All 4 Jake: update from Cook Children's

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

Wednesday, December 16, 2009

update from Cook Children's

We are ending our second day here at Cook Children's in Fort Worth. The doctors, nurses and staff are simply amazing and really know how to take care of us. No wonder Jake LOVES coming here.

Yesterday Jake was hooked up to the leads for a veeg, video eeg. The purpose was determine if Jake really needed another dose of steroids.

We did the timeline and made a connection to the nocturnal seizures starting back up in September to the time we were given generic Depokote. The math added up and we all had our suspicions that the generic was the reason for the mass return of the beast!

The night after the cluster of seizures on Monday morning, Tuesday. I did not see any seizures for Jake. This was also the first night I started back with the "real Depokote." The neurologist wanted to make sure the switch back would not "solve the nocturnal tc problem." I was very hopeful.

However , last night Jake had 7 tc's. This morning Dr. H reported to us his findings of the veeg that night. They were not at all what I expected. I don't know if they were what anyone expected for that matter!

The eeg was worse than it was when we were released last April after a 10 day hospital stay. Continuous spiking was present almost constantly and Jake's background slowing had not improved either.

This was a shock, because Jake appears SOOOOO much better than where we were last Spring. He has not had a drop or jerk since then. He has not had to wear the helmet and his cognition has improved tremendously!

The neuro compared Jake's brain activity to a tv that has constant static. Almost as if Jake is trying to break through the static constantly, as if walking around in a fog. He was greatly impressed that he functions as high as he does with these readings. I wanted to say "that's right , Jake is our fighter! nothing is going to hold him back!"

Because of the veeg results, we started another round of steroids today. I pray that this is our Christmas miracle and we will be able to See the boy that we love at his FULL potential. Who would ever have known that he is not anywhere near his "a" game. I can't wait for the day that we see him at his best and he is able to "bring it!"

I know he will get there, for this we pray. Until then I will continue to learn and grow every day from watching my little man conquer the many obstacles set before him! He truly is my hero.

The Lord will give strength to His people; the Lord will bless his people with peace. Psalm 29:11

We went down to the atrium today to hear a band play. Jake LOVES bands, so he was mesmerized by the musicians and their art.