July 22, 2008
Today was our meeting with neurosurgeon, Gary Mathern, neurologist, Raman Sankar and epilepsy nurse specialist, Sue Yudovin at UCLA. Jason and my mom both took the day off from work to accompany me and Aiden.
The purpose of this meeting was to clarify why some team members felt Aiden should try more drugs before surgery should be considered and why some felt surgery was urgent.
After quite a long discussion, it was obvious that although surgery is an aggressive approach, it is the best decision for Aiden. After Dr. Mathern left the room, Dr. Sankar told us that if his child ever needed brain surgery, he'd want Dr. Mathern to do it. I've heard numerous people say that he is the BEST.
Dr. Anne Comi in Baltimore is still in the process of reviewing Aiden's records and tests. At this point, I'm just waiting for her opinion before I call to set a date for surgery.
Tomorrow, I'm taking Aiden to the lab to find out his blood type because he will need family and friends to donate four to five units of blood once a date is set for surgery.
Tuesday, July 22, 2008
Tuesday, July 8, 2008
New Opinions on Surgery
July 8, 2008
Since I received conflicting opinions from the neurologist and neurosurgeon at UCLA about performing the hemi surgery, I decided to ask the sws support group for some advise. Quite a few people directed me to Dr. Anne Comi at Kennedy Krieger Institute. I sent Dr. Comi an email on Wednesday of last week and to my surprise, I got a reply from her the next morning. I asked her if she would be willing to review Aiden's tests and medical records from UCLA and give me her opinion as to whether or not a hemispherectomy would be necessary at this point in Aiden's life. She said she would be happy to review the records and give her opinion on course of treatment. I was so relieved that I wouldn't have to take Aiden to Baltimore and subject him to more testing.
I decided to do some research on Dr. Comi. I found that "her clinical expertise is in the diagnosis and treatment of the neurologic aspects of Sturge-Weber Syndrome (SWS). She is a physician advisor for the Vascular Birthmark Foundation and Sturge-Weber Syndrome Community and has served on the scientific advisory board of the Sturge-Weber Foundation. Her research interests center on studying the pathologic processes involved in the neurologic complications of Sturge-Weber Syndrome, including the effects of chronic hypoxia and glucose deprivation on brain tissue and neurons, as well as the interactions between seizures and impaired blood flow in the brain. Through both clinical and basic research, she hopes to determine approaches to preventing neurodegeneration resulting from chronically impaired blood flow in Sturge-Weber syndrome."
I'm so happy to have found an "SWS expert" to review Aiden's case. I feel that once I have her opinion, I can make a decision and feel at peace about it.
I also took Aiden to see his regular neurologist, Dr. Imbus, last week. His opinion is to proceed with surgery. He told me "I'm a medical doctor and we love pushing new drugs on patients. That said, I know Aiden's condition can't be controlled by medication and I suggest you get him fixed." (meaning surgery). He also told me that he will be holding a conference at the end of the month and he'd be willing to present Aiden's case to all the attending neurologists there and gather their collective opinions.
Since I received conflicting opinions from the neurologist and neurosurgeon at UCLA about performing the hemi surgery, I decided to ask the sws support group for some advise. Quite a few people directed me to Dr. Anne Comi at Kennedy Krieger Institute. I sent Dr. Comi an email on Wednesday of last week and to my surprise, I got a reply from her the next morning. I asked her if she would be willing to review Aiden's tests and medical records from UCLA and give me her opinion as to whether or not a hemispherectomy would be necessary at this point in Aiden's life. She said she would be happy to review the records and give her opinion on course of treatment. I was so relieved that I wouldn't have to take Aiden to Baltimore and subject him to more testing.
I decided to do some research on Dr. Comi. I found that "her clinical expertise is in the diagnosis and treatment of the neurologic aspects of Sturge-Weber Syndrome (SWS). She is a physician advisor for the Vascular Birthmark Foundation and Sturge-Weber Syndrome Community and has served on the scientific advisory board of the Sturge-Weber Foundation. Her research interests center on studying the pathologic processes involved in the neurologic complications of Sturge-Weber Syndrome, including the effects of chronic hypoxia and glucose deprivation on brain tissue and neurons, as well as the interactions between seizures and impaired blood flow in the brain. Through both clinical and basic research, she hopes to determine approaches to preventing neurodegeneration resulting from chronically impaired blood flow in Sturge-Weber syndrome."
I'm so happy to have found an "SWS expert" to review Aiden's case. I feel that once I have her opinion, I can make a decision and feel at peace about it.
