It's been months since my last post. It certainly hasn't been because I've been super busy. I just haven't wanted to to be completely honest. I really haven't had the desire to sort through everything we've been dealing with -in an emotional sense. Probably because I still don't even know myself what I feel. My facebook friends have an idea what's been going on for the last few months, and they probably also know I've become the "crazy dog lady" too lately...lol. What a distraction that has been. Much much needed. I needed something to take my mind off researching seizures and resection surgeries to keep me from going nuts.
It hasn't been working for the last few days. I just entered Day 3 of waiting on "the call". How a doctor can purposely postpone one of the most anticipated phone calls a parent can get is beyond me. I'm amazed at his audacity to make me wait like this. And for those of you scratching your heads because I haven't been in touch...
I'm waiting to hear whether or not Austin is a surgical candidate for epilepsy surgery. Every single time the phone rings, I start trembling...my head spins and I feel nauseous. This makes the fourth time I've waited on a call like this in the past month and a half. First for the PET scan results, then the first surgical committee meeting, then the 3T MRI...Now the second surgical board meeting. Each and every time I thought we would get huge info and some type of direction.
Our lives have pretty much been on hold this entire time. Not knowing which way to go because everything is dependent on this call. And while I wait, I imagine both scenarios in my mind. Scared to death either way. Will I really be happy if he says they recommend surgery? Not really. I never ever wanted this. Relieved maybe...not happy. Will I be devastated if they say no? I don't know. I do know we will get a second opinion, but I honestly don't know how I will feel either way.
So, this is exactly why I haven't been posting. My emotions are swirling and it's been so much easier to let myself be distracted because until I know what their decision was Tuesday morning...there's just nothing. No news, nothing but nerves and confusion.
And just to recap all the evidence we do have to support Austin's (possible) left sided focus:
MRI with suggested dysplasia left frontal lobe (Feb 10)
48 hr EEG with slightly more activity in left hemisphere (Sept 10)
3T MRI with suggested dysplasia left frontal lobe (Oct10)
Early left hand preference with slight right sided hemiparesis (noticed Sept 08 -ongoing)
Visible right sided seizures (videotaped July '10)
Right hand irritation (May 08 -present)
Looks kind of convincing, right?
Not supporting this are FDG & FMZ PET scans that show right sided abnormalities (March 09)
That coupled with the fact that all the other evidence is subjective. Nothing is a clear indication or very well defined. It can all be interpreted differently depending on who is viewing it. THAT's why I'm a wreck. Because it could really and truly go either way.
Maybe we'll find out today...maybe.
Thursday, November 4, 2010
Thursday, July 8, 2010
Imagine my surprise...
...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.
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.
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?
Tuesday, June 22, 2010
Another clip
This is another clip of Austin grabbing his right leg and slapping his right hand before/during/after the small set of spasms. I find it extremely odd that there were right sided abnormalities found on the PET scan. If anything has ever been consistent during this rollercoaster of IS, it's that he has never strayed from the right hand issues. This has been going on since just before I saw the first spasms. It has never been his left hand and the frequency and severity of it has only intensified. Not only that, but it goes with his partiality to his left hand (he's shown a preference since he was 9-10 months old). And now? His head jerks to the right with certain types of seizures. I so wish we could get a repeat PET scan. I just wish we could do it closer to home. I guess just because he has consistent left hemisphere symptoms, it doesn't mean it's not bilateral. Not that I'm wanting to revisit the surgical world...but, I just wish I knew why his behaviors and symptoms don't seem to support the findings.
Monday, June 21, 2010
What kind of seizure is this?
After months and months, I was finally able to catch this seizure on video (47 seconds into the video). I have no clue what type it is -if it's not a spasm. I'm hoping someone more knowledgeable can help me figure this out because my description to our epi hasn't resulted in a definitive answer.
Also, check out how Austin grabs at his right leg about 30 seconds before the seizure. This is typical as is the way he slaps his right hand (in another video I'll post soon). Another thing I've noticed and been trying to catch is the change in his left eye after these seizures. I know it appears to be the helmet, because when I take it off in the video, it looks normal again. I think this is just a coincidence because his eye does this with or without his helmet on. I'm curious what's causing this. I've noticed changes in the appearance of his eye since his diagnosis. I always thought it was nothing, until lately when it started getting more pronounced. The eye may be difficult to spot...the video quality is awful.
