Tuesday, August 28, 2007

one med, two meds, red med, yellow med...

Okay, that title was a stretch, but hopefully you got the reference. ;-) Evelyn hasn't had a blue med (yet; and yes, she's had a red one), so we had to substitute in "yellow".

Just a brief update, because we realized we've been quite remiss! I can't believe it's been over 3 weeks - almost 4 - since we got out of the hospital. Most of that time has been dabbling with seizure medications, still trying to get Evelyn's seizures under control, to one degree or another.

It's been a bit of a trying time, to be perfectly honest. Very up-and-down. As noted earlier, Evelyn was discharged on a regimen of Topamax and Depakene, and Klonopin for acute seizing. Topamax brings with it the unfortunate side-effect of a loss of appetite, so Evelyn's been fed largely by NG-tube ever since. After a few weeks on that, it was evident that it wasn't really doing much, so Dr. Bernes began ramping down the Topamax, still keeping the Depakene, just to have something there. We then began ramping up Keppra, still working our way through the more "benign" medicines first (insofar as side effects go). After a while on that, Evelyn's seizures were still largely unaffected (50-60/day; 10-30s each). So, we began taking down the Depakene and ramping up Zonegran. Which is pretty much where we are today.

Generally-speaking, we've been very optimistic in the early days of a new medication, but then as we see no improvement, get kind of down, down, down.... so on and so forth. Evelyn's very much subdued, compared to your average almost-4-month-old(!), between some of the seizures and the drugs. Keppra and Zonegran are both (supposed to be) non-sedative, but Klonopin is a definite sedative. Thus, we try quite hard to be judicious with the Klonopin, but if Evie starts on a sustained (~10 minutes) string of seizures approaching 1 per minute (as opposed to 1 per 5 minutes), we usually administer it.

But, that's about the size if it - plugging away, trying to find what (if anything) will give her a little more seizure control. We're still feeding through the NG-tube, but Evelyn's showing a little more interest in the bottle, so we're still hopeful we can be done with that sometime or another. Again, absolute seizure control is not the goal - seizures will very likely be a part of Evelyn's life ad infinitum - but just some level of control of them so we can do other things, like play. :-)

Anyway, we're hanging in there, and we'll keep at it until we get there. Thanks again for all the thoughts, prayers & considerations - they really, really, really help. :-)

2 comments:

Kathy Webber said...

Hi Sunshine,

As I have been up watching the eclipse this morning,(from my bed since the windows face the West) the Holy Spirit put you on my heart to pray for all of you so I got up to turn on this wonderful communication tool to say Good Morning and may God continue to give you strength and courage as you continue carin for one of His little angels. I know what it is like to fight for the life of your child and my heart aches for you but be encouraged each day with hope. Your updates are fantastic and we are all so much better because of all of you. Thank you for carin enough to keep us informed so we can pray effectively.

We love you guys very much and we hope to see you in middle TN someday so we can hug all of you.

Blessings to your from our Lord Jesus Christ as He is the author and finisher of our faith. Rest in His love and be confident that He will not give you more than you can handle. These are promises to hold onto thru this journey. He will never leave you or forsake you and He will complete the what He has started in each and every one of your lives, and ours too as we journey in prayer with you.

Much love to all,
"Mama" Webber

FRITZ said...
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