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/
Letter to Dr. Vining at Johns Hopkins
02/26/2008
At the recommendation of a radiologist friend of ours that looked over Jessie's images this morning, (Thanks Joe and Suzie!!) I have sent emails and voice mails to Dr. Vining and staff myself. This is the letter and message that I communicated this morning. This is rather dry reading, but someday, I hope that it helps others in the same situation. I plan to document everything in hopes of helping others with this struggle.
The letter to Dr. Vining:
Dear Dr. Vining,
My name is Cris Hall, and my daughter Jessie Hall was diagnosed on Wednesday, February 20, 2008 with Rasmussen’s Encephalitis. She is almost 6. Her pediatric neurologist is Dr. Monica Chacon at Cooks Children’s Hospital, Fort Worth Texas. Her case was presented in conference with the neurology staff at Cooks, and they believe that her case is consistent with stage III of Rasmussen’s Encephalitis. A hemispherectomy was recommended, and in a time-frame of “weeks, not months”.
Although we have complete faith in Cooks and Dr. Chacon, We would like a 2nd Opinion from the best person in the field. This will help us to have long-term peace of mind and to know that we did our best for our daughter. From research, your are that person and we desperately need your help, so that we may move forward.
After talking to Dr. Chacon’s office, it appears that we are not getting traction in getting things set up to come to Baltimore to talk with you. I’m not sure what the delay is, but I wanted to personally offer ANY help in breaking down the barriers and getting this off the ground so that we can get Jessie up to Baltimore and move forward.
You can read more about Jessie’s case on her blog at http://www.hallzoo.com/ and click on “Jessie’s Blog” or click on the following link : http://jessiekelley.blogspot.com/
I have all of her MRIs, PET Scans, EEGs on disk and we are ready to get on a plane and come to Baltimore so that we can hear your perspective on her case. We can be in Baltimore as quickly as reasonably possible.
Please call me as soon as you get this, so that we can talk and move forward.
Best Regards,
Cris Hall
817-307-9880 (cell)
682-225-5085 (cell)
http://jessiekelley.blogspot.com/
At the recommendation of a radiologist friend of ours that looked over Jessie's images this morning, (Thanks Joe and Suzie!!) I have sent emails and voice mails to Dr. Vining and staff myself. This is the letter and message that I communicated this morning. This is rather dry reading, but someday, I hope that it helps others in the same situation. I plan to document everything in hopes of helping others with this struggle.
The letter to Dr. Vining:
Dear Dr. Vining,
My name is Cris Hall, and my daughter Jessie Hall was diagnosed on Wednesday, February 20, 2008 with Rasmussen’s Encephalitis. She is almost 6. Her pediatric neurologist is Dr. Monica Chacon at Cooks Children’s Hospital, Fort Worth Texas. Her case was presented in conference with the neurology staff at Cooks, and they believe that her case is consistent with stage III of Rasmussen’s Encephalitis. A hemispherectomy was recommended, and in a time-frame of “weeks, not months”.
Although we have complete faith in Cooks and Dr. Chacon, We would like a 2nd Opinion from the best person in the field. This will help us to have long-term peace of mind and to know that we did our best for our daughter. From research, your are that person and we desperately need your help, so that we may move forward.
After talking to Dr. Chacon’s office, it appears that we are not getting traction in getting things set up to come to Baltimore to talk with you. I’m not sure what the delay is, but I wanted to personally offer ANY help in breaking down the barriers and getting this off the ground so that we can get Jessie up to Baltimore and move forward.
You can read more about Jessie’s case on her blog at http://www.hallzoo.com/ and click on “Jessie’s Blog” or click on the following link : http://jessiekelley.blogspot.com/
I have all of her MRIs, PET Scans, EEGs on disk and we are ready to get on a plane and come to Baltimore so that we can hear your perspective on her case. We can be in Baltimore as quickly as reasonably possible.
Please call me as soon as you get this, so that we can talk and move forward.
Best Regards,
Cris Hall
817-307-9880 (cell)
682-225-5085 (cell)
http://jessiekelley.blogspot.com/
Letter to Dr. Chacon and Dr. Malik - What's Happening with Hopkins?
Special Note Regarding This Post:
When reading this post, keep in mind that we were told just days previous that Jessie needed surgery "within weeks." We were in a definite panic!
Kristi and I are getting concerned as to whether Johns Hopkins is the place for us to seek a second opinion. It has been almost a week since Cooks original contact with them. So we drafted another letter to Jessie's Neurologist and it is presented below.
Dear Dr. Chacon and Dr. Malik,
After talking to you both in the EMU last week, it is our understanding that Jessie needs surgery within weeks, not months. We felt a sense of urgency from you, and we assume that is because you are worried about cognitive and physical decline. Is this true? We also heard someone say that you were worried about it going to the other side of the brain. Did that mean the seizures, or the disease itself?
We know that you have been trying to contact Johns Hopkins for almost a week, to get us in for a Diagnosis Confirmation (2nd Opinion), and we appreciate that so much. With Johns Hopkins lack of response, however, we are beginning to question whether Johns Hopkins is the place to get Jessie’s diagnosis confirmed. What do you think? Are you finding it difficult to get responses back in a reasonable time frame? Are you finding them hard to work with? Do they have too many patients?
We are totally open to any other suggestions for hospitals. For our future psychological health, we need to have Jessie’s diagnosis confirmed. We were hoping that this would be by the “experts”, but we understand that sometimes experts get complacent or too busy to be effective.
Kristi and I are very much leaning toward having the surgery done at Cooks, because of the integrated Rehabilitation Wing (Unlike the Kennedy Krieger Center at Johns Hopkins), the cooperation between groups, and our family support structure being close by. Also, there are so many people at Cooks who are familiar with Jessie’s Case already and you have taken such good care of her in the past.
As you know from working with us in the past, we need a lot of communication, and we don’t feel like you are getting that from Johns Hopkins. Either that, or we are grossly misinterpreting the lack of progress in getting diagnosis confirmation appointments set up with Hopkins. Are we being too impatient? We can understand us getting ignored, but not another physician from another leading hospital. How would they treat Jessie? Do we have time to wait for Johns Hopkins at their current rate of responsiveness? Would you have better luck getting us into Boston Children’s or another facility?
Bottom Line, We need to know that we are doing the best thing for Jessie and things don’t feel that way at the moment.
Physically Jessie is doing very well right now, with the exception of her hand function. The twitching is down to about a “1” (on 1 – 5 scale), and her seizure frequency is lower. We fully expect this to digress as the steroid dose is lowered. We taper to 20mg tomorrow.
Is some form of IVig or other therapy still being considered? For a while, you were talking about trying that or another protocol from Hopkins.
Should we be meeting with the surgeons at Cooks in the interim, while we wait for another facility to agree to meet with us?
Sorry for so many questions, but it is difficult not knowing what is going on, especially after hearing that she needs surgery within weeks.
Sincerely,
Cris and Kristi Hall
http://jessiekelley.blogspot.com/
When reading this post, keep in mind that we were told just days previous that Jessie needed surgery "within weeks." We were in a definite panic!
Kristi and I are getting concerned as to whether Johns Hopkins is the place for us to seek a second opinion. It has been almost a week since Cooks original contact with them. So we drafted another letter to Jessie's Neurologist and it is presented below.
Dear Dr. Chacon and Dr. Malik,
After talking to you both in the EMU last week, it is our understanding that Jessie needs surgery within weeks, not months. We felt a sense of urgency from you, and we assume that is because you are worried about cognitive and physical decline. Is this true? We also heard someone say that you were worried about it going to the other side of the brain. Did that mean the seizures, or the disease itself?
We know that you have been trying to contact Johns Hopkins for almost a week, to get us in for a Diagnosis Confirmation (2nd Opinion), and we appreciate that so much. With Johns Hopkins lack of response, however, we are beginning to question whether Johns Hopkins is the place to get Jessie’s diagnosis confirmed. What do you think? Are you finding it difficult to get responses back in a reasonable time frame? Are you finding them hard to work with? Do they have too many patients?
We are totally open to any other suggestions for hospitals. For our future psychological health, we need to have Jessie’s diagnosis confirmed. We were hoping that this would be by the “experts”, but we understand that sometimes experts get complacent or too busy to be effective.
Kristi and I are very much leaning toward having the surgery done at Cooks, because of the integrated Rehabilitation Wing (Unlike the Kennedy Krieger Center at Johns Hopkins), the cooperation between groups, and our family support structure being close by. Also, there are so many people at Cooks who are familiar with Jessie’s Case already and you have taken such good care of her in the past.
As you know from working with us in the past, we need a lot of communication, and we don’t feel like you are getting that from Johns Hopkins. Either that, or we are grossly misinterpreting the lack of progress in getting diagnosis confirmation appointments set up with Hopkins. Are we being too impatient? We can understand us getting ignored, but not another physician from another leading hospital. How would they treat Jessie? Do we have time to wait for Johns Hopkins at their current rate of responsiveness? Would you have better luck getting us into Boston Children’s or another facility?
Bottom Line, We need to know that we are doing the best thing for Jessie and things don’t feel that way at the moment.
Physically Jessie is doing very well right now, with the exception of her hand function. The twitching is down to about a “1” (on 1 – 5 scale), and her seizure frequency is lower. We fully expect this to digress as the steroid dose is lowered. We taper to 20mg tomorrow.
Is some form of IVig or other therapy still being considered? For a while, you were talking about trying that or another protocol from Hopkins.
Should we be meeting with the surgeons at Cooks in the interim, while we wait for another facility to agree to meet with us?
Sorry for so many questions, but it is difficult not knowing what is going on, especially after hearing that she needs surgery within weeks.
Sincerely,
Cris and Kristi Hall
http://jessiekelley.blogspot.com/
Monday, February 25, 2008
Waiting for Word from Johns Hopkins
02/25/2008 1:00
Kristi just got off the phone with Theresa at Dr. Chacon's office at Cooks with an update. Theresa said that Dr. Chacon has 2 calls into Johns Hopkins (personally), but as of yet there is no word. Kristi said that she gets the feeling that Johns Hopkins isn't being very responsive.
I wrote a note to a friend in North Carolina who used JH and the Neurologist there for her daughter, and asked if she could put in a good word for us and maybe get a response. We'll let you know as soon as we know.
Cris
http://jessiekelley.blogspot.com/
Kristi just got off the phone with Theresa at Dr. Chacon's office at Cooks with an update. Theresa said that Dr. Chacon has 2 calls into Johns Hopkins (personally), but as of yet there is no word. Kristi said that she gets the feeling that Johns Hopkins isn't being very responsive.
