Not a whole lot of new to report.... We are still waiting to get our appointment scheduled at Riley Children's. Why does the referral process seem to take forever???? I am sure we won't get in until March; unless our pediatrician can pull some strings!!
I am still thinking we need to go to a bigger institution. I have really been looking into options. Right now, Mayo Clinic is the top of my list. They have some really great info on their website and one particular diagnosis that really caught my eye. It really sounded a lot like Hannah; Frontal Lobe Seizures (Epilepsy). Many times, it stated, the seizures are mistaken for psychiatric or sleep disorders. They can get very violent, sometimes yelling obsenitites.... My question is, why has NO ONE ever metioned this??? Maybe I am way off base, but nonetheless, something to look into...
We are started Depakote next week. I cannot wait to see what difference it makes. The diazepam is definitely helping reduce seizures and alerts, but is making her tired. We had to lower the dose so she wasn't so "zombie like" at school. The reduction seemed to help. And, Blitzen only alerted twice at school this week!!!
Please, chime in if you have any good ideas of where I could take Hannah. Somewhere, where they possibly have seen someone like Hannah before.....
Thursday, December 3, 2009
Subscribe to:
Post Comments (Atom)
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:
Hey...did I ever give you Chugani's email??? If you write out a nutshell of Hannah's history...I can also email my neuro and see if she has any ideas? And LAST thought...this week is The American Epilepsy Society meeting in Boston. I would ask your neuro if he is attending...and if he would make sure to bring up Hannah's case to see if anyone else has any ideas? It's a VERY big meeting...neuros from ALL over the world will be there and I bet your neuro will be too. It's the perfect chance to get a bunch of brillant brains together...
((((((((hugs))))))))
It's been a weird crazy week...I'm SO sorry if I dropped the ball! I just can't even remember!
...danielle
Post a Comment