i hate seizures
that was the best title i could think of. and it's true. and really, i mostly hate watching my daughter have a seizure - something i've had to do waaaaaaaaaay too often in the past two months.
about mid september, about once a day, she'd get really stiff {so stiff that we couldn't move her limbs at all}, her eyes would roll up and she'd just be vacant for about 30-60 seconds. we thought they were seizures, but weren't really sure. we started writing down when it was happening, what she was doing, how long, etc. and then it would happen twice a day. and then, in addition to becoming stiff, she'd also start "pulsing" throughout her entire body. she would have these major, full-body twitches in a very rhythmic movement. and it was scary.
on her worst day, she had seven.
these seizures were wiping her out. she'd often sleep anywhere from 20 minutes to an hour or two after she seized. only to seize again. we were spending our days on the couch, with no energy to do anything else.
after a few weeks, we did get an appointment with a neurologist, whose resident was lucky enough to see leah in action. he ordered an eeg {which deserved its own post} and, after the results of the eeg, prescribed leah an anti-epileptic medication.
but then before we even gave her the medication, she didn't have one single seizure for eight days. followed by one a day for four straight days. ugh. so we started her on keppra with known side effects of irritability and that's about it. and we're crossing our fingers. she's been on the medication for six days now and i've seen two seizures. but none in the last four days.
i'm really hoping this is a phase. i'm really hoping seizures aren't one more thing that has to plague her tiny little body. one more thing that i have to explain to her without having an explanation. in the meantime, i'll hold her close and try to comfort her and pray for the strength to be the strong one.
although i know you are all dying to see video of miss ribbons seizing {we have plenty, i assure you}, i'll instead leave you with a smattering of pictures of our couch, and the pillows, blankets and skinny four year old that have been adorning it as of late. plus one in her new big girl, bovine car seat.
11 comments:
Oh Maren, I'm so sorry that you and Leah are going through this. Seizures are just terrible, and I hope that there will be a treatment that will completely end them with our girls. They are unexplainable, scary, and super frustrating. I hate them, too. Abby has been on Keppra for almost 2 years now. If ever you want to talk, I'm here. I hope Leah has many more seizure-free days. Hugs!
im so so so so sad about this whole thing. so sad. im thinking happy thoughts about the meds working very very well.
Hang in there! What a blessing and an inspiration you are to your sweet daughter and to all of the rest of us. And what a lucky little girl to have those amazingly adorable couch pillows to nap on (Love that one with the big green flowers). One of these days I'll have to come see them in person. We'll be praying for you, too.
sweet, sweet girl. no mommy should have to watch their child struggle like this. just plain unfair. stay strong, as i know you will and give miss leah hugs from her pal emmy.
i love reading your blog updates, Maren, even the ones that make me sad too. . . although, Leah is downright adorable, especially while sleeping. . . and especially while sleeping completely upright in her bovine car seat. here's hoping that the seizures are on their way out. . .
thinking of you.
Oh, Leah. Sending you hugs, little girl! This just makes me so sad. I hope the medication keeps working.
Sweet baby. Sweet sweet baby.
Oh Maren! I'm so sorry you have to go through this! I hope this helps a little- I have 2 children with seizures. I know exactly how it feels to watch your child go through this. It's horrible and every time it happens, I wish it'd all go away. Both of them take Keppra, actually my almost 8 year old has been off of it for almost a year after taking it for 2 years. It worked once we got him on the right dosage. My little girl is still taking hers and it's working. It's always in the back of my mind- will it happen during swim lessons? at school? at a friends house? at church? what if I'm not there? will other kids get scared if they see one? will my kids feel excluded? and on and on. I really think you're amazing, in many many ways, so I know you are the best person for Leah and her true angel here on the Earth. I'll keep you both in my prayers!! Remember what Pres. Uchtdorf reminded us of; we are not forgotten!
I hate that your family is having to go through this. I like to think that her brain is just having growth spurts because of all the awesome stuff she is learning, hockey, leaves, Tangled that is sure a whole lot of good stuff to make the brain stretch. I hope it's done growing and she is better soon. I hated medicating CLaire but it brought her back to us and I know that Leah will be back soon. Big hugs!!!!! Wish I could stop by with milkshakes for you ;-)
her little yellow shorts! I love her little yellow shorts. Love you!
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