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.

Epilepsy Journey - Part 1

One of the reasons that I decided to start writing this blog was to put our epilepsy journey out there.  I don't know how many followers we will have, but if I can show just one person what we went through and help them, then I am happy.  Our girls have been on medication for five months now and so far so good.  I am always so hesitant to say that.  I am afraid that they will wake up in the morning and have another drop attack.  I feel like I am on pins and needles all of the time.  I have to remind myself "it is just epilepsy."

I know that this is going to be a long post, that is why it has a home of it's own and comes in two parts.  Here is part one of our story:

On the night of 2/12, I noticed that Lizzie was doing something weird with her head. I had noticed it in the past, but for some reason, it really caught my attention that night. So much so, I grabbed the camera and started recording. It was then that we really started to realize that this did not appear to be voluntary movements. So, what is she doing? While she was sitting there playing with a book, her head would snap back, and then her whole body would lunge forward. This happened a few times over the course of a minute or so. Then it happened again the next night. We started to notice that she only did it when she was sitting down, and primarily when she was tired. She never lost consciousness and it did not seem to bother her. Each individual jackknife move would last no more than 1-2 seconds. Over the course of the weekend, I was able to get a couple more videos of her activities. Thank goodness.

Since Monday was a holiday, I had to wait until Tuesday to call the pediatrician. Waiting was very painful and stressful for both Adam and I. I started thinking about the movements and realized that I had seen Abi do the same thing, although not as dramatic. Thankfully we were able to get an appointment with the pediatrician the next day, 2/17. In the meantime, you can't resist taking powers of Google for a test drive. Oh man, lesson learned. Don't ever use Google to look things like this us unless you are prepared for the possibilities. I was not.

We got into the pedi and showed her the video first thing. She did an exam on Lizzie and felt that overall, she was in great health and had a good neurological exam. However, based on the video she captured, she could not rule out the possibility of seizures. The word that I knew existed, but dreaded to hear. From this moment on, life seemed to go fast forward and slow motion at the same time. Immediately, one of the nurses got onto the phone with Children's Hospital in Boston to set-up an appointment with the Neurology and Epilepsy department. We were anticipating having to wait a little while to get into to see them, which we were dreading. I am not patient. To our surprise, literally two hours after seeing the pediatrician, we had an EEG set-up for the next day and an appointment with the neurologist for Friday morning. Wow!

Thursday afternoon we made our trek into Boston. This was such an adventure. The girls had to be sleep deprived for the test. You try keeping two 11-month olds awake in a 45 minute car ride. Especially when the appointments don't start until 12:30 pm and they got up at 6:30 am. I was pulling out all of the stops and still lost them for about 10 minutes each. Oh-well.

I was elected to be the one to accompany the girls, one at a time, into the testing room. Lizzie was up first. Good thing, poor girl was exhausted. I was tasked with holding her down while the tech glued 28 little leads to her head. Once the leads were on, I climbed into bed with her and held her while she got to sleep. After about 30 minutes, the test is over, the leads are removed and we are free. Same process occurred with Abi. Only difference, Abi fell asleep while the tech was putting the leads on rather than scream the entire time like Lizzie. Thursday night, we were all exhausted and spent.

Friday morning came very early. We had to be into Boston to meet with the Dr. at 7:00 am. They were overbooking for us, so we had to take what we could get. I was so scared and nervous, as was Adam. We went over the girls short life history with the Dr. and each girl got an exam. Then came the results of the EEG. Lizzie, the one we were really worried about, had one spike on her test. The Dr. was going to view her test as normal. Abi, however, had more spikes which are abnormal. My heart sank. What does all of that mean? Are my babies ok? Based on the video and the test result, the Dr. is 70% sure the girls are having seizures. More specifically, drop attacks. I tried to listen, but my mind was clouded at this point.  

Part 2 to follow.

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Wednesday, April 28, 2010

I'm officially a follower....

Yup, I did it.  I took the leap.  I decided to start a blog.  Chances are, no one outside of my little world is going to read this or care about it.  But hey, that's ok.  This is going to give me a place to actually write things about the girls as they grow up and go through our epilepsy journey.  The reality is, I bought baby books but have not done a thing with them.  I have good intentions, just no time or ambition.  Lazy!