zonegran

A couple of weeks ago Charlie Claire had a couple out of the ordinary seizures.  

The same kind of seizures she always has but normally she only has them when she wakes up from sleeping and the two we saw were not at that time.  It's not uncommon when C is coming down with something for her to have one of these random seizures and then get sick within 24 hours.  We talked to the neuros office and they wanted to run labs to check CBCs, platelets, medication level, etc.  It has been a little while since Charlie Claire has had a lab draw but she actually handled it really well.  

Jackson got to enjoy some yummy ice cream with Ms. Kristen while C and I went to CHKD. 

We got the labs back for all the blood work, except C's zonegran level, the day before Thanksgiving and all looked good.  Finally on Monday the zonegran level got sent to VCU and it's low.  Normal level is between 10-40 with the neuro wanting to see the level between 20-30, Charlie Claire's level is 5.  Naturally we thought that VCU would be increasing C's dose of zonegran however, since we haven't noticed any other seizures aside from the ones that sent us for the blood work to begin with Dr. M isn't rushing to increase the meds.  Since C seems to be doing extremely well on such a low dose Dr. M doesn't want to increase her meds unless it is completely necessary to do so.  

While we are all on the same page with keeping Charlie on the least amount of meds possible it is slightly unsettling to me to take the "wait and see" approach.  However, C's whole life has sort of taken the "wait and see" approach so I should be used to it by now! :)