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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Sunday, May 2, 2010

Creepin'

Unfortunately the past couple weeks, the nocturnal tc's have been creepin' up in numbers and intensity.

Jake has a neurologist appointment on Wednesday, so hopefully we can figure things out then.

We were asked to have Jake's blood levels checked last week.  So that is what he did first thing, bright and early on his birthday.  Luckily, the kid lOVES getting his blood drawn, so that was an excellent birthday present to him.

I am anxiously awaiting the news on those results, as I always take for granted everything will be just fine.  The blood levels check his current medicine levels and also make sure there isn't any damage being done to his liver.  The liver is what metabolizes all these drugs he is on, so it, the liver, can take a beating.

I think the plan may be to increase some meds, if indeed his med levels come back ok.

I am not quite sure how I feel about increasing meds that he has worked so hard to get rid of.

But, I certainly don't want to see all these seizures back.  The past couple days we have had 3-5 a moring and 3 during naps.  Usually, I would kind of shrug these off , but they are also coming back with increasing intensity.

However, I also don't want to see his cognition and "zip" be lost again as well as a result of more meds being on board.

Hopefully, Dr. H will have some fabulous, miraculous plan that will "CURE" everything!:-)  It doesn't hurt to be optimistic!:-)

My worst fear is that seizures beget seizures.  If these seizures are creepin' back with a vengence, are we going to see the dreadful drops again?!

Hopefully, these can all be chalked up to a simple growing spurt and a slight adjustment of meds will put us back on track!

On a side note:

Please pray for Aidan and his family.  He is a fellow Doose patient going through a very difficult time right now.

Read about Aidan here

"If God gives it to you, he will lead you through it."
Lovingly created by Christine at 9:33 AM

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