WE CAUGHT ONE....WE CAUGHT ONE!!!!! Not a fish, but a seizure. Can I hear an AMEN??? I thought sure she wasn't going to have any seizures. We got hooked up to the ambulatory EEG at 8 am yesterday. I got her back to school as quickly as I could (an hour and a half drive) as school seems to be her main stressor. Absolutely nothing happened yesterday. She had at least one seizure every day last week at school. The teachers couldn't believe it. She came home in a great mood (which normally I would wholeheartedly embrace), no seizures. All I could think is, maybe she is done for a little while. Naturally, as soon as she is hooked up....seems to be the story of our lives.
She went to sleep fairly well, talked A LOT in her sleep, but no seizures... UGH!! She got off to school this morning, even rode the bus with the whole EEG get up (Hannah is very self conscious. She doesn't like to look "different." We had bought new clothes with hoods, a new very snazzy hat and even a cool bag to put the monitor in). I waited all morning for the school to call. Praying. Please don't let this be in vain. We need information. Finally...THE call!! Blitzen had alerted at 11 am in math class. Good boy!! Another call at 11:30. Blitzen alerted again in the lunch room (never alerted there before). Another atta boy!! There were no visible changes in Hannah yet. Then at 11:45 the seizure began. Glazed over, drooling, baby talk, and getting very agitated. I came at 12:30 to pick her up so we could head back down to Cincinnati to unhook the leads. She was still pretty out of it. Miss, "I don't want anyone to see me like this", completely had her electrode ridden head exposed. She didn't care. I am not even sure she knew it. wow. She went all the way to Cincinnati and all through the hospital like that..
Before they unhooked her, they checked the data, It was there. In all its glory. Praise the Lord. Once they knew it recorded properly, they unhooked her, very itchy head.
So, now we wait....probably a week or so. If this shows them coming from one area, doors could be re- opened. But, I am trying not to get too hopeful....
And no word on VNS yet.... the saga continues....
Tuesday, September 29, 2009
Subscribe to:
Post Comments (Atom)
Beautiful Hannah...
How this journey started....
Hannah was born prematurely at 34 weeks gestation. She was a relatively healthy preemie; initially having difficulty maintaining body temperature and needing to grow. She weighed 4 pounds 9 ounces at birth. When she was four months old she began to drool, non stop. We were told the first year she was "teething." At 18 months old, we really started searching for reasons of why her shirt was always soaking wet. We saw various specialists who always sent us to another specialist, saying "everything looks okay." She spent years in oral motor/feeding therapy to help her not to drool. It wasn't until she was four years old and in preschool that we started to get some answers. Her preschool teacher commented one day that she wasn't reponding when her name was called. I took this information to her pediatrician who then orderd an EEG, "just to rule it out." Much to our shock and amazement, the results showed, she was having seizures. That is the day our journey REALLY began. Once she began taking seizure medication the drooling almost stopped completely. (She will still drool to this day when she is having seizure activity). Since then, it has been a roller coaster; countless medications and medication changes. She has never really reponded well to any medication.
About two years after she was diagnosed with epilepsy, the doctors noticed that her blood pressure was running high. After many tests, she was diagnosed with hypertension. We still are not sure why, but her cardiologist feels her blood vessels are thicker than normal.
About this same time, we also began looking into why Hannah was such a horrible sleeper. She would thrash, talk, move every which way, during her sleep. The sleep studies revealed that she has alveolar hypoventilation sydrome, which means she has too much carbon dioxide in her system when she sleeps. To help this, she wears a BI-PAP at night. This has been monumental in giving her more effective and quality of sleep.
Every day is a challenge for Hannah and our family as a whole. Blitzen has been an absolutely wonderful addition. She calms herself sometimes just by petting and loving on him. He has been trained in behavior disruptions and will sometimes be able to stop a meltdown from getting out of control.
It has been extra hard on the whole family since daddy is deployed to Iraq. He has been gone since January 09 and will gone until Jan 2010. We get to talk with him by phone and on the web cam; which is nice, but not the same!! Blitzen has helped to make his absence go just a little smoother....
About two years after she was diagnosed with epilepsy, the doctors noticed that her blood pressure was running high. After many tests, she was diagnosed with hypertension. We still are not sure why, but her cardiologist feels her blood vessels are thicker than normal.
About this same time, we also began looking into why Hannah was such a horrible sleeper. She would thrash, talk, move every which way, during her sleep. The sleep studies revealed that she has alveolar hypoventilation sydrome, which means she has too much carbon dioxide in her system when she sleeps. To help this, she wears a BI-PAP at night. This has been monumental in giving her more effective and quality of sleep.
Every day is a challenge for Hannah and our family as a whole. Blitzen has been an absolutely wonderful addition. She calms herself sometimes just by petting and loving on him. He has been trained in behavior disruptions and will sometimes be able to stop a meltdown from getting out of control.
It has been extra hard on the whole family since daddy is deployed to Iraq. He has been gone since January 09 and will gone until Jan 2010. We get to talk with him by phone and on the web cam; which is nice, but not the same!! Blitzen has helped to make his absence go just a little smoother....
No comments:
Post a Comment