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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Thursday, September 18, 2008

soooo ..... we get the helmet that's supposed to insure us against future emergency room trips and upon a hour of waking this morning we wind up in the er! Are you kidding me?!

Jake's "bad time" is usually in the morning or upon waking from a nap. Why? Who knows other than it appears Jake's seizures are associated with sleep or lack there of. I have taken a leave from work because of Jake's seizures and because his bad time is in the morning, my mom has been going waaay out of her way to take Addison to school. God Bless Sally! Our morning routine usually consists of me waking Addi, and she can watch morning cartoons, as I do her hair and she gets dressed. During this time the video monitor is going with me everywhere, as I don't want Jake to wake and try to find us and have a seizure. (He usually will have several right before trying to climb out of bed, and then many more soon after) So when he gets up and Addison and my mom get on their way I grab a mug, or ten, of coffee, and my paper and "wait out or "BIG seizure time" in the play room in the comfort of carpetting and big fluffy couches. I then throw Jake in the stroller and we both try to take in the beautiful Texas Fall mornings.

Not this morning...we didn't make it 1 hour and he followed me into the kitchen and fell (not sure if the gracefullness he got from his mommy came out, or he had a seizure) onto the hard woods. Four hours later we emerged from the er tired, hungry and with 6 bright and shiny black stitches!

All the while the pretty little hockey helmet is sitting perfectly on the playroom floor!

God Bless~ Christine

4 comments:

Anonymous said...

Stay Strong...You, Matt, Addison, and JAKE are doing great!!! If anyone can do it, it is you guys. Love All of You, Chad

nicole wahl said...

Hi Christine-
I'm Nicole. I met Brandy through another "mom friend" in Tampa. I have a 3 1/2 year old son and when Brandy told me about this site I thought it was a great idea. Unfortunatly, I know others who have been through various difficulties with their children also, and this type of site was an anytime source of venting and comfort for both mom and dad. I hope you find that for yourself also. As I'm sure you know, mom's have a bond no matter if they have never met, and you can be sure I'll be praying for you and your family, checking back on your website,and cheering for Jake!
Love, Nicole

Gaylea said...

What a beautiful little boy and family. I was given your site information by our church prayer team. I pray that you would consider that there is no medical reason for Jake's condition because it is a spiritual condition, just as in Luke 9:37-43. Jesus is the healer and has given us knowledge of how to cure such conditions. The following Christian ministry can relieve your son of these symptoms: www.tlsm.org . Cook's Children Hospital is very familiar with Thurman Scrivner at tlsm.org and could give you a glowing recommendation of his ministry because he has helped many children there. God bless

amy910 said...

Hi,

My son Jack starting having what we thought was infantile spasms at the age of 6 months, just 4 days after his 6 month immunizations. I have always thought it was due to the vaccines, but just recently we have found out he has a gene mutation called Dravet Syndrome. He is now 7 & has all types of seizures. His started out really bad (100's daily) just upon waking or after taking a nap too. This is why we thought infantile spasms. We live in North Carolina & have seen a lot of doctors throughout the southeast & are currently seen in Chapel Hill, NC. My son has a Vagal Nerve Stimulator (VNS) this has helped greatly, he is on keppra, topamax, clonazepam, acetazolamid, B6, risperal & concerta for behavior, & fish oil. He was on the Ketogenic Diet for 1 1/2 years without any significant seizures & NO seizure meds. This was by far the best treatment option ever for Jack, but for whatever reason the diet stopped working & Jack's seizures were even worse. He has had literally 100's daily & still continues to have them. Please contact me if you would like to talk or ask any questions. It is hard to find others that are our situation. If you are interested in learning about Dravet Syndrome visit www.idea-league.org

Take care,
Amy Berry
910-652-2691