Saturday, January 16, 2010

Adding up Naomi's seizures




I just ordered this off of Amazon.com.
Right now I use index cards and put tic marks on them to keep track of Naomi's seizures. I don't know why I didn't think of ordering one of these earlier!
Yesterday we saw Naomi's neurologist. I wanted a face to face meeting because her seizures are just going down hill. They're very quick and the neurologist feels they're probably doing no real damage to her brain. It's just that she falls with EVERY one of them. The risk is in her falling and hitting something. Right now we're with her constantly or we have her contained so she can't harm herself. We're pushing the Zonegran. The doctor said if we're going to do it lets get it in there and see if it helps. So instead of waiting 1 week to start her on an evening dose we started that last night. So she's on 25 mg twice a day now. She'll go up to 50 mg in the a.m. and 25 in the p.m. next Friday and then I can wait 4 days or so and add in the final 25 mg dosage at night. 50 mg a.m. and p.m. is our goal dosage.
Also the dietian added 100 calories to Naomi's meals on Friday the 8th and I had Naomi weighed the 7th. She was 15.6 KG then. Yesterday at Cleveland she was just over 16 kg. So Tuxhorn said go back to the 1200 calories a day immediately and look into going even lower.
Tuxhorn also felt like maybe the increase we're seeing is age related. Maybe she's moving into a new phase of her epilepsy. Well, I hope that at the end of this down hill road is a finish line. I don't think that's what she was implying but it's certainly what I hope for!
When you check in at Cleveland Clinic neurology they give you a computer to do a survey about quality of life and so forth. The first question is how many seizures has your child had in the last 4 weeks. So I sat there with my calendar and added them up. The total was 770. Then when we went back the girl said "how many seizures has she had in the last 3 months". I told her what the 4 week total was and I guess she figured something out. Lord have mercy! I am not sitting down and adding all that up. I do not even want to know!

3 comments:

David said...

1st!

best wishes to naomi!

SuzanSayz said...

Oh my gosh! They don't expect much from you do THEY?!?
Thank goodness there is something like that contraption to make it easier.

Lisa Christine said...

770!! Holy Smokers that's a lot!

Poor little Naomi. I hope the zonegran can help reduce that number drastically!