Jake's story
July 21st was a normal day, as were the days of summer before. Everything was in it's place. School days were approaching and the family was enjoying the last days by the pool, ignored bedtimes and high popsicle counts.
Then July 22, 2008 came....
Jake had his first seizure. I did not recognize it as such. It was not until he had several more of these "little jerks" and bloody noses that I thought this could be seizure activity. We were scheduled to see a neurologist on August 4th, after going through our pediatrician, however we didn't make it that far. I was awakened August 1st, by Jake in a full seizure (6 minutes long)...he started to turn blue so I called 911....
Here begins our journey......
...we were taken by ambulance to the hospital. Checked in. Released. 3 more grand mal seizures after being released. Checked back in. Sent home 3 days later. Another grand mal, this one lasting a whopping 11 minutes and taken by ambulance again. Stayed at Childrens Dallas for a week. Upping meds, changing meds and mixing meds.
Diagnosis: Epilepsy
Cause: Unknown
We have now found, through some absolutely amazing family and extended family, whom I will NEVER be able to thank enough, the wonderful doctors and nurses at Cook Childrens Hospital in Fort Worth, who are continuing to help us through this. We have had another grand last thursday, and are averaging anywhere from 5-30 seizures (jerks, drops, stares) a day. I was to begin back teaching at Apollo, but am having to put that on hold until the seizures are controlled. Jake is not able to go back to school until he is 30 days seizure free. We are still waiting for that ONE day. Please pray for our family and for little Jake. Although this is not the end of the world, it is a huge hurdle we WILL overcome. Pray for courage for Jake, understanding as parents, good doctors and for the right medicines.
Jake's mom, Christine
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Christine decided yesterday morning, Jake didn't seem any better. Per doctors orders, she returned back to Cook to check in for a couple of days. They are in the process of weaning Jake off of Bansil, which they are all in agreement, MAY be the one causing all of the seizures. His body should be rid of this drug by Monday, and they will have a good idea of what to do next. The VNS device is also going to be turned up from the 12 seconds it is currently set at. As for the meds, Jake will now be on only 2 medicines, which will be a first for him. This is a HUGE step, as Christine has been pretty adamant that she did not want him on so many at one time. It just seems like too much and she is afraid of what the mix of all of them are doing and could do.
If I hear anything, I will post more. Keep the prayers coming, as it is not over yet.
One more thing, Jake's "case" has apparently caught the attention of the Epilepsy Foundation and the Neuro's at Cook Children's. Christine will have to tell more about it, as I only have bits and pieces. Not sure what it all means, but it sounds quite exciting. What a special boy!
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