So who is Ashley you ask? Evan's imaginary pet dinosaur of course! She's just a baby and very small but she's having a lot of seizures.
I'm not sure if the right response is to laugh or cry as Evan declares that Ashley is having a seizure, but it really is cute and you can't help but snicker a little. He turns all his attention to her or holds her while she has a seizure. He also talks to her while she has the seizure and lets us know when it's over so we can tell him how long it lasted. Poor little Ashley has cluster seizers and can easily have 10 of them in a row, but they are quick...10-40 seconds.
Evan's seizures are not traumatic experiences for him so I tend to think this type of imaginary play is really just a reflection of what is normal to Evan.
October 24, 2006
October 23, 2006
Appointment with Dr. Pearl
Today we went to see Dr. Pearl for Evan's 3-month appointment and follow-up from the AMT Pet Scan. We came away with quite a bit of information--more than I had expected.
Dr. Pearl was disappointed by the results of the AMT PET scan because it showed a larger area involved than originally expected. We had all hoped the test would pinpoint the tuber(s) as the trigger for Evan's seizures, but instead, a large area is identified as having increased activity and it is no longer such a "simple" brain surgery.
Because Evan is so "high functioning", Dr. Pearl doesn't feel surgery is a good option at this time because the seizures aren't effecting Evan's cognitive abilities. His opinion is to wait and see how things go and keep monitoring Evan to make sure he continues to develop at the same rate. If the seizures begin to have a negative cognitive effect, Dr. Pearl said he would feel differently about surgery.
He agreed with Dr. Chugani about trying Dilantin or Vigabatrin for the time being. So, our next drug is Dilantin and we're going to give it a two week trial to see if it reduces the seizures. If not, we'll move onto Vigabatrin and we'll probably give it the same amount of time for a trial. We're not thrilled about either drug and both have some nasty side effects that can occur after 6-12 months of usage. So, I guess we only have to worry about that if one of them works.
Dr. Pearl was disappointed by the results of the AMT PET scan because it showed a larger area involved than originally expected. We had all hoped the test would pinpoint the tuber(s) as the trigger for Evan's seizures, but instead, a large area is identified as having increased activity and it is no longer such a "simple" brain surgery.
Because Evan is so "high functioning", Dr. Pearl doesn't feel surgery is a good option at this time because the seizures aren't effecting Evan's cognitive abilities. His opinion is to wait and see how things go and keep monitoring Evan to make sure he continues to develop at the same rate. If the seizures begin to have a negative cognitive effect, Dr. Pearl said he would feel differently about surgery.
He agreed with Dr. Chugani about trying Dilantin or Vigabatrin for the time being. So, our next drug is Dilantin and we're going to give it a two week trial to see if it reduces the seizures. If not, we'll move onto Vigabatrin and we'll probably give it the same amount of time for a trial. We're not thrilled about either drug and both have some nasty side effects that can occur after 6-12 months of usage. So, I guess we only have to worry about that if one of them works.
October 20, 2006
Preliminary AMT Pet Scan Results
From my extensive neurology studies, I'd have to say it looks like the results from the AMT Pet scan are inconclusive. Not the best results. There were no surprises, but no real new information that I can tell.
I emailed with Dr. Chugani and he said "The scan shows increased activity over a large area on the right side, including temporal and parietal cortex. That whole area should be covered by grid electrodes, and what should be resected will depend on what the grids show. This is a useful guide as to where to put the grids...Certainly, the AMT scan showed a larger area then I would have suspected, and that's why this should all be covered by grids."
So, when he mentions grids, he's talking about having brain mapping done to see exactly where the seizures are starting to see what area of brain should be removed (resected). This test is a small surgery of it's own and the grids are put directly on the brain. This test would only be done once the decision to have surgery has been made.
We're starting to get into more hairy discussions about possible courses of action for Evan and surgery comes up in every conversation with doctors now. We'll meet with Dr. Pearl on Monday and it'll be interesting to hear what he has to say about the AMT Pet results, medication choices and surgery.
I emailed with Dr. Chugani and he said "The scan shows increased activity over a large area on the right side, including temporal and parietal cortex. That whole area should be covered by grid electrodes, and what should be resected will depend on what the grids show. This is a useful guide as to where to put the grids...Certainly, the AMT scan showed a larger area then I would have suspected, and that's why this should all be covered by grids."
So, when he mentions grids, he's talking about having brain mapping done to see exactly where the seizures are starting to see what area of brain should be removed (resected). This test is a small surgery of it's own and the grids are put directly on the brain. This test would only be done once the decision to have surgery has been made.