I wrote a note to a friend in North Carolina who used JH and the Neurologist there for her daughter, and asked if she could put in a good word for us and maybe get a response. We'll let you know as soon as we know.
Cris
http://jessiekelley.blogspot.com/
Jessie's Fund
After being encouraged by several people who wanted to help out financially, a fund has been set up in Jessie's name. This fund will be used solely to offset expenses such as medical, travel, etc...
Jessie’s Fund
Contributions can be made to :
Jessica Kelley Hall
Unity One Federal Credit Union
6701 Burlington Boulevard
Fort Worth, TX 76131
Call Center : (817) 306-3100
Fax : (817) 306-3101
http://jessiekelley.blogspot.com/
Jessie’s Fund
Contributions can be made to :
Jessica Kelley Hall
Unity One Federal Credit Union
6701 Burlington Boulevard
Fort Worth, TX 76131
Call Center : (817) 306-3100
Fax : (817) 306-3101
http://jessiekelley.blogspot.com/
Saturday, February 23, 2008
The Cowtown 5K
02/23/2008
Today was a great day. We got to go run (or mostly walk) the Cowtown Marathon (uh, actually the Kids 5K) in downtown Ft. Worth.
Matt, Jake, Josh, and Jessie all finished in about an hour. Afterwards, Matt, Jake and Josh All had baseball practice. Matt managed practice even with fever. Jessie hit balls off the T and worked on grounders, catching, and throwing.
We all came home and took a nap. Ahhhhhh, paradise.....
http://jessiekelley.blogspot.com/
Today was a great day. We got to go run (or mostly walk) the Cowtown Marathon (uh, actually the Kids 5K) in downtown Ft. Worth.
Matt, Jake, Josh, and Jessie all finished in about an hour. Afterwards, Matt, Jake and Josh All had baseball practice. Matt managed practice even with fever. Jessie hit balls off the T and worked on grounders, catching, and throwing.
We all came home and took a nap. Ahhhhhh, paradise.....
http://jessiekelley.blogspot.com/
Jessie's Wish
02/22/2008
Today, Jessie got a letter in the mail from the Make-A-Wish Foundation. She has been granted a wish from this wonderful organization. Any wish that she wants.
She is supposed to dig deep and dream whatever she has always dreamed of, no matter how big. To use her beautiful imagination to dream the impossible, the fantastic, the adventurous.
My guess is that she will wish for a chocolate donut with sprinkles.....
I can't wait to see what she wishes.
Cris
Today, Jessie got a letter in the mail from the Make-A-Wish Foundation. She has been granted a wish from this wonderful organization. Any wish that she wants.
She is supposed to dig deep and dream whatever she has always dreamed of, no matter how big. To use her beautiful imagination to dream the impossible, the fantastic, the adventurous.
My guess is that she will wish for a chocolate donut with sprinkles.....
I can't wait to see what she wishes.
Cris
Thanks
02/21/2008
Thanks to all of the people that have helped us through the past 7 months and we are so sorry that we will continue to need your support and help as we move forward. We are really just at the begining now.
Thanks to our parents and family for helping out with the kids, and the constant communication over the phone and email to keep us from having a nervous breakdown.
Mom, Dad, and Gail. Nancy and Gary. - There are no parents better than all of you.
Cindy - Thanks for all the drug advice
Michelle - Thanks for being there for your big sis.
Erin - You are the best K teacher in the world to keep such a positive attitude through all of this. I know that you truely love Jessie.
Robin - You are the best Principal in the world. I will never forget you trying to get into the ambulance with Jessie to go to the hospital after her bad seizure at school.
Marcia - You are the best Nurse in the world for not being afraid of diastat, and Jessie's continuous visits into your office.
Our Co-Workers for covering for us and providing support, empathy, and encouragement.
Everyone at BNSF, especially Jeff, Bill, Lisa, and Valorie.
Everyone at Alcon, especially Bill, Rebecca, Jim, Paula, Quinn, Terry, John, and Chris.
Our many friends for listening to our constant ramblings as this unfolded.
Chris and Cody
Tim and Dianne
Todd and Susie
Kevin and Lisa
Greg
and many others
Our new friends on the internet who have already bravely gone through this process.
Shelly
Lynn
And especially Jessie who has taught us so many lessons over the past 7 months that we could have never learned on our own.
http://jessiekelley.blogspot.com/
Thanks to all of the people that have helped us through the past 7 months and we are so sorry that we will continue to need your support and help as we move forward. We are really just at the begining now.
Thanks to our parents and family for helping out with the kids, and the constant communication over the phone and email to keep us from having a nervous breakdown.
Mom, Dad, and Gail. Nancy and Gary. - There are no parents better than all of you.
Cindy - Thanks for all the drug advice
Michelle - Thanks for being there for your big sis.
Erin - You are the best K teacher in the world to keep such a positive attitude through all of this. I know that you truely love Jessie.
Robin - You are the best Principal in the world. I will never forget you trying to get into the ambulance with Jessie to go to the hospital after her bad seizure at school.
Marcia - You are the best Nurse in the world for not being afraid of diastat, and Jessie's continuous visits into your office.
Our Co-Workers for covering for us and providing support, empathy, and encouragement.
Everyone at BNSF, especially Jeff, Bill, Lisa, and Valorie.
Everyone at Alcon, especially Bill, Rebecca, Jim, Paula, Quinn, Terry, John, and Chris.
Our many friends for listening to our constant ramblings as this unfolded.
Chris and Cody
Tim and Dianne
Todd and Susie
Kevin and Lisa
Greg
and many others
Our new friends on the internet who have already bravely gone through this process.
Shelly
Lynn
And especially Jessie who has taught us so many lessons over the past 7 months that we could have never learned on our own.
http://jessiekelley.blogspot.com/
Moving Forward with the help of God and our Family and a little Humor
02/21/2008
Dear Family, Friends, and those Concerned for Jessie, I am so sorry that I have had to tell you the news that you have just read in the previous posts. I am almost caught up to the real date, and after that, this will be our primary correspondence with those that are concerned or interested. This way, I will not forget to communicate, and we can communicate how Jessie is doing from anywhere in the world.
From this day forward, We promise to try to stay upbeat and positive for Jessie's sake. Please feel free to put her on prayer lists, light candles, or anything else that you think might help.
Please don't be afraid to call us or come by and visit. Jessie doesn't know what is going on, and she is still a happy little girl, that loves to talk and sing, and will make you laugh over and over again. She is still in school, and doing fine. Please don't run away from her.
We are all confronting this head on. Don't be afraid to ask us if you have a question. Also, children's brains are very elastic, and her left brain will just have to start doing some of the things that her right half had to do before.
Who knows, Johns Hopkins might tell us that it is something else, give her a shot, and she'll be cured forever. Only god knows what is next for Jessie and us. We have a strong family bond and we will get through this.
Dear Family, Friends, and those Concerned for Jessie, I am so sorry that I have had to tell you the news that you have just read in the previous posts. I am almost caught up to the real date, and after that, this will be our primary correspondence with those that are concerned or interested. This way, I will not forget to communicate, and we can communicate how Jessie is doing from anywhere in the world.
From this day forward, We promise to try to stay upbeat and positive for Jessie's sake. Please feel free to put her on prayer lists, light candles, or anything else that you think might help.
Please don't be afraid to call us or come by and visit. Jessie doesn't know what is going on, and she is still a happy little girl, that loves to talk and sing, and will make you laugh over and over again. She is still in school, and doing fine. Please don't run away from her.
We are all confronting this head on. Don't be afraid to ask us if you have a question. Also, children's brains are very elastic, and her left brain will just have to start doing some of the things that her right half had to do before.
Who knows, Johns Hopkins might tell us that it is something else, give her a shot, and she'll be cured forever. Only god knows what is next for Jessie and us. We have a strong family bond and we will get through this.
2nd Opinion - Johns Hopkins Medical Center - Baltimore, Maryland
02/20/2008
Thanks to some advice from our new friend Shelly in North Carolina, and a lot of research, we know that we need to go to Johns Hopkins Medical Center in Baltimore Maryland for a second opinion or at least a diagnosis confirmation. The top Rasmussen's experts in the nation is there at Johns Hopkins. Her name is Dr. Vining
I have picked up the CDs that contain 5 MRIs, 2 PETs, Many minutes of Video EEG, and other information. Our Neurologist wants the second opinion from Johns Hopkins as badly as we do and they have bent over backwards to get the information faxed over and get appointments set up for us in Baltimore.
We will be flying out as soon as everything is arranged. They are all so great at Cooks. We have not had to do a thing to coordinate with Johns Hopkins, and Our doctor has already been in contact with Dr. Vining.
If the diagnosis is concerned by Johns Hopkins, we are not sure where we will have the surgery done.
http://jessiekelley.blogspot.com/
Thanks to some advice from our new friend Shelly in North Carolina, and a lot of research, we know that we need to go to Johns Hopkins Medical Center in Baltimore Maryland for a second opinion or at least a diagnosis confirmation. The top Rasmussen's experts in the nation is there at Johns Hopkins. Her name is Dr. Vining
I have picked up the CDs that contain 5 MRIs, 2 PETs, Many minutes of Video EEG, and other information. Our Neurologist wants the second opinion from Johns Hopkins as badly as we do and they have bent over backwards to get the information faxed over and get appointments set up for us in Baltimore.
We will be flying out as soon as everything is arranged. They are all so great at Cooks. We have not had to do a thing to coordinate with Johns Hopkins, and Our doctor has already been in contact with Dr. Vining.
If the diagnosis is concerned by Johns Hopkins, we are not sure where we will have the surgery done.
http://jessiekelley.blogspot.com/
Rasmussen's Encephalitis
02/20/2008
This morning, Jessie's case was reviewed with the 20 or so Neurologist team at Cooks Children's Hospital in Fort Worth, Texas. They were in agreement that Jessie's clinical picture was consistent with Rasmussen's Encephalitis (RE). http://www.ninds.nih.gov/disorders/rasmussen/rasmussen.htm
They believe that she is in Stage III of RE.
The NeuroPsycologist believes that she is showing signs of cognitive impairment and the physical impairment is obvious.
We have noticed that she has a harder time finding words these days.
The PET scan shows reds and yellows on the left side (good sugar uptake), while the back-half of the right side shows blues and greens indicating poor sugar uptake. The MRI shows that the folds are widening which indicates atrophy.
The Neurologist Team recommends a Right Hemispherectomy (Removal of the entire right half of Jessie's Brain). They believe that it needs to be done urgently in weeks and not months.
