Monday, January 31, 2011
A hard heart
I've been struggling with a hard heart. Have you ever felt that your heart is hard? Lacking compassion, softness? I'm sure I've felt this before in my life, but it has never been so apparent to me as now. Because when you have a hard heart in relation to your kids, it hurts. I can't figure out exactly what leads to this feeling, and it doens't much matter to me. What matters is that I soften my heart, so I can be fully present for and loving toward my children. I'm trying yoga. I love it. When my heart is hard, the poses that open the heart are quite painful. My chest and ribs are sore for days. Maybe a physical reminder to keep my heart open and soft?
Sunday, January 30, 2011
The only thing constant in life is change
We got some bad news about the electrical activity in Ben's brain. Back in December, I asked for an MEG - basically a more powerful EEG. This is a diagnostic procedure usually limited to epileptic patients who are candidates for surgical intervention. There are indications in these patients that the abnormal activity is localized to a small area in the brain - which, if excised, could at least reduce seizure frequency. This test helps to localize the abnormal activity so the surgeon knows which tissue to remove.
I asked for this test on Ben in the hopes that his abnormal activity would be isolated to at least one cortex of the brain. With the help of other neuroscientists, we had come up with a way to try to help Ben. Targeting that area functionally - say with visual stimuli if it were the occipital cortex - might organize the brain matter. The more organized it is, the less likely seizures are. Good solution, right? And, WAY outside-the-box thinking, by the way. Ben's neurologist thought the idea was crazy (and desperate).
After the analysis on Ben's brain was done, I spoke to the neuroscientist who runs the MEG lab. He said he had never seen a brain with so many abnormal spikes. Granted, the patients he usually sees have been preselected. But still, it was hard to hear. After getting this news and trying to explain what it meant to my sister, I burst into tears. I felt hopeless, sad, frustrated. This has been kind of my last resort. My fantasy that would change everything for Ben. I have not been able to accept that all we can do is keep trying new medications. That wasn't good enough. There must be something more we can do!!! Nope.
And, after all that, I had this thought: The only constant thing in life is change. How does that fit into this situation? Why is Ben's brain not changing? Why aren't the seizures changing? How can this stupid saying apply to EVERYTHING in life I never want to change and then not apply to what I DO want to change?! How unfair.
Then I had a thought. Our experience of Ben's seizures will change. That gives me hope. I felt this moment of peace and acceptance (and let me tell you it truly was just a moment) during one of Ben's recent seizures. I felt completely out of control. I really understood for that moment that there is nothing I can do to change that seizure for Ben. But I can affect my own experience of it. I can probably also affect Ben's experience of it by just being peaceful around him instead of panicky. So I will hold onto that thought for now. This will change.
I asked for this test on Ben in the hopes that his abnormal activity would be isolated to at least one cortex of the brain. With the help of other neuroscientists, we had come up with a way to try to help Ben. Targeting that area functionally - say with visual stimuli if it were the occipital cortex - might organize the brain matter. The more organized it is, the less likely seizures are. Good solution, right? And, WAY outside-the-box thinking, by the way. Ben's neurologist thought the idea was crazy (and desperate).
After the analysis on Ben's brain was done, I spoke to the neuroscientist who runs the MEG lab. He said he had never seen a brain with so many abnormal spikes. Granted, the patients he usually sees have been preselected. But still, it was hard to hear. After getting this news and trying to explain what it meant to my sister, I burst into tears. I felt hopeless, sad, frustrated. This has been kind of my last resort. My fantasy that would change everything for Ben. I have not been able to accept that all we can do is keep trying new medications. That wasn't good enough. There must be something more we can do!!! Nope.
And, after all that, I had this thought: The only constant thing in life is change. How does that fit into this situation? Why is Ben's brain not changing? Why aren't the seizures changing? How can this stupid saying apply to EVERYTHING in life I never want to change and then not apply to what I DO want to change?! How unfair.
