Being the mother of a child with epilepsy puts me in a unique position. I mean, that should be fairly obvious, right? I'm talking about beyond the seizures here, though. My daughter doesn't gain weight. In the last two years, she's stayed at right around forty-five pounds. Two year old kids weigh more than that. We've tried to correct this problem, too. About a year and a half ago, my daughter's pulmonary specialist was concerned that she had cystic fibrosis because of her breathing issues and the fact that she was underweight. She was tested, and thankfully, it came back negative. Then we tested for a gluten allergy, and that came back negative, too. Finally, we just decided that her medications were affecting her ability to gain and keep weight on. She went on Megace, which was very effective, but it's not a drug that most pediatricians will prescribe for children. She was only on it for a few months, and she gained fifteen pounds. As soon as she went off of it, she began to slowly taper down in weight until finally, she was back at forty-five pounds. We just kind of lived with it. I kept her off of her ADHD meds on the weekends, and calorie loaded her on those two days. During the week, I supplemented her diet with Boost with Protein, so that I knew that she was getting all the daily allowances for the important stuff her body needs.
When she was in the hospital over Christmas, she lost two more pounds. I finally decided that I'd had enough of her not being able to gain weight, and I scheduled an appointment with a nutritionist. She talked to me about calorie loading my daughter all of the time, and what medicines are effective for weight gain. One of those is Cyproheptadine, which she has been on before. Since it is an antihistamine, she had wonderfully clear breathing, but it didn't do anything to increase her appetite. Besides that, I'd like to avoid drug intervention at this point. She's already on so much medication for the seizures, and I don't want her to be reliant on a pill to make her hungry. I want to exhaust every avenue before we just add another medication.
So, I'm calorie loading her. I'm taking Pediasure 1.5 Cal, and add two tablespoons of whole cream and chocolate syrup. A 350 calorie drink now holds about 600 calories. I'm giving that to her twice a day, plus I'm adding anything I can think of to her diet. If she's hungry for it, then I'm giving it to her to eat. I realize this isn't exactly breeding healthy eating habits, but I'm talking about a kid that would rather eat a Caesar salad than a candy bar. Those healthy eating habits are already there, and I doubt that calorie loading her is going to undo that.
Do you see what I mean about epilepsy not just being about the seizures? It's so much more than that.
Thursday, January 20, 2011
Tuesday, January 18, 2011
Maintaining status quo
One of the ways I'm currently struggling with my daughter's recent health struggles is that I'm realizing how hard it is going to be to maintain baseline health. I've said it before and I'll say it again: the last three years has really lulled me into a false sense of security.
Yesterday my daughter had an appointment with a nutritionist. She has a horrible time gaining weight because of all the medications she is on. For example, the carbatrol increases appetite, but the focalin decreases it. On the weekends, I try to keep her off of the focalin so that she spends two quality days eating, but the carbatrol is so thoroughly changing her moods that I can no longer do that. Anyway, we'll now be seeing a nutritionist regularly to help us help her gain weight.
I also will be making lots of phone calls to the neurologist in the coming weeks and months to discuss the medications she's on, side effects, and seizures she's having. I'm not exaggerating when I say I'll probably talk to the neuro at least once a week.
I'm not really having trouble adjusting to this fact. We've done it before several times. It's mostly that I forgot how much it takes to keep her healthy when the seizures are with us.
As a side note, she had a seizure Friday. New countdown: 4 days with now seizure activity. Let's hope for many more.
Yesterday my daughter had an appointment with a nutritionist. She has a horrible time gaining weight because of all the medications she is on. For example, the carbatrol increases appetite, but the focalin decreases it. On the weekends, I try to keep her off of the focalin so that she spends two quality days eating, but the carbatrol is so thoroughly changing her moods that I can no longer do that. Anyway, we'll now be seeing a nutritionist regularly to help us help her gain weight.
I also will be making lots of phone calls to the neurologist in the coming weeks and months to discuss the medications she's on, side effects, and seizures she's having. I'm not exaggerating when I say I'll probably talk to the neuro at least once a week.
I'm not really having trouble adjusting to this fact. We've done it before several times. It's mostly that I forgot how much it takes to keep her healthy when the seizures are with us.
