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


Wednesday, March 10, 2010

Nocturnal tc's

Damn these darn things!

They are back.

So is my disappointment.

I REALLY thought "this was it!" I knew it was a long shot, but I simply just had "that feeling!"

Jake, aside from the tc's, has been doing AWESOME, though! His critical thinking, memory, talking, and coordination are just amazing to me. I had thought he had been so much better for a while, so it is such an astonishment to see how much he can continue to improve and how resilant kids are!

I truly believe his attention is TONS better too. For the first time, maybe ever, he sat and we played a good 45 minutes worth of board games Sunday night. Usually, board games, would last maybe 5 minutes, and that was on a good day. For him to sit 45 minutes and stay on task, was nothing short of a miracle to me.

His teachers have been reporting similar stories at school.

He still has much room for improvement, but for now I will rejoice these baby steps.

Although, I am very pleased with the positive side effects of Jake's steroid treatment, unfortunately the seizures are back.
For the past two nights his seizure activity has been quite active. Last night he had at least 4 nocturnal tc's.

Nocturnal seizures are usually tonic-clonic. They might occur just after a person has fallen asleep, just before waking, during daytime sleep, or while in a state of drowsiness. People who experience nocturnal seizures may find it difficult to wake up or to stay awake. Although unaware of having had a seizure while asleep, they may arise with a headache, have temper tantrums, or other destructive behavior throughout the day.

Eventhough, he has had seizure activity and maybe even increased seizure activity, we are going to try and follow through with the rest of the 9 day wean of his oral steroid, prednisone.

Last night, as Addison and I watched meanigless tv and Jake fell into a slumber beside us, his seizures started. We were able to capture a couple on video. This is what we see several times on most nights.
(As this one seeems longer than many, you will see me swipe the "bump" on his chest. I used the magnet to activate the VNS, vegal nerve stimulator)

I see these in person quite often. But witnessing them on a screen, is pretty disturbing. I absolutely can NOT believe that I am watching my little baby boy. His contorted face and body, the weird noises, the helplessness....how is that my precious son?!

He has been battling this beast for about 18 months and I simply can't believe this is my son. I have watched him fall, bleed, cry, slur, drool, seize, and completely regress. I have accepted it all, but seeing it on a screen is absoutely unbelievable. There is no way I am watching my baby boy!

No matter how steep the mountain - the Lord is going to climb
it with you.
- Helen Steiner Rice


Fawn said...

Christine, I am so sorry to hear that the nocturnal TCs are back. :*( I started to watch the video, but could only watch about 5 seconds of it before I had to stop -- it`s too horrible to watch and brings back too many memories.

It IS wonderful to read about Jake's developmental progress and I applaud you for trying to stay positive even though your heart broke to see the TCs come back. Sending you love and hope...

Anonymous said...

When Addison curls up to him.........Oh Christine, what wonderful children you have! To see her lover for her brother, and to see JAke such a little fighter! I mean what he endures, he is so strong! I am blown away right now and to hear your voice so calm...you all give so much hope to the situation! It is amazing. Thanks for letting us have some insight and to really paint the picture of the nasty beast! We love you so! Julie and Jeff and uh i am still balling my eyes out! Snot everything,

Mandi said...

I'm praying for a seizure free spring break!!! I sure am going to miss the little guy this week, but I'm glad he has Mo to keep him company. :)

Wendy M., fellow Doose Mama said...

Oh, Christine, the video...! I started to watch, and made it about 3 seconds before I had to stop and catch my breath. Riley is still fighting the nocturnal tcs, and it hurts so to see our wonderful babies out of control like this. You do sound calm in the video, and know that that is only on the outside...the anger lingers inside where it won't scare the kids. Love your blog--keep strong!