Also, check out how Austin grabs at his right leg about 30 seconds before the seizure. This is typical as is the way he slaps his right hand (in another video I'll post soon). Another thing I've noticed and been trying to catch is the change in his left eye after these seizures. I know it appears to be the helmet, because when I take it off in the video, it looks normal again. I think this is just a coincidence because his eye does this with or without his helmet on. I'm curious what's causing this. I've noticed changes in the appearance of his eye since his diagnosis. I always thought it was nothing, until lately when it started getting more pronounced. The eye may be difficult to spot...the video quality is awful.
Thursday, May 20, 2010
Days like today - I didn't want to...
But, I couldn't not acknowledge this day...or this entire week for that matter. I mean, it's sole reason behind this blog.
Another year has gone by. Two total since we began this journey. On May 19, 2008, we made the two hour drive to Texas Children's Hospital in hopes we would be sent home with a new found peace. Instead, we spent the rest of the week there. And on this day that year, May 20, 2008, Austin had his first EEG. We were still clueless as to what that really meant. Even after returning home with a new diagnosis, we had no idea what it really meant.
I wish I never really did have to find out what infantile spasms meant. Thinking back to the prego days, I always wanted a happy, healthy, thriving baby. Health was critical. And he is healthy. But, in all the times I worried about things that may happen or complications or diseases I feared...I never once thought Gee, I really hope he doesn't develop epilepsy.
Nope, never entered my mind. Never realized how severe it could be. To me, epilepsy was not an ongoing battle. People I knew of that had it only had occasional seizures. Certainly not 100+ every single day. And none had deficits because of it.
Even with all my new spiritual growth and optimism, I can't deny that days like today don't nag at me. I do still grieve over the life we didn't have and the milestones we have yet to reach. Days like today force me to wonder what life would be like right now had the term "infantile spasms" never been said two years ago today.
I would probably still be an over the top safety nut...a constant worrier...and a proud mama. I would most likely be dreading the beginning of potty training days right about now. I bet I would probably enjoy getting out more than I do now. We probably would have made lots of family outings by now...restaurants, shopping, the zoo, boating at the lake, parks, and maybe even a vacation? Who knows, I might would even be working and/or thinking about family additions at this point.
It's so easy to go "there". That place you wish you were. So easy. It's sad...very sad when you snap out of it and realize you're not there and may never be. But, if these past two years have taught me anything, it's that anything can happen. And not just devastating epilepsy disorders like infantile spasms. But, good stuff too. At least five of the eight kids that I have followed closely over the past couple years are seizure free now. Just because something horrible has happened, doesn't mean it will always be this way. That kind of thinking and my faith is how I manage days like today.
We'll get there too.
Another year has gone by. Two total since we began this journey. On May 19, 2008, we made the two hour drive to Texas Children's Hospital in hopes we would be sent home with a new found peace. Instead, we spent the rest of the week there. And on this day that year, May 20, 2008, Austin had his first EEG. We were still clueless as to what that really meant. Even after returning home with a new diagnosis, we had no idea what it really meant.
I wish I never really did have to find out what infantile spasms meant. Thinking back to the prego days, I always wanted a happy, healthy, thriving baby. Health was critical. And he is healthy. But, in all the times I worried about things that may happen or complications or diseases I feared...I never once thought Gee, I really hope he doesn't develop epilepsy.
Nope, never entered my mind. Never realized how severe it could be. To me, epilepsy was not an ongoing battle. People I knew of that had it only had occasional seizures. Certainly not 100+ every single day. And none had deficits because of it.
Even with all my new spiritual growth and optimism, I can't deny that days like today don't nag at me. I do still grieve over the life we didn't have and the milestones we have yet to reach. Days like today force me to wonder what life would be like right now had the term "infantile spasms" never been said two years ago today.
I would probably still be an over the top safety nut...a constant worrier...and a proud mama. I would most likely be dreading the beginning of potty training days right about now. I bet I would probably enjoy getting out more than I do now. We probably would have made lots of family outings by now...restaurants, shopping, the zoo, boating at the lake, parks, and maybe even a vacation? Who knows, I might would even be working and/or thinking about family additions at this point.
It's so easy to go "there". That place you wish you were. So easy. It's sad...very sad when you snap out of it and realize you're not there and may never be. But, if these past two years have taught me anything, it's that anything can happen. And not just devastating epilepsy disorders like infantile spasms. But, good stuff too. At least five of the eight kids that I have followed closely over the past couple years are seizure free now. Just because something horrible has happened, doesn't mean it will always be this way. That kind of thinking and my faith is how I manage days like today.