Kristi and I, and the Neurology team believe that we need to go to the experts on this disease at Johns Hopkins in Baltimore, Marland for a second opinion.
http://jessiekelley.blogspot.com/
This morning, Jessie's case was reviewed with the 20 or so Neurologist team at Cooks Children's Hospital in Fort Worth, Texas. They were in agreement that Jessie's clinical picture was consistent with Rasmussen's Encephalitis (RE). http://www.ninds.nih.gov/disorders/rasmussen/rasmussen.htm
They believe that she is in Stage III of RE.
The NeuroPsycologist believes that she is showing signs of cognitive impairment and the physical impairment is obvious.
We have noticed that she has a harder time finding words these days.
The PET scan shows reds and yellows on the left side (good sugar uptake), while the back-half of the right side shows blues and greens indicating poor sugar uptake. The MRI shows that the folds are widening which indicates atrophy.
The Neurologist Team recommends a Right Hemispherectomy (Removal of the entire right half of Jessie's Brain). They believe that it needs to be done urgently in weeks and not months.
Kristi and I, and the Neurology team believe that we need to go to the experts on this disease at Johns Hopkins in Baltimore, Marland for a second opinion.
http://jessiekelley.blogspot.com/
Dr. Malik Update in the EMU
02/19/2008
Dr. Malik reviewed the most recent MRI. He believes that there is some athrophy and shrinkage in the right hemispher of Jessie's brain, especially in the back.
He believes that the PET scan pictures will give us a better indication of what is going on.
In addition, there is continued slowing of her brain waves on the right side.
They plan to try IVig (IV Immunoglobulin)
They will present Jessie's case at the Neurologist Conference tomorrow and let us know what they think.
http://jessiekelley.blogspot.com/
Dr. Malik reviewed the most recent MRI. He believes that there is some athrophy and shrinkage in the right hemispher of Jessie's brain, especially in the back.
He believes that the PET scan pictures will give us a better indication of what is going on.
In addition, there is continued slowing of her brain waves on the right side.
They plan to try IVig (IV Immunoglobulin)
They will present Jessie's case at the Neurologist Conference tomorrow and let us know what they think.
http://jessiekelley.blogspot.com/
Back in the hospital for another LP, MRI, and PET scan
02/18/2008
Jessie is back in the hospital again. This time, we will be in the Epilepsy Monitoring Unit until Wednesday. More wires on her head and lots of IVs, and blood draws. Dr. Malik is looking at Celiac Disease maybe. Dr. Chacon had mentioned something about a Dopa-Receptor Dystonia, and of course Rasmussen's Encephalitis is always in the back of our mind.
Dr. Malik has hooked up two leads to Jessie's hand, and has the camera focused on her hand to see if he can see a correlation between her hand twitching and her epileptic spikes. If this correlation is made, it indicateds Epilepsia Partialis Continua (EPC), or Continuous Partial Epilepsy. This would mean that she has a continuous seizure and this is a common indicator in Rasmussen's Encephalitis.
Through all of this, Jessie is so tough. She still finds a reason to laugh and try to trick the nurses into being tickled.
http://jessiekelley.blogspot.com/
Jessie is back in the hospital again. This time, we will be in the Epilepsy Monitoring Unit until Wednesday. More wires on her head and lots of IVs, and blood draws. Dr. Malik is looking at Celiac Disease maybe. Dr. Chacon had mentioned something about a Dopa-Receptor Dystonia, and of course Rasmussen's Encephalitis is always in the back of our mind.
Dr. Malik has hooked up two leads to Jessie's hand, and has the camera focused on her hand to see if he can see a correlation between her hand twitching and her epileptic spikes. If this correlation is made, it indicateds Epilepsia Partialis Continua (EPC), or Continuous Partial Epilepsy. This would mean that she has a continuous seizure and this is a common indicator in Rasmussen's Encephalitis.
Through all of this, Jessie is so tough. She still finds a reason to laugh and try to trick the nurses into being tickled.
http://jessiekelley.blogspot.com/
Back to High-Dose Steroid per Dr. Chacon
02/13/2008
Dr. Chacon has put Jessie back on high-dose steroids (40mg) with taper.
http://jessiekelley.blogspot.com/
Dr. Chacon has put Jessie back on high-dose steroids (40mg) with taper.
http://jessiekelley.blogspot.com/
Letter to Dr. Chacon
02/13/2008
Jessie's dexterity and use of her left hand is almost nil. She will use it if we ask her to, but otherwise, it just hangs. Yesterday morning, I watched her hold her cereal bowl with her chin so that it wouldn't slide off the bar when she spooned some cereal. Her twitching is the worst ever. We don't know what to do or where to turn.
I can't sleep tonight, so I get up at 2:00AM and send the following letter to Dr. Chacon and Theresa her nurse.
Dear Dr. Chacon,
In the EMU, on 12/14/2007, Dr. Malik diagnosed Jessie with Focal Encephalitis. She was put on a high-dose steroid cycle, which temporarily ended the continuous twitching in her left hand, returned the function of her left hand, and significantly reduced her Simple Partial Seizures; an indication of reduced inflammation in her brain.
On 02/12/2008, and prior, we reported that the twitching was back and worse, and that she had lost almost all use of her left hand.
1.) Has the diagnosis changed?
2.) If not, why are we experimenting with Anticonvulsants instead of going after the root cause and reducing the inflammation in her brain before she has permanently lost function in her left hand and arm or worse?
3.) Are we waiting for test results? Realistically, how long can we wait before we risk Jessie losing function in her left hand and arm permanently?
As parents, we have an innate feeling that something is dreadfully wrong and that the symptoms (seizures) are being treated, and not the root cause (encephalitis). We can cope with her simple partial seizures (hers are short, and don’t hinder her day), but losing function in her left hand and arm are driving us both toward a nervous breakdown.
Sincerely,
Cris and Kristi Hall
http://jessiekelley.blogspot.com/
Jessie's dexterity and use of her left hand is almost nil. She will use it if we ask her to, but otherwise, it just hangs. Yesterday morning, I watched her hold her cereal bowl with her chin so that it wouldn't slide off the bar when she spooned some cereal. Her twitching is the worst ever. We don't know what to do or where to turn.
I can't sleep tonight, so I get up at 2:00AM and send the following letter to Dr. Chacon and Theresa her nurse.
Dear Dr. Chacon,
In the EMU, on 12/14/2007, Dr. Malik diagnosed Jessie with Focal Encephalitis. She was put on a high-dose steroid cycle, which temporarily ended the continuous twitching in her left hand, returned the function of her left hand, and significantly reduced her Simple Partial Seizures; an indication of reduced inflammation in her brain.
On 02/12/2008, and prior, we reported that the twitching was back and worse, and that she had lost almost all use of her left hand.
1.) Has the diagnosis changed?
2.) If not, why are we experimenting with Anticonvulsants instead of going after the root cause and reducing the inflammation in her brain before she has permanently lost function in her left hand and arm or worse?
3.) Are we waiting for test results? Realistically, how long can we wait before we risk Jessie losing function in her left hand and arm permanently?
As parents, we have an innate feeling that something is dreadfully wrong and that the symptoms (seizures) are being treated, and not the root cause (encephalitis). We can cope with her simple partial seizures (hers are short, and don’t hinder her day), but losing function in her left hand and arm are driving us both toward a nervous breakdown.
Sincerely,
Cris and Kristi Hall
http://jessiekelley.blogspot.com/
The twitching is back - Back to the Hospital - Let's try Zonegran
02/06/2008
Jessie's hand twitches constantly again and as bad as back in December. Dr. Chacon wants to try Zonegran, so we do. The twitching doesn't get any better and Jessie does some really strange things. She begins to talk nonsense, and has some SPS with visual disturbances. One, she lost most sight for a few seconds.
So we discontinue Zonegran and let Dr. Chacon know.
The Simple Partial Seizures are back to about one per day again, and she has lost so much function in her hand that she doesn't like to use it. It mostly just hangs down. She CAN use it if you ask her to, but she doesn't like to.
At this point, Kristi and I are more scared than we've been since this whole nightmare started in August of 2007. We feel like there is something dreadfully wrong.
http://jessiekelley.blogspot.com/
Jessie's hand twitches constantly again and as bad as back in December. Dr. Chacon wants to try Zonegran, so we do. The twitching doesn't get any better and Jessie does some really strange things. She begins to talk nonsense, and has some SPS with visual disturbances. One, she lost most sight for a few seconds.
So we discontinue Zonegran and let Dr. Chacon know.
The Simple Partial Seizures are back to about one per day again, and she has lost so much function in her hand that she doesn't like to use it. It mostly just hangs down. She CAN use it if you ask her to, but she doesn't like to.
At this point, Kristi and I are more scared than we've been since this whole nightmare started in August of 2007. We feel like there is something dreadfully wrong.
http://jessiekelley.blogspot.com/
A Bad Febrile Seizure - Back to Cooks ER
01/20/2008
I'm not sure how many times Jessie has been in an ambulance now, but I know that it is too many for a 5 year-old.
Jessie was running a high fever (103+) (turned out to be a UI infection), and it triggered a bad seziure. It was kinda Complex Partial, and kinda Tonic Clonic on the left side. UGLY Seizure. Diastat (her rescue medicine) didn't work, and so we called 911. Luckily, she went post-ictal about the time that they got to our house...so that seizure went about 20 minutes.
She spent the night in Cooks for observation and we went home the next day. Our great neighbors Joe, Cass, and their kids watched the boys until my Mom could get over to take care of everything.
http://jessiekelley.blogspot.com/
I'm not sure how many times Jessie has been in an ambulance now, but I know that it is too many for a 5 year-old.
Jessie was running a high fever (103+) (turned out to be a UI infection), and it triggered a bad seziure. It was kinda Complex Partial, and kinda Tonic Clonic on the left side. UGLY Seizure. Diastat (her rescue medicine) didn't work, and so we called 911. Luckily, she went post-ictal about the time that they got to our house...so that seizure went about 20 minutes.
She spent the night in Cooks for observation and we went home the next day. Our great neighbors Joe, Cass, and their kids watched the boys until my Mom could get over to take care of everything.
http://jessiekelley.blogspot.com/
Dr. Chacon bumped up the Steroid again.
