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

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.