All 4 Jake: Doose Syndrome Epilepsy Alliance

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 14, 2011

Doose Syndrome Epilepsy Alliance

I would LOVE for everyone to go check out the new Doose website! It is updated and gorgeous!

http://doosesyndrome.org/

Jake's story is on there, as well as several other kiddos who are fighting the beast with him.

What's amazing about this site and Doose/Epilepsy awareness, to me, is that when I was searching for ANY sort of information on Myoclonic Asatic Epilepsy, aka Doose, just 3 years ago, there was nothing to be found. What we did find was not encouraging news at all. We would have rather not read any of it.

The prognosis was always very bad: mental retardation, possible death, lifelong seizures, learning disabilities etc, etc.

I am quite certain that even Dr. H had his hands full with Jake and his case. I vividly remember the look in his eyes...the look of compassion and yearning to help our baby boy, but not knowing exactly how to do it. I think in some sort way Jake was a little Guinea pig, a learning tool. They, the Dr.s, were learning, just as we were also learning.

The difference between Dr,.H and the other neuros, is that he tried!

He tried to save our little guy and bring him back to us.

We left one neuro after a week hospital stay and the parting words were "we don't know, he is a hard case." and the other; we were fired from!

Dr. H and the Cook neuro team fought this battle for us and even let us drive with them through it, instead of insisting we do things "their" way.

Over the years, this unawareness and these questions are changing to ones of more certainity.

Changing thanks to awareness!

Thank you all for all you do in helping to raise awareness for this horrible disease. The more we talk about it, and the more we share, the more everyone will become aware and try to fight the fight with these precious kiddos!

What can you do to spread the word?

Awareness without action is worthless.
Phil Mcgraw