I took my Spring Break, and just didn't do anything but enjoy the time off. That meant absolutely no blog posts. :)
Last week, Liz had her first behavior therapy appointment. Going in to it, Liz was very nervous. She's very suspicious of doctors as a general rule. On Wednesday when I told her that she would be going to the doctor the next day, I had to make sure it was very clear to her that there would be no shots, IVs, or any other medical tests. I promised her that doctor would only talk to her and ask her questions, and I would be with her every single step of the way.
When we got there, she was very nervous, clinging to me and hiding her face. She noticed that the doctor had a lot of toys, and she was impressed. She still wouldn't leave my side, though.
The doctor asked all the usual questions about her development, what the issues were, etc. I explained about Liz's rages, and she offered up some advice on how to handle them. All in all, we were there just over an hour, and I left feeling optimistic about what we would accomplish in future appointments. Better than that, Liz liked the doctor, and she is excited about her next appointment.
I had the opportunity to use the suggestions for Liz's rages on Saturday, and while the rage lasted just as long as the previous ones, it wasn't as violent. The next day was the best day she's had in a LONG time. It was so nice.
Showing posts with label pediatric epilepsy. Show all posts
Showing posts with label pediatric epilepsy. Show all posts
Tuesday, March 22, 2011
Wednesday, March 2, 2011
How very true...
"Life is not what it's supposed to be. It's what it is. The way you cope with it is what makes the difference."
I think when you're dealing with anything that is difficult, it's natural to think, "This is NOT how it is supposed to be!!" I know I'm guilty of it. How often have I looked at Liz when she's had a seizure or she's in the hospital, and thought that very thing? Too often...I can't help it sometimes. I just want her to be healthy.
It has taken me a long time to come to terms with her diagnosis, and become proactive. I can't change the fact that she has seizures. I'm just not that powerful. What I can change is how I handle it, and what I do about it. For me, I go into what I lovingly call, "Crisis Mode." I handle the emergency as best as I can, and then when all is said and done, I cry. Then we move on.
One of the reasons advocacy has become so important to me is that it is one of the ways I wage war against epilepsy. If enough people know about it and understand it, if those people tell the government to spend more money on research or they donate their own money, then I've won. I've slayed the dragon.
Epilepsy isn't going to ruin our lives. It has tried over and over again. It has tried to take away my daughter, but I refuse to give her up. It can't have her. She is the best gift I've ever been given, and I will do whatever it takes to keep her here with me. It can't take away her quality of life. It can't take away her smiles and her laugh. It can't take away her love. And every single one of those things is a victory. Every time she smiles...every time she says, "I love you, mama"...it's a win. We're winning our battle every single day.
Maybe our lives weren't supposed to be this way...maybe they were. I'm not the one to make that call. But you know what? We're handling this, and we are absolutely making a difference.
I think when you're dealing with anything that is difficult, it's natural to think, "This is NOT how it is supposed to be!!" I know I'm guilty of it. How often have I looked at Liz when she's had a seizure or she's in the hospital, and thought that very thing? Too often...I can't help it sometimes. I just want her to be healthy.
It has taken me a long time to come to terms with her diagnosis, and become proactive. I can't change the fact that she has seizures. I'm just not that powerful. What I can change is how I handle it, and what I do about it. For me, I go into what I lovingly call, "Crisis Mode." I handle the emergency as best as I can, and then when all is said and done, I cry. Then we move on.
One of the reasons advocacy has become so important to me is that it is one of the ways I wage war against epilepsy. If enough people know about it and understand it, if those people tell the government to spend more money on research or they donate their own money, then I've won. I've slayed the dragon.
Epilepsy isn't going to ruin our lives. It has tried over and over again. It has tried to take away my daughter, but I refuse to give her up. It can't have her. She is the best gift I've ever been given, and I will do whatever it takes to keep her here with me. It can't take away her quality of life. It can't take away her smiles and her laugh. It can't take away her love. And every single one of those things is a victory. Every time she smiles...every time she says, "I love you, mama"...it's a win. We're winning our battle every single day.
Maybe our lives weren't supposed to be this way...maybe they were. I'm not the one to make that call. But you know what? We're handling this, and we are absolutely making a difference.
Friday, February 11, 2011
Catching Up
My heart is heavy today. Nothing terrible has happened, but I'm just so....sad, I guess would be a good word. I'm yearning for the normalcy of our pre-Christmas lives. Ever since my daughter was hospitalized for the kidney stones, I feel like we've been in a tailspin, and nothing I'm doing is helping to stop it.
The Carbatrol has affected her moods, and I'm not afraid to admit that it is frustrating. When her ADHD med and the vitamin B-6 has had a chance to take effect, my daughter is the sweetest person on the planet, but otherwise, she is combative and, at times, downright mean. She hits. She kicks. She bites. She acts out and tries to cause pain just because she can. When she's "normal", she realizes why her actions are wrong, and she feels immense guilt. This morning getting ready for school was particularly difficult. She tried to kick me several times, and tried to run from the bathroom when I tried to give her morning meds to her. After a few minutes, it was like her fog had cleared, and she said, "I'm so sorry, Mommy. I don't want to be mean. I can't help it, though. I think there's something wrong with my brain. Is it sick?" I cried with her for a little bit, and I told her that no matter how mean she is sometimes, I will always love her, and it's okay because I know she doesn't mean to be mean to me.
