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Update on Haley

Posted by Haley's mom on January 20, 2010 at 9:57 PM

Well the last post on December 2, 2009, we had gone those five days without a seizure.  I don't  think it was more than an hour after I finished typing, I was sitting in the glider rocker waiting and boom, there is was the seizure we were expecting.  Since then we are lucky if we have gone more than one day without a seizure.

 

We went to the neurologist on Dec. 15th and it was decided to do nothing at this time.  We looked into Vimpat, another new seizure drug.  There have been no studies on kids and definitely no studies on Dravet syndrome.  I opted to wait on that drug.  We agreed to meet again in February and so we wait.  I guess when you don't know what to do, it is best to do nothing at all.

 

At this point, 20 days into the new year, Haley has only had five days without seizure activity.  She primarily will have one or two seizures before she wakes up.  She goes on to function normally (for Haley) afterwards.  Amazing....  There have been a couple of days where she has one tonic clonic before she wakes up, then one in the late afternoon (these scare us the most) and then one more after she has fallen asleep.  This is when we intervene with a Diastat dose.  If we don't we feel we are most certain to have a cluster of seizures all night long.

 

About a week ago Haley had one of those three seizure days that I just outlined and Bobby and I were made aware how much Peyton and Parker go through with their sister having seizures.  Bobby, the twins and I were eating dinner and Haley was just wandering through the kitchen.  She was not hungry and just a little out of it.   Then BAM, she was down ont he hard tile floor in a full blown tonic clonic.  Parker dashed to get a pillow for her head, Peyton got a washcloth to wipe her drool, I went and got the oxygen tank and then we all waited.  This time Peyton said, "Daddy, Haley's lips are really purple...she is getting purple..." .  Bobby responded with, "Peyton, that is why we have to give Haley oxygen, do you know what would happen if we didn't?"  Then Peyton said in a rather matter-of-fact tone, "yes, she would stop breathing,...and she would die....and go to heaven...alone.........

Daddy?  Who would take care of Haley in heaven?..."  Oh, out of the mouths of babes....  This is all they know.  It is sad to think they did not know nor will they remember their sister when she was lively and so funny as in her youtube video.  They will only know their sister in this semi-drug induced state.  They are so tolerant.  I thank God for them everyday and for the compassion they are learning.  Who knows they might be the duo to crack the code on Dravet syndrome!  That would be a blessing!!

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2 Comments

Reply Elizabeth
10:44 PM on January 31, 2010 
I am not even sure how I came upon this. My little girl has Doose's. She has 2 older brothers. You could've been telling that story about them. Much love to you and your family. I hope the new year is a good one.
Reply Haley's mom
12:26 PM on March 6, 2010 
Elizabeth~Prayers to you and your little girl. I know when we had Haley's genetic testing done Doose's was something they were looking out as well. Thanks for your well wishes. I hope your year is a good one too!