01/17/2008
Dr. Chacon, after hearing that the twitching had returned, bumped up Jessie's steroid dose to 20 mg with taper. The finger twitching didn't go away this time and the Simple Partial Seizures are returning.
http://jessiekelley.blogspot.com/
Dr. Chacon, after hearing that the twitching had returned, bumped up Jessie's steroid dose to 20 mg with taper. The finger twitching didn't go away this time and the Simple Partial Seizures are returning.
http://jessiekelley.blogspot.com/
Twitching is Coming Back as the Steroid is Reduced
01/13/2008
Jessie has been tapering on the steroids and is down to 10mg doses daily (she started at 40mg). Last night, we noticed a little twitch in Jessie's left fingers. It was not bad, but it broke our hearts. She also had another Simple Partial.
http://jessiekelley.blogspot.com/
Jessie has been tapering on the steroids and is down to 10mg doses daily (she started at 40mg). Last night, we noticed a little twitch in Jessie's left fingers. It was not bad, but it broke our hearts. She also had another Simple Partial.
http://jessiekelley.blogspot.com/
Reduce Keppra
1/10/2008
Jessie has only had 3 Simple Partial Seizures since 12/14/2007, so we are going to reduce the dose of Keppra a little. To be honest with you, I don't think that the Keppra does much, and these AED (Anti-Epileptic Drugs) are kinda scary, brain drugs.
http://jessiekelley.blogspot.com/
Jessie has only had 3 Simple Partial Seizures since 12/14/2007, so we are going to reduce the dose of Keppra a little. To be honest with you, I don't think that the Keppra does much, and these AED (Anti-Epileptic Drugs) are kinda scary, brain drugs.
http://jessiekelley.blogspot.com/
Happy New Year!!! Welcome 2008!!!
01/01/2008
Happy New Year to Everyone! We are so optimistic abou the New Year. Jessie has only had one Simple Partial Seizure since she went on steroids, the twitching is gone and she is regaining function in her left hand and fingers. She does a "peace sign" or "peace baby" as we call it very well, and she is starting to use her left hand again. It is so wonderful to see and so encouraging that maybe we have this thing beaten.
We went out with our friends Tim, Diane, Casey, and Jared last night and had a good time. We ended up back at our place singing on Jessie's Kareokee machine. She was furious that we kept her up singing on HER christmas "singing machine". We may have had one two many beers or glasses of wine, but it was a fun time to celebrate Jessie and life in general.
The boys played video games upstairs until way past their bed-time. They enjoyed their own paradise.
Cris
http://jessiekelley.blogspot.com/
Happy New Year to Everyone! We are so optimistic abou the New Year. Jessie has only had one Simple Partial Seizure since she went on steroids, the twitching is gone and she is regaining function in her left hand and fingers. She does a "peace sign" or "peace baby" as we call it very well, and she is starting to use her left hand again. It is so wonderful to see and so encouraging that maybe we have this thing beaten.
We went out with our friends Tim, Diane, Casey, and Jared last night and had a good time. We ended up back at our place singing on Jessie's Kareokee machine. She was furious that we kept her up singing on HER christmas "singing machine". We may have had one two many beers or glasses of wine, but it was a fun time to celebrate Jessie and life in general.
The boys played video games upstairs until way past their bed-time. They enjoyed their own paradise.
Cris
http://jessiekelley.blogspot.com/
Merry Christmas 2007 !!!!!
12/25/2007
Merry Christmas, Feliz Navidad!!!! Christ Our Savior is Born!!!
Jessie has had a WONDERFUL two weeks!! Her twitching is almost completely gone and she hasn't had a seizure in about 2 weeks. I wish that she could stay on Steroids forever, but unfortunately the long-term side effects won't allow it.
We all had a great Christmas, and Santa Claus was good to the kids beyond belief. They each got an Electronic Keyboard so that they can practice piano in their rooms. The boys are getting really good from all of their lessons and I guess Santa rewarded them for that.
Matt got a Telescope, Jake and Josh Remote-Control Alien Bug Thingy-ma-Jiggers, and our singer Jessie got a Karioke Machine. She is so fun to watch as she entertains us. We have our old Jessie Back !!!!
What a Christmas present!!! Merry Christmas to everyone!!!!
Cris, Kristi, Matt, Jake, Josh, and Jessie.
http://jessiekelley.blogspot.com/
Merry Christmas, Feliz Navidad!!!! Christ Our Savior is Born!!!
Jessie has had a WONDERFUL two weeks!! Her twitching is almost completely gone and she hasn't had a seizure in about 2 weeks. I wish that she could stay on Steroids forever, but unfortunately the long-term side effects won't allow it.
We all had a great Christmas, and Santa Claus was good to the kids beyond belief. They each got an Electronic Keyboard so that they can practice piano in their rooms. The boys are getting really good from all of their lessons and I guess Santa rewarded them for that.
Matt got a Telescope, Jake and Josh Remote-Control Alien Bug Thingy-ma-Jiggers, and our singer Jessie got a Karioke Machine. She is so fun to watch as she entertains us. We have our old Jessie Back !!!!
What a Christmas present!!! Merry Christmas to everyone!!!!
Cris, Kristi, Matt, Jake, Josh, and Jessie.
http://jessiekelley.blogspot.com/
Jessie on our Mind
12/21/2007
Jessie is on my mind all the time now. From the time that we wake up in the morning, until the time that we go to bed at night. I wake up in the middle of the night and do research on the internet. Kristi is just as concerned and sleeps very lightly, and wakes up constantly through the night to check on Jessie. We are so afraid that she will have a seizure at night and us not know it...or throw-up and aspirate. We have a video monitor in her room now, so Kristi doesn't have to get out of bed to check on her. It is loud and pops all night so our sleeping is less and less. Kristi looks so tired these days, and I worry about her health. She is such a good Mom.
http://jessiekelley.blogspot.com/
Jessie is on my mind all the time now. From the time that we wake up in the morning, until the time that we go to bed at night. I wake up in the middle of the night and do research on the internet. Kristi is just as concerned and sleeps very lightly, and wakes up constantly through the night to check on Jessie. We are so afraid that she will have a seizure at night and us not know it...or throw-up and aspirate. We have a video monitor in her room now, so Kristi doesn't have to get out of bed to check on her. It is loud and pops all night so our sleeping is less and less. Kristi looks so tired these days, and I worry about her health. She is such a good Mom.
http://jessiekelley.blogspot.com/
Remembering Lem
12/20/2007
A year ago today, we buried one of our dearest friends Lem Allen. He was a huge influence in my life and introduced me to Texas Tech, where I met the future mother of my chilren and life-mate...Kristi. He was a huge influence in my love of music and the arts. He introduced me to travel and my love of the interior of Mexico. He never judged and always listened. He was caring an compasionate. He will be greatly missed.
http://jessiekelley.blogspot.com/
A year ago today, we buried one of our dearest friends Lem Allen. He was a huge influence in my life and introduced me to Texas Tech, where I met the future mother of my chilren and life-mate...Kristi. He was a huge influence in my love of music and the arts. He introduced me to travel and my love of the interior of Mexico. He never judged and always listened. He was caring an compasionate. He will be greatly missed.
http://jessiekelley.blogspot.com/
Steroids - We hope there isn't a T-Ball "Juicing Scandal"
12/16/2007
OK, Jessie is on a 6 week cycle of Steroids in hopes that it will take care of this "Focal Encephalitis". We are hopeful and optimistic as Christmas nears.
She will be on high-doses of steroids (Prednisone) and we will probably see some weight gain, puffy cheeks, and some hyper activity. That's OK with us if it fixes this thing.
Also, a disease called Rasmussen's Encephalitis (RE) was discussed at the hospital. I'd read some about it. The neurologist didn't seem to think that it was presenting like RE, but they couldn't rule it out. One good sign is that they couldn't correlate Jessie's finger twitching with the epileptic spikes on her EEG. So that was a good sign that this probably wasn't Rasmussen's Encephalitis.
Rasmussen's Encephalitis is a really, really, really scary disease. We are praying that it isn't that.
Cris
http://jessiekelley.blogspot.com/
OK, Jessie is on a 6 week cycle of Steroids in hopes that it will take care of this "Focal Encephalitis". We are hopeful and optimistic as Christmas nears.
She will be on high-doses of steroids (Prednisone) and we will probably see some weight gain, puffy cheeks, and some hyper activity. That's OK with us if it fixes this thing.
Also, a disease called Rasmussen's Encephalitis (RE) was discussed at the hospital. I'd read some about it. The neurologist didn't seem to think that it was presenting like RE, but they couldn't rule it out. One good sign is that they couldn't correlate Jessie's finger twitching with the epileptic spikes on her EEG. So that was a good sign that this probably wasn't Rasmussen's Encephalitis.
Rasmussen's Encephalitis is a really, really, really scary disease. We are praying that it isn't that.
Cris
http://jessiekelley.blogspot.com/
Diagnosis - Focal Encephalitis in the Right Occipital Lobe
12/15/2007
This is a letter that I sent out to everyone that might be concerned for Jessie after we were discharged from Cooks on 12/15/2007.
To Everyone that knows our daughter Jessie,
Thank You so much for all of the support and encouragement that you have given us over the past 5 months. From the school, to our friends, to our family, everyone has been great, and we appreciate it so much. Also, we apologize for not keeping everyone up to date. We realize that this is new news to some of you, and we apologize for that. We also apologize if we have missed anyone and they receive this email second hand.
In August, Jessie had her first seizure, and in September, she was diagnosed with Focal Onset Seizure Disorder (A fancy word for Epilepsy). Her seizures were not what most people think of seizures, like what you see in movies. Most of her seizures were blank stares and small movements. Anyway, after many doctors visits, neurologist, epileptologist, and hospital visits…and after being scanned with MRIs, EEGs, CATs, PETs, blood tests, spinal tap, and lots of other stuff that we don’t understand, Jessie received a new diagnosis last night at Cook’s Children’s Hospital after being Video EEG monitored for 3 days. She is out of the hospital and home with us.
She was diagnosed with Focal Encephalitis. This is NOT an infectious or contagious disease or a disease at all for that matter. It is a condition that is the result of a one in a million freak occurrence. It could have come from literally hundreds of different things or she may have been born with it. It caused a small lesion in the occipital lobe of her brain (back of her head) about the size of a quarter. It is not a tumor or cancer. You can’t catch it.
She will be treated with Anabolic Steroids for 7 weeks. So watch out Barry Bonds in T-Ball next year she will be juiced up J. The best case scenario will be that the steroids stop the spread of the lesion and she is completely cured. That is what we hope and pray and ask you to do the same. The prognosis is good for treating this type of condition with steroids.
For those of you that are around Jessie on a day-to-day basis, here are some side effects that you may see from the steroids.