My daughter is one of the sweetest souls ever put on this earth. This is so much harder than it has been in the past because she is aware of what is happening to her. She's confused, and no amount of explaining has helped. For the first time in a long, long time, I don't know what to do.
On top of everything else, she still isn't gaining any weight. I've been calorie loading that poor child for weeks, and NOTHING has changed. I'm afraid she needs to go back on medication to make her hungry.
As a side note, I've requested that we see a ENT specialist to see about having her tonsils out. Since before Thanksgiving, she's been a carrier for strep throat, and she's been getting sick every few weeks as a result. Every time she's sick, her seizure threshold goes down, and then when we do a round of antibiotics, the threshold goes down again. It's just not healthy any way you look at it to continue on this path.
I'm just tired. I feel like every time we get back on our feet, they're kicked out from under us again. She's been through so much, and I can't help but wonder when enough is finally going to be enough.
The Carbatrol has affected her moods, and I'm not afraid to admit that it is frustrating. When her ADHD med and the vitamin B-6 has had a chance to take effect, my daughter is the sweetest person on the planet, but otherwise, she is combative and, at times, downright mean. She hits. She kicks. She bites. She acts out and tries to cause pain just because she can. When she's "normal", she realizes why her actions are wrong, and she feels immense guilt. This morning getting ready for school was particularly difficult. She tried to kick me several times, and tried to run from the bathroom when I tried to give her morning meds to her. After a few minutes, it was like her fog had cleared, and she said, "I'm so sorry, Mommy. I don't want to be mean. I can't help it, though. I think there's something wrong with my brain. Is it sick?" I cried with her for a little bit, and I told her that no matter how mean she is sometimes, I will always love her, and it's okay because I know she doesn't mean to be mean to me.
My daughter is one of the sweetest souls ever put on this earth. This is so much harder than it has been in the past because she is aware of what is happening to her. She's confused, and no amount of explaining has helped. For the first time in a long, long time, I don't know what to do.
On top of everything else, she still isn't gaining any weight. I've been calorie loading that poor child for weeks, and NOTHING has changed. I'm afraid she needs to go back on medication to make her hungry.
As a side note, I've requested that we see a ENT specialist to see about having her tonsils out. Since before Thanksgiving, she's been a carrier for strep throat, and she's been getting sick every few weeks as a result. Every time she's sick, her seizure threshold goes down, and then when we do a round of antibiotics, the threshold goes down again. It's just not healthy any way you look at it to continue on this path.
I'm just tired. I feel like every time we get back on our feet, they're kicked out from under us again. She's been through so much, and I can't help but wonder when enough is finally going to be enough.
Monday, January 10, 2011
Weekend and Goals for the Week
Well, we made it through the weekend with no seizure activity, and things are looking up for my little one. She rested most of the day on Saturday, and tortured our poor dogs yesterday, so I'm thinking that she feels much better. I'm still concerned about another break-through seizure popping up, BUT I'm being cautiously optimistic. Her new medicine is an extended release version of the Tegretol. Her doctor believes that because it had been right at twelve hours since her last dosage of medication, and the Tegretol that she was on was the chewable tablets form, she had lowered medication levels in her blood. So, he hopes that by changing her medication to the extended release version, she'll keep her medicine levels in a therapeutic range for longer. I'm really, really praying that he is right on the money for this one. At the very least, his thinking makes sense.
So, goals for the week...I only really have one. I want her to stay out of the hospital this week. She's been in the hospital once a week since before Christmas, and I feel like that is a tad bit excessive. I mean, we recognized the resident that treated her at the ER, and he remembered us. It is NOT cool to be on first name basis with the ER staff.
As a side note, I have a "What to do if..." meeting/ARD with her school this afternoon. When she had her seizure last week, I immediately emailed her classroom teacher and went in to talk to the school nurse. Over holiday break, the school hired a new nurse, and she seems like she's a pretty stellar individual. When I went to speak with her, there wasn't any of the fear that the previous nurse seemed to hold. Anyway, her classroom teacher forwarded my email to the school diagnostician, and because her school ROCKS, they're holding an emergency meeting this afternoon after school, AND her seizure action plan has been sent out to every faculty/staff member on campus. This way there's no chance of her having a seizure, and the adult around her not knowing what to do. I'm so stinking impressed by that school.
So, goals for the week...I only really have one. I want her to stay out of the hospital this week. She's been in the hospital once a week since before Christmas, and I feel like that is a tad bit excessive. I mean, we recognized the resident that treated her at the ER, and he remembered us. It is NOT cool to be on first name basis with the ER staff.
