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


Thursday, November 26, 2009

Happy Thanksgiving!

Happy Thanksgiving! We are so thankful to be where we are today in our new life with Doose Syndrome. Jake has come so far and we have been educated on so much the past year. Thank you to everyone who continues to keep us in your prayers. The power of prayer is truly amazing. Check out where we were with this darn Epilepsy stuff last November. and where we are now! I can't believe that he was able to walk on stage by himself. Sit on stage and I did not fret about him falling face first onto the floor! God Is good! Remember God's bounty in the year. String the pearls of His favor. Hide the dark parts, except so far as they are breaking out in light! Give this one day to thanks, to joy, to gratitude!” Henry Ward

1 comment:

DSCOTT said...

Thank you for sharing your story. My son Michael started having drop seizures when he was aobut 2 1/2 years (after several febrile seizures and medication since 17 months).

How scarey it was, that I needed to always hold his hand whenever he was on stairs or hard surfaces...I can totally sympathize with you. he never new shy he fell and would often get up after a drop attack and say "oooh slippery floor"

It took a long time before we were able to get a drug to control the drop attacks, but many of the muscle jerks continued. This made learning to read very difficult because he would always lose his place. He also has had a great deal of trouble memorizing (i.e songs, number facts etc.)

Michael is now 10 years old, and still has numerous seizures a day, but they are mostly only noticable on the EEG. He lives a full life and participates in all kinds of sports. Because the seizures are very small, he is able to compensate, both physically and mentally. Even though he is behind in school, he has been able to accomplish a lot consdering the effort it takes. The school has been very supportive in making accommodations to assist his learning.

Unless there is a miraculous recovery, I don't expect he will ever be allowed to drive a car. The Doose Syndrome website, does however, give us hope that there still might be a spontaneous recovery some day.

Debbie, Calgary, AB Canada