We're starting to get into more hairy discussions about possible courses of action for Evan and surgery comes up in every conversation with doctors now. We'll meet with Dr. Pearl on Monday and it'll be interesting to hear what he has to say about the AMT Pet results, medication choices and surgery.
October 16, 2006
AMT Pet Scan
The hotel we were staying at in Detroit filled up and I had a hard time getting back on the computer they had in the business center so I am updating this from home.
Evan did really well with the AMT Pet Scan on Friday. This test is the one that will hopefully identify which tuber(s) trigger his seizures. The test was two hours long and he was sedated for it. I was able to stay with him the whole time and Rob took Aria to the Ford factory tour for an outing.
Evan had the best pediatric nurse I've ever encountered and she was amazing to watch. I told her Evan is somewhat phobic about getting his vitals taken and she was able to get everything she needed without Evan fighting her or even crying! She just took her time and got down to his level--she gave him about 20 stickers that he quickly covered himself in and I think that helped break the ice! She also gave him some control and he pushed the blood pressure button. When Evan came out of sedation he was like a drunken soldier, staggering around and falling a lot, but that improved after he got something to eat. We don't have any results yet but are hoping to know more soon.
On Friday night Linda, Claire, Casey and Molly showed up and it was great to have some time to see them and catch up! We spent all day Saturday together and the kids had a blast playing with each other. They interacted so well with each other it was hard to believe they had just met! On Saturday night Linda hung out with all three sleeping children while the rest of us went out for a night of gambling--I thought we were due some good luck, but no big windfalls to report!
Evan did really well with the AMT Pet Scan on Friday. This test is the one that will hopefully identify which tuber(s) trigger his seizures. The test was two hours long and he was sedated for it. I was able to stay with him the whole time and Rob took Aria to the Ford factory tour for an outing.
Evan had the best pediatric nurse I've ever encountered and she was amazing to watch. I told her Evan is somewhat phobic about getting his vitals taken and she was able to get everything she needed without Evan fighting her or even crying! She just took her time and got down to his level--she gave him about 20 stickers that he quickly covered himself in and I think that helped break the ice! She also gave him some control and he pushed the blood pressure button. When Evan came out of sedation he was like a drunken soldier, staggering around and falling a lot, but that improved after he got something to eat. We don't have any results yet but are hoping to know more soon.
On Friday night Linda, Claire, Casey and Molly showed up and it was great to have some time to see them and catch up! We spent all day Saturday together and the kids had a blast playing with each other. They interacted so well with each other it was hard to believe they had just met! On Saturday night Linda hung out with all three sleeping children while the rest of us went out for a night of gambling--I thought we were due some good luck, but no big windfalls to report!
October 12, 2006
Big Doctor Day in Detroit
It's been a long day and my whole family is asleep--and it's only 8:00 pm! Evan had an EEG, a Pet scan and an appointment with Dr. Chugani today.
EEG
We knew this was going to be the hardest of all the tests, primarily because Evan couldn't be sedated for it and he's not the most cooperative patient. We were expecting shrieks of terror as medical staff held him down, swaddled him and put the EEG leads on his head.
We did our best to prepare him for the test and arrived equipped with lots of Thomas the Tank Engine paraphernalia and early birthday presents from Auntie Rosette, Uncle Bryan, Quentin & Sasha. Before they began the EEG prep, we asked if we could try to see if he'd cooperate before they swaddled him, although, even I wasn't sure it would work! As we began the process, Rob took Aria out of the room to explore the hospital--no need to have two freaked out kids! So, I began doling out the birthday gifts in the attempt to distract him, and amazingly, it worked! I won't go so far as to say that he was happy with the whole experience, but they didn't have to swaddle him. I read to him, sang to him and told him stories as they worked.
After the EEG leads were on his head they gave him an IV, which was no picnic, but they got the vein on the first try. Next they wrapped a towel around his neck (like Rocky) and taped him to the bed--several pieces across his chest and a couple across his legs which were covered in a blanket. They did this because they didn't want him to move around or pull at the EEG leads. Once they began the testing, he had to lay still and I wasn't supposed to interact with him for the full 30 min. test. He did really well and his arms weren't restrained, so I held his hand through the test and calmed him when he cried a little. When the test was over Evan and I were both really glad!
Pet Scan
Immediately following the EEG, we walked across the hall to have the Pet Scan. Before getting the sedation, Evan had a seizure while they were taking his blood pressure--too much stress for him I think. Everyone in the room seemed to feel really bad that he had a seizure and decided they didn't need the blood pressure. I think they thought I would be freaked out too, but I'm pretty used to the seizures at this point and it was the fourth one today. While they sedated Evan, I was able to hold him in my arms as they put the drugs directly into his IV site. He gently fell asleep and we put him on the table to have the Pet scan. This test was also 30 min. long and he slept through the whole thing.