1) She may be a bit grumpy (which as you know is not at all her personality), so be patient with her
2) She may put on some weight temporarily
3) She will be more susceptible to infections (so keep those hands washed)
She has a hard time moving her left hand the way she wants to, because of the seizure activity, but we hope this will clear up as well.
Many of you have asked if there is anything that you can do, and we appreciate the thought. What Jessie needs now, the most, is just to be treated normally. You can welcome her back from the hospital or just say hi. Just be normal, because that is what she is. She hasn’t lost any mental capacity at all. She is the same sweet Jessie that you have all come to know and love that likes to read and sing songs and play and be a little girl. She will be back at school on Monday.
Sorry for such a long email, and we will try to keep everyone up to date on the progress. Please feel free to pass this along to anyone that you know would be interested. If you have any questions, do be afraid to call us or send us an email. We don’t mind talking about this at all, and we are being very open with it to her and everyone we know.
Warm Christmas Wishes to Everyone,
Cris and Kristi Hall
http://jessiekelley.blogspot.com/
This is a letter that I sent out to everyone that might be concerned for Jessie after we were discharged from Cooks on 12/15/2007.
To Everyone that knows our daughter Jessie,
Thank You so much for all of the support and encouragement that you have given us over the past 5 months. From the school, to our friends, to our family, everyone has been great, and we appreciate it so much. Also, we apologize for not keeping everyone up to date. We realize that this is new news to some of you, and we apologize for that. We also apologize if we have missed anyone and they receive this email second hand.
In August, Jessie had her first seizure, and in September, she was diagnosed with Focal Onset Seizure Disorder (A fancy word for Epilepsy). Her seizures were not what most people think of seizures, like what you see in movies. Most of her seizures were blank stares and small movements. Anyway, after many doctors visits, neurologist, epileptologist, and hospital visits…and after being scanned with MRIs, EEGs, CATs, PETs, blood tests, spinal tap, and lots of other stuff that we don’t understand, Jessie received a new diagnosis last night at Cook’s Children’s Hospital after being Video EEG monitored for 3 days. She is out of the hospital and home with us.
She was diagnosed with Focal Encephalitis. This is NOT an infectious or contagious disease or a disease at all for that matter. It is a condition that is the result of a one in a million freak occurrence. It could have come from literally hundreds of different things or she may have been born with it. It caused a small lesion in the occipital lobe of her brain (back of her head) about the size of a quarter. It is not a tumor or cancer. You can’t catch it.
She will be treated with Anabolic Steroids for 7 weeks. So watch out Barry Bonds in T-Ball next year she will be juiced up J. The best case scenario will be that the steroids stop the spread of the lesion and she is completely cured. That is what we hope and pray and ask you to do the same. The prognosis is good for treating this type of condition with steroids.
For those of you that are around Jessie on a day-to-day basis, here are some side effects that you may see from the steroids.
1) She may be a bit grumpy (which as you know is not at all her personality), so be patient with her
2) She may put on some weight temporarily
3) She will be more susceptible to infections (so keep those hands washed)
She has a hard time moving her left hand the way she wants to, because of the seizure activity, but we hope this will clear up as well.
Many of you have asked if there is anything that you can do, and we appreciate the thought. What Jessie needs now, the most, is just to be treated normally. You can welcome her back from the hospital or just say hi. Just be normal, because that is what she is. She hasn’t lost any mental capacity at all. She is the same sweet Jessie that you have all come to know and love that likes to read and sing songs and play and be a little girl. She will be back at school on Monday.
Sorry for such a long email, and we will try to keep everyone up to date on the progress. Please feel free to pass this along to anyone that you know would be interested. If you have any questions, do be afraid to call us or send us an email. We don’t mind talking about this at all, and we are being very open with it to her and everyone we know.
Warm Christmas Wishes to Everyone,
Cris and Kristi Hall
http://jessiekelley.blogspot.com/
Cooks Children's EMU again. - Could this be Encepahlitis !!!
12/12/2007
Dr. Chacon examined Jessie and told us that she needed to be admitted into the hospital NOW. So, we took over to the main Hospital and checked her in to the EMU (Epilepsy Monitoring Unit). We were very concerned.
More wires hooked up to the head. Another MRI, and a PET Scan....and a diagnosis.
http://jessiekelley.blogspot.com/
Dr. Chacon examined Jessie and told us that she needed to be admitted into the hospital NOW. So, we took over to the main Hospital and checked her in to the EMU (Epilepsy Monitoring Unit). We were very concerned.
More wires hooked up to the head. Another MRI, and a PET Scan....and a diagnosis.
http://jessiekelley.blogspot.com/
2nd Opinion Visit at Medical City Dallas - Dr. Steven Lender
12/10/2007
Today we took Jessie to see Dr. Steven Lender at Medical City Dallas. This is where the twins were born and spent their first two weeks in NICU.
We explained to Dr. Lender that we were there for a 2nd Opinion, and he listened to Jessie's background. He also did an examination. The twitching in her left hand and fingers was pretty bad, and she had significant loss of dexterity in that hand.
He asked if Dr. Chacon had seen this and we said "no", because we hadn't been in to see her in a while.
Dr. Lender told us that Dr. Chacon was doing all the right things, but that we need to get in to see her IMMEDIATELY, that he suspected Encephalitis (Inflamation of the brain).
We left and made an emergency appointment back at Cooks, and Dr. Chacon agreed to see us the next day.
http://jessiekelley.blogspot.com/
Today we took Jessie to see Dr. Steven Lender at Medical City Dallas. This is where the twins were born and spent their first two weeks in NICU.
We explained to Dr. Lender that we were there for a 2nd Opinion, and he listened to Jessie's background. He also did an examination. The twitching in her left hand and fingers was pretty bad, and she had significant loss of dexterity in that hand.
He asked if Dr. Chacon had seen this and we said "no", because we hadn't been in to see her in a while.
Dr. Lender told us that Dr. Chacon was doing all the right things, but that we need to get in to see her IMMEDIATELY, that he suspected Encephalitis (Inflamation of the brain).
We left and made an emergency appointment back at Cooks, and Dr. Chacon agreed to see us the next day.
http://jessiekelley.blogspot.com/
Happy Birthday Jake and Josh : Kristi's Mom and Dad Come for a Visit
12/08/2007
Today is Jake and Josh's 8th Birthday!!! Happy Birthday Jake and Josh!!! When did you grow up so much?
Last weekend, we had Jake and Josh's Birthday at Mineral Wells State Park. It turned out to be the best Birthday Party Ever. We had about 25 kids there, and some had never been camping before.
Thanks so much to my Mom, Dad, and Step-Mom and the other parents. We couldn't have pulled it off without them. We didn't lose a single kid in the wilderness or to wild animals, and only one kids got a little burn on his finger. That'll teach him to touch fire. :-)
It was so nice to spend our day focusing on Jake and Josh and not on Jessie. I hope that some day they can look back on this chapter of our life and understand why we focused on her so much, and I hope that they can forgive us for not spending more time with them.
Happy Birthday my fun, goofy guys!!!
-----------------------------------------------------------------------
Kristi's Mom and Dad (Nancy and Gary, aka Gramm and Papa) are here from Cheyenne, Wyoming. They brought us down a VIBE Machine (Electromagnetic Therapy) to see if it would help with Jessie's seizures. Evidently, they've seen some amazing results on people with varying problems, including seizures.
It was a great visit as always, but too short. They got to see the boys play Flag Football with the Ft. Worth YMCA. It was a good weekend.
Unfortunately Jessie's twitching is now 24 hrs per day, and she has lost some use of her left arm and hand. We're going for a second opinion in Dallas. We'll let you know how that goes.
Cris
Today is Jake and Josh's 8th Birthday!!! Happy Birthday Jake and Josh!!! When did you grow up so much?
Last weekend, we had Jake and Josh's Birthday at Mineral Wells State Park. It turned out to be the best Birthday Party Ever. We had about 25 kids there, and some had never been camping before.
Thanks so much to my Mom, Dad, and Step-Mom and the other parents. We couldn't have pulled it off without them. We didn't lose a single kid in the wilderness or to wild animals, and only one kids got a little burn on his finger. That'll teach him to touch fire. :-)
It was so nice to spend our day focusing on Jake and Josh and not on Jessie. I hope that some day they can look back on this chapter of our life and understand why we focused on her so much, and I hope that they can forgive us for not spending more time with them.
Happy Birthday my fun, goofy guys!!!
-----------------------------------------------------------------------
Kristi's Mom and Dad (Nancy and Gary, aka Gramm and Papa) are here from Cheyenne, Wyoming. They brought us down a VIBE Machine (Electromagnetic Therapy) to see if it would help with Jessie's seizures. Evidently, they've seen some amazing results on people with varying problems, including seizures.
It was a great visit as always, but too short. They got to see the boys play Flag Football with the Ft. Worth YMCA. It was a good weekend.
Unfortunately Jessie's twitching is now 24 hrs per day, and she has lost some use of her left arm and hand. We're going for a second opinion in Dallas. We'll let you know how that goes.
Cris
Cooks EMU Again - EEG May Show Slowing - Increase Keppra to 7.5 ml BID
11/27/2008
Jessie is back in Cooks Children's Hospital for more 24-Hour Video EEG monitoring. Yep....she's a wire-head again. She is such a trooper and puts up with all the crap like a champ. She gives me strength. She's my hero.
Anyway, the EEG EEG shows sleep induced spikes on the Right Front. I'm not sure exactly what that means, but it's not so good.
Dr. Malik (The Neuro on duty at the EMU this week) bumped up her Keppra again to 7.5 ml BID. I'm really not sure if this stuff is working or not. Would she be having more seizures if she wasn't on it??? Does it make her seizures worse? It's hard to tell.
Bottom line - Her seizures are mild and do not disturb her day that much, but this finger twitching is very disturbing.
http://jessiekelley.blogspot.com/
Jessie is back in Cooks Children's Hospital for more 24-Hour Video EEG monitoring. Yep....she's a wire-head again. She is such a trooper and puts up with all the crap like a champ. She gives me strength. She's my hero.
Anyway, the EEG EEG shows sleep induced spikes on the Right Front. I'm not sure exactly what that means, but it's not so good.
Dr. Malik (The Neuro on duty at the EMU this week) bumped up her Keppra again to 7.5 ml BID. I'm really not sure if this stuff is working or not. Would she be having more seizures if she wasn't on it??? Does it make her seizures worse? It's hard to tell.
Bottom line - Her seizures are mild and do not disturb her day that much, but this finger twitching is very disturbing.
http://jessiekelley.blogspot.com/
Happy Thanksgiving 2007
11/22/2007
Friends and Family,
I wish everyone a wonderful Thanksgiving Holiday today. This summer, we all got to see Plymouth Plantation outside of Boston with our dear friends Chris, Cody, Zac, and Gabby. The kids got to see what true hardship the pilgrims faced and how that even they found something to be thankful for.
