J a k e

J a k e
at the beach in Destin

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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Tuesday, December 13, 2011

1 down 2 to go

In Mid-November Jake and I went back to Cook Children's for, maybe the most anticipated EEG yet.  The one that tells us whether or not his brain is still being bombarded by seizures.  The one, that once again, reset our lives forever.
As always, Jake was super stoked about going to Cook's and seeing Dr. H.  He was a little annoyed he would not be getting an iv or having blood drawn.  Crazy Kid!  But  his spirits lifted when he saw all the leads (wires) that got to be glued to his head.
Jake was a super trooper getting hooked up with the leads.  Another thing that has never really bothered him.  I think he gets more pleasure from it, than pain, actually. He and the tech were cutting up and really laughing hard, until Jake said  "I better stop, or I'll pee my pants!":-)

The intention was to start the eeg at 8am, have an 8 hour eeg and then meet with Dr. H at 4:00pm to go over the results.  Jake was hooked up almost 2 hours when the tech left and grabbed Dr. H.  As he walked in, my stomach was in knots and I quite possibly could have thrown up! The anticipation of what he was goingto say was more than I could handle.

The last time a tech left after only a little bit of watching the eeg, and went and got the Dr., it was not good news.  Jake was seizing more than her wasn't and had to be admitted ASAP.

I completely had flashbacks as they both re-entered the room on this day.

However, as life has it's valleys, it most certainly has it's peaks as well.

Jake's EEG was so clear, they thought he was ready to go home!
As, this also meant a med wean...one that I was VERY much excited for, it also meant that "security blanket" for me was going to be taken away.

I voiced my concerns, so  we all agreed to let him sleep while running the eeg as well, as that is when most of his last lingering seizures were happening.

So he slept.....

and I watched....
After a 2-3 hour nap, the EEG was still clear!
I almost couldn't believe it!

Dr, h instructed me that we were to wean what little Depakote he was on.  The wean should been done instantly and been more of a STOP than wean.  I was too chicken though, and insisted on weaning anyway.:)

The wean has been done now for about 3 weeks.
It is completely amazing the transformation we have seen in Jake!
He appears so much clearer. 
His hands don't tremble, he doesnt drool near as much, his handwriting and desire to do school work has done a 180, and he can carry on a "real", clear ,vivid conversation.  His whole thought processing is just incredible.

I can not even imagine the drug induced fog he has been living in for 3 years straight.  His little brain having to metabolize all these drugs while also fighting the electricity that are seizures is just completely baffling to me.

However, We are not done yet.
He still has 2 more to go.

Jake goes back Friday for another 8 hour eeg.  If that one is still clear, the Felbatol is the next to go.

Yikes!

I can't believe the wish we have been wishing  , for 3 years, may actually be coming true.

Please keep Sir Jake in your prayers, as he battles this damn beast.


Psalm 18:32-34 the God who equipped me with strength and made my way blameless. He made my feet like the feet of a deer and set me secure on the heights. He trains my hands for war, so that my arms can bend a bow of bronze.

3 comments:

Fawn said...

Oh, this post makes me soooo happy, Christine!! Jade's last EEG was also clear as a bell (with just a bit of background slowing, so not completely normal, but the neuro was ecstatic). I am so thankful for Jade's continued progress and for Jake's. Sending you all lots of good energy and love.

Jamie said...

So glad to hear! I'll be praying...

Ben said...

we are praying for you as well! our little guy with doose just started the keto diet a month ago and we are seizure free! we go back to the cooks tomorrow to see what our long term plans are. keep posting! i love hearing good news. www.ourjourneywithdoose.blogspot.com