As a side note, she had a seizure Friday. New countdown: 4 days with now seizure activity. Let's hope for many more.
Tuesday, January 11, 2011
Joey's Song
If you get a chance, stop by the Joey's Song website. It was set up in honor of Joseph Gomoll, who had Dravet's Syndrome. He passed away on March 30, 2010, and the foundation raises money that goes towards the Epilepsy Foundation for research and also the early childhood program in Joey's hometown to provide education and services for children with special needs.
Go take a look. It is definitely a worthy cause.
Thanks!!
Go take a look. It is definitely a worthy cause.
Thanks!!
Special Meeting Yesterday
Yesterday I attended a special meeting at my daughter's school regarding the school's seizure action plan for her. In October during her ARD (IEP meeting), the school's diagnostician, school nurse, and I developed her seizure action plan. It was unique to her, including possible triggers, hints that there was going to be a seizure soon, and special first aid during the seizure. In it, we decided that since she hadn't had a seizure in so long, that an ambulance should be summoned after two minutes of active seizing. I wanted this part added to the plan because I couldn't honestly confirm that if she had a seizure, she would stop within a reasonable amount of time. She has a history of experiencing status epilepticus, and I wanted to be sure that if she began to experience it again, medical intervention would be on the way.
Let me tell you about this meeting and about her school...WOW...just amazing. You hear so many horror stories regarding schools and children with special needs. I have a few of them from my daughter's first school. This school has been nothing short of fabulous. There were about fifteen to twenty individuals in the meeting, including the principal and vice principal, school nurses, music teachers, P.E. teachers, classroom teachers, and playground aids. Every single one of them had familiarized themselves with my daughter's seizure action plan, and had questions for me. I talked them through what seizure onset is like for her, and what last week's seizure was like. I talked to them about the importance of timing the seizure, and talking to her throughout the seizure. I walked them through basic first aid regarding seizures, and what to do especially for her. We came up with really good ideas to ensure her safety while she was on campus, and by the time we left that meeting, every single person had came up with their own emergency plan for her in case they were the one to be helping her. (EX. who would evacuate the other kids, who would go for the nurse, where to keep her plan, how to tell substitute teachers, etc.) We also decided that since she's had the first seizure since the med switch, that we could change the time from two minutes to five minutes in regards to summoning an ambulance.
I'm proud of everything we accomplished yesterday for her, but I think that I'm most proud of the fact that the seizure action plan went out to the entire school. Many teachers were confused about why they had been given a seizure action plan for a student that they had never seen before, but the principal explained that there shouldn't be anyone in that school that doesn't know what to do when she has a seizure. I'm taking that logic one step further, though. I think that because they read through the seizure action plan, then they now have a basic idea about what to do if any child has a seizure while in their care. We inadvertently reached about seventy-five people yesterday in regards to seizure safety and epilepsy awareness. Isn't that amazing?
One of my goals is to have every school have a basic first aid staff development for their teachers about what to do if there is a medical emergency in the classroom. It just doesn't have to be seizure first aid. It could cover many, many things, but one of the medical situations covered would be seizures. I work with teachers that still swear that the first thing you do when someone is experiencing a seizure is to put a spoon in the person's mouth so they can't swallow your tongue. Seriously...you can't swallow your tongue. It is physically impossible to do that. If it wasn't, we all would have done it already.
Another day without seizure activity...we're on day 4 of no seizures. Hoping there's many, many more.
Let me tell you about this meeting and about her school...WOW...just amazing. You hear so many horror stories regarding schools and children with special needs. I have a few of them from my daughter's first school. This school has been nothing short of fabulous. There were about fifteen to twenty individuals in the meeting, including the principal and vice principal, school nurses, music teachers, P.E. teachers, classroom teachers, and playground aids. Every single one of them had familiarized themselves with my daughter's seizure action plan, and had questions for me. I talked them through what seizure onset is like for her, and what last week's seizure was like. I talked to them about the importance of timing the seizure, and talking to her throughout the seizure. I walked them through basic first aid regarding seizures, and what to do especially for her. We came up with really good ideas to ensure her safety while she was on campus, and by the time we left that meeting, every single person had came up with their own emergency plan for her in case they were the one to be helping her. (EX. who would evacuate the other kids, who would go for the nurse, where to keep her plan, how to tell substitute teachers, etc.) We also decided that since she's had the first seizure since the med switch, that we could change the time from two minutes to five minutes in regards to summoning an ambulance.