We are thankful that we have family and friends that we love and who love us back. We are thankful to be in such a wonderful community and school system like Aledo. We are thankful that our parents are still alive to share these thanks. We are thankful that all of our kids are healthy and happy. Even though the goofyness gets to be a bit much sometimes!!
http://jessiekelley.blogspot.com/
Friends and Family,
I wish everyone a wonderful Thanksgiving Holiday today. This summer, we all got to see Plymouth Plantation outside of Boston with our dear friends Chris, Cody, Zac, and Gabby. The kids got to see what true hardship the pilgrims faced and how that even they found something to be thankful for.
We are thankful that we have family and friends that we love and who love us back. We are thankful to be in such a wonderful community and school system like Aledo. We are thankful that our parents are still alive to share these thanks. We are thankful that all of our kids are healthy and happy. Even though the goofyness gets to be a bit much sometimes!!
http://jessiekelley.blogspot.com/
Not a Seizure Log (or Blog) : - O
11/21/2007
Hey Everyone,
OK, my writing style is getting extremely boring. This blog is turning into a seizure log. How BORING!! That is not at ALL what I intended this to be. Hell, we already log all of Jessie's seizures on an Excel spreadsheet. If anyone is really interested in that literary masterpiece of excitement, please let me know and I'll be happy to email it to you.
Sufficient to say, Jessie is having about one Simple Partial Seizure every other day (average). These guys last anywhere from 5 - 30 seconds. They are either in her hand/fingers, head, or eyes (visual disturbances). We are begining to notice a slight twitch in her left fingers.
Cris
http://jessiekelley.blogspot.com/
Hey Everyone,
OK, my writing style is getting extremely boring. This blog is turning into a seizure log. How BORING!! That is not at ALL what I intended this to be. Hell, we already log all of Jessie's seizures on an Excel spreadsheet. If anyone is really interested in that literary masterpiece of excitement, please let me know and I'll be happy to email it to you.
Sufficient to say, Jessie is having about one Simple Partial Seizure every other day (average). These guys last anywhere from 5 - 30 seconds. They are either in her hand/fingers, head, or eyes (visual disturbances). We are begining to notice a slight twitch in her left fingers.
Cris
http://jessiekelley.blogspot.com/
Another Complex Partial - Diastat - Increase Keppra
11/11/2007
Today, Jessie had an early Hand Seizure, and then started to go in and out of a Complex Partial. We thought that it was ending, then it would start back again. Finally we gave her Diastat and she fell asleep. Diastat http://www.epilepsyfoundation.org/answerplace/Medical/treatment/medications/typesmedicine/diastat.cfm
Diastat is a rescue medicine for seizures that go longer than 4 minutes (or some other prescribed time) It is basicall a rectally administered valium type drug that is supposed to stop seizures. This one was stopped, but it went about 30 minutes total, but at least we didn't end up in the emergency room again.
The next day, Dr. Chacon bumped up her Keppra to 7.5ml in the morning and 5ml at night.
http://jessiekelley.blogspot.com/
Today, Jessie had an early Hand Seizure, and then started to go in and out of a Complex Partial. We thought that it was ending, then it would start back again. Finally we gave her Diastat and she fell asleep. Diastat http://www.epilepsyfoundation.org/answerplace/Medical/treatment/medications/typesmedicine/diastat.cfm
Diastat is a rescue medicine for seizures that go longer than 4 minutes (or some other prescribed time) It is basicall a rectally administered valium type drug that is supposed to stop seizures. This one was stopped, but it went about 30 minutes total, but at least we didn't end up in the emergency room again.
The next day, Dr. Chacon bumped up her Keppra to 7.5ml in the morning and 5ml at night.
http://jessiekelley.blogspot.com/
Simple Partial Seizures - These aren't so Bad...
11/09/2007
Another Hand Seizure. We are starting to worry that these things aren't so benign as they seemed at first. Jessies left hand seems a little less coordinated than it used to be....but maybe this is just in our imagination. Grandma said that she noticed it before us. She wants to buy Jessie a plug-n-play video game to help with her left hand coordination.
Theresa at cooks said we don't need to report every one of these simple partial seizures.
11/08/2007
One Head Seizure, and one Hand Seizures today and a Sleep Deprived EEG at Cooks. Of course, she didn't have a hand seizure while hooked up to the wires.
11/07/2007
Another Hand Seizure. These are pesky little guys!!
11/04/2007
Today Jessie had two more simple partial seizures. The first was like yesterday. We now call these "Hand Seizures". The second one was a new one. She said that the Right Front of her head hurt and made the sound "bong-bong-bong" for less than 30 seconds with some eye blinking, then she was OK. We call these "Head Seizures".
11/03/2007
Today Jessie had another Simple Partial Seizure where her left hand and arm jerked for less than 30 seconds, and then she was ok.
11/01/2007
On 11/01/2007, Jessie had a strange seizure today. We are going to log it as a Simple Partial Seizure, but we don't really know. Her left hand and arm begin to shake vigorously for less than 30 seconds, and then stopped. She was aware the whole time, and told us she was ok immediately following the episode. She evidently had two more of these at school today, but we didn't see them. These don't seem so bad at all. Maybe things are getting better or the medicine is starting to work to control her seizures. Three simple partial seizures a day seems better than one of those nasty Complex Partials.
http://jessiekelley.blogspot.com/
Another Hand Seizure. We are starting to worry that these things aren't so benign as they seemed at first. Jessies left hand seems a little less coordinated than it used to be....but maybe this is just in our imagination. Grandma said that she noticed it before us. She wants to buy Jessie a plug-n-play video game to help with her left hand coordination.
Theresa at cooks said we don't need to report every one of these simple partial seizures.
11/08/2007
One Head Seizure, and one Hand Seizures today and a Sleep Deprived EEG at Cooks. Of course, she didn't have a hand seizure while hooked up to the wires.
11/07/2007
Another Hand Seizure. These are pesky little guys!!
11/04/2007
Today Jessie had two more simple partial seizures. The first was like yesterday. We now call these "Hand Seizures". The second one was a new one. She said that the Right Front of her head hurt and made the sound "bong-bong-bong" for less than 30 seconds with some eye blinking, then she was OK. We call these "Head Seizures".
11/03/2007
Today Jessie had another Simple Partial Seizure where her left hand and arm jerked for less than 30 seconds, and then she was ok.
11/01/2007
On 11/01/2007, Jessie had a strange seizure today. We are going to log it as a Simple Partial Seizure, but we don't really know. Her left hand and arm begin to shake vigorously for less than 30 seconds, and then stopped. She was aware the whole time, and told us she was ok immediately following the episode. She evidently had two more of these at school today, but we didn't see them. These don't seem so bad at all. Maybe things are getting better or the medicine is starting to work to control her seizures. Three simple partial seizures a day seems better than one of those nasty Complex Partials.
http://jessiekelley.blogspot.com/
Thursday, February 21, 2008
Check-Up with Dr. Elliot
10/25/2007
Today, we went to see Dr. Stan Elliot. He is Jessie's primary pediatrician and a super guy. We were due for a check-up anyway, so I thought that we could get in an extra blood test and let him look her over. He is a very practical doctor and doesn't over complicate things. Also, she was due for vaccinations, and Dr. Chacon said that we should go ahead and keep those up-to-date.
She was given and standard blood test (which turned out normal), and at my request a parasite test. Parasite Cysts are the number one cause of epilepsy in many countries.
Flu Shot (Dead Virus Vaccine)
Varicella Vaccine (Chicken Pox - live virus vaccine)
In hind-site, I don't think that a live virus vaccine is such a good idea after a bad seizure like the one just 20 days prior. It is believed that seizures can damage the blood-brain barrier and allow things into the brain that would normally be filtered out. We didn't know that then, and everything that we read (and what our neurologist told us) was that you should keep all vaccinations up-to-date, because the risk of seizure due to illness is much higher than the risk of the vaccines themselves.
I'm not saying don't vaccinate, as we will continue to vaccinate our kids, but I cannot help believing that this was the turning point in our daughter's health.
10/24/2007
Today Jessie had another episode (???Simple Partial Seizure???) similar to the one on 10/18/2007. We are going to log these as Simple Partial Seizures for the lack of a better term. They are scary, because we don't know if she is going to go into a full blown seizure or not.
10/18/2007
Things have been going pretty good since Jessie's last bad Complex Partial Seizure (actually a cluster of two, the last one going status epilepticus). She has been on Keppra Oral Solution 5 ml BID for about 2 weeks. Maybe things are going to be OK now.
Tonight, we were in bed, and Jessie came into our room and vomited. She looked just like she has before, when she is about to have a Complex Partial Seizure http://en.wikipedia.org/wiki/Complex_partial_seizure. Up until now, they have been a month apart. It has only been two weeks.
However, to our delight, Jessie didn't seize!! Horray!!! The episode only lasted about 30 seconds, and then she fell asleep. Maybe the medicine is finally working!!!!! We logged this one as a Simple Partial Seizure. http://www.epilepsy.com/epilepsy/seizure_simplepartial
http://jessiekelley.blogspot.com/
Today, we went to see Dr. Stan Elliot. He is Jessie's primary pediatrician and a super guy. We were due for a check-up anyway, so I thought that we could get in an extra blood test and let him look her over. He is a very practical doctor and doesn't over complicate things. Also, she was due for vaccinations, and Dr. Chacon said that we should go ahead and keep those up-to-date.
She was given and standard blood test (which turned out normal), and at my request a parasite test. Parasite Cysts are the number one cause of epilepsy in many countries.
Flu Shot (Dead Virus Vaccine)
Varicella Vaccine (Chicken Pox - live virus vaccine)
In hind-site, I don't think that a live virus vaccine is such a good idea after a bad seizure like the one just 20 days prior. It is believed that seizures can damage the blood-brain barrier and allow things into the brain that would normally be filtered out. We didn't know that then, and everything that we read (and what our neurologist told us) was that you should keep all vaccinations up-to-date, because the risk of seizure due to illness is much higher than the risk of the vaccines themselves.
I'm not saying don't vaccinate, as we will continue to vaccinate our kids, but I cannot help believing that this was the turning point in our daughter's health.
10/24/2007
Today Jessie had another episode (???Simple Partial Seizure???) similar to the one on 10/18/2007. We are going to log these as Simple Partial Seizures for the lack of a better term. They are scary, because we don't know if she is going to go into a full blown seizure or not.
