July 21st was a normal day, as were the days of summer before. Everything was in its 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....the seizure ended up being over 20 minutes
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, before we called for help, and taken by ambulance again. Stayed at Children's Dallas for a week. Upping meds, changing meds and mixing meds.
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 Children's 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
This is the introduction to Jake's blog which we started in the fall of 2008.
Since this was written, Jake has gone from "just 5-30" seizures a day to 100-200 seizures a day. Needless to say our lives have changed forever. He has suffered brain damage, that even the doctors did not think was possible, many set backs, but, and most importantly, has also jumped many hurdles.
Jake has been seizure free, spontaneously, since Thanksgiving Day 2010. We don't know what we did. Maybe the steroid treatments, which certainly ridded him of the myos and drops, or maybe the B-complex and fish oil we added just days before. We will honestly never know, but for now, at least we are happy to have our baby back. It can happen. Living it, I never thought it was possible. Quite frankly, at times, I was convinced we would bury our baby, well before his time. the helmets, the blood draws, the ER trips, pokes, prods, convulsions and weird looks...we got through it. You can too.
Every child is different. The "cure" is different for each child, for some it may be the keto, others steroids, still others may be successful with meds, while others may always struggle. The process is long, exhausting, and uncertain.
The great news is that even in the three years since Jake's diagnosis, times have changed. Neurologists and society are becoming more aware.
We hate you have to meet us this way, but we are here to help, as we have been there!
Christine ( Jake's mom)