We have had a busy seizure week. ugh... School is definitely a big stressor for Hannah. Dr. Neuro is right on with this one!! We are waiting to see if things level out for her. None of us are eager to start a new med. COME ON VNS...WE NEED YOU!!! (still not approved, BTW, but still very hopeful).
She had some big seizures on Tuesday. Had a great day at school, but came home and let loose! whew. Blitzen alerted twice between 5 and 8 pm. I feel so blessed to have him!! I tried the oral diazepam again that evening. Dr. Neuro had increased the dose so I thought I would give it a whirl....not again. It just does not work for her. not sure if it's because it's oral or because we still don't have the right dose.
The school called me at the end of the day and said that Blitzen alerted. Because it was the end of the school day, I went in to get her. I definitely don't want her on the bus with a seizure! Hannah's aide said they were in art class. Blitzen was next to Hannah, got up and "pawed" the aide. He went back to Hannah and back to the aide and pawed her again. Good boy!!! So, off to the clinic they went... We gave the increased dose of Versed. Hannah gets so mad. She gets mad she has to leave class. Mad that Blitzen alerts. Mad that she has seizures. She is getting old enough to understand how all this works. And, she does not like it!!! I hate that for her....
This evening Blitzen amazed me....yet again.... About 7 pm, I was sitting in my family room. Hannah was upstairs in her room. All of the sudden Blitzen started going nuts and alerted me. hmmm. She isn't even in the room. I looked around and saw that her back pack was right beside me. I picked it up and he was all over it!! Stuck his nose in it, around it, alerted me again.... WOW! he was still smelling her seizure from earlier in the day. (she had her back pack on at school). He is one AMAZING dog!!!
All is quiet this evening. Hopefully it will remain quiet all night...
Thursday, September 3, 2009
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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....
2 comments:
It's a love-hate thing I have going on here. I LOVE reading about Blitzen. As a seizure mommy...it's just so kewl to me that this is a tool that we have! But I hate that we need it. I'm with Hannah...I hate seizures.
...danielle
I agree Danielle. But if we are going to hve to seizures, I am SOOO glad we have Blitzen on our side!!
He alerted again on Friday at school. She gets so mad when she has to leave class to go to the clinic. Mad at Blitzen, mad at me, mad at God, mad at seizures....I think those puberty hormones are emerging...ugh. The older she gets, the harder this whole thing gets....
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