10/18/2007
Things have been going pretty good since Jessie's last bad Complex Partial Seizure (actually a cluster of two, the last one going status epilepticus). She has been on Keppra Oral Solution 5 ml BID for about 2 weeks. Maybe things are going to be OK now.
Tonight, we were in bed, and Jessie came into our room and vomited. She looked just like she has before, when she is about to have a Complex Partial Seizure http://en.wikipedia.org/wiki/Complex_partial_seizure. Up until now, they have been a month apart. It has only been two weeks.
However, to our delight, Jessie didn't seize!! Horray!!! The episode only lasted about 30 seconds, and then she fell asleep. Maybe the medicine is finally working!!!!! We logged this one as a Simple Partial Seizure. http://www.epilepsy.com/epilepsy/seizure_simplepartial
http://jessiekelley.blogspot.com/
The EMU
10/03/2007
The EMU or Epilepsy Monitoring Unit is a wing in Cooks Chilren's Hospital where the rooms are all wired with infrared cameras and EEG interface boxes. The rooms are incredible, and they have a parent bed, a play room for the kids (with EEG interface boxes), a Game Cube, and lots more. Jessie thought that she was on vacation...except for the fact that she had multi-colored wires glued to her head.
Jessie stayed here for a day, but she did not have another seizure, and the EEG was inconclusive. It showed slowing, but this was attributed to the Ativan.
Her dose of Keppra was increased again.
Maybe this will be the last seizure
The EMU or Epilepsy Monitoring Unit is a wing in Cooks Chilren's Hospital where the rooms are all wired with infrared cameras and EEG interface boxes. The rooms are incredible, and they have a parent bed, a play room for the kids (with EEG interface boxes), a Game Cube, and lots more. Jessie thought that she was on vacation...except for the fact that she had multi-colored wires glued to her head.
Jessie stayed here for a day, but she did not have another seizure, and the EEG was inconclusive. It showed slowing, but this was attributed to the Ativan.
Her dose of Keppra was increased again.
Maybe this will be the last seizure
Seizure #3 - A BAD ONE !!
10/03/2007
Today started out bad and got worse. Jessie woke up around 6:00AM and had a bad Complex Partial Seizure. She vomited what looked like lots of saliva, and mostly stared. I caught this one on video to show the doctors and Kristi administerd Diastat (It is a valium like drug administered rectally). It is called rescue medicine and is supposed to stop seizures that go on to long.
The seizure did stop, and Jessie slept for 30 minutes or so. She woke up hungry and had some breakfast. We decided to keep her home from school, so I took the boys to school. On my way to work, Kristi called and said that Jessie was going in and out of a seizure-like state. I rushed home, and so we decided to drive to Cooks Children's Hospital as quickly as possible. This was begining to look like something that we read about called Status Epilepticus. These type of seizures go on and will not stop. They can be life threatening. We decided that we could get to Cooks faster by driving than waiting on an ambulance.
By the time we got to Cooks, she had been seizing for a long time. It was definitely Status Epilepticus, and they had to give her Ativan, and who knows what else to stop the seizure.
After Jessie was stable, they sent us up to the EMU (Epilepsy Monitory Unit).
Account of day in our notes:
5:55 AM – Tummy hurt (Epigasturial Aura), threw up, then went into a blank stare seizure. She wouldn’t lay down. Pre-seizure stomach ache, vomiting (saliva), staring, drooling, no talking, some eye movement (twitching and turned to one side), sometimes head turned to one side, some repetitive arm movement, little leg movement.
(Caught Seizure on handheld Video camera, Review for specifics) Mostly very little movement.
6:00 AM – Gave her 7.5 mg Diastat, seizure stopped 5 minutes later.
7:15 AM – She was hungry, ate some cereal, Gave normal dose of 4ml Keppra
7:45 AM – Threw up again
7:55 AM – Same type of seizure as before, with neck/head turning.
8:40 AM – Got to ER, Wet bed, Fever, and high White-Blood Cell count.
EEG Results from Cooks Epilepsy Monitoring Unit
Jessie’s first EEG on August 7 resulted in some “irritation” (or as the nurse today said), slight seizure activity when she was sleeping.
The video EEG revealed no seizure activities (no underlying seizure wave form) – nothing that predicts or suggests that Jessie would have a seizure. Her beta waves were pronounced due to the meds she was on and the nurse said her right hemisphere is slow in the background.
http://jessiekelley.blogspot.com/
Today started out bad and got worse. Jessie woke up around 6:00AM and had a bad Complex Partial Seizure. She vomited what looked like lots of saliva, and mostly stared. I caught this one on video to show the doctors and Kristi administerd Diastat (It is a valium like drug administered rectally). It is called rescue medicine and is supposed to stop seizures that go on to long.
The seizure did stop, and Jessie slept for 30 minutes or so. She woke up hungry and had some breakfast. We decided to keep her home from school, so I took the boys to school. On my way to work, Kristi called and said that Jessie was going in and out of a seizure-like state. I rushed home, and so we decided to drive to Cooks Children's Hospital as quickly as possible. This was begining to look like something that we read about called Status Epilepticus. These type of seizures go on and will not stop. They can be life threatening. We decided that we could get to Cooks faster by driving than waiting on an ambulance.
By the time we got to Cooks, she had been seizing for a long time. It was definitely Status Epilepticus, and they had to give her Ativan, and who knows what else to stop the seizure.
After Jessie was stable, they sent us up to the EMU (Epilepsy Monitory Unit).
Account of day in our notes:
5:55 AM – Tummy hurt (Epigasturial Aura), threw up, then went into a blank stare seizure. She wouldn’t lay down. Pre-seizure stomach ache, vomiting (saliva), staring, drooling, no talking, some eye movement (twitching and turned to one side), sometimes head turned to one side, some repetitive arm movement, little leg movement.
(Caught Seizure on handheld Video camera, Review for specifics) Mostly very little movement.
6:00 AM – Gave her 7.5 mg Diastat, seizure stopped 5 minutes later.
7:15 AM – She was hungry, ate some cereal, Gave normal dose of 4ml Keppra
7:45 AM – Threw up again
7:55 AM – Same type of seizure as before, with neck/head turning.
8:40 AM – Got to ER, Wet bed, Fever, and high White-Blood Cell count.
EEG Results from Cooks Epilepsy Monitoring Unit
Jessie’s first EEG on August 7 resulted in some “irritation” (or as the nurse today said), slight seizure activity when she was sleeping.
The video EEG revealed no seizure activities (no underlying seizure wave form) – nothing that predicts or suggests that Jessie would have a seizure. Her beta waves were pronounced due to the meds she was on and the nurse said her right hemisphere is slow in the background.
http://jessiekelley.blogspot.com/
Neurology Follow-Up Visit : Dr. Chacon
09/18/2007
Today, Jessie went in for her second visit to Dr. Chacon at Cook's Children's Neurology Clinic. Dr. Chacon made the following diagnosis:
Diagnosis: Focal Onset Seizure Disorder in the right frontal lobe.
MRI Results – normal
EEG Results - normal
Take home message – Jessie’s first 2 seizures happened without medication. It’s like drawing a line and starting over – we need to be observant, log changes in behaviors, emotions, academics, side effects, seizures or possible seizures to help us put together a better picture of what is going on.
Our best hope is that an Anti-Convulsant drug (AED) will control her seizures.
**Note : We tried Trileptal first for a few days, but she began getting a rash. She was then put on Keppra.
Watch for grumpiness, being emotional, irritability, and headaches – all are precursors for seizures.
Please God make this control her seizures!! This is really getting scary.
http://jessiekelley.blogspot.com/
Today, Jessie went in for her second visit to Dr. Chacon at Cook's Children's Neurology Clinic. Dr. Chacon made the following diagnosis:
Diagnosis: Focal Onset Seizure Disorder in the right frontal lobe.
MRI Results – normal
EEG Results - normal
Take home message – Jessie’s first 2 seizures happened without medication. It’s like drawing a line and starting over – we need to be observant, log changes in behaviors, emotions, academics, side effects, seizures or possible seizures to help us put together a better picture of what is going on.
Our best hope is that an Anti-Convulsant drug (AED) will control her seizures.
**Note : We tried Trileptal first for a few days, but she began getting a rash. She was then put on Keppra.
Watch for grumpiness, being emotional, irritability, and headaches – all are precursors for seizures.
Please God make this control her seizures!! This is really getting scary.
http://jessiekelley.blogspot.com/
Complex Partial Seizure at School
09/04/2007
Oh god! Jessie had her second seizure today. She was in her Kindergarten class, just waking from a nap, when another child told the teacher that she was just blinking and staring into space. She also had lots of jerking, but we were not there so can't really say exactly what happened.
We do know that her teacher was amazing in handling the situation and so was the rest of the staff. Her principal, Mrs. Seay tried to get in the ambulance with her, but they wouldn't let her ride with Jessie to the hospital.
I got a call at work about 12:30 and rushed to the hospital. By this time, Kristi was already there, and Jessie was already back to normal and awake. She was very frightened, and didn't know what had happened. I can't even imagine how scared she was. We don't know how long this seizure lasted.
It is official, Jessie has epilepsy. That's OK. We can handle this. We are a strong family, and together can manage anything. We will get her on an AED (Anti-Epilepsy Drug), and she can live a normal life.
http://jessiekelley.blogspot.com/
Oh god! Jessie had her second seizure today. She was in her Kindergarten class, just waking from a nap, when another child told the teacher that she was just blinking and staring into space. She also had lots of jerking, but we were not there so can't really say exactly what happened.
We do know that her teacher was amazing in handling the situation and so was the rest of the staff. Her principal, Mrs. Seay tried to get in the ambulance with her, but they wouldn't let her ride with Jessie to the hospital.
I got a call at work about 12:30 and rushed to the hospital. By this time, Kristi was already there, and Jessie was already back to normal and awake. She was very frightened, and didn't know what had happened. I can't even imagine how scared she was. We don't know how long this seizure lasted.
