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, January 5, 2009

the diet starts?!

I had every intention to blog on a couple of things, but through the tears, I don't feel I can post more than a little update.

I somewhat, 1/2 heartily, started Jake on the modified Atkins diet this evening for dinner. Having absolutely no clue, if I am doing this correctly or not. I slap some bologna on his plate, a piece of cheddar cheese, a hard boiled egg and mucho mayo. I try to make it pretty and "fun" by cutting the bologna and cheese I rolled up into little "sushi rolls" and poked them with a toothpick, so he could pick them up.

Jake is allowed no more than 15 grams of carbs a day, but 10 would be ideal, on this diet. From my calculations, His dinner had less than 5.

As the dog steal one of the "sushi rolls" I throw him another piece of cheddar and again try to make "it fun" by having him bite eyes, A nose and a mouth. He won't even touch the eggs so I give him another piece of bologna and make more faces.

As he is eating this ultra boring meal, he talks to his food and says,

"seizures go away!"

I have been trying to lead into this diet by telling him he can't have bread anymore b/c we want the seizures to go away.

As much as I want him to be aware, as to why he has to eat differently than his sister, his mommy, his daddy, and other kids, it was a wake up call to hear those words spoken to his food.

Just after Jake says this his head drops with a seizure. Did I think this diet would work instantly? Of course not, but that's some strange irony, if you ask me. How does a diet stop seizures?

I would rather err on the side of faith than on the side of doubt. - Robert Schuller

God Bless~ Christine

yesterdays count = >2
today thus far= >2


Julie said...

I realized how big and beautiful his ayes are in the bologna pic. I hope and pray the diet works.

That hurt my heart to read that he said that.

Love you!!!!!

Brandy said...

Absolutely love this picture! The good part about him saying that, is that he may be more apt to eat what you put in front of him becuase he knows it may help. Silver lining? Sounds like it to me!!! You are doing a great job and YES, you do know what you are doing...low carbs...go with it. You've started off right! Man, I wish I was on the Atkins...bacon, eggs, cheese, beef, sausage....seriusly some of my fave's. Let us help you think of some recipes...sound good??? Love you!

Just for fun, when I post (and I think when everyone posts...you have to do a "word verification")..thought I'd let you know my is "shica"...just a bit of meaningless trivia!!! From here on out, I am going to tell you what they are...maybe a source of laughter if we got something really funny!!

lisa a said...

UGGH! Crying again! What a brave boy! Sorry to return him to you with a bloody mouth! I never got brave enough to really investigate, but he went right back to playing!

Fawn said...

I highly recommend the book "Keto Kid". Even if you're not on the ketogenic diet, it has great tips for how to talk to Jake about his diet, and lots of recipe ideas that you will be able to be flexible with because MAD isn't quite as strict as keto. I also still recommend the Yahoo keto group -- lots of the families on there have tried different diets (and some of them are still there, even when they switched from keto to MAD, for example) so they are a wealth of knowledge and support you can draw on.

Your own feeling of commitment can make a big difference -- the hardest part is the beginning!

Best of luck


Anonymous said...

I know this is going to be hard but hopefully it will help. You will find things that work and he will eat.