I also took Aiden to see his regular neurologist, Dr. Imbus, last week. His opinion is to proceed with surgery. He told me "I'm a medical doctor and we love pushing new drugs on patients. That said, I know Aiden's condition can't be controlled by medication and I suggest you get him fixed." (meaning surgery). He also told me that he will be holding a conference at the end of the month and he'd be willing to present Aiden's case to all the attending neurologists there and gather their collective opinions.
Wednesday, July 2, 2008
Reconsidering Hemispherectomy
July 2, 2008
I got a call last Friday from Sue Yudovin, Epilepsy Nurse Specialist, at UCLA. She told me their team met and discussed Aiden's case and they don't think Aiden should have the surgery at this time. Reason being, his seizures aren't severe enough and there are still medications we haven't tried.
If you read my earlier post titled "surgery plans" this is in total contradiction to what Dr. Mathern, the neurosurgeon, told me when we met on June 16th.
At this point, I don't know what to do. I'm so confused.
On one hand, I'm kind of glad Aiden might not have to face a hemispherectomy right now, but on the other hand, if we wait too long, his chances for a good outcome will be less.
In the meantime, Sue suggested we add Lamictal to his regimen. I'm going to see what Aiden's local neurologist thinks about that tomorrow at 4:15pm.
I'm thinking about getting a second opinion at Johns Hopkins. I'm checking to see if they can request all of Aiden's tests performed at UCLA and give me an opinion based on that or if I have to fly out there and have them perform their own tests.
More to come...
I got a call last Friday from Sue Yudovin, Epilepsy Nurse Specialist, at UCLA. She told me their team met and discussed Aiden's case and they don't think Aiden should have the surgery at this time. Reason being, his seizures aren't severe enough and there are still medications we haven't tried.
If you read my earlier post titled "surgery plans" this is in total contradiction to what Dr. Mathern, the neurosurgeon, told me when we met on June 16th.
At this point, I don't know what to do. I'm so confused.
On one hand, I'm kind of glad Aiden might not have to face a hemispherectomy right now, but on the other hand, if we wait too long, his chances for a good outcome will be less.
In the meantime, Sue suggested we add Lamictal to his regimen. I'm going to see what Aiden's local neurologist thinks about that tomorrow at 4:15pm.
I'm thinking about getting a second opinion at Johns Hopkins. I'm checking to see if they can request all of Aiden's tests performed at UCLA and give me an opinion based on that or if I have to fly out there and have them perform their own tests.
More to come...
Monday, June 16, 2008
Considering Hemispherectomy
June 16, 2008
Today we met with Dr. Mathern, the neurosurgeon at UCLA, to discuss Aiden possibly having a brain surgery called hemispherectomy. Dr. Mathern explained that if Aiden doesn't have this surgery, the right side of his brain will progressively get worse. He will always battle seizures and need medication to control them; medication that inhibits his ability to learn and progress developmentally.
Since December, I've been researching this surgery and talking to parents of kids who've had hemispherectomies. I've been trying to prepare myself for this day because I knew I'd have to make this decision. I tried to come up with as many reasons as I could to convince myself that Aiden didn't need this surgery. But during the discussion with Dr. Mathern today, it hit me like a truck and I realized I have to give Aiden this opportunity for a better life. So, after considering the benefits and risks of this surgery, we decided to proceed. The surgery will be scheduled in late July or early August.
Dr. Mathern explained how this procedure will be performed. The right hemisphere is disconnected from the rest of the brain, but only a limited area of brain tissue will be removed. The surgery takes between eight to 10 hours. Aiden will need to stay in the hospital for 10 to 14 days. He will need intense rehabilitative therapy to regain his gross motor functions. He will lose sensation and fine motor functions on the left side of his body. On the plus side, the removal of the severely damaged brain tissue will better allow the healthy hemisphere to perform its duties. 80% of patients who undergo this surgery have complete seizure control without medication. I have heard from parents who say their child couldn't talk or walk before the surgery but were able to afterwards.
I am trying to focus on the possibility that this surgery will improve the quality of Aiden's life. My family and friends have been so supportive of my decision. The Sturge-Weber and Hemispherectomy support groups on Yahoo have helped me find the strength to make this decision. For that, I'm so thankful.
Thanks for listening and I will keep you posted when the date is set for the surgery.
