Doose Syndrome

Myoclonic-Astatic Epilepsy (MAE) or Doose Syndrome is a rare form of childhood epilepsy that contains many seizure types and is difficult to control. Our journey started in January 2012 and this blog is to let family and friends follow us on our journey. I hope this blog also helps educate people about epilepsy and Doose Syndrome.

Michelle

Wednesday, April 11, 2012

MRI and 1st EEG

Joshua's MRI was on Friday, January 27th (just two days after we met with his pediatrician).  We were VERY lucky that we got in so quickly.  Although Joshua had never had an MRI both Chip and I had been through this before with Cole when he was a baby so we had a good idea on what to expect.  Joshua had to be sedated for the MRI because he could never stay still for 30-40 minutes (heck, most adults can't either!).  The nurse could not get his IV in so the Dr. had to do it, but as soon as the meds were put into his IV he was asleep within seconds.  The MRI procedure itself was routine and he came out of the anesthesia just fine.  Dr. Hendrie is amazing as she called us that evening while we were eating dinner to tell us that his MRI was clear and he did not have a brain tumor!  Phew!  It was one of the biggest reliefs of my life - now it was onto the EEG.

Joshua turned 4 on Sunday, January 29th.

The EEG was the following Monday - January 30th.  In order to get the best reading on an EEG you need to sleep deprive the patients as seizure activity increases when a person is tired.  On adults they have the person stay awake the entire night before and come in the morning without having slept all night.  That is too difficult to do on a young child so they have you keep the child up late past their normal bed time and wake them up early so they are extremely tired.  We kept Joshua up until 10:30 PM on Sunday night (which was his birthday) and woke him up at 5:00 AM Monday morning.  We then had the difficult task of keeping him awake until 10:30 when we had our appt. (including the 30 minute drive in the car), but we were sucessful!  Joshua was not at all receptive to the idea of having electrodes hooked up to his head so he fought with the technician and us the entire time she was getting him hooked up.  I didn't think he would ever calm down and fall asleep, but he did eventually and we were able to get the EEG completed.  I witnessed what I thought was about 1-3 seizures during the EEG, but I was not sure and so we waited for the results.

No comments:

Post a Comment