When the test was over and Evan woke up, Rob and Aria joined us in one of the exam rooms and we washed all the EEG goop out of Evan's hair, got him dressed and headed to the cafeteria for lunch.
Dr. Chugani
After lunch we met with Dr. Chugani for a consultation appointment. We were very impressed with and him and since he was already familiar with Evan's case, he pretty much knew what we were going to ask before he walked in the room.
So, basically, the whole reason for having the testing in Detroit is because Evan is a candidate for brain surgery. The hope is that the AMT Pet Scan tomorrow will identify which tubers are "hot" and causing seizures, that way if surgery is the only option, they know which one to remove.
Dr. Chugani said he thinks the tuber most likely to be hot is the one right next to his motor strip and removing it would most likely leave Evan with a permanent impairment of his left hand--maybe a little, maybe a lot. Because Evan is not suffering in terms of cognitive development, Dr. Chugani recommended trying one or two more drugs first. The two drugs he mentioned are Dilantin and Vigabatrin and we're not thrilled with either, but if one of them works, it's better than surgery. It's also possible that one of the other two tubers are the cause of Evan's seizures, but unfortunately the Video EEG results point to that one too.
So I guess we continue our dance with the conversation of surgery and drugs for a little while and hope that when we have to make a decision, we make the right one.
EEG
We knew this was going to be the hardest of all the tests, primarily because Evan couldn't be sedated for it and he's not the most cooperative patient. We were expecting shrieks of terror as medical staff held him down, swaddled him and put the EEG leads on his head.
We did our best to prepare him for the test and arrived equipped with lots of Thomas the Tank Engine paraphernalia and early birthday presents from Auntie Rosette, Uncle Bryan, Quentin & Sasha. Before they began the EEG prep, we asked if we could try to see if he'd cooperate before they swaddled him, although, even I wasn't sure it would work! As we began the process, Rob took Aria out of the room to explore the hospital--no need to have two freaked out kids! So, I began doling out the birthday gifts in the attempt to distract him, and amazingly, it worked! I won't go so far as to say that he was happy with the whole experience, but they didn't have to swaddle him. I read to him, sang to him and told him stories as they worked.
After the EEG leads were on his head they gave him an IV, which was no picnic, but they got the vein on the first try. Next they wrapped a towel around his neck (like Rocky) and taped him to the bed--several pieces across his chest and a couple across his legs which were covered in a blanket. They did this because they didn't want him to move around or pull at the EEG leads. Once they began the testing, he had to lay still and I wasn't supposed to interact with him for the full 30 min. test. He did really well and his arms weren't restrained, so I held his hand through the test and calmed him when he cried a little. When the test was over Evan and I were both really glad!
Pet Scan
Immediately following the EEG, we walked across the hall to have the Pet Scan. Before getting the sedation, Evan had a seizure while they were taking his blood pressure--too much stress for him I think. Everyone in the room seemed to feel really bad that he had a seizure and decided they didn't need the blood pressure. I think they thought I would be freaked out too, but I'm pretty used to the seizures at this point and it was the fourth one today. While they sedated Evan, I was able to hold him in my arms as they put the drugs directly into his IV site. He gently fell asleep and we put him on the table to have the Pet scan. This test was also 30 min. long and he slept through the whole thing.
When the test was over and Evan woke up, Rob and Aria joined us in one of the exam rooms and we washed all the EEG goop out of Evan's hair, got him dressed and headed to the cafeteria for lunch.
Dr. Chugani
After lunch we met with Dr. Chugani for a consultation appointment. We were very impressed with and him and since he was already familiar with Evan's case, he pretty much knew what we were going to ask before he walked in the room.
So, basically, the whole reason for having the testing in Detroit is because Evan is a candidate for brain surgery. The hope is that the AMT Pet Scan tomorrow will identify which tubers are "hot" and causing seizures, that way if surgery is the only option, they know which one to remove.
Dr. Chugani said he thinks the tuber most likely to be hot is the one right next to his motor strip and removing it would most likely leave Evan with a permanent impairment of his left hand--maybe a little, maybe a lot. Because Evan is not suffering in terms of cognitive development, Dr. Chugani recommended trying one or two more drugs first. The two drugs he mentioned are Dilantin and Vigabatrin and we're not thrilled with either, but if one of them works, it's better than surgery. It's also possible that one of the other two tubers are the cause of Evan's seizures, but unfortunately the Video EEG results point to that one too.