Then I had a thought. Our experience of Ben's seizures will change. That gives me hope. I felt this moment of peace and acceptance (and let me tell you it truly was just a moment) during one of Ben's recent seizures. I felt completely out of control. I really understood for that moment that there is nothing I can do to change that seizure for Ben. But I can affect my own experience of it. I can probably also affect Ben's experience of it by just being peaceful around him instead of panicky. So I will hold onto that thought for now. This will change.
Monday, January 17, 2011
The details you don't want to know
Ben just had two really bad seizures, two days in a row. So it's getting worse, not better. I really thought the Lamictal had a chance of working...
I met a woman last night who has epilepsy - controlled by medication. I asked her to describe what it feels like to have a seizure. She said that the worst part happens right before the seizures starts. She knows when it's coming and can't stop it. And that it's just really scary - the feeling of losing consciousness. This must be what Ben is feeling because he cries out. His face is distorted in fear and then in a grimace induced by the seizure. During the worst part, he looks at me, crying out, and I just wish I could stop it somehow. But I don't know how to stop it. I've tried music, rocking, blowing in his face, flashing lights, firm massage, pressure points recommended by his acupuncturist, anything I can think of to stop his brain from seizing. Nothing works.
The seizures go on for 20 minutes. That's 20 excruciating minutes where Ben is in distress, crying and seizing, and flailing as if to get away from his seizing brain. It's just awful. Unbearable. I don't expect Ben to deal in any other way than he does. I do expect myself to deal with it in a better way than I do. I need to find a way to stay composed and to recover so that I can be a good parent to both of my kids for the rest of the day. I want with all my might to check out - to go away, or to take Attivan, to drink, if I had pot to smoke it - anything not to experience what I experience. But that is all unacceptable. So, for now, I sit here, unable to stop thinking about how awful this is, and wanting to jump out of my skin.
I suppose that is acceptable for now. But not for long. Not for another year. Initially I gave myself a year to recover, to find ways of dealing that are helpful, to find acceptance. A year has not been long enough. But another year? I will not bear it.
I met a woman last night who has epilepsy - controlled by medication. I asked her to describe what it feels like to have a seizure. She said that the worst part happens right before the seizures starts. She knows when it's coming and can't stop it. And that it's just really scary - the feeling of losing consciousness. This must be what Ben is feeling because he cries out. His face is distorted in fear and then in a grimace induced by the seizure. During the worst part, he looks at me, crying out, and I just wish I could stop it somehow. But I don't know how to stop it. I've tried music, rocking, blowing in his face, flashing lights, firm massage, pressure points recommended by his acupuncturist, anything I can think of to stop his brain from seizing. Nothing works.
The seizures go on for 20 minutes. That's 20 excruciating minutes where Ben is in distress, crying and seizing, and flailing as if to get away from his seizing brain. It's just awful. Unbearable. I don't expect Ben to deal in any other way than he does. I do expect myself to deal with it in a better way than I do. I need to find a way to stay composed and to recover so that I can be a good parent to both of my kids for the rest of the day. I want with all my might to check out - to go away, or to take Attivan, to drink, if I had pot to smoke it - anything not to experience what I experience. But that is all unacceptable. So, for now, I sit here, unable to stop thinking about how awful this is, and wanting to jump out of my skin.
I suppose that is acceptable for now. But not for long. Not for another year. Initially I gave myself a year to recover, to find ways of dealing that are helpful, to find acceptance. A year has not been long enough. But another year? I will not bear it.
Wednesday, January 12, 2011
6 days without a seizure
Well, Ben got another 6 days without a bad seizure. He had many small ones throughout that week (the ones where he's conscious but his body collapses every 10 sec.). It seems like Lamictal may work if we could only get the levels up high enough. He is a high metabolizer which means that, even though we are giving him a pretty high does of the medicine, it's not getting into his blood at therpeutic levels. We are increasing the dose and the times we give the medication (3x/day instead of 2x/day). Fingers crossed everyone.
