Dr. Neuro was back in the office today (back from a very LONG two week vacation!!). His nurse updated him on Hannah's last two weeks. I had told her we were going to be at the hospital today for her pulmonary appointment so if he wanted to see her , we could be there! He did want to see her. I do love our neurologist!! Our little "trial" to see if school is her biggest stressor, therefore bringing on more seizures, wasn't proving to be true. She has increased her seizures and behavior has definitely gotten worse. So, after an hour long discussion with her wonderful doc, we decided to try another medication. He wants to hold off on the Rufinimide right now. We are trying to figure out if her combativeness and aggression is bringing on the seizures or if it is all pre seizure behavior. We are going to try Clonidine to see if it helps weed out behavior and seizures. We will start it by the end of the week. He wants to check with her cardiologist before we start it. He doesn't want to drop her blood pressure too much. He doesn't know if this will help or not. He said we should know within a few weeks. If not, at least we know VNS is on the way! I know VNS won't be a "cure", but I am hoping for reduction in seizures. At this point, we don't have any other options left. A very daunting thought.
He increased her dosage Valium (unfortunately, I needed to use tonight and still didn't seem to do much good). He wants me to try the Versed again to see if she has another negative reaction.
He has put through the "medical necessity" paperwork to start the process to get the VNS. Once it is approved with insurance we will have an appointment with the neurosurgeon. He thought we would have the surgery by the end of the year.
Dr. Neuro is also referring us back to genetics. We had been there a year and half ago and did all the basic genetic tests (all of which were negative). They will now turn their attention to see if she has something mitochondrial in nature. In order to determine this, she will have to have a skin and muscle biopsy. I really didn't want to put her through this, but I think it is a necessary step at this point.
After this very long appointment, we went to her pulmonary appointment. She started to completely lose control of herself. This is not fun while in front of a doctor!! Since it has been 2 years since her last sleep study, she is ordering another one. She wants to see if her settings need to be changed since she has grown so much! We will schedule this hopefully yet this summer.
Whew! What a day!! (On the the way home, there was an accident on the highway. Traffic was really backed up. It took me twice as long to get home. ugh)... With the long day, and everything building up for Hannah, she had a complex partial seizure and needed Valium. Tomorrow is another day!!
Monday, June 29, 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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