Diana Pillas (Out-of-State Coordinator for Johns Hopkins Epilepsy Center) called today and said that we have an appointment for Monday, March 10th with she and Dr. Vining. Diana was very nice, organized and helpful to Cris this afternoon and is a great patient advocate. We appreciate her help in making a our journey from Texas to Maryland a bit easier.
It doesn't sound like a second opionion any more, but more of
a diagnosis confirmation. They have already looked at Jessie's Video
EEG, and the Epilepsis Partial Continua (EPC) is evidently well documented
and presented.
I think that we will tour the Kennedy Krieger Institute (post-hemi rehab center) as well.
Here's a link if you want to check it out:
http://www.kennedykrieger.org/
Tonight we are going to book air, etc. We'll fill you in on the details when we have a complete picture for you.
Cris and Kristi
http://jessiekelley.blogspot.com/
Friday, February 29, 2008
Thursday, February 28, 2008
Sign From Above?
2/28/2008
Dr. Carson is one of the leading surgeons in the world that performs hemispherectomies and is the director of pediatric neurosurgery at Johns Hopkins. I keep hearing about Dr. Carson - even at Kinkos today when I went to FedEx documents and pictures of Jessie to Johns Hopkins, the guy that helped me asked if what I was sending was for the little girl in the picture and if she was my kid. Then he told me about Dr. Carson, the books he has written and that if he was involved, all will be well. Cris and I decided to take that as a good sign!
Kristi
http://jessiekelley.blogspot.com/
Dr. Carson is one of the leading surgeons in the world that performs hemispherectomies and is the director of pediatric neurosurgery at Johns Hopkins. I keep hearing about Dr. Carson - even at Kinkos today when I went to FedEx documents and pictures of Jessie to Johns Hopkins, the guy that helped me asked if what I was sending was for the little girl in the picture and if she was my kid. Then he told me about Dr. Carson, the books he has written and that if he was involved, all will be well. Cris and I decided to take that as a good sign!
Kristi
http://jessiekelley.blogspot.com/
Wednesday, February 27, 2008
Not So Good Day - We Think the Medicine Change May Be Bad
Jessie had a couple of short Simple Partials today at school (eye, hand) and her teacher reported them promptly. Thanks Erin!!
When she got home from school today, she had a bad Complex Partial, and Grandma had to push Diastat. I hate to call these complex partials, because she jerks so much, but it is driven by one side of her body. I still don't think that they have generalized to the right side of her body (Left side of brain). First Time for Grandma to use Diastat, but she did Great, and even cancelled the ambulance call. Thanks Mom!!
Medicines : Today was the second day that she was tapered to 20mg Prednisolone, the first day that she didn't have any Keppra in the morning, and the first day that she had a third (mid-day) 100mg Tegretol. So who know?
It could have been the meds, or it could just be the progression of the disease.
Theresa, Dr. Chacon's nurse from Cooks, is getting the Medical Records sent off to Hopkins. Thanks Theresa!!
Cris
http://jessiekelley.blogspot.com/
When she got home from school today, she had a bad Complex Partial, and Grandma had to push Diastat. I hate to call these complex partials, because she jerks so much, but it is driven by one side of her body. I still don't think that they have generalized to the right side of her body (Left side of brain). First Time for Grandma to use Diastat, but she did Great, and even cancelled the ambulance call. Thanks Mom!!
Medicines : Today was the second day that she was tapered to 20mg Prednisolone, the first day that she didn't have any Keppra in the morning, and the first day that she had a third (mid-day) 100mg Tegretol. So who know?
It could have been the meds, or it could just be the progression of the disease.
Theresa, Dr. Chacon's nurse from Cooks, is getting the Medical Records sent off to Hopkins. Thanks Theresa!!
Cris
http://jessiekelley.blogspot.com/
Tuesday, February 26, 2008
With All This Serious Stuff, Sometimes You Just Need A Good Hug
02/26/2006
Carlie has become Jessies "Bed Buddy" over the past few months.
Today was a hard day, but it was also a good day.
We told Jessie and the boys about the surgery this evening at dinner.
It didn't even phase them....
I want to be in grade school again.
The difference between a good day and a bad day can be determined by something as simple as a good hugging with your dog.
Carlie has become Jessies "Bed Buddy" over the past few months.
Today was a hard day, but it was also a good day.
We told Jessie and the boys about the surgery this evening at dinner.
It didn't even phase them....
Jessie just wanted to know if she had to have another IV. Matt wanted to know how much would have to be taken out. (we dodged that subject for the time being - he gets it.) Jake was still pouting because we made him get off the computer for dinner, and Josh asked if he could buy the new Sonic Hedgehog video game with his "good grade" money.
I want to be in grade school again.
Cris
Talked to Diana Pillas at Johns Hopkins Today - The Wheels are Turning!!
02/26/2008
About 1:30 PM today, I was contacted by Diana Pillas at Johns Hopkins. She is the Out-of-State Coordinator for the Epilepsy Center and seems like a nice lady.
Diana Pillas
Pediatric Epilepsy Center
Meyer 2-147
Johns Hopkins Hospital
600 N. Wolf Street
Baltimore, Maryland 21287-7247
(410) 955-9100
She summarized where we are as follows:
They first heard from Dr. Chacon on 2/20/2008, so “that’s only been a week”.
They never treat Rasmussen’s as an emergency and never recommend surgery in “weeks rather than months”.
Also, she expressed that they don’t classify Rasmussen in stages (I, II, III, IV). **although, I’ve seen this in papers before.
Although she said this nicely, she said that I need to “take a couple of deep breaths”. :-)
Johns Hopkins has done 145 hemispherectomies since the 1980s (a few before that), and average about 9 per year. (math?) Approximately 50% of these are Rasmussen’s patients.
She recommended that when talking to a facility, you need to ask:
1) Speak to families of other hemi patients
2) Preparation for Rehabilitation (Kennedy Kraiger keeps them for 2 weeks)
3) # of hemispherectomies per year and total.
http://jessiekelley.blogspot.com/
About 1:30 PM today, I was contacted by Diana Pillas at Johns Hopkins. She is the Out-of-State Coordinator for the Epilepsy Center and seems like a nice lady.
Diana Pillas
Pediatric Epilepsy Center
Meyer 2-147
Johns Hopkins Hospital
600 N. Wolf Street
Baltimore, Maryland 21287-7247
(410) 955-9100
She summarized where we are as follows:
They first heard from Dr. Chacon on 2/20/2008, so “that’s only been a week”.
They never treat Rasmussen’s as an emergency and never recommend surgery in “weeks rather than months”.
Also, she expressed that they don’t classify Rasmussen in stages (I, II, III, IV). **although, I’ve seen this in papers before.
Although she said this nicely, she said that I need to “take a couple of deep breaths”. :-)
Johns Hopkins has done 145 hemispherectomies since the 1980s (a few before that), and average about 9 per year. (math?) Approximately 50% of these are Rasmussen’s patients.
She recommended that when talking to a facility, you need to ask:
1) Speak to families of other hemi patients
2) Preparation for Rehabilitation (Kennedy Kraiger keeps them for 2 weeks)
3) # of hemispherectomies per year and total.
http://jessiekelley.blogspot.com/
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