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


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Monday, December 15, 2008

We went to the neurologist today and now we have to wait 7 more weeks until we go again. the next appointment is on Matt's birthday...hope fully a very good SIGN!!!

The Dr. looked at Jake's face,head and chin, shook his head and mentioned "vns" (vegas nerve stimulation.) This is before I officially "reported"our seizure activity. I tried to "change his mind and convince him that many of these scars, scabs and bruises were simply that of a three year old. He then informed "the trembling" and loss of coordination is not normal.

I guess the magic med number in the neurological word is four. Once you get to 4 drugs and have tried four drugs, it is doubtful that any other drug will work. So you are then labeled as "drug resistant."

For Epilepsy that narrows your remediation choices to the ketogenic diet and vegas nerve stimulation.

We are to start our "fourth drug" this evening and after 7 weeks if it has not controlled the seizures, we need to be prepared to tell him what our "choice" is...the keto, or vns.

I will not lose hope that this fourth drug will not work yet though....Feb. 19th is Matt's birthday and 4, as in the 4th med., is our favorite number! I can't say that is our lucky number, as I have nothing to judge that on, but it is our favorite. My friends know what a number freak I am, so hopefully these are good signs.

The keto diet is a diet very high in fat and low in carbs. This is probably my first choice, after not researching either choice very much, but all my kid eats is carbs! Jake used to love chicken, meat, veggies etc...but now he won't eat unless it's carbs....or ranch dressing.

I don't know what will we do. Hopefully we won't have to make this decision. I will, however, read all the books, pamphlets and videos that were given to me today and make Matt do the same when he gets back.

I just thought of something else..."7" was my volleyball number and 19 is the number of some of my friends anniversaries, as well as being special to them in other ways (Go Broncs!). So we have "7" for seven weeks, "19" for Feb. 19th, and "4" for the fourth med!:-)
Who wants to play the lottery?!



When it is dark enough, you can see the stars.
~Charles A Beard


God Bless~ Christine

around 5 seizures today.

5 comments:

Leslie said...

Perfect numbers! It has to be a sign! I am sorry the dr. didn't have better news.

Anonymous said...

I am going with your lucky numbers. Hope this med works..

Susan

Julie said...

Ok, now I have something new to pray for- the 4th med to work!

Brandy said...

Nice on the numbers!! Prayers and thoughts always...

19 is also 3 sports numbers of boys I have dated....hee hee...lucky??!! Let's call it that!!

xoxoxo
Brandy

Fawn said...

Hi Christine,

I just found your blog via a Google Alert. I'm sorry to hear about Jake's epilepsy, but glad you are blogging about it. I find it helps so much to share our experiences with others.

My daughter Jade (who is almost 3) started having seizures at the end of May and has now "failed" 4 drugs. When I first heard of the keto diet, I was pretty scared to go that route because it sounded like so much work. She's been on the diet for over a month now, though, and the daily "work" really isn't difficult. It WAS very hard, psychologically, the first few weeks. Like Jake, Jade loves her carbs. We've found ways to mimic a lot of her favourites, though.

Anyway, I will pray that the fourth drug you are trying will work for Jake. If not and you need to make the decision, let me know if I can be of any help.

Blessings,
Fawn

http://fawnahareo.com