...when I actually received a call back this morning. I had already decided I would have to place a call myself after Austin's breakfast to give them a nudge. Surprisingly, I didn't have to.
And once again, I was shocked when I found out our doctor actually wanted to do more investigation. Another dreadful EEG, possibly up to three days this time depending on how long it takes to capture all his seizures. And a PET scan. I was confused on this one since I wasn't aware that there was one in the area that was capable of accurately scanning Austin. Turns out, it's not at our hospital, but another one in the community. Wonder where that may be. Maybe the hospital I'm trying to get into. Regardless though, I'm pleasantly surprised that they're taking this seriously.
There definitely are several questionable factors in the equation. The first being the EEG. The second being last year's PET. But, with solid MRI evidence, they think it's worth checking out. Especially since his seizures have taken on a new appearance, the premature preference for his left hand, and the obvious signs of right sided discomfort in connection with seizures. She certainly seemed hesitant in giving me much hope, but the fact that they are willing to check it out is enough to go on for the moment.
In other news, the doctor I was trying to switch to...not taking new patients...as of two weeks ago. That so figures. On top of that, there's not another epilepsy specialist in the hospital. I asked about a recommendation for another one, which turns out to be about 5 hours away in Austin. But, my mom actually found a job posting where they are looking for new epis, so we'll see what happens there.
Thursday, July 8, 2010
Wednesday, July 7, 2010
Here goes nothin'
In a desperate attempt to get this whole MRI thing resolved, I broke down and emailed Dr. C. I had originally planned on waiting until hearing back from our clinic and getting their opinion first, but I just couldn't help myself. It tore at me all weekend and keeping in mind their history of response time vs his...It was a no brainer.
I spared no detail in my original message, fully expecting a negative response. What I got?
Not quite as negative as I thought. Although he said it could be an indication of bilateral abnormalities, he did leave the door open and seemed eager to look it over. He explained that focal slowing typically means there is a structural lesion on that side, but still wanted to review them before making assumptions. Of course, there's no telling when our hospital will actually get the discs sent over. Why can't I ever remember to request copies while we're there? Ugh, I want to kick myself sometimes. Actually, in my defense, I truly don't think I was expecting any change in the MRI. I thought my correspondence with Detroit was history. I guess it may be after he reviews everything. But I gotta keep trying, right?
I spared no detail in my original message, fully expecting a negative response. What I got?
Not quite as negative as I thought. Although he said it could be an indication of bilateral abnormalities, he did leave the door open and seemed eager to look it over. He explained that focal slowing typically means there is a structural lesion on that side, but still wanted to review them before making assumptions. Of course, there's no telling when our hospital will actually get the discs sent over. Why can't I ever remember to request copies while we're there? Ugh, I want to kick myself sometimes. Actually, in my defense, I truly don't think I was expecting any change in the MRI. I thought my correspondence with Detroit was history. I guess it may be after he reviews everything. But I gotta keep trying, right?
Monday, July 5, 2010
Regarding the MRI
I've had a little more time to process the information I received on Friday (the left sided findings from the MRI), and realized this probably doesn't change much. It may, in fact, be another indication of bilateral abnormalities, largely due to the VEEG he had back in January. Although there was no focus detected, there was focal slowing to the right side between seizures. Not the left. The two do not correlate at all. That's definitely not good.
I was so distracted by the fact that there was finally evidence that supported my left sided theory that I didn't stop to really focus on the main issue. Yes, there's a left sided abnormality. But...it's extremely likely that there's a right one as well. Which probably explains why I wasn't informed and steps were not taken. I'm certainly not defending a doctor that did not have to decency to discuss my son's first abnormal MRI, but I'm starting to understand why is wasn't a pivotal moment when the results came back.
I'm still planning on trying someone new, regardless of the outcome. Many of you know I've never been satisfied with our current hospital. But, it was the only place in our area that any of the other doctors and specialists we've seen have recommended...especially Dr. C. I truly valued his opinion and if he said we should try to stick with them, I thought I'd give it another go with an open mind. Well, it's been over a year and I'm still not happy with them. I'm thinking I'll most likely just try to get an appointment at the other hospital in the area and just see if they're a good fit and go from there.
I mainly just wanted to clear up the inconsistencies from my last post. I knew at the time that the EEG wasn't particularly supportive, but for some reason I thought it could be wrong or not even be a major factor. But, after all the nonstop thinking and comparing other test results over the weekend, I finally stopped and saw it for what it really is. Very likely bilateral. I really just wanted to believe that it wouldn't matter. I guess that's just what happens when my heart responds more quickly than my brain.
