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


Friday, May 1, 2009

The beast is back

We had an awesome 3 days! Monday, Tuesday, and Wednesday were totally amazing.
Jake had not one seizure!
He did not shake!
He did not stutter, slur, or drool!
He even did not wear his helmet to play around the house.

Those 3 days were a blessing.

Now, however, the beast they call Doose Syndrome is back with a vengeance.
Yesterday Jake had 5 tc's.
Then later in the afternoon, the absence seizures started back.
This morning he had another tc and the drops returned.
I fear we are going back to over 50 a day like he was having before the hospital stay.

This inconsistency of seizure control and lack of medicine to cease the seizures are some characteristics of the beast that invaded our house in August...The beast called Doose Syndrome.

Doose Facts

*Myoclonic-Astatic Epilepsy usually occurs in children with an uneventful history; there is likely to be no pre-existing neurological disorder.

*It clearly affects more boys than girls at a ratio of about 3:1.
In 24% of the cases, the epilepsy starts during the first year of life (at 2, 4 or 5 months of age).

*In 94% of the cases, the epilepsy starts within the first five years of life.

*In 100% of cases, the child develops myoclonic and/or myoclonic-astatic (or drop) seizures. The -astatic (loss of muscle tone) feature of the myoclonic-astatic seizure is rare and unique to MAE, and is the most important and distinct feature which helps differentiate it from other syndromes.

*In addition to myoclonic seizures, children may also have a combination other generalized seizures including tonic-clonic, absence and non-convulsive status epilepticus and, rarely, tonic seizures. See Seizure types.

* MAE is rare, representing only 1%-2% of childhood epilepsies.

*MAE is characterized by difficult to control seizures that often occur throughout th eday. The can possibly impair a child's learning and development opportunities.

This information was taken from the following site:
PLease visit the site and learn about one of the many different faces of Epilpesy.
Life is a series of experiences, each one of which makes us bigger, even though sometimes it is hard to realize this. For the world was built to develop character, and we must learn that the setbacks and grieves which we endure help us in our marching onward.
~ Henry Ford
God Bless~ Christine

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