I spoke with Raquel's neurologist this afternoon. He obviously wasn't happy with what I was reporting, and feels that Keppra is no longer working at its full effect due to the increase in Raquel's seizure activity in such a short amount of time. Because of this, Dr. Mower put in the order for another anti-convulsant called Banzel. Side effects are like Keppra - on the light side - and nothing that should put her back in the emergency room for a week like we experienced with Lamictal a few months back.
The reason he wants to add this new medication instead of waiting until after the Ketogenic Diet is implemented next month, is because he says that the diet can take several weeks before changes are noticeable, and he did not feel, because of such an increase and them occuring out of nowhere (not just when she's stressed or overly tired anymore), this was the route to go. If we feel she is responding well to the diet, Banzel will be the first drug to be removed.
I was also instructed by Dr. Mower that if more head drop seizures occur, and are frequent like they were in the car the other day, I need to immediately give her the high dose of valium and to treat these exactly like I would if she was having "cluster" seizures.
In the meantime, since she'll be on the Low Glycemic Index Treatment diet to start with, I'm going to start removing the bad carbs she's been consuming, and replace them with gluten free comparable items. There are so many more products readily available now than when Raquel was previously on the GFCF diet, this will be much easier to do.
Monday, September 26, 2011
Friday, September 23, 2011
Head Drop Seizures
The majority of Raquel's seizures are called tonic seizures, where she'll suddenly get stiff as a board, raise her arms over her head, her face will grimace and typically get very red. Sometimes her eyes will start to roll back, and she becomes very unresponsive. But there is no visible shaking during these tonic seizures. They last anywhere between 30 seconds to a couple minutes from start to finish, and afterwards, although tired, will usually just go about her business. I do pretty well with these and don't tend to freak out too much anymore. Gabby may say different...
Then there are the myoclonic ones, where she has a jerking or twitching of a muscle group - almost always her arms. These are brief, and she responds well afterwards for the most part.
She also has some called tonic-clonic seizures. These are the ones that are referred to as "grand mal seizures", where the "blue factor" can come into play, and I totally freak. Fortunately, these are not as often. She'll start out getting all stiff (the tonic phase), and then the arms and legs jerk rapidly and rhythmically (clonic phase). Her lips and/or cheeks sometimes begin to turn blue due to lack of oxygen, and she often loses bladder control. These can last up to 3 minutes - for her - and consciousness returns very slowly. When she does come to, she appears very drowsy, disoriented, confused, and sometimes aggitated. She always wants to sleep. Gabby handles all of these seizure types like a pro.
Earlier this week, after having one of her tonic-clonic seizures, I posted about atypical behavior she was showing afterwards and that she had these weird head jerks. These are unfortunately head drop seizures.
This morning on our way to school, Gabby kept looking at Raquel in the backseat and I could tell she was concerned about something. She said Raquel started to drool a bit - which is not normal for her unless a seizure has occurred. Then she started dropping her head. She must have had 20 head drop seizures in the 10 minute drive to her school. At one point, Gabby was timing them at happening every 12 seconds. I, shockingly, handled these pretty well. I guess it's because the duration is so short - just a few seconds or so. But this is the first time I have ever seen Gabby get visibly upset. She started crying and climbed in the backseat to hold her sister and kept asking her what was wrong and if she was okay.
I immediately did a u-turn at Raquel's school so I could take her home and watch her. She was done with therapy for the week and Friday is just a play day for her, so she wasn't missing out on much except for social activities - and me being able to go to work. But I felt it was best to keep an eye on her.
I don't know why she has developed these seizures now. Nothing has changed medication or diet wise. Perhaps it's just another side effect from the medication. I am so thankful to have joined these online support groups, and am actually looking forward to meeting with the Keto Nutritionist to see what other options are available.
Then there are the myoclonic ones, where she has a jerking or twitching of a muscle group - almost always her arms. These are brief, and she responds well afterwards for the most part.
She also has some called tonic-clonic seizures. These are the ones that are referred to as "grand mal seizures", where the "blue factor" can come into play, and I totally freak. Fortunately, these are not as often. She'll start out getting all stiff (the tonic phase), and then the arms and legs jerk rapidly and rhythmically (clonic phase). Her lips and/or cheeks sometimes begin to turn blue due to lack of oxygen, and she often loses bladder control. These can last up to 3 minutes - for her - and consciousness returns very slowly. When she does come to, she appears very drowsy, disoriented, confused, and sometimes aggitated. She always wants to sleep. Gabby handles all of these seizure types like a pro.