I was so distracted by the fact that there was finally evidence that supported my left sided theory that I didn't stop to really focus on the main issue. Yes, there's a left sided abnormality. But...it's extremely likely that there's a right one as well. Which probably explains why I wasn't informed and steps were not taken. I'm certainly not defending a doctor that did not have to decency to discuss my son's first abnormal MRI, but I'm starting to understand why is wasn't a pivotal moment when the results came back.
I'm still planning on trying someone new, regardless of the outcome. Many of you know I've never been satisfied with our current hospital. But, it was the only place in our area that any of the other doctors and specialists we've seen have recommended...especially Dr. C. I truly valued his opinion and if he said we should try to stick with them, I thought I'd give it another go with an open mind. Well, it's been over a year and I'm still not happy with them. I'm thinking I'll most likely just try to get an appointment at the other hospital in the area and just see if they're a good fit and go from there.
I mainly just wanted to clear up the inconsistencies from my last post. I knew at the time that the EEG wasn't particularly supportive, but for some reason I thought it could be wrong or not even be a major factor. But, after all the nonstop thinking and comparing other test results over the weekend, I finally stopped and saw it for what it really is. Very likely bilateral. I really just wanted to believe that it wouldn't matter. I guess that's just what happens when my heart responds more quickly than my brain.
Saturday, July 3, 2010
New findings
I finally got the disc of seizures/behaviors together to send to our clinic. Then spent an entire week anxiously waiting to hear back, and finally yesterday I did.
Even though I included a very detailed note, it still took quite a bit of conversation to convince them of my purpose. Which, by the way, was two-sided. First, I wanted to know if they could identify the types of seizures Austin's been having, and second, whether or not there is any significance to the right sided behaviors and seizures. I practically had to spell it out. And what did I find out?
Well, first of all, they are categorizing his seizures as tonics and atonics.
But, the most surprising of all?
ONCE I finally got the message across that I wasn't concerned that the hand slapping and leg grabbing were seizures, but rather an aura of sorts, I got her attention. By the way, I still had to get past the fact that our lead doctor didn't care if they were auras or not. He said that regardless if it is in fact an aura, it doesn't matter. I told her my concern wasn't whether it was an aura, but does it give any indication whatsoever of a focal point? That in combination with his recent right sided seizures AND the early preference for his left hand.
"Well, that's a very good question, and that's exactly the types of things we like to look for in trying to locate a focal point."
Okay...so....?
Here's the most mind boggling part for me.
She looks back for the report on his most recent MRI (from February). I never did get the results from this one. I cornered our doctor in the elevator and asked him while we were in the hospital initiating the diet if he had results, and he hadn't reviewed it yet. He pretty much said he would let me know if there was anything different. So, about five months later, I'm still assuming it was clean. But it wasn't. And no one notified me.
Apparently, there appears to be dysplasia in his left frontal lobe. LEFT.
And when I inquired about whether or not there was any significance to his latest behaviors and seizures, he didn't even bother to think about it. He just said the hand slapping is not a seizure (which wasn't at all my question) and that it could be an aura, but it "doesn't matter".
Needless to say, I'm 100% convinced that it does matter. And the doctor I was speaking to (she's the one we've been dealing with for the diet, but reports to our main epilepsy specialist) agreed.
She said that she certainly believes this warrants further investigation. Duh.
However, there is one potential problem. There is no correlation with his last VEEG (from January). Actually, even though there's no focus indicated during the seizures themselves, it shows more activity on the right side between seizures. Which is not supportive of his MRI and behaviors.
She said they definitely need correlation to pursue surgery, and will discuss with our other doctor what steps we may need to take in order to get more information. She's already mentioned the "E" word. I hate that one. EEG.
I, on the other hand, have another plan in mind, depending on what his opinion is. I'm thinking (especially if he blows me off again) about another doctor in another hospital. In fact, I think I've already found one. They boast a PET scan & the only MEG scan in North America specifically developed for children. And it just happens to be in the same medical center. I don't know what the chances are for getting a MEG scan. Or the PET. Or even if the PET scanner they have can accommodate a child Austin's age. But, if we don't transfer we certainly won't get them done. And if we do transfer, we'll at least have our foot in the door and be one step closer to getting these tests done.
I was just talking to my mom this morning. I think the part I have the most problem comprehending, is that this guy has all the education and the resources to try to make a difference in a child's life. My child's life. And, as she said, he dropped the ball. Now, I don't know whether or not Austin is a surgical candidate, but what if he is? And this doctor doesn't even care. This isn't just any situation. It's my son's future. His entire future is on the line here. I've completely lost any and all confidence I had in this guy, regardless whether or not Austin's seizures can be stopped by surgery. I just can't trust that he's trying everything in his power to help us.
