Friday, February 6, 2009

Current Sit-chew-a-tion (Seizure Control)

Looking for the positives of our current situation
  • There are no hyps current on the EEG
  • We seem to have caught it early
  • There has been no regression yet
  • He doesn't seem any worse off, he isn't grumpy or out of sorts
  • We have a good doctor who has treated Daniel for this before with success
  • Our support from family and outside is great
  • His teacher at school has read up on IS and is watching him closely and gives me daily updates.
  • He is still progressing with things he is currently learning, which is awesome. is doing really well with his colors/matching/sorting. Can follow directions and understands everything you tell him.
Here is the current action plan for treatment
  • In our 3rd week of Vigabatrin 500 mg 2x a day
  • Scheduling another 24 hr. VMR within the next 1-2 weeks
  • If VMR from February is better than January we will continue with Vigabatrin
  • If VMR from February is not better we will schedule to start taking 6 wk course of ACTH within the week
  • If ACTH is started we will start preliminary testing/blood work and have a hospital stay for 2 days to make sure he is handling medication OK.
Current Stats
  • 3 1/2 yr old
  • 42" tall (with shoes)
  • 36 lbs
  • cute as a button and loves to cuddle!
  • social butterfly
Current Medications/Side Effects
  • Vigabatrin (anti-seizure) 500 mg twice a day -1/20/09 First two weeks: Sleeping more. Seems to be in a constant state of laziness/drowsiness. Second week of full dose: Mood seems to be much better, not as lazy. Still taking a longer nap.
  • Robinul (drooling) 1mg twice a day - side effect - constipation
  • Prevacid (reflux) 15 mg meltable tablet - one time a day - none
  • Miralax (constipation) one cap a day- side effect - pooping!


Bird said...

Ha ha! Pooping!

Has your doctor mentioned the possibility of trying Prednisone for the seizures instead of ATCH? A fraction of the cost and similar success rates in older children. Also, no shots. Just a suggestion!!!!

I'm glad you're looking on the bright side. Daniel really is doing wonderful.

Ellen said...

Hey. I am glad you are making lists of positives!!! I hope it made you feel better.

Listen, I am NO medical expert, but if he hasn't regressed yet, and he's on meds, doesn't that mean he won't?

Max had a grand mal when he was 1&1/2 that lasted for a good hour, because the ambulance people didn't give him the right medication or enough medication to stop it. We were scared he'd regress. But I swear, he started doing new things right after that seizure. Dave and I used to joke that it shook his brain up in a good way. Black humor gets us through.

Keri said...

Daniel's current stats describes my son to a tee. Seriously, they're the same height and weight and both are 3.5 years old. Couple other things in common it the use of Miralax and Zantac (instead of Prevacid). Just two of the drugs in our small pharmacy. Two totally different kids, but yet so alike.