Things are still going rough for Hannah. She continues to have an increase in her seizures. I think we will be starting a new medication, Rufinimide, soon. Hopefully it will give her some relief. Her complex partials have been lasting for longer periods of time, sometimes hours. I know this takes a toll on her body (physically and emotionally).
We went today for a check up with her cardiologist. This was the first appointment since we had raised her BP medication. Unfortunately, it didn't go like I thought it would. Her blood pressure remains elevated (some were even higher!!). A very daunting feeling, not knowing why. The cardiologist doesn't know why either. She said she usually sees it go up when 1. the kids become couch potatoes and eat a bunch of salt (not the case, at all!!) or 2. they have a big weight gain (again, not the case. She has lost 2 pounds since March). Cardio decided to put her on a beta blocker to see if this helps. We have another BP check in 2 weeks, a liver enzyme check in 4 weeks and follow up with cardio in 3 months (unless needed sooner). She said if it is still uncontrolled, she will start to get a little more worried about her heart. She will start a bunch of testing to see if a cause can be found....
Monday, June 22, 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....
1 comment:
It just sucks the life outta you doesn't it? I think about it all the time. How I used to be SO energetic. I used to GO everywhere. With the kids! And seizures invaded our life and things haven't been the same...but you get that. Because you live that!
Trevy trialed Rufinamide (I always say Banzel because I'm inevitably asked to spell it...). He really had no nasty side effects. It made him a little wobbly. But he's not so steady on his feet anyway...*smile*
Btw...have you trialed Vigabatrin with Hannah? I know in Canada it's used for Complex Partials? We...used it for Trevy's Infantile Spasms. It didn't help with the seizures. But did great with energy & his cognition seemed enhanced...so I know it at least helped somewhat! Just thought I'd through it out there... It's not FDA approved...although it's pending approval...and from what I've heard it's a shoe in. But the out of pocket cost isn't too outrageous for the time being.
Anyway...I've totally exceeded my nosiness quota! Sorry, hon!
Hope today is going
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