So, that's where we are. Oh, and by the way, we're going down on Austin's ratio on the diet. Seizures and lipids are just too high to continue like this. The risks are starting to outweigh the benefits. Our plan is to lower it slowly and monitor closely for changes. If the seizures don't change we will keep lowering it until we either: a) see a change, at which point we will reassess the diet's effectiveness, or b) have him completely weaned from the diet.
For any of you parents that have dealt with the surgery, I'm curious how many of you have had solid EEG evidence correlating with the PET and/or MRI. I know it can't contradict, but how many have proceeded with surgery without a useful EEG?
Even though I included a very detailed note, it still took quite a bit of conversation to convince them of my purpose. Which, by the way, was two-sided. First, I wanted to know if they could identify the types of seizures Austin's been having, and second, whether or not there is any significance to the right sided behaviors and seizures. I practically had to spell it out. And what did I find out?
Well, first of all, they are categorizing his seizures as tonics and atonics.
But, the most surprising of all?
ONCE I finally got the message across that I wasn't concerned that the hand slapping and leg grabbing were seizures, but rather an aura of sorts, I got her attention. By the way, I still had to get past the fact that our lead doctor didn't care if they were auras or not. He said that regardless if it is in fact an aura, it doesn't matter. I told her my concern wasn't whether it was an aura, but does it give any indication whatsoever of a focal point? That in combination with his recent right sided seizures AND the early preference for his left hand.
"Well, that's a very good question, and that's exactly the types of things we like to look for in trying to locate a focal point."
Okay...so....?
Here's the most mind boggling part for me.
She looks back for the report on his most recent MRI (from February). I never did get the results from this one. I cornered our doctor in the elevator and asked him while we were in the hospital initiating the diet if he had results, and he hadn't reviewed it yet. He pretty much said he would let me know if there was anything different. So, about five months later, I'm still assuming it was clean. But it wasn't. And no one notified me.
Apparently, there appears to be dysplasia in his left frontal lobe. LEFT.
And when I inquired about whether or not there was any significance to his latest behaviors and seizures, he didn't even bother to think about it. He just said the hand slapping is not a seizure (which wasn't at all my question) and that it could be an aura, but it "doesn't matter".
Needless to say, I'm 100% convinced that it does matter. And the doctor I was speaking to (she's the one we've been dealing with for the diet, but reports to our main epilepsy specialist) agreed.
She said that she certainly believes this warrants further investigation. Duh.
However, there is one potential problem. There is no correlation with his last VEEG (from January). Actually, even though there's no focus indicated during the seizures themselves, it shows more activity on the right side between seizures. Which is not supportive of his MRI and behaviors.
She said they definitely need correlation to pursue surgery, and will discuss with our other doctor what steps we may need to take in order to get more information. She's already mentioned the "E" word. I hate that one. EEG.
I, on the other hand, have another plan in mind, depending on what his opinion is. I'm thinking (especially if he blows me off again) about another doctor in another hospital. In fact, I think I've already found one. They boast a PET scan & the only MEG scan in North America specifically developed for children. And it just happens to be in the same medical center. I don't know what the chances are for getting a MEG scan. Or the PET. Or even if the PET scanner they have can accommodate a child Austin's age. But, if we don't transfer we certainly won't get them done. And if we do transfer, we'll at least have our foot in the door and be one step closer to getting these tests done.
I was just talking to my mom this morning. I think the part I have the most problem comprehending, is that this guy has all the education and the resources to try to make a difference in a child's life. My child's life. And, as she said, he dropped the ball. Now, I don't know whether or not Austin is a surgical candidate, but what if he is? And this doctor doesn't even care. This isn't just any situation. It's my son's future. His entire future is on the line here. I've completely lost any and all confidence I had in this guy, regardless whether or not Austin's seizures can be stopped by surgery. I just can't trust that he's trying everything in his power to help us.
So, that's where we are. Oh, and by the way, we're going down on Austin's ratio on the diet. Seizures and lipids are just too high to continue like this. The risks are starting to outweigh the benefits. Our plan is to lower it slowly and monitor closely for changes. If the seizures don't change we will keep lowering it until we either: a) see a change, at which point we will reassess the diet's effectiveness, or b) have him completely weaned from the diet.
For any of you parents that have dealt with the surgery, I'm curious how many of you have had solid EEG evidence correlating with the PET and/or MRI. I know it can't contradict, but how many have proceeded with surgery without a useful EEG?
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