Today we met with Dr. Mathern, the neurosurgeon at UCLA, to discuss Aiden possibly having a brain surgery called hemispherectomy. Dr. Mathern explained that if Aiden doesn't have this surgery, the right side of his brain will progressively get worse. He will always battle seizures and need medication to control them; medication that inhibits his ability to learn and progress developmentally.
Since December, I've been researching this surgery and talking to parents of kids who've had hemispherectomies. I've been trying to prepare myself for this day because I knew I'd have to make this decision. I tried to come up with as many reasons as I could to convince myself that Aiden didn't need this surgery. But during the discussion with Dr. Mathern today, it hit me like a truck and I realized I have to give Aiden this opportunity for a better life. So, after considering the benefits and risks of this surgery, we decided to proceed. The surgery will be scheduled in late July or early August.
Dr. Mathern explained how this procedure will be performed. The right hemisphere is disconnected from the rest of the brain, but only a limited area of brain tissue will be removed. The surgery takes between eight to 10 hours. Aiden will need to stay in the hospital for 10 to 14 days. He will need intense rehabilitative therapy to regain his gross motor functions. He will lose sensation and fine motor functions on the left side of his body. On the plus side, the removal of the severely damaged brain tissue will better allow the healthy hemisphere to perform its duties. 80% of patients who undergo this surgery have complete seizure control without medication. I have heard from parents who say their child couldn't talk or walk before the surgery but were able to afterwards.
I am trying to focus on the possibility that this surgery will improve the quality of Aiden's life. My family and friends have been so supportive of my decision. The Sturge-Weber and Hemispherectomy support groups on Yahoo have helped me find the strength to make this decision. For that, I'm so thankful.
Thanks for listening and I will keep you posted when the date is set for the surgery.
Monday, April 21, 2008
EEG Testing at UCLA - Last Day
April 21, 2008
I woke up this morning and went down to the cafeteria to get my coffee. When I got back to the room, the nurse who was watching Aiden said the neuro team had come by to tell me we get to go home today. Aiden was happy to get the electrodes off.
I was told Aiden had a seizure one night while I was sleeping and it showed up on the EEG. He also had a sub-clinical seizure that can only be seen on an EEG because there are no physical signs. The EEG showed the seizures were coming from the right side only, like we hoped. This means Aiden will most likely be a candidate for the hemispherectomy. The neuro team will get together with the surgeon and they will all discuss what the next step will be. They will consider factors like his age, developmental delay and whether or not they think the surgery will benefit Aiden.
I'm glad to be home but a little uncomfortable because Aiden has been completely off his anti-seizure meds for 4 days. When we got home, Aiden was very happy and playful but he had a 6 minute seizure when he woke up from his nap. He was sitting on the floor playing and he just slowly tipped forward. When I grabbed him, there was a lot of drool coming out of his mouth and his eyes were darting. He's back on his regular medication schedule now that we're home so I hope it kicks in fast and stops these seizures.
Aiden has a follow-up appt in two weeks and then we'll schedule an MRI as an outpatient procedure. By then I should have more information on what the neuro team has discussed.
I woke up this morning and went down to the cafeteria to get my coffee. When I got back to the room, the nurse who was watching Aiden said the neuro team had come by to tell me we get to go home today. Aiden was happy to get the electrodes off.
I was told Aiden had a seizure one night while I was sleeping and it showed up on the EEG. He also had a sub-clinical seizure that can only be seen on an EEG because there are no physical signs. The EEG showed the seizures were coming from the right side only, like we hoped. This means Aiden will most likely be a candidate for the hemispherectomy. The neuro team will get together with the surgeon and they will all discuss what the next step will be. They will consider factors like his age, developmental delay and whether or not they think the surgery will benefit Aiden.
I'm glad to be home but a little uncomfortable because Aiden has been completely off his anti-seizure meds for 4 days. When we got home, Aiden was very happy and playful but he had a 6 minute seizure when he woke up from his nap. He was sitting on the floor playing and he just slowly tipped forward. When I grabbed him, there was a lot of drool coming out of his mouth and his eyes were darting. He's back on his regular medication schedule now that we're home so I hope it kicks in fast and stops these seizures.
Aiden has a follow-up appt in two weeks and then we'll schedule an MRI as an outpatient procedure. By then I should have more information on what the neuro team has discussed.
Sunday, April 20, 2008
EEG Testing at UCLA - 6th Day
April 20, 2008
Jason came to the hospital yesterday to be with Aiden and I. He spent the night with us and I woke up early to go home to shower and do some laundry. While I was gone, Aiden had a seizure and it was captured on the EEG. My mom went back to the hospital with me so she could watch Aiden while Jay and I had lunch together. We all spent some time together and then mom and Jay went back home.We are one step closer to getting out of the hospital.