I'm proud of everything we accomplished yesterday for her, but I think that I'm most proud of the fact that the seizure action plan went out to the entire school. Many teachers were confused about why they had been given a seizure action plan for a student that they had never seen before, but the principal explained that there shouldn't be anyone in that school that doesn't know what to do when she has a seizure. I'm taking that logic one step further, though. I think that because they read through the seizure action plan, then they now have a basic idea about what to do if any child has a seizure while in their care. We inadvertently reached about seventy-five people yesterday in regards to seizure safety and epilepsy awareness. Isn't that amazing?
One of my goals is to have every school have a basic first aid staff development for their teachers about what to do if there is a medical emergency in the classroom. It just doesn't have to be seizure first aid. It could cover many, many things, but one of the medical situations covered would be seizures. I work with teachers that still swear that the first thing you do when someone is experiencing a seizure is to put a spoon in the person's mouth so they can't swallow your tongue. Seriously...you can't swallow your tongue. It is physically impossible to do that. If it wasn't, we all would have done it already.
Another day without seizure activity...we're on day 4 of no seizures. Hoping there's many, many more.
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.
Friday, January 7, 2011
Staring at the screen...
I've been staring at the screen for the last two hours, wondering how to start this blog....wondering how to put into words the anger, the fear, the trepidation I've been filled with since last night.
Last night, I had to call an ambulance because my daughter had her first tonic clonic seizure in three years. It was short, lasting no longer than 7 minutes from start to finish. It was unexpected. I stupidly thought that because she hadn't had a seizure since the med change two weeks ago, we were smooth sailing. Clearly I was mistaken. We spent a few hours in the ER. We did a med levels check, and some more blood work. Everything came back normal. We were sent home, and I spent the better part of my morning on the phone with the neurologist. He's putting her on Carbatrol, which is just an extended release version of the medication that she's already on. I've alerted her school, and they've already updated her seizure plan, and they're holding a special meeting on "what to do if...." on Monday afternoon. (I love that place.)
When it comes to what needs to be done after a seizure, I've done all that I can. I called the right people. Updated what needed to be updated. Logged what needed to be logged. I've been the responsible parent.
I feel gutted though. My heart is breaking, and I am terrified. There's a panic involved with being a parent and not being able to physically battle the thing that is hurting your child. The feeling that fills you when you look at your child's face, and you recognize that she's having a seizure...its something that I can't describe. I'm pretty good in an emergency, but I will admit that I lost my cool for about five seconds last night. The thoughts and feelings were flying through me so quickly that I barely had time to register them. I clearly remember starting to cry, and saying, "No, no, no...oh, please no..." But then I got it together. The tears hadn't even had a chance to really form. My baby needed me, and I had to get myself together. By the time I had grabbed my phone and hit the emergency button, I had gotten it together, and I was calm.
The feeling for me after she has a seizure is one of embarking on a new journey, and knowing you're traveling through unkind territory. It's a barren wasteland, and the points of hope and happiness are going to be few and far between. There are going to be setbacks, and she's going to have more seizures. There's going to be Video EEG's ran, and doctors' appointments. There will be blood work, and med increases. And in the end, we won't have any more answers than what we have right now. She has epilepsy. We don't know why. End of story. There's no light at the end of the tunnel here. There's no hope for her being suddenly cured. This is a lifelong condition, and what this seizure event has done is remind us of that. Just when we began to hope for a normal life for her, we were reminded that she's always going to have this problem. Always.
Last night, I had to call an ambulance because my daughter had her first tonic clonic seizure in three years. It was short, lasting no longer than 7 minutes from start to finish. It was unexpected. I stupidly thought that because she hadn't had a seizure since the med change two weeks ago, we were smooth sailing. Clearly I was mistaken. We spent a few hours in the ER. We did a med levels check, and some more blood work. Everything came back normal. We were sent home, and I spent the better part of my morning on the phone with the neurologist. He's putting her on Carbatrol, which is just an extended release version of the medication that she's already on. I've alerted her school, and they've already updated her seizure plan, and they're holding a special meeting on "what to do if...." on Monday afternoon. (I love that place.)