We'll get there too.
Thursday, May 13, 2010
Jay Mohr on Diaper Duty
I had to lighten the mood a bit since my last post. This definitely made me laugh! :)
A must read for any of you potty training parents...or actually just about anyone with a sense of humor!
Jay Mohr on Diaper Duty
Jay Mohr on Diaper Duty
Thursday, May 6, 2010
In honor of Mother's Day
So, this Mother's Day weekend has already gotten off to a terrible start. I woke to a text from my mother telling me to call her when I got up. I knew before even calling what happened. My great grandmother was gone. I can't even describe what an emotional year this has been with both sides of my family. We've lost too many loved ones lately...Chad's family included. And to make matters worse, it's almost Mother's Day. And I've had the looming reminder that we buried my other grandmother eight years ago this week. There's more. Just last week Chad lost his aunt and two days later I lost a great great aunt (my great grandmother's sister). All mothers. And grandmothers. Two were great grandmothers. And one a great great grandmother. All dearly loved and all will be dearly missed this Mother's Day.
Sunday, May 2, 2010
Is it May already?!
Yikes, has it really been that long since my last post? I've been so buried under the day-to-day that I didn't realize it's been over a month.
I have to say...it's been a relief to have had a break though. Freeing myself from the nonstop obsession with IS has helped me. Not that I don't still think about it nearly every minute of every day, but it's different when I'm not swimming in it like I was before. I like the new me. I get more done around the house, I spend more time with Austin, and I'm finding new interests (like being a rockstar in my spare time -a lot of you will know what I'm talking about!)...
Once again though, I have to say...I miss the close contact I had with everyone on here. I thought of little Trevy on his birthday (a date that's permanently stamped into my mind because we are birthday buddies) and wondered how his mommy was handling this momentous milestone. I've had Bennett in my thoughts as well...curious how his new school has been for him. And precious Sophie. Her one year mark since the surgery is fast approaching. What a big girl she is! I've especially thought of Maddie and how she's done post-diet. And big girl sitter Madie...and the sweetheart Colby. All these kiddos have always been on my mind. But, I haven't had the courage to dive back into that. Scared I would get back into old habits of the seizure obsession and disorder comparisons...knowing the fears I've worked so hard to conquer would most likely creep back in to haunt me again. I just couldn't go back there just yet. Trying to keep a safe distance for my family's sake, because I know they prefer me to be here rather than seizure land. Not that checking up on our buddies is a bad thing. But, three of our buddies are seizure free now -which is WONDERFUL! But, that's where my fear comes in. I get scared of never getting there. Comparing and obsessing and despairing and pitying my situation. That was not working for me. I LOVE these kids. I love their parents. I love that they have had the chance to try and start over. I've just needed to live here in my own reality for a while and not compare Austin to other kids. And it has helped me celebrate the smaller things he accomplished so much more.
Anyway, on to business...We have seen Austin transform again since the Lamictal wean was complete. Blowing noises are back (he stopped a couple weeks into the start of the med and started back two days after coming off)! Interaction is considerably improved. Smiles, laughs, giggles, toy banging and functioning!! Lots of great new moments around here!
The diet is still going well. My mom and I have a "date" about every other Saturday where we make Austin dinners all day to freeze. It makes this SO much easier. Usually the only meal I will prepare on the spot is breakfast -the others are pre-made. She has been a tremendous help! She knows when I'm starting to wear down and always steps in and helps...whether it's helping prepare food, buying new contraptions to simplify my life (see pic below), or watching him for me for the night so I can relax a bit. I honestly couldn't handle any of this diet or disorder without her.
Last night was the best surprise ever...no noticeable seizures for at least 5 waking hours!! Yeah! And this morning started awesome as well with only 2 seizures in 3 hours.
We will continue to tweak the diet and medication to get even more improvement. My hope is for him to get off the last two meds sometime soon. We saw cognitive AND seizure improvement after the Lamictal wean. And thinking back, the best he's ever done (seizure wise and cognitively) was when he was on the least amount of AEDs. I'd like to see how the diet will work for him without the meds. There are sometimes more improvements in kids once all meds are removed. It's a goal anyway.
So, that's where we are. Finally moving in the right direction!
Austin's new "no helmet zone".
Saturday, March 27, 2010
The long haul
Okay, so my imagination was bigger than my common sense. I had big plans of keeping in touch, updating on our progress throughout the diet, etc. Obviously, I underestimated the time this would require. Still totally worth it though!
