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, September 18, 2012

They're back!

I can not find the words tonight, and have not for a long time, hence the no posting.

I am already feeling a "sigh of relief" just starting this post, though.  The venting "out loud" is a great therapy!:-)

Long story short.....back in June i suspected Jake was having seizures again.  My suspucions started on the top of a water slide @ our gym.  Jake and i were taunting each other about the race we were about to have.  suddenly, but slowly he was gone.  His eyes rolled back, and he was gone.  it was only for a matter of seconds, but i knew "that look."
  I immediately raced Jake down that slide and called Brandy in tears.  We both kinda blew it off, but deep down I think we both knew a mommas heart never lies.  She and I both knew...

I kind of watched , or stared , or obsessed over him the beginning of the summer.  my gut told me something wasn't right.  His behavior started getting very erratic, his adhd was out of control, his emotions (which he has never shown), were heartbreaking.

Finally one morning, as he and I drank coffee and watched scooby doo , the only ones awake, on a beautiful summer dawn, i saw it.  Not only did i see it, he definitely felt it.  he told me he was hot, his head hurt and he felt "irritated."  the next thing i knew our boy was gone....the look on his face was the look i had seen too many times before.  i could see in his eyes him asking for my help.  he was pleading to me to unleash the beast. 

I sat, I could not do anything.  I was lost.

how the hell is this happening again?

I called the dr. 

He didn't believe me.  We got an egg in early June it showed nothing, except crazy mother syndrome.

long story short...it kept happening, I finally caught a good one on video, we went for 2 more eegs, and low and behold Jake is having seizures.


so we are back at adding meds, adjusting meds and having a 7 year old sleep with us.

seizures suck!

video

Saturday, March 3, 2012

December eeg

Here we are aready in March and still have not updated since the Decmeber egg.  Trust me when I say being a stay at home mom is much more than I expected! LOVE it , wouldnt change it for a minute, but it sure makes me wonder how I ever got three kids out the door and fed by 6:45, to three different drop offs, while selling the house and leaving it in "showing" order, to only return at 6:00pm  feed the crew again for dinner, finish the work from my work day, spend some time with the husband and start all over and do it again the next day.

Shoot that was easy compared to this!;-)

December eeg was very different from the one before.  I could feel it in my bones. I could sense it from the eeg tech.  Jake, again was supposed to be in for the entire day, but was only there 1 maybe 2 hours before we were "released." 

I knew in my gut it wasnt the "happy ending" that we had a month or so before.  I was told to go home and they would call me after the weekend, or maybe a week or so to report the results..  Yeah right!! I said, "no , i was promised we would be told if we could take drugs away or not..."  so after a little waiting, dr h came and confirmed my worst fears..we have seizure activity.

booo..hate to hear that.  however, he said the activity he saw was activity that many people are walking around with today and have never and will never see any effects of.   He wanted to be cautious though, and did  not want to take away any more meds at this time. 

Jake is still on felbatol, and clobazam, and a butt load of vitamins, but he didnt have to add back the Depakote.

Since losing the depakote, Jake's background slowing has disappeared!  within 4 weeks minus this drug, it is gone!  He has had it since Doose became a true diagnosis almost 3 years ago , to the day. 

Background slowing in basically a "fog" that Jake has been in since having seizures and being on so many meds. It is what has caused the drooling, trembling, stuttering, and out to lunch personality.  It is the static on the tv that is hard to see through, because you're focusing so much on trying to see through it.

Jakes slowing was 3-4.  "normal" children/people have a slowing of 8 or 9.  in other words his was VERY slow.  that static was very intense for him.

since the depokote drop, Jake has started to read, ride his bike, take on more and more friends and appear as a more "normal" child.  he can run with out falling over or holding his arms like a T-rex and most importantly, we can feel our little boy coming back to us.  There are many, MANY more hurdles to jump, but we will take what we can get.

I certainly wish we could have rid his little body of more drugs, but am certainly happy with the results thus far.

thanks for praying for our little man! there are many more things to update! come back tomorrow and I will fill you in!

Trust in the LORD with all your heart,

and do not lean on your own understanding.
In all your ways acknowledge him,
and he will make straight your paths.
Proverbs 3:5-6