Monday, January 10, 2011
Some encouraging news
We saw the vision doctor today, and she said that Ben's eyes are functioning as well as could be! She couldn't rule out any cortical visual processing problems but did not seem worried about that.
We also saw Ben's neurologist today. I always leave his office feeling better. He was very encouraged by Ben's development in the past six months since we've seen him last. He told me that the blood levels of his current drug are still very low, and that is both good and bad news. Good news because it means we can go up on the dose of this drug that has given us some hope. Bad news because it may mean that it will be hard to get Ben's blood levels up high enough for it to be effective. But, in the end, it gives us a lot of hope.
Oh, so good to have hope again. And, for some reason, our neurologist just makes it all seem ok. He makes it seems ok that Ben might continue to have seizures. He makes it seem ok that Ben is somewhat delayed - because he sees the progress, not the deficit. I love that.
Thank you to all of you who have emailed me with supportive emails and good thoughts. I know it's hard to read the posts I put up sometimes, and I really appreciate the support. I'm trying to put up the good as well as the bad!
We also saw Ben's neurologist today. I always leave his office feeling better. He was very encouraged by Ben's development in the past six months since we've seen him last. He told me that the blood levels of his current drug are still very low, and that is both good and bad news. Good news because it means we can go up on the dose of this drug that has given us some hope. Bad news because it may mean that it will be hard to get Ben's blood levels up high enough for it to be effective. But, in the end, it gives us a lot of hope.
Oh, so good to have hope again. And, for some reason, our neurologist just makes it all seem ok. He makes it seems ok that Ben might continue to have seizures. He makes it seem ok that Ben is somewhat delayed - because he sees the progress, not the deficit. I love that.
Thank you to all of you who have emailed me with supportive emails and good thoughts. I know it's hard to read the posts I put up sometimes, and I really appreciate the support. I'm trying to put up the good as well as the bad!
Friday, January 7, 2011
Worse than ever
The seizures are worse than ever. During a seizure last night, I almost called 9-1-1. Thank God that we have a rescue medication - Midazolam - which we can administer nasally. This means that it is fast-acting. Ben was having trouble breathing, and it was so hard to watch. The Midazolam worked within minutes, though, and returned his breathing to normal, and sedated him so that he didn't have to experience the unpleasantness of the seizure. When he is coming back to consciousness from such a seizure, Ben often frowns and whimpers. Inhumanely, the seizure continues even when Ben reaches consciousness, and that last part is particularly excruciating for me to witness because Ben is in distress. I can't tell if it's because he's scared, or whether it's because he has a headache, or what. He frowns and whimpers and looks me straight in the eye.
Last night, I said to my sister, I don't know how this can go on. But even as the words left my mouth, I knew that it could. Epilepsy is a monster with no enemy. It can go on and often does. I realized, as I uttered those words, that it would go on. That our lives might be run by this monster for a long time. Maybe for Ben's lifetime. Hopefully that means at least my lifetime. We will find a way to manage living life with joy despite this monster. We will conquer it.
Then today, Ben was uncharacteristically fussy. Crying and wanting to be held all day. This is not like him at all. He is usually very comfortable wherever he is. He was listless and not alert. It was alarming. I took him to his pediatrician. She was alarmed but could not help us. He has no fever. He's acting like a baby who has a high fever - listless, fussy, sleepy but unable to sleep peacefully. Yet no fever. His neurologist had no answers either. What do I do? How do I help him? My gut tells me it's some kind of irregular brain activity causing him this uncomfortableness. I have no idea how to stop that for him. The only viable option is to sedate him but I'm not willing to do that. He's been sedated for too long during crucial developmental periods already. So, we will see how it unfolds tonight. Aaron and I have not slept in 3 days. Since the seizures started again. Please let us all sleep tonight.
