All 4 Jake: Craziness at the neuro

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

Thursday, May 7, 2009

Craziness at the neuro

We had a neurologist appointment on Tuesday in Fort Worth. A bunch of changes were made and are going to be made in the near future.

As it was close to nurses day, Jake took boxes of cookies to his EMU , Epilepsy Monitoring Unit, nurse and friends. He loved seeing their faces and they squealed in delight at the treats, and to see Jake again.

We then headed back down to Dr. "H's" office and handed out more cookies. Jake loves giving and gets so much joy in being appreciated.

As "Dr. H" came in to take a look at Jake the craziness began!

The doc watched in humor, or horror, as Jake drove the stroller into the chairs, cabinets and tables, emptied every single object in my purse ,ahemm...including personal objects, in the quest for a piece of gum, not once but twice,and tried repeatedly to sanitize Dr. Hernandez's hands to "protect him from Swine flu."

The kicker and ultimate decision making moment, besides the fact that Jake has packed on the Lb's, and his little face looks like a balloon ready to pop, was when Jake kicked off his Crocs and they whizzed by the nuero's face, narrowly missing his head.

This actually produced some laughter from the, always serious, neurologist.

We then decided that because his seizures are not under control, and the weight gain, and obviously his rowdy behavior, we would do a faster wean off the steroids. We then are trying a different drug, Febatrol. So Jake will be back on 3 meds.

We go back in two weeks for a final VNS adjustment, and to reevaluate the "seizure situation."

Some options would be to start a diet at this time. We can not start it yet, because of how the steroids change the "make up" of the body.

With that being said....Jake actually had a really good evening last night and wonderful morning today. Usually when he awakes I beg and plead for him to stay on the carpet, as he has no coordination, loss of balance, and simply can't even hold his head up.

This morning was quite the opposite. We had a great morning, talking , laughing, WALKING, and running with no complications!

I seriously doubt that it could be the new drug already taking effect, but I guess it could be the wean from the steroids? or maybe just a "random good day."

I don't care..I just am so thankful to go to work and not be so stressed worrying what is happening to my baby. t was so awesome to see him laugh, eat, joke and talk with out shaking, drooling, slurring, and falling.

Hopefully the rest of the day transpires to be as phenomenal as this morning.

Jake has baseball practice this evening. he loves it...However I don't know if Daddy is looking forward to the stress of coaching a hyper boy that would rather play in the dirt than catch the ball, all while awaiting seizures, and the stares that come with them.