When it comes to what needs to be done after a seizure, I've done all that I can. I called the right people. Updated what needed to be updated. Logged what needed to be logged. I've been the responsible parent.
I feel gutted though. My heart is breaking, and I am terrified. There's a panic involved with being a parent and not being able to physically battle the thing that is hurting your child. The feeling that fills you when you look at your child's face, and you recognize that she's having a seizure...its something that I can't describe. I'm pretty good in an emergency, but I will admit that I lost my cool for about five seconds last night. The thoughts and feelings were flying through me so quickly that I barely had time to register them. I clearly remember starting to cry, and saying, "No, no, no...oh, please no..." But then I got it together. The tears hadn't even had a chance to really form. My baby needed me, and I had to get myself together. By the time I had grabbed my phone and hit the emergency button, I had gotten it together, and I was calm.
The feeling for me after she has a seizure is one of embarking on a new journey, and knowing you're traveling through unkind territory. It's a barren wasteland, and the points of hope and happiness are going to be few and far between. There are going to be setbacks, and she's going to have more seizures. There's going to be Video EEG's ran, and doctors' appointments. There will be blood work, and med increases. And in the end, we won't have any more answers than what we have right now. She has epilepsy. We don't know why. End of story. There's no light at the end of the tunnel here. There's no hope for her being suddenly cured. This is a lifelong condition, and what this seizure event has done is remind us of that. Just when we began to hope for a normal life for her, we were reminded that she's always going to have this problem. Always.
Thursday, January 6, 2011
Well, it's started.
When my daughter was put in the hospital for the kidney stone, her neurologist felt that the stone was created a side effect from the Zonegran, so she was put on Tegretol. I think I've expressed my concern about med switches, and what they usually mean for us. They scare the crap out of me. Seriously, I could probably take out a group of zombies, and not bat an eye, but med switches fill me with a fear that leaves my insides quaking. I don't want her to have seizures. Period.
There's another side of med switches, though. Once she's been on a medication for a few days, I can usually sense some personality changes, and I feel like I'm being introduced to a whole new individual. I have to get acquainted with this new little person. Her appetite changes. Her favorite foods change. Her sleep cycles change. Heck, even her favorite shows change. Her temper is affected. My sweet, easy going little girl is replaced by someone that has emotions that are scarily close to the surface. She cries at the drop of the hat, and it is nearly impossible to calm her down once she has started. I feel like a glass wall has been brought down between us, and I can't get to her. I spend months breaking through the wall, all the time knowing that at any moment she could have a seizure, and it could start all over again.
In other words, it's my daughter's world. I'm just living in it.
Today her teacher emailed me because my daughter is experiencing double vision. My instincts are telling me that her dosage of this new medicine is too high, so we'll be either doing blood work or adjusting med levels. If it's not a med issue, I can't even begin to guess as to what is going on with her.
****I was right...we're adjusting med levels first.
There's another side of med switches, though. Once she's been on a medication for a few days, I can usually sense some personality changes, and I feel like I'm being introduced to a whole new individual. I have to get acquainted with this new little person. Her appetite changes. Her favorite foods change. Her sleep cycles change. Heck, even her favorite shows change. Her temper is affected. My sweet, easy going little girl is replaced by someone that has emotions that are scarily close to the surface. She cries at the drop of the hat, and it is nearly impossible to calm her down once she has started. I feel like a glass wall has been brought down between us, and I can't get to her. I spend months breaking through the wall, all the time knowing that at any moment she could have a seizure, and it could start all over again.
In other words, it's my daughter's world. I'm just living in it.
Today her teacher emailed me because my daughter is experiencing double vision. My instincts are telling me that her dosage of this new medicine is too high, so we'll be either doing blood work or adjusting med levels. If it's not a med issue, I can't even begin to guess as to what is going on with her.
****I was right...we're adjusting med levels first.
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