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


Monday, March 2, 2009

TAKS and seizure anxiety

Tomorrow starts the first day of the darn TAKS testing. I am so nervous for my students, my school and all the hard work the Apollo staff has been doing to prepare these kids for "the test" that almost, directly, or indirectly tells their future, or at least near future. If they don't pass this test they don't go to high school. The teachers are held creditable and it very much is a reflection on the school and district. This darn test, is embarrassingly, what teachers teach the school year for. I hate that we now have to teach to a damned test, but unfortunately, that is the way it is.

Wish the Panthers luck as we log many hours tomorrow, behind closed doors, sitting in silence, as we pray the kids remember everything we have been trying to teach them all year.

6 months out and seizures still suck! We have been having an awesome couple of weeks. Today, however, was quite different. I called in often only to hear the seizure count keep going up in a short amount of time. I believe I was gone about 2 hours, when I checked in the first time and Jake had already had 7 seizures.

Matt picked Jake up at 1:30 to go to the doctor's for an xray and a boogery nose check, and in the waiting room alone Matt counted at least 7 seizures.

I guess we have all learned not to count our chickens before they hatch, but we really thought he was getting better....and then today happens.

Why the doctors visit?
Jake ran into a wall last night. Yes, back to the gracefulness the kids got from their mom. He hit the wall with his thumb. He complained about it last night quite a bit. We examined the thumb and wrist area , to find, a blood blister around his nail area. He complained a bunch again today, therefore, Matt left work early to take him to the doctor. The doc checked him out, thank goodness, and found an ear infection. Maybe the infection caused more seizures?

The xray was "inconclusive" (whatever that means) We were then advised to see an orthopedic dr. to get better results. The last time were told this, we put Jake through a cscan, a mri, and weeks of pain with a broken clavicle!

Matt went to the hospital to pick up the xrays and we will have them re-examined for a second opinion tomorrow.

Wish us luck on tests and xrays!

God Bless~ Christine


Fawn said...

An ear infection can DEFINITELY cause more seizures, as can a cold or any other stress on the body. We've seen this almost without fail since Jade's seizures started in May.

About three weeks ago, Jade was having more than 10 full drop seizures a day, along with smaller drops, myoclonic jerks, and absence seizures. It was awful, but we didn't worry about it too much about the setback because she was recovering from the first cold she's had since starting the diet.

A week and a half ago, we tweaked up the ratio of Jade's diet and yesterday she had her first seizure-free day since September. What a blessing, and especially amazing compared to just three weeks ago. :)

Hang in there and don't despair (not that you ever do that). Jake may well come right back up to where he was before the infection as soon as it clears up.

Brandy said...

Good luck on TAKS...try not to stress to much. Keep us posted on the outcome of the injury. Glad the docs caught the ear infection and it sounds like that would increase the seizure count. Always thinking of the Peters' fam...can't wait to see everyone in April. xoxoxo