dance," usually with dilated pupils. Unfortunatly, her post-ictal (post seizure) state looks very similar to that, but with slight voluntary movements and her eyes, though vacant, aren't as 'dancey' and pupils are reactive. Even still, we're still playing the guessing game nearly every time-- even after more than 3 years experience.

We had a very good and understanding ER doctor. It was clear to him right away that we knew what we were doing, and I made a comment early on which I could see in his face clearly communicated that we won't be "told" what to do if we know it's not best for Melanie. Call it a quick "flash of the Tiger Mom claw."  I had to flash it again when 3 different NICU nurses tried unsuccessfully for too long to find a vein to draw blood, and at the same time her other nurses were messing with her bad IV. One nurse went out to ask the doc what he wanted them to do, and I spoke up to say that she needs to be left alone completely. If she doesn't get a chance to sleep and then wake on her own, she'll never shake it off.  Well, what do you know, it worked. After 20 min or so of uninterrupted sleep, she stirred on her own for the first time and drank some water. This went on a bit longer, until the doc came in and asked if we'd like to go home.  He never tried to play any games with us, which is SO refreshing.

We got out of the ER in 3.5 hours, which is record time for us (probably for most people). The doctor sent us home with a script for amoxicillin for the ear infection he detected. We haven't filled it yet. Nick is more anxious to start it right away than I am. I want to spare her the regression and loss of two weeks of her life, but I hate to give her yet ANOTHER round of antibiotics and risk long-term harm... We'll make the decision today.

We got the green light on Friday to start tapering Melanie's depakote. I'm so thankful that I have providentially forgotten, for three days, to lower her morning dose. If I had, I would definitely be wondering now if that were the reason for this extra-long seizure.  As it is, we are wondering if our keppra taper had anything to do with it; but she has been at her current dose for a week and a half now, so I'm not too sure that has much to do with it. I'll be in contact with our neurologist about it.

Today so far, she woke up cheery yet extremely wobbley. The diastat stays in her system at least 24 hours, so she'll be druggy for the rest of the day at least- especially with the extra 5mg she got. She watched Pooh (of course) and munched some pretzels and drank half a Pediasure. She's sleeping again now, and won't be as cheery the rest of the day. Tomorrow is when the real crankies will come, and the sickies will show up.

James was with us during our whole ER ordeal. He and Dad left for a while to get dinner, change and retrieve things from home. James later told me that he had prayed two times for Melanie, on his own. I praised him for his tender heart and for turning to God on behalf of his beloved sister.  Then, as we were packing up to leave the ER, I turned around to see him standing at the foot of her bed with his eyes squeezed closed, praying for her again. That sweet boy has a way of melting his mama's heart.