Thursday, April 29, 2010

Epilepsy Journey - Part 2

The Dr. wanted to do additional testing of the girls that included blood work in preparation for medication later on, chest x-ray, EKG, MRI and 48-hour EEG monitoring. We knocked out some of the testing on Friday while we were there and got an MRI scheduled for Abi for Monday morning. Lizzie has to wait because she had pneumonia in January. After a long, exhausting, emotional day, we got home to find out that Lizzie decided to spike a fever. Back to the pediatrician we went! The verdict, ear infection. Back on meds.

We were hoping for a Dr free, relaxing weekend. We did good on Saturday. Sunday, Abi decided to start coughing and have a runny nose. Off to the pediatrician we went with her. Double ear infection. Just had to one-up her sister. Not sure how this would affect the MRI on Monday morning, we made plans to be there early.
It was decided on Monday morning that the MRI would be postponed. There was too much of a chance of Abi coughing during the exam making it impossible to get could pictures of her brain. I was actually kind of glad to not have to go through with it. I think avoidance was setting in at that point. However, in its place, we now had to have echo-cardiograms done. Also on Monday, we had appointments set-up for the girls to have all of the EEG leads glued back onto their heads so that they could come home for a 48 hour study.

Monday night, we couldn't figure out how we were going to make this at home EEG work. Both girls had these leads attached to their heads that were then wrapped with a long stocking cap and a pack behind them holding the monitor. How were we going to get through two days of this without having to follow the girls constantly carrying this pack. Necessity is the mother of all invention. We were able to figure out a way to attach the packs the girls back using the straps to their booster seats. Yes! This allowed the girls to go to day care on Tuesday and Adam and I to escape to work. It was so nice getting back to something normal, if only for a day. Mentally, we needed the break.
On 2/24, we made the trip back to Children's Hospital for the leads to be removed. The good/bad news was that we did not see any of the attacks while on the monitors. Good because they have not had one since last Wednesday. Bad because we were not able to make a notation on the monitor so that they could correlate the brain waves. Yesterday was the best trip to Children's. No additional testing while there. I feel like it took us longer to find a place to park than it did for us to be in the hospital!

We got the results of the EEG's back and confirmed our fears, epilepsy.  Both girls showed brain spikes, but no actual seizures while on the monitors.  After a lot of illness and insurance issues, we finally got their MRI's in.  Both girls had to be sedated.  The downside, they were at different times!  Adam went with A in the morning and she did great.  I went with L in the afternoon.  She started off great, then started to wake up so she required an extra dose of sedation.  A few days later we got the results we were hoping for.  Both MRI's looked great!  L was absolutely normal.  A's showed some immaturity of fibers, but we are told that could be due to being preemie and she will most likely grow out of it. 

So now, we wait.  The girls take their medicine every day, twice a day.  What an adventure that is!  We do our check-ups every six months.  In the Spring of 2012, we will start weaning the girls off their medicine so long as they have been seizure free.  Once that happens, we watch and see.  There is a chance that the girls could and will grow out of the seizures.  But then there is also a chance the seizures could get worse.  This is our reality.

No comments:

Post a Comment