Seizures continue. Just when we think we have a pattern figured out, or possibly a reason for an increase in seizures....it changes. She only had one seizure last week. ONE!!! And yes, it was the one we caught on EEG on Tuesday. Praise the Lord. But, for whatever reason, they have picked back up this week. The school called me Monday with a Blitzen alert. Seizure wasn't too bad. Nothing Tuesday. School called Wednesday with another Blitzen alert. This time he was going nuts (which usually means the seizure will be harder). He did not let us down. It was a doozie. The evening proved to be okay, but she had definite sleep issues last night. She couldn't fall asleep until 10:30 and then woke up at 2 am. She did not fall back asleep until 5 am!!!! whew!!!! Definite sleep deprivation there.
You guessed it. The school called again. Blitzen alerted again. Seizure was middle of the road, as far as her seizures go.
I called Dr. Neuro yesterday and today. No return calls. I am assuming the EEG report is not done yet or I would have gotten a call. I am also assuming there is nothing new with the VNS saga. Dr. Neuro is supposed to be calling TRI CARE to have a peer to peer conference to plead Hannah's case. I don't know if that has been done or not. We are absolutely stuck with no one wanting to pay for her surgery.
Meanwhile, my daughter continues to beg, plead and sometime scream that she wants this surgery to help her seizures go away. It breaks my heart. It really does. I want to put her on the phone with the stupid insurance company and plead her own case.
To sum it up....I am frustrated. so frustrated.....
Thursday, October 8, 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....
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