Sunday, June 20, 2010

Brakes

The brakes have been slammed on Emily's good seizure streak.

On Saturday we noticed she was having very subtle spasms again, well we thought they were. As the night went on it was much more clear that they were spasms.

Right before her 9pm meds she was asleep and she started shaking her head back and forth, again very subtle, like she was saying no. We were pretty sure it was a seizure and luckily it was the only one and it only lasted 10 seconds.

Joe and I took shifts through the night to watch her. She did not sleep much through the night and in turn she has slept most of the day.

Today, more spasms, they are still very subtle. Sadly she has two seizures, well we are almost 99% sure they are seizures. Both were less than 15 seconds and were the same as the day before and both while she slept and they never woke her up.

Joe and I have been racking our brains to see what it could have been.

There are several different things it could be. She has been constipated ( sorry if this is TMI) she has not had a good BM in 2 days in spite of miralax.

She was out in the heat on Saturday. We did a good job on keeping her cool though. I did forget to give her MCT oil with her 10am feeding which brought her calories down slightly but her urine ketones and blood sugar remained perfect the past 2 days.

She has also been super gassy. When I vent her g-tube air rushes out so I am trying to vent her more often.

For the life of me I just don't understand her seizures. She has a virus with a fever of 103.7 and no seizures and now she has had seizures out of the blue with no reason what so ever. I guess that is just the nature of stupid seizures.

She had 22 days with no seizure or spasms. She is capable of doing it again! I keep telling myself this.

3 comments:

  1. So sorry to hear this... but maybe they won't last... heat... just all the differences over the past couple of days... we will be praying that they go away again!!!!

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  2. We always have the hope that they were not seizures at all, but maybe muscle twitches or spasms. The heat does funny things to people, and affect babies differently than adults. Let's keep hoping and praying that she doesnt have any big seizures.

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  3. HATE READING THE SEIZURE FREE STREAK HAS ENDED!

    DO YOU KNOW THE CAUSE OF SEIZURES AT THIS POINT? I AM SURE YOU HAVE HAD ALL THE BASICS..MRI,CT SCAN, BLOOD WRK, SPINAL TAP...HAVE YOU DONE A PET? SORRY, I CAN'T REMEMBER...DID YOU GO TO DETROIT TO SEE DR. CHUGANI?

    ANYWAYS...NOT SURE HOW FAR DOWN THE PATH YOU ARE IN FINDING A CAUSE. WE NEVER HAD A CAUSE (ALL TESTS NORMAL)FOR OVER A YEAR UNTIL THE MUSCLE BIOPSY.

    SEIZURES ARE FICKLE, BUT I THINK IT HELPS WHEN YOU KNOW WHERE THEY STEM FROM.

    PRAYING YOU FIND THE "MAGIC REMEDY" FOR YOUR SWEET DARLING.
    SOUNDS LIKE THEY ARE SOMEWHAT CONTROLLABLE SO THAT IS GREAT...SHE IS IN MY PRAYERS!

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