Last night, I said to my sister, I don't know how this can go on. But even as the words left my mouth, I knew that it could. Epilepsy is a monster with no enemy. It can go on and often does. I realized, as I uttered those words, that it would go on. That our lives might be run by this monster for a long time. Maybe for Ben's lifetime. Hopefully that means at least my lifetime. We will find a way to manage living life with joy despite this monster. We will conquer it.
Then today, Ben was uncharacteristically fussy. Crying and wanting to be held all day. This is not like him at all. He is usually very comfortable wherever he is. He was listless and not alert. It was alarming. I took him to his pediatrician. She was alarmed but could not help us. He has no fever. He's acting like a baby who has a high fever - listless, fussy, sleepy but unable to sleep peacefully. Yet no fever. His neurologist had no answers either. What do I do? How do I help him? My gut tells me it's some kind of irregular brain activity causing him this uncomfortableness. I have no idea how to stop that for him. The only viable option is to sedate him but I'm not willing to do that. He's been sedated for too long during crucial developmental periods already. So, we will see how it unfolds tonight. Aaron and I have not slept in 3 days. Since the seizures started again. Please let us all sleep tonight.
Wednesday, January 5, 2011
They're back :(
So sadly to me and Ben and everyone else, the seizures are back. We had nine blissful days of no seizures. Ben had a very bad one last night, and then more today. It is heartbreaking to me. It is such a hard line to toe. I have to be hopeful, I need hope - but it is so heartwrenching when my hopes get broken. I don't know how to feel like everything is going to be ok.
Monday, January 3, 2011
Sunday, January 2, 2011
Getting there
I have good news to report to all of Ben's fans! It looks like Lamictal is finally working a little for him. Both the frequency and the severity of his seizures has been reduced. It is amazing. He can go 5-6 days without a really bad seizure. I hardly dare to hope that this will continue for him.
The other day I figured out that my anger level - which is 95 out of 100, by the way - is too high for me to enjoy my life. I need my anger. It gives me the energy to fight neurologists who tell me that all I can hope for is some seizure reduction, not total seizure freedom. It keeps me going when doctors immeditately mention the potential need for a feeding tube because Ben has been having difficulty eating solids. I do not accept either of those options.
But it is too high. A 75 out of 100 would be enough to fight for him. And would give me a chance to enjoy my life again. It occurred to me that in holding on to all that anger, I miss out on the good parts of our days.
Ben aaaaalmost getting himself up on all fours alone!!! Chloe giving me kisses all over my face, saying "Mommy, I love you, even when you give me a timeout, or when you say I can't have chocolate". Ben learning to play peek-a-boo and giggling and laughing when he's able to pull the towel off his face. Chloe putting her arm around Ben and cuddling him when he's upset, whispering in his ear "ssshhh, it's ok, Ben", and Ben responding to her.
Ben is progressing and that's joyful!!
The other day I figured out that my anger level - which is 95 out of 100, by the way - is too high for me to enjoy my life. I need my anger. It gives me the energy to fight neurologists who tell me that all I can hope for is some seizure reduction, not total seizure freedom. It keeps me going when doctors immeditately mention the potential need for a feeding tube because Ben has been having difficulty eating solids. I do not accept either of those options.
But it is too high. A 75 out of 100 would be enough to fight for him. And would give me a chance to enjoy my life again. It occurred to me that in holding on to all that anger, I miss out on the good parts of our days.
Ben aaaaalmost getting himself up on all fours alone!!! Chloe giving me kisses all over my face, saying "Mommy, I love you, even when you give me a timeout, or when you say I can't have chocolate". Ben learning to play peek-a-boo and giggling and laughing when he's able to pull the towel off his face. Chloe putting her arm around Ben and cuddling him when he's upset, whispering in his ear "ssshhh, it's ok, Ben", and Ben responding to her.
Ben is progressing and that's joyful!!
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