Thursday, July 22, 2010

THE LONG ROAD

It's been several months since Emmie started having seizures. She has been on 2 medicatons....Zonisamide & Clonazepam. Emmie started out having 10-15 seizures/day, then she dropped down to 6-7/day. After several adjustments, increasing the dosage & changing the times the meds were administered, we finally hit 0!!!! I think the angels in heaven sang for a few days. :)

After we reached the "sweet spot" (that's what I call it), the neurologist wanted to leave the meds & the dosage right at that point. Emmie's med schedule was as follows:
  • 6:00am...2 wafers Clonazepam..these wafters dissolve in Emmie's mouth
  • 6:30am...1 capsule Zonisamide...the capsule is opened & poured into a juice bottle
  • 9:30am...1/2 Clonazepam wafer
  • 2:00pm...1/2 Clonazepam wafer
  • 5:00pm...2 capsules Zonisamide
Whew! That is 5 times/day!! How do I remember all of that, you might ask? Well, it's become routine & I have a very good memory. Plus, when it comes to my kids, it's hard to forget something so important. The hardest thing is remembering to bring the medication with us when we leave the house. I can't tell you how many times we have been several miles away from the house & I have to turn around & come back to get the meds...frustrating!!

About a week ago, the angels stopped singing. Emmie started having seizures again...4/5 times/day. The dr. said this could happen as the Clonazepam can have a "honeymoon" period. It's different for every child, so it's hard to say how long that period will last or with some children when they hit the "sweet spot", that's all they need. That's the hardest part...not knowing. I want to know how this will all turn out. When will the seizures stop? Will Emmie need meds forever? Will she outgrow the seizures? Unfortunately, it doesn't work that way. There is no way of knowing. We just have to let it play out & roll with it....the story of my life these days!!

I spoke with the dr. a few days ago & he increased the Zonisamide. Now, at 6:30am, Emmie gets 1 1/2 capsules. Every time we do an increase, I get sick to my stomach. I hate putting all this medication into her little body. I know it's helping her, but it's not easy for me. We just started the increase today. I pray it will get the seizures under control again.

Emmie has a follow up appointment with the neurologist in a few weeks. Aidan is at school & Emmie is napping. Time to get a few things done while I can.









1 comment:

  1. Oh how I hope these seizures will make themselves scarce...really really soon!

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