{"id":5866,"date":"2011-06-08T11:44:51","date_gmt":"2011-06-08T16:44:51","guid":{"rendered":"http:\/\/www.babypennington.com\/?p=5866"},"modified":"2011-06-08T12:00:47","modified_gmt":"2011-06-08T17:00:47","slug":"mc-eeg-study","status":"publish","type":"post","link":"https:\/\/www.babypennington.com\/?p=5866","title":{"rendered":"MC EEG Study"},"content":{"rendered":"

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12:24 Day 1:\u00a0 “Sooner rather than later…” is what I was told.\u00a0 All I heard was “come now.”\u00a0 I called our neurology NP yesterday to touch base.\u00a0 To let her know that MC had an “off day” and that I was on top of it, noting all thirty-plus of her myoclonic seizures and staring spells and that I’d even thought to take her to our local pediatrician to check for any underlying illness she may have (which sometimes will cause an increase in seizure activity).\u00a0 Sure enough, MC had an ear infection.\u00a0 That coupled with a busy week of summer play and pool time, I just knew the NP would note it in MC’s file and assure me that we’ll get to the bottom of her seizures with the EEG scheduled for July.\u00a0 She asked me to hold for a moment while she chatted with Dr. Turner, our neurologist.<\/p>\n

“How soon can you get here?”\u00a0 I’ve heard those words more than I care to remember and have almost become a pro at minimizing our hospital bags to merely three total.\u00a0 Mel finished a few things at work, we packed the car with our three bags, laptops, iPad, and hit the road.\u00a0 McCanless, thankfully, was already spending lots of time at Mimi’s with her cousins, Molly and Will, and will stay there until we come home.\u00a0 Dr. Turner wanted the EEG sooner rather than later.<\/p>\n

Depakote is not working.\u00a0 It is the “go to” seizure med, and typically works very well for the types of seizures MC has.\u00a0 MC is not typical we are realizing once again.\u00a0 She was put on Depakote after her Fontan in April with hopes of controlling her Epilepsy, but it’s just not working.\u00a0 Her “tics,” or myoclonic seizures, have increased in frequency and she continues to have generalized grand mal seizures.\u00a0 As I’ve said before, neurology is a mad science.\u00a0 It’s a highly educated guessing game and we are currently in the process of trying to figure out the correct seizure med combination and dosage for her.\u00a0 We don’t know why she has them or why they only recently started or if there in a genetic condition that we are missing.\u00a0 We know that she has Epilepsy.\u00a0 We know we need to get her seizures under control.\u00a0 This is where we are.\u00a0 So we are back “home” at MUSC on 7 East.<\/p>\n

We arrived late afternoon yesterday and we were able to get her “hooked up” to her rainbow Rapunzel hair.\u00a0 We have already “caught” several myoclonic seizures on film and EEG, so at least that’s some progress.\u00a0 Still, it’s disheartening to see how many she actually has.\u00a0 It’s more than we thought.\u00a0 We never even knew she had them while she was asleep.\u00a0 She has seizures when we aren’t aware of them.\u00a0 Dr. Turner is determined to do all he can to get them under control.\u00a0 She will be weaned off of Depakote and has already started Keppra by IV.<\/p>\n

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If you’ll notice, MC has been visited by “Junie Bug” her tooth fairy!\u00a0 Junie Bug left a pink note and lots of sparkly money last week after MC tumbled down a flight of stairs losing two of her tiny bottom pearls.\u00a0 (Although they do look like little shark teeth with the roots still long and intact.) Although I missed seeing the tumble, I’m convinced that she had a myoclonic seizure, which resulted in her fall.\u00a0 She’s been falling a lot lately.\u00a0 The seizures that we have been unaware of may be the culprit.<\/p>\n

MC is napping peacefully now after such a late night.\u00a0 We hope to head to the Atruim for a magic show after her requested cheese pizza lunch.\u00a0 (If we can handle carting her IV pole, wireless EEG monitor, and video monitor pole with us-It may be a long afternoon.)<\/p>\n","protected":false},"excerpt":{"rendered":"

12:24 Day 1:\u00a0 “Sooner rather than later…” is what I was told.\u00a0 All I heard was “come now.”\u00a0 I called our neurology NP yesterday to touch base.\u00a0 To let her know that MC had an “off day” and that I was on top of it, noting all thirty-plus of her myoclonic seizures and staring spells […]<\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[],"class_list":["post-5866","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"_links":{"self":[{"href":"https:\/\/www.babypennington.com\/index.php?rest_route=\/wp\/v2\/posts\/5866","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.babypennington.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.babypennington.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.babypennington.com\/index.php?rest_route=\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.babypennington.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=5866"}],"version-history":[{"count":5,"href":"https:\/\/www.babypennington.com\/index.php?rest_route=\/wp\/v2\/posts\/5866\/revisions"}],"predecessor-version":[{"id":5871,"href":"https:\/\/www.babypennington.com\/index.php?rest_route=\/wp\/v2\/posts\/5866\/revisions\/5871"}],"wp:attachment":[{"href":"https:\/\/www.babypennington.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=5866"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.babypennington.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=5866"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.babypennington.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=5866"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}