Monday, November 15, 2010

The Elusive Happy Medium (an update on Ellie)

We're almost to the two month mark  in our unexpected journey into epilepsy.  It's been a crazy couple of months and I hope that in the end I can say that I'm a better person for them.    I'm learning first-hand that while her diagnosis of childhood absence epilepsy was probably the best one we could have hoped for in this situation, it still is (and probably will be for several years) an ongoing process to find a happy medium--a place we definitely haven't reached yet. 

The medication she is taking has effectively reduced the seizures from dozens per day to only a couple per day (that we notice), but in the process has sapped her energy and made her grumpy and clingy.  She's already on the lowest dose possible and in an effort to help reduce the negative side effects the neurologist has had us split her 6ml per day into 3 doses, rather than the 2 it had previously been.  For a busy (and somewhat disorganized) mom like me, remembering to dole out medicine 3 times a day is quite a feat, but I am happy to say we haven't missed a dose yet.

With the 3 doses per day we've definitely noticed an improvement in her energy level.  She is not dragging near as much as she had been, which is a relief.  Now, however, she has begun to have headaches which I just realized are another possible side effect of the medicine.  She has also been more irritable and moody.

Her follow-up appointment with the neurologist is in a couple of weeks and unless there is significant improvement in her energy and mood, I'm not sure that we can say that the benefits of this medicine outweigh the negatives.

There are two other medicines out there to treat this kind of seizure, although the one she's on is usually the first line of defense because it supposedly has fewer negative side effects than the others.  We're hoping that with her wiring, that maybe one of the others will prove more successful (or that she will adjust to a happier place sometime soon with her current medication).

I guess I've gotten fairly lucky in that out of our five kids, Ellie is the first one with special needs at school.  She was already one of my most distractible and talkative children, but combine that with her fatigue, irritability, and seizures and I'm sure she is not the teacher's favorite student this year.  It is my hope that once we find our elusive happy medium, that the teacher will see a little glimpse of the smart little sweetheart we sent off to kindergarten this year.   It would almost be funny if it weren't so sad when I go to pick Ellie up early from school almost every day,  looking in the "Student Sign-Out" book and seeing Ellie's name 3 or 4 times on every single page. 

Okay, enough with the negativity.  Tomorrow's post will be much more uplifting and until then here are a few pictures of Ellie modeling her new Medical ID bracelet.  They recommend that anyone who has seizures (of any kind) wear one,  but mainly it is for the medicine she is taking.  Apparently it negatively interacts on a moderate to severe level with almost 500 other medicines, including almost all pain-killers stronger than Children's Motrin or Tylenol and every cough and cold medicine in the universe.  I'm not a big medicine giver anyway, but I still dread the day she gets her first illness this winter knowing that there's no choice but to go without medicine.   

She is quite proud of her new jewelry and will happily show it off to anyone who shows any interest!  She will even tell you why she wears it. 

I thought about switching her bracelet to the non-bandaged side for the pictures, but in the end, I felt like it showed a little glimpse into her personality!  :)

We figured while we were engraving her medical issues on a medical plate anyway, that we may as well add in her allergy to penicillin as well.    Basically, without us saying a word, a doctor now knows at a glance that she has seizures and  can't have a sizable chunk of "normal" medicines.
Good thing Bandaids aren't a problem though! 



Grandpa-Grandma said...

Thanks for the update and report on Ellie's condition. We are proud of both you and her for the wonderful nurturing care you give her. Just a reminder of how blessed we all are to be so relatively healthy. We are indeed blessed!

An appropriate thought for this Thanksgiving season.

Thank you for sharing these sweet pix of Ellie. We love you Ellie Belly!!

annalisa said...

Thanks for the update on Ellie boo! What a cutie pie! I pray for her everyday!

Katie said...

Well I can't speak for her kindergarten teacher, but she is certainly this teacher's favorite. In class on Sunday (before things got, um, rowdy), she told us all about her bracelet, and then flashed it around the room like a diamond engagement ring. It was my favorite Ellie moment to date.

She is in my prayers.

melissa said...

cute cute cute girl! you're all doing marvelously dealing with the perplexities of life.

google analytics