It is official, Jessie has epilepsy. That's OK. We can handle this. We are a strong family, and together can manage anything. We will get her on an AED (Anti-Epilepsy Drug), and she can live a normal life.
http://jessiekelley.blogspot.com/
Jessie's First MRI
08/30/2007
Jessie went into Cook's Chilren's Hospital in Fort Worth today for her first MRI. She had to be put to sleep for this proceedure. Kinda scary for Mom and Dad.
http://jessiekelley.blogspot.com/
Jessie went into Cook's Chilren's Hospital in Fort Worth today for her first MRI. She had to be put to sleep for this proceedure. Kinda scary for Mom and Dad.
http://jessiekelley.blogspot.com/
Our Big Girl Starts School
08/27/2007
Jessie started Kindergarten today and she is in Ms. McGaugh's class. She gets to ride the bus with her big brothers, but most importantly Mom and Dad don't have to pay day care anymore. Horray!!!
http://jessiekelley.blogspot.com/
Jessie started Kindergarten today and she is in Ms. McGaugh's class. She gets to ride the bus with her big brothers, but most importantly Mom and Dad don't have to pay day care anymore. Horray!!!
http://jessiekelley.blogspot.com/
Sleep Deprived EEG - And Kristi Gets an Award
08/07/2007
Today, Jessie had her 1st Sleep Deprived EEG or any EEG for that matter. This proceedure is to see if the electrical activity in her brain is normal. i.e. doesn't have any hyper excitement spikes or areas of abnormal slowing. This is a great test for Jessie because she got to have 20 or so pretty wires glued to her head and forced to look into strobe lights and hyperventilate to try to make her have a seizure. She didn't. Sound fun?
This is great for Mom and Dad too, because we get to keep her up late and wake her up early. Luckily Kristi took the 4:00AM wake-up duty, and I gladly took Jessie to her EEG appointment.
Also, Today Kristi received the Technical Excellence Award in Research & Development at Alcon Laboratories. We are all so proud of her achievements.
Uncle Mark, Aunt Michelle, and Justin were down from Cheyenne, Wyoming for a visit. We had a great time swimming and playing together and just enjoying their company. Matt, Jake, Josh, and Jessie LOVE their big-kid cousin Justin and Justin is so good to them.
http://jessiekelley.blogspot.com/
Today, Jessie had her 1st Sleep Deprived EEG or any EEG for that matter. This proceedure is to see if the electrical activity in her brain is normal. i.e. doesn't have any hyper excitement spikes or areas of abnormal slowing. This is a great test for Jessie because she got to have 20 or so pretty wires glued to her head and forced to look into strobe lights and hyperventilate to try to make her have a seizure. She didn't. Sound fun?
This is great for Mom and Dad too, because we get to keep her up late and wake her up early. Luckily Kristi took the 4:00AM wake-up duty, and I gladly took Jessie to her EEG appointment.
Also, Today Kristi received the Technical Excellence Award in Research & Development at Alcon Laboratories. We are all so proud of her achievements.
Uncle Mark, Aunt Michelle, and Justin were down from Cheyenne, Wyoming for a visit. We had a great time swimming and playing together and just enjoying their company. Matt, Jake, Josh, and Jessie LOVE their big-kid cousin Justin and Justin is so good to them.
http://jessiekelley.blogspot.com/
Welcome to Neurology and Epilepsy 101
08/06/2007
Today we went to Cook's Children's Hospital http://www.cookchildrens.org/Pages/default.aspx and Met with Dr. Chacon, one of the three Pediatric Neurologist (Epileptologist). She examined Jessie, and scheduled an MRI and EEG. She felt certain that Jessie had a seizure on the boat.
Epilepsy (or sometimes called Seizure Disorder) is usually diagnosed after a person has had at least two seizures that were not caused by some known medical condition like alcohol withdrawal or extremely low blood sugar.
If you are interested in learning about Epilepsy, this is a good site that has helped us tremendously. http://www.epilepsy.com/epilepsy/main_epilepsy
So Jessie may have epilepsy. She will defintely have Epilepsy if she has another unexplained seizure. We asked to not go on anti-seizure medicine immediately, to see if she had her second seizure. We had read that sometimes kids have one seizure, and never have another one. This is what we were hoping for.
We were upset with the thought of Epilepsy. Our kid!! That only happens to other people's kids. Well, if that is what it ends up being, then we can deal with it. Lots of people have epilepsy as we were begining to find out. http://www.epilepsy.com/101/ep101_who
So we will just wait and see if she has another seizure. We felt certain that she wouldn't.
http://jessiekelley.blogspot.com/
Today we went to Cook's Children's Hospital http://www.cookchildrens.org/Pages/default.aspx and Met with Dr. Chacon, one of the three Pediatric Neurologist (Epileptologist). She examined Jessie, and scheduled an MRI and EEG. She felt certain that Jessie had a seizure on the boat.
Epilepsy (or sometimes called Seizure Disorder) is usually diagnosed after a person has had at least two seizures that were not caused by some known medical condition like alcohol withdrawal or extremely low blood sugar.
If you are interested in learning about Epilepsy, this is a good site that has helped us tremendously. http://www.epilepsy.com/epilepsy/main_epilepsy
So Jessie may have epilepsy. She will defintely have Epilepsy if she has another unexplained seizure. We asked to not go on anti-seizure medicine immediately, to see if she had her second seizure. We had read that sometimes kids have one seizure, and never have another one. This is what we were hoping for.
We were upset with the thought of Epilepsy. Our kid!! That only happens to other people's kids. Well, if that is what it ends up being, then we can deal with it. Lots of people have epilepsy as we were begining to find out. http://www.epilepsy.com/101/ep101_who
So we will just wait and see if she has another seizure. We felt certain that she wouldn't.
http://jessiekelley.blogspot.com/
How it all began : Jessie's first seizure
08/04/2007
Note : This may be a little confusing at first, because we are actually writing a lot of these entries in February of 2008, and back dating them to when they actually happened. We hope to be caught up by Feb 24th, so everything after that should be closer to real time.
The reason that we are doing this, is so that all of our friends and relatives can keep up with Jessies progress, diagnosis, treatment. I know that I have hurt some feelings by not communicating things, and we hope to avoid that in the future by using this forum. Thank You so much for reading this and for all of your support and encouragement.
We were having a wonderful time on Lake Texoma sailing with a work friend of Kristi's. What a brave man, as he invited all of the Hall Zoo, including the four kids, out for the day. We were aboard his boat, the Pegasus and begining to have a spectacular day. We had no idea that the next chapter of our life was about to be written.
We had been on the water approximately 1 ½ hours, and Jessie appeared normal, chattering away like she always does.
Slowed down to eat lunch. Jessie appeared to be falling asleep while eating her sandwich (in the shade). (wheat bread, turkey, American cheese). We called her name, took the sandwich from her but no response. Cris picked her up and tried to get a response from her. Nothing. Put an ice pack on her face. No response. Put the ice pack on the back of her neck. No response. ~2-4 minutes. At the time we didn't know it, but this was what is called a Complex Partial Seizure. http://en.wikipedia.org/wiki/Complex_partial_seizure
Jessie’s left eye and her head started jerking to the left, becoming more pronounced. Under the shade, pin point pupils. Color good. She tried to focus on me, small grunting noises. Tried to grab the bill of my cap. I asked her to squeeze my hand. She did try but only in short squeezes. Lots of drooling. Her legs started to twitch some.
After about 5 minutes, she stopped but could not keep her eyes open. Not responsive to my voice but did respond when I tickled the palm of her hand and tickled her feet. Color good. Breathing good. Twice right hand went in the air as if she was waving.
We called 911 from out in the middle of Texoma, and began our long, slow trip back to the marina. We were met about half way back by a game warden in a speed boat. He had heard the call and met us. We transferred Jessie and I to the speed boat, and began a much quicker trip back. We were about 5 minutes out from the marina, when another speed boat met us with the paramedics, and they jumped on board and began working on Jessie. At this point, they said that she was post-ictal (which means she had a seizure but was over it).
She responded to stroking her sternum (pushed hand away) and needle stick, but not much more. The ambulance took us from the Marina to the Hospital on the Texas side of the Lake.
Low potassium. Otherwise told that blood, urine, chest x-ray, CT, ECG were normal.
We left the hospital and drove home (luckily, the DPS officer that caught me speeding felt sorry for us and let me off with a warning).
We didn't sleep too much that night.....
http://jessiekelley.blogspot.com/
Note : This may be a little confusing at first, because we are actually writing a lot of these entries in February of 2008, and back dating them to when they actually happened. We hope to be caught up by Feb 24th, so everything after that should be closer to real time.
The reason that we are doing this, is so that all of our friends and relatives can keep up with Jessies progress, diagnosis, treatment. I know that I have hurt some feelings by not communicating things, and we hope to avoid that in the future by using this forum. Thank You so much for reading this and for all of your support and encouragement.
We were having a wonderful time on Lake Texoma sailing with a work friend of Kristi's. What a brave man, as he invited all of the Hall Zoo, including the four kids, out for the day. We were aboard his boat, the Pegasus and begining to have a spectacular day. We had no idea that the next chapter of our life was about to be written.
We had been on the water approximately 1 ½ hours, and Jessie appeared normal, chattering away like she always does.
Slowed down to eat lunch. Jessie appeared to be falling asleep while eating her sandwich (in the shade). (wheat bread, turkey, American cheese). We called her name, took the sandwich from her but no response. Cris picked her up and tried to get a response from her. Nothing. Put an ice pack on her face. No response. Put the ice pack on the back of her neck. No response. ~2-4 minutes. At the time we didn't know it, but this was what is called a Complex Partial Seizure. http://en.wikipedia.org/wiki/Complex_partial_seizure
Jessie’s left eye and her head started jerking to the left, becoming more pronounced. Under the shade, pin point pupils. Color good. She tried to focus on me, small grunting noises. Tried to grab the bill of my cap. I asked her to squeeze my hand. She did try but only in short squeezes. Lots of drooling. Her legs started to twitch some.
After about 5 minutes, she stopped but could not keep her eyes open. Not responsive to my voice but did respond when I tickled the palm of her hand and tickled her feet. Color good. Breathing good. Twice right hand went in the air as if she was waving.
We called 911 from out in the middle of Texoma, and began our long, slow trip back to the marina. We were met about half way back by a game warden in a speed boat. He had heard the call and met us. We transferred Jessie and I to the speed boat, and began a much quicker trip back. We were about 5 minutes out from the marina, when another speed boat met us with the paramedics, and they jumped on board and began working on Jessie. At this point, they said that she was post-ictal (which means she had a seizure but was over it).
She responded to stroking her sternum (pushed hand away) and needle stick, but not much more. The ambulance took us from the Marina to the Hospital on the Texas side of the Lake.
Low potassium. Otherwise told that blood, urine, chest x-ray, CT, ECG were normal.
We left the hospital and drove home (luckily, the DPS officer that caught me speeding felt sorry for us and let me off with a warning).
We didn't sleep too much that night.....
http://jessiekelley.blogspot.com/
Subscribe to:
Posts (Atom)