Earlier this week, after having one of her tonic-clonic seizures, I posted about atypical behavior she was showing afterwards and that she had these weird head jerks. These are unfortunately head drop seizures.
This morning on our way to school, Gabby kept looking at Raquel in the backseat and I could tell she was concerned about something. She said Raquel started to drool a bit - which is not normal for her unless a seizure has occurred. Then she started dropping her head. She must have had 20 head drop seizures in the 10 minute drive to her school. At one point, Gabby was timing them at happening every 12 seconds. I, shockingly, handled these pretty well. I guess it's because the duration is so short - just a few seconds or so. But this is the first time I have ever seen Gabby get visibly upset. She started crying and climbed in the backseat to hold her sister and kept asking her what was wrong and if she was okay.
I immediately did a u-turn at Raquel's school so I could take her home and watch her. She was done with therapy for the week and Friday is just a play day for her, so she wasn't missing out on much except for social activities - and me being able to go to work. But I felt it was best to keep an eye on her.
I don't know why she has developed these seizures now. Nothing has changed medication or diet wise. Perhaps it's just another side effect from the medication. I am so thankful to have joined these online support groups, and am actually looking forward to meeting with the Keto Nutritionist to see what other options are available.
Tuesday, September 20, 2011
Keto Nutritionist Appointment Scheduled
I spoke with Vanessa, our Ketogenic Diet nutritionist, and have scheduled an initial appointment with her for October 19th. This will be a 2 hour appointment and Raquel is required to be there so she can evaluate her. She has also asked me to read a book (I already bought it), and search several websites and blogs that she gave me to familiarize myself with the diet more.
Based on our conversation and the questions I've answered, she is initially suggesting that we implement a Low Glycemic Index Treatment (LCIT) form of the Keto Diet, which she said is the least restrictive. She recommended LCIT mostly because Raquel isn't having seizures multiple times per day and thought we should start at the lower end of the diet which allows for more carbs.
She did say that she has treated all kinds of kids, some who didn't respond well to the Keto Diet, that developed behaviors, regressed, etc., to others who are completely off all medications and have been medication and seizure free for years. She said this is completely an individual thing and requests that we consistently stay on the diet for 3 months. At that point, she (we) will be able to tell if it's working or not. After 3 months, if we feel she is adjusting to the diet, meds will start being reduced and we go from there.
Obviously, I will get a bunch more info about the process come October 19th. In the meantime, I'll keep everything as is diet and medication wise, and start doing my homework.
Based on our conversation and the questions I've answered, she is initially suggesting that we implement a Low Glycemic Index Treatment (LCIT) form of the Keto Diet, which she said is the least restrictive. She recommended LCIT mostly because Raquel isn't having seizures multiple times per day and thought we should start at the lower end of the diet which allows for more carbs.
She did say that she has treated all kinds of kids, some who didn't respond well to the Keto Diet, that developed behaviors, regressed, etc., to others who are completely off all medications and have been medication and seizure free for years. She said this is completely an individual thing and requests that we consistently stay on the diet for 3 months. At that point, she (we) will be able to tell if it's working or not. After 3 months, if we feel she is adjusting to the diet, meds will start being reduced and we go from there.
Obviously, I will get a bunch more info about the process come October 19th. In the meantime, I'll keep everything as is diet and medication wise, and start doing my homework.
Monday, September 19, 2011
In A Lack Of Better Words ... Seizures Suck
I wish I could say that Raquel's seizures have improved, that's not the case. They have increased quite a bit - and I'm getting very concerned because I can't seem to identify what is triggering them. Simply being overly tired and overly stressed isn't working for me anymore.
She had a pretty good week in school last week, a couple mild seizures again in class, but nothing to the degree where I had to go pick her up. Friday I kept her home from school because she was sick - one of the perks of being back in school as everyone knows - and then I decided to keep her home again today because of the seizure activity yesterday and then again early this morning.