As a side note, I have a "What to do if..." meeting/ARD with her school this afternoon. When she had her seizure last week, I immediately emailed her classroom teacher and went in to talk to the school nurse. Over holiday break, the school hired a new nurse, and she seems like she's a pretty stellar individual. When I went to speak with her, there wasn't any of the fear that the previous nurse seemed to hold. Anyway, her classroom teacher forwarded my email to the school diagnostician, and because her school ROCKS, they're holding an emergency meeting this afternoon after school, AND her seizure action plan has been sent out to every faculty/staff member on campus. This way there's no chance of her having a seizure, and the adult around her not knowing what to do. I'm so stinking impressed by that school.
Tuesday, October 26, 2010
What is so funny?
Anyone that knows me (and most of my readers at this point are people that know me) is aware of how much I hate it when people laugh at epilepsy and those who have it. Nothing grinds my gizzard as much as a group of people that should know better laughing it up about someone who looks like they're having a seizure. Actually...the videos that are supposed to induce a seizure with flashing lights really tick me off, too. I like to believe that people find humor in this because they simply don't know what is happening to the human body as a person is having a seizure. That's part of the reason I started this blog. I want to educate and help people so that maybe I can change people's perceptions of things they don't understand.
When I'm explaining seizures to someone that's never seen one before, I ask them what happens to their satellite reception on their TV when there is a bad thunderstorm. Most of the time, they tell me that it freezes up, but after the storm passes, their reception comes back, even though it might still freeze up for a little while until the connection fully resets. I then liken that to a seizure. A seizure is when electrical impulses in the brain start being over active to the point that it causes your body to convulse, or you to stare, or lose muscle control and hit the floor, etc. It can last for a few seconds or hours, but once the electrical impulses calm down, then the brain resets, and you start to recover. The recovery period is known as the post-ictal period, and can take minutes or hours complete. Essentially, your brain is recovering from the massive overload of activity that it has just experienced. Most of the time, the person sleeps during the post-ictal period, but my daughter often exhibits dark circles under her eyes, pale skin, and she's very lethargic.
Have you seen what happens to a child (or anyone, for that matter) when they have a seizure? Do you know what it looks like to see someone tiny having their body wracked by spasms and convulsions?
When I'm explaining seizures to someone that's never seen one before, I ask them what happens to their satellite reception on their TV when there is a bad thunderstorm. Most of the time, they tell me that it freezes up, but after the storm passes, their reception comes back, even though it might still freeze up for a little while until the connection fully resets. I then liken that to a seizure. A seizure is when electrical impulses in the brain start being over active to the point that it causes your body to convulse, or you to stare, or lose muscle control and hit the floor, etc. It can last for a few seconds or hours, but once the electrical impulses calm down, then the brain resets, and you start to recover. The recovery period is known as the post-ictal period, and can take minutes or hours complete. Essentially, your brain is recovering from the massive overload of activity that it has just experienced. Most of the time, the person sleeps during the post-ictal period, but my daughter often exhibits dark circles under her eyes, pale skin, and she's very lethargic.
Have you seen what happens to a child (or anyone, for that matter) when they have a seizure? Do you know what it looks like to see someone tiny having their body wracked by spasms and convulsions?
This a video of a little girl named Bella. Her parents posted this video on YouTube to educate people about epilepsy. Can you tell me what is funny about this little girl having a seizure? Is there anything remotely humorous about this toddler's brain openly declaring war on her body?
When the video opens, Bella is having a Tonic Clonic seizure. Notice that her parents have her on the floor, with anything that she could harm herself on cleared away. She is laying on her side, and her mother is sitting next to her, but not restraining her or putting something in her mouth. Everyone is remaining calm.
When the seizure stops, you hear Bella take a big deep breath and she stops convulsing. Her mother comments about how fast her heart is beating, and you can hear Bella continue to take deep breaths, almost as if she is panting. Most literature regarding the muscle spasms that are experienced during a seizure liken it to running a full marathon in just a few minutes. As Bella continues to breathe deeply, you hear her father (who is filming) ask the mother about the temperature change being a possible trigger. ANYTHING could be a trigger for a seizure. The key is figuring out what yours or your child's are.
You see Bella open her eyes, but there is zero recognition of anyone or of the situation. She is still in her post-ictal period, recovering from the seizure that she's just experienced. You hear her mother comment on the fact that it is a Tonic Clonic seizure (previously known as a Grand Mal), and that she will be sleeping for awhile. All this time, Bella is still breathing heavily, which is completely normal after experiencing a Tonic Clonic seizure. She hasn't had regular breathing for the length of the seizure, and her body is recovering from that.
The mom comments on the length of the seizure as being around 2 minutes. It is so important to time a seizure. You can make a log of it, and let the doctor know about the length. Her mother then comments about the difference between a Tonic Clonic and Complex Partial, which is just different types of seizures (my daughter experiences both as well).
Was there anything funny about that video?
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