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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Tuesday, November 11, 2008

Since the malicious murder of Spot Alvarez Peters, more fish have come and gone in the Peters household.

We were convinced to buy 3 tiny tetra fish by the pet store employee, who probably wasn't a day over 16. He assured me, Jasmine, Ariel and Prince Eric, are very hearty and would be hard to kill. I believe Prince Eric lasted 4 hours, Ariel and Jasmine, however made it through to the next morning. It was late morning when we checked on the last remaining prince and princess, only to find them sucked into the aquariums filter. It was not a pretty sight.

This time I made Matt and Addison make the trek to the pet store to pick out yet another fish. They came back with another beta, Jasmine II, and a hermit crab, SlugBug, who we have yet to see, as he has hidden in his pyramid, or under the dirt the duration of his stay at the Peter's household. Word must have hit the pet store about the Peters murders and Slugbug was not going to show his face in fear of meeting his fate.

Jake went up in his meds Friday. This leaves only one more week of the long wean before we need to check blood levels and evaluate seizure activity.

I have been told since day one, that we wean so slowly onto his Lamictal because in combination with his Depokote a "deadly rash" can occur. So since day one we have been on the lookout for this deadly rash, that basically burns the skin off of the patient.

Well Saturday afternoon, a day after the "upping" of the meds....I notice a rash. I am thinking "are you kidding me?" The "deadly rash" starts on the tummy,check, is mottled or lacey, check, and can look like a burn or have a burning sensation, check...I didn't notice the rash until jake complained that his belly burned.

I immediately call the nuero on call who informs me to stop his Lamictal...again I am thinking "Are you kidding?" We have come so far and I know that you also have to "wean off" of the drug. I fear a reaction from not weaning off and even more so, fear a seizureful night!

I decide to take him to an after hours clinic. They get in touch with the nuero and they both decide this is not the "deadly rash" and my son will indeed make it through the night, as opposed to having all his skin burn off.

Phew, because we were not looking forward to picking up the layers of skin that may be left from this "deadly rash."

We are unsure what caused the rash. It was obviously an allergic reaction to something,as his eczema was extremely inflamed as well.

All is well now. We are just anxiously awaiting the day when we can count less than 5 seizures a day. We are over 6 weeks stitches free though! (knock on wood)

It is Epilepsy awareness month. Research the 36 different types and the related syndromes. It truly is not what you think. Wear Purple!

God Bless~ Christine

2 comments:

Julie said...

I am glad it was not the "deadly" rash. I really hope your fish and crab survive!!!

Brandy said...

SO glad all is okay. Sad to hear about your fish problems...that is horrible! Hopefully, the new additions will thrive....:)