We spent a very long day at the hospital seeing Hannah's different doctors. I guess, in summary, not a whole lot of newness...
Dr. Neuro was not pleased with the increase in her seizures lately. His little trial seemed to confirm his suspicions that school is her biggest stressor. He wants to give her another 2-3 weeks and see how often we are using rescue meds. He said he will live with twice a week, doesn't like it, but will live with it. If we are using it 3 or more times, we have no choice but to start the last med. By the way, Dr. Neuro said today that Vigabatrim has been approved in the U.S. now! Kids are being very carefully monitored by opthamology due to the side affect of loss of peripheral vision... Anyhoo, he isn't too excited to start it. He wants to keep that in our back pocket in case the VNS does not work. SO, he said he will push the insurance company to approve it quickly. Surprisingly, he still thinks we can have the surgery by the end of year. I had almost given up on that idea. He also increased amounts of two of her rescue meds. Hopefully that will help end the seizures faster. I really have a lot of confidence and faith in Dr. Neuro. He really has Hannah's best interests at heart. She loves him because he knows a thing or two about Hannah Montana and I Carly!!!
Dr. Neuro also gave me the update on the genetics testing. (It is so nice everything is on the computer system, so all the doctors know what everyone else is doing) All her genetic testing came back....normal. hmmm. Quite the mixed emotions about this one. Surprised? No. No mother wants to hear that something is wrong with your child, but we already know SOMETHING is wrong, we just don't know what!!!! UUUGGHHH!!! And we are still no closer to knowing either. That is the part that is disheartening.
Dr. Cardio was very pleased with Hannah today. Her blood pressures were very good today. I think we have found the right dose with her meds now. At least for right now. That is subject to change with how fast she is growing. The girl does not stop!!! So, that was good news on that end. We did lab work to check all her levels.
All in all, not much new. We will see how the changes work with the meds and how the next couple of weeks go with seizures....
Friday, August 28, 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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