Friday, December 30, 2011

more meds

Ben had another 2 1/2 minute tonic clonic seizure during his nap, but at this very moment I've only noticed a few drops in the past hour or so.  That is an improvement.
We hit a spot a while ago where if he'd have a tonic clonic seizure first thing in the morning, then he wouldn't have any drops or myos for the rest of the day.  Maybe that tonic clonic during his nap got some of them out of him.  I'm sure that's not how it works.  There really is no rhyme or reason to any of it.

We got in touch with the doctor and his depakote level today was 78.5!  I guess that's kinda good and bad.  Good that his level is not dropping and increased from the time we left the hospital.  But bad because if the level is above 50, it should be working.  But at least we still have room to go up - it can be as high as 100.  We will increase the depakote and we are also going to add clonazapam back in.

So here's his current daily regimen:

Morning:
250mg depakote
3.75mg tranxene
125mg phosphate
10mg clobazam
.25mg clonazapam
1/2 centrum multivitamin tablet

Noon:
250mg depakote
10mg clobazam
.25mg clonazapam

Bedtime:
250mg depakote
3.75mg tranxene
125mg phosphate
20mg clobazam
.25mg clonazapam
1 calcium vitamin
2 Vitamin D drops

We finally had to break down and buy a pill scheduler box to keep it all straight. 

I'm concerned about the amount of meds we are having to use in order to get seizure control.  There are so many potential side effects from all of these meds.  It's too much for one little body.

But if we can get the seizures under control, then that is what we ultimately need to do. 

Thank you for praying!

We have seen pictures of people sporting their 'Team Ben' gear, watched an adorable video of my friends' daughter doing back flips for Ben, and had a special visitor with an advent gift for Ben.  He has loved all of it! 

Thank you for being such a source of encouragement.  We are hoping with the med changes, we can have a great day tomorrow!

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