So I guess we continue our dance with the conversation of surgery and drugs for a little while and hope that when we have to make a decision, we make the right one.
October 09, 2006
Look out Detroit, here we come!
We leave day after tomorrow for our Detroit trip. We've thoroughly researched the goings on in Detroit and I'm happy to say that it looks like there's actually quite a bit to do there! We will have downtime on Wednesday after we arrive and all day Saturday. Evan's test on Friday is three hours long so one of us will probably take Aria to do something during that time as well.
What is there to do in Detroit you ask? Well, we focused on kid-friendly things and came up with a pretty good list:
Ford Factory Tour
Greenfield Village
Detroit Science Center
Detroit Children's Museum
Belle Isle
Westview Orchards
Holiday Inn Pool (this one might get a LOT of use!)
We won't be able to do everything, but it gives us some good options!
On Friday, my cousin Claire, her husband, Casey, their daughter, Molly and my Aunt Linda are all joining us in Detroit for the weekend! Since Indianapolis is only 5 hrs. away, they decided to make the trek. We're hoping to have adjoining hotel rooms too. I'm really looking forward to seeing everyone, and it's so nice to have the family support too!
What is there to do in Detroit you ask? Well, we focused on kid-friendly things and came up with a pretty good list:
Ford Factory Tour
Greenfield Village
Detroit Science Center
Detroit Children's Museum
Belle Isle
Westview Orchards
Holiday Inn Pool (this one might get a LOT of use!)
We won't be able to do everything, but it gives us some good options!
On Friday, my cousin Claire, her husband, Casey, their daughter, Molly and my Aunt Linda are all joining us in Detroit for the weekend! Since Indianapolis is only 5 hrs. away, they decided to make the trek. We're hoping to have adjoining hotel rooms too. I'm really looking forward to seeing everyone, and it's so nice to have the family support too!
October 07, 2006
New Findings: Chocolate Milk Prevents Seizures!
Ok, I'll qualify this--new findings at the Moss house, and purely unscientific. We have been giving Evan a LOT of chocolate milk and he hasn't had any seizures in two days! Although there may not be a lot of scientific evidence here, it is an uncanny correlation! And it has the added benefit of making Evan (and Aria by default) very happy. I'm also happy to report that Aria hasn't had any seizures while on the chocolate milk therapy--she is the control group.
October 02, 2006
We're going to Detroit!
It's been a whirlwind getting the appointments in Detroit scheduled because we have three appointments to schedule while we're there and it's a lot to organize! But we got everything worked out this morning and we'll be in Detroit next week! Here's the rundown of appointments:
Oct. 12
9:15 am -- Glucose Pet scan with EEG
3:00 pm -- Consultation with Dr. Chugani
Oct. 13
12:00 pm -- AMT Pet scan
We'll arrive in Detroit around noon on Wed. and will leave Sun. morning. We plan to check out the Ford Museum on Sat. and hopefully have some fun while we're there!
Oct. 12
9:15 am -- Glucose Pet scan with EEG
3:00 pm -- Consultation with Dr. Chugani
Oct. 13
12:00 pm -- AMT Pet scan
We'll arrive in Detroit around noon on Wed. and will leave Sun. morning. We plan to check out the Ford Museum on Sat. and hopefully have some fun while we're there!
Dr. Gaillard
Yes, we have another new doctor to add to our collection of neurologists! We met with Dr. Gaillard at Children's Hospital in D.C. this morning and he seems like yet another impressive doctor on staff there.
There wasn't much new information today, but it's always interesting to hear another perspective in our information gathering. Evan is quite "famous" in the Epilepsy Center and he was more than a little familiar with Evan's case. Apparently they review his case almost every week in the big meeting they have every Thursday. Hmmm, should we be flattered or scared that 25-30 doctors talk about our son every week?
These appointments get increasingly harder, logistically speaking, especially with Aria in school 5 mornings a week! This morning David came over early and shuttled Aria to and from school. He and Gretta are in the process of remodeling their house, so he was also happy to have a place to do some laundry and it was a huge help to us!!
There wasn't much new information today, but it's always interesting to hear another perspective in our information gathering. Evan is quite "famous" in the Epilepsy Center and he was more than a little familiar with Evan's case. Apparently they review his case almost every week in the big meeting they have every Thursday. Hmmm, should we be flattered or scared that 25-30 doctors talk about our son every week?
These appointments get increasingly harder, logistically speaking, especially with Aria in school 5 mornings a week! This morning David came over early and shuttled Aria to and from school. He and Gretta are in the process of remodeling their house, so he was also happy to have a place to do some laundry and it was a huge help to us!!
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