Friday, April 18, 2008
EEG Testing at UCLA - 4th Day
April 18, 2008
Day four and still no seizures. They've lowered his dosage of the anti-seizure medication from 7 pills a day to 1 a day in hopes that a seizure will happen soon. Ideally, they want to see 3 seizures, run an MRI and then we get to go home.
It's strange that Aiden was having seizures almost every day at home and then we get here and they stopped.
Day four and still no seizures. They've lowered his dosage of the anti-seizure medication from 7 pills a day to 1 a day in hopes that a seizure will happen soon. Ideally, they want to see 3 seizures, run an MRI and then we get to go home.
It's strange that Aiden was having seizures almost every day at home and then we get here and they stopped.
Tuesday, April 15, 2008
EEG Testing at UCLA - 1st Day
April 15, 2008Today is our first day at UCLA. Aiden's all hooked up to the EEG/telemetry monitor. He's got a video camera on him at all times to capture his seizures. We'll be here for a few days or until we get enough seizures captured. Our room is so small. There's barely enough room to move in here. There is no bed for me so I'll have to curl up on Aiden's bed.
Monday, January 7, 2008
Sturge-Weber rears it's ugly head, again.
January 7, 2008
Aiden almost made it 2 years seizure free until just before Christmas he started having brief (1 to 2 minutes) focal seizures again. His left bottom lip looked like it was being pulled down, he drooled and his breathing changed. This would happen up to 4 times a day. Of course I called his neurologist right away and he increased his dose of Topamax to 6 a day instead of 4 a day. After 2 days of the meds adjustment, the seizures stopped. I took Aiden in to see the neuro and he said that it's great that the seizures stopped but I should seriously consider him having a hemispherectomy. He gave me the number of a doctor here at UCLA. I had done some research on this surgery before and never thought it would be suggested for Aiden. His neuro always told me as long as the seizures are controlled with meds and he continues to make some progress developmentally, I didn't even need to think about the surgery. Now, I'm hearing a different story.
Apparently, Aiden has been having seizures the whole time but I just haven't been able to tell because there are no physical signs. EEGs never indicated this. Supposedly, the meds have just been controlling the "behavioral seizures". The doc says that explains Aiden's slow development. Aiden is almost 4. He crawls and cruises and is close to walking but he doesn't talk or chew. Now the surgery is urgent because we need to remove the damaged brain before the seizure behavior is transfered to the good side of the brain and slows his development further.
The evaluation process for the surgery has begun. Medical records are being transfered to UCLA and then the testing will begin. Doctors will then determine if the surgery is right for Aiden.
This is a very hard time for me emotionally. Thank goodness Aiden isn't aware of what's going on or what he faces. Please keep us in your thoughts and prayers during our new journey with Sturge-Weber Syndrome.
Aiden almost made it 2 years seizure free until just before Christmas he started having brief (1 to 2 minutes) focal seizures again. His left bottom lip looked like it was being pulled down, he drooled and his breathing changed. This would happen up to 4 times a day. Of course I called his neurologist right away and he increased his dose of Topamax to 6 a day instead of 4 a day. After 2 days of the meds adjustment, the seizures stopped. I took Aiden in to see the neuro and he said that it's great that the seizures stopped but I should seriously consider him having a hemispherectomy. He gave me the number of a doctor here at UCLA. I had done some research on this surgery before and never thought it would be suggested for Aiden. His neuro always told me as long as the seizures are controlled with meds and he continues to make some progress developmentally, I didn't even need to think about the surgery. Now, I'm hearing a different story.
Apparently, Aiden has been having seizures the whole time but I just haven't been able to tell because there are no physical signs. EEGs never indicated this. Supposedly, the meds have just been controlling the "behavioral seizures". The doc says that explains Aiden's slow development. Aiden is almost 4. He crawls and cruises and is close to walking but he doesn't talk or chew. Now the surgery is urgent because we need to remove the damaged brain before the seizure behavior is transfered to the good side of the brain and slows his development further.
The evaluation process for the surgery has begun. Medical records are being transfered to UCLA and then the testing will begin. Doctors will then determine if the surgery is right for Aiden.
This is a very hard time for me emotionally. Thank goodness Aiden isn't aware of what's going on or what he faces. Please keep us in your thoughts and prayers during our new journey with Sturge-Weber Syndrome.
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