Another Seizure and more questions
As I am starting this journal entry, I am emotionally exhausted due to other recent events even before beginning this little synopsis. I am sure most of you feel like that just by reading a few of these entries!
This past weekend my brother Erik got married in Houston. The kids were the flower girls and ring bearer and so we were involved in several of the wedding weekend events. At the rehearsal dinner on Friday night Henley came over to me and seemed to have a sudden outburst of emotion. I thought she was upset about something so I tried to comfort her until I saw her eyes roll back, her body stiffened and she fell to the floor and began to seize. I immediately fell to the ground with her and called out for my cousin
It took me a while to pull myself together, but Henley recovered much more quickly. Adrian was able to witness what happened and make sure that after it was all over that she was responding normally. We went through the rest of the weekend with no other problems.
Monday morning I called Henley's neurologist and spoke with the nurse. She felt that after the event, we needed to have Henley seen sooner than later. They were able to fit her in for Thursday afternoon.
Thursday morning I woke up with anxiety about the appointment. For some reason I was not in high hopes of things being hunky dory.
We had not seen Dr. Aalbers since the December before Henley's surgery in Jan 2012. As you can imagine, there was a lot to catch up on. We talked about how things with Henley had improved immediately following surgery, her walking was better, her vomiting had ceased as well as some other GI issues. She began speaking more within about 2 weeks and overall she was significantly happier.
Dr. Aalbers went over her MRI's with me and showed me that at her 6 month post-op appointment the MRI showed that she still had a reasonable amount of compression at the base of her skull. Although most of her symptoms had seemed to have been resolved, her seizures have not. She has currently had 9 seizures to date and this year she has had one in March while Adam was in China, one in June and now December. According to our neurologist, that is enough cause for concern. (Really?) He also checked her reflexes and said that her right side should have improved by now, which it does not appear that it has. He watched her run back and forth and it was obvious to both of us that her right leg sticks out and lags behind when she runs which then causes her spine to get out of alignment. This answers the question for the reason she complains of her back hurting frequently. He actually re-aligned her spine while we were there, and she has felt much better today.
Dr. Aalbers felt that we needed to do another overnight EEG to see if this time they might be able to capture a seizure on the monitors. She has had 3 before, so this will be the 4th one of these test. We also discussed doing some more extensive genetic testing which would be utilizing new technology developed within the last year. This test is called Whole Exome Sequencing (WES). It is apparently the end all be all of genetic testing as of today. Although eager to do the testing for the answers that would be helpful, it is also very possible that we will be given information about ourselves and Henley that we are not wanting to hear. For example, if we are genetically pre-disposed to have certain diseases later on in life.
The genetic study that will be done takes between 4-5 months to get the results because they will be testing over 20,000 genes in Henley's, mine and Adam's genome. In addition to the regular testing, they will test specifically for 4 or 5 epilepsy genes. This should be able to answer the question "Are the seizures she is having related to a genetic issue that is making her more prone to seizures?" or "Are these seizures being caused by the pressure in her brain from the Chiari compression at the base of her skull?"
If everything comes back clear of any traces of epilepsy then we will have to discuss another brain surgery for her to relieve the remaining pressure. If it does come back that the seizures are greatly due to an epileptic gene then we may have to discuss medicating her for that.
So there it is...the update. As always we are thankful for the Lord's provision and placing us exactly where we were on Saturday surrounded by family. On a lighter note. I think we should quit traveling as a family.