We continue to see improvements. Not as steady or as huge as I anticipated, but they're there nonetheless. That's good enough for me to settle into this for the long haul.
The thing I really really love about this diet...That there are SO many variables. So if something's not working, there are many areas to explore and tweak. It can certainly get overwhelming at times as far as knowing where to look for problems...but it's not like a med where you try it and that's that. Triggers for seizures can be in the food, meds, fluids, calories, timing, meal spacing, ratio...I could go on and on. So, for me, I feel like there's always a light at the end of the tunnel.
What I hate...the portion sizes and the redundancy. I'm not completely sure where Austin ranked in the appetite department compared to other kids his age before the diet, but these amounts are definitely not what he's used to. He always seems hungry, even after our efforts to address this. He cries when meals are over or when he knows it's getting time to eat. It's hard denying food to him when I know that's what he wants. Even fluids are restricted. And I hate that we have to cycle through the same boring meals over and over. We don't have access to the nifty KetoCalculator yet, so I'm stuck with our dietitian's handful of meals. I've found a few recipes online that I've asked her to calculate for us, but that becomes a pain. Wish I could do it myself.
There are trade offs for sure. I would gladly trade in my free time to prepare his meals for even a little seizure control. Good days are down to the 50ish range. Bad ones...about 100. I remember when the good days were at least 100. I have to remind myself of that every time he has a bad day. The spontaneous full body drops are gone. There's been only one incident since we started the diet and that's even questionable, since I didn't see him fall. He tends to trip a lot as his balance has never been on the stable side. The head rocking has almost completely subsided. I'm not sure if I ever got into this in detail on here, but he would have these moments that he would fixate on an object in his hand or his hands and rock his head from side to side -states we couldn't snap him out of. They were always associated with seizures in the beginning, but it became so frequent that nearly every time he was still he would do it. It's very rare for him to do it now, and if he does, it's very brief.
We decided to wean him off Lamictal. What a terrible med for him. It did nothing but produce side effects and possibly more seizures. Only two more weeks to go on the wean. Yeah!!
So, we are very pleased with the results so far. We didn't get to bring him home from the hospital seizure free, but we did bring home tons of hope for it in the future.
We'll most likely be sticking with it for a while.
We continue to see improvements. Not as steady or as huge as I anticipated, but they're there nonetheless. That's good enough for me to settle into this for the long haul.
The thing I really really love about this diet...That there are SO many variables. So if something's not working, there are many areas to explore and tweak. It can certainly get overwhelming at times as far as knowing where to look for problems...but it's not like a med where you try it and that's that. Triggers for seizures can be in the food, meds, fluids, calories, timing, meal spacing, ratio...I could go on and on. So, for me, I feel like there's always a light at the end of the tunnel.
What I hate...the portion sizes and the redundancy. I'm not completely sure where Austin ranked in the appetite department compared to other kids his age before the diet, but these amounts are definitely not what he's used to. He always seems hungry, even after our efforts to address this. He cries when meals are over or when he knows it's getting time to eat. It's hard denying food to him when I know that's what he wants. Even fluids are restricted. And I hate that we have to cycle through the same boring meals over and over. We don't have access to the nifty KetoCalculator yet, so I'm stuck with our dietitian's handful of meals. I've found a few recipes online that I've asked her to calculate for us, but that becomes a pain. Wish I could do it myself.
There are trade offs for sure. I would gladly trade in my free time to prepare his meals for even a little seizure control. Good days are down to the 50ish range. Bad ones...about 100. I remember when the good days were at least 100. I have to remind myself of that every time he has a bad day. The spontaneous full body drops are gone. There's been only one incident since we started the diet and that's even questionable, since I didn't see him fall. He tends to trip a lot as his balance has never been on the stable side. The head rocking has almost completely subsided. I'm not sure if I ever got into this in detail on here, but he would have these moments that he would fixate on an object in his hand or his hands and rock his head from side to side -states we couldn't snap him out of. They were always associated with seizures in the beginning, but it became so frequent that nearly every time he was still he would do it. It's very rare for him to do it now, and if he does, it's very brief.
We decided to wean him off Lamictal. What a terrible med for him. It did nothing but produce side effects and possibly more seizures. Only two more weeks to go on the wean. Yeah!!
So, we are very pleased with the results so far. We didn't get to bring him home from the hospital seizure free, but we did bring home tons of hope for it in the future.
We'll most likely be sticking with it for a while.
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