Yesterday's seizure pretty much came out of nowhere. She had a good morning, appeared to be feeling much better (from what I call the ace in my pocket - Frankincense & Myrrh Cold & Flu Prevention Homeopathic Rubbing Oil. I rub 10 drops to each foot at night before bedtime when symptoms start, and, wah-lah, it boosts immunity, and it is all natural.) We did errands in the morning, had lunch and a bath, had her meds on her regular schedule. When I was dressing her after the bath, she got really stiff in my hands and her eyes started to roll back. I immediately layed her on the floor - and, of course, called Gabby. Her face turned red and she began to shake a bit, but remained very responsive to her name and would even follow Gabby's eyes back and forth to keep looking at her.
What happened after this seizure was completely different and concerning. After she "came to", she rolled over on her stomach, which wasn't typical. Usually she gets up and walks around like nothing happened. Yesterday, she layed on her stomach for a minute, still shaking briefly, and when she finally was able to get up and walk around, her head would drop and twitch and she'd lose her balance. This happened maybe 5 times. I'm assuming this is what parents are referring to as head dropping seizures. Not sure.
Last night she slept soundly, and I had every intention of taking her to school this morning. But just as I was getting her changed into school clothes, she checked out on me again, but very briefly. I thought it was best to keep her home and let her rest some more. My respite worker thankfully came so I could go to work, and when she took her on her usual walk, she had another seizure in the stroller. She then slept off and on until I was able to get home later this morning. So frustrating.
Dr. Mower has talked to several neurologists and has reviewed Raquel's medication therapy and tests/results with them and again wants me to meet with the Ketogenic Diet Nutritionist. We've been playing a bit of phone tag, and am waiting to get my initial appointment scheduled. Although I'm very concerned about this diet - from what I've read it's similar to an Atkins thing and exactly the opposite of how I cook - most of the people from the Keto support group report amazing things. I spoke with a mom today whose kid has been seizure free since starting the diet in the last year and is also no longer on any medications. As much as the diet concerns me, I'd much rather, at this point, try something like that instead of introducing another medication and dealing with more harmful side effects. Hopefully I'll get the consultation scheduled soon and can make decisions from there.
She had a pretty good week in school last week, a couple mild seizures again in class, but nothing to the degree where I had to go pick her up. Friday I kept her home from school because she was sick - one of the perks of being back in school as everyone knows - and then I decided to keep her home again today because of the seizure activity yesterday and then again early this morning.
Yesterday's seizure pretty much came out of nowhere. She had a good morning, appeared to be feeling much better (from what I call the ace in my pocket - Frankincense & Myrrh Cold & Flu Prevention Homeopathic Rubbing Oil. I rub 10 drops to each foot at night before bedtime when symptoms start, and, wah-lah, it boosts immunity, and it is all natural.) We did errands in the morning, had lunch and a bath, had her meds on her regular schedule. When I was dressing her after the bath, she got really stiff in my hands and her eyes started to roll back. I immediately layed her on the floor - and, of course, called Gabby. Her face turned red and she began to shake a bit, but remained very responsive to her name and would even follow Gabby's eyes back and forth to keep looking at her.
What happened after this seizure was completely different and concerning. After she "came to", she rolled over on her stomach, which wasn't typical. Usually she gets up and walks around like nothing happened. Yesterday, she layed on her stomach for a minute, still shaking briefly, and when she finally was able to get up and walk around, her head would drop and twitch and she'd lose her balance. This happened maybe 5 times. I'm assuming this is what parents are referring to as head dropping seizures. Not sure.
Last night she slept soundly, and I had every intention of taking her to school this morning. But just as I was getting her changed into school clothes, she checked out on me again, but very briefly. I thought it was best to keep her home and let her rest some more. My respite worker thankfully came so I could go to work, and when she took her on her usual walk, she had another seizure in the stroller. She then slept off and on until I was able to get home later this morning. So frustrating.
Dr. Mower has talked to several neurologists and has reviewed Raquel's medication therapy and tests/results with them and again wants me to meet with the Ketogenic Diet Nutritionist. We've been playing a bit of phone tag, and am waiting to get my initial appointment scheduled. Although I'm very concerned about this diet - from what I've read it's similar to an Atkins thing and exactly the opposite of how I cook - most of the people from the Keto support group report amazing things. I spoke with a mom today whose kid has been seizure free since starting the diet in the last year and is also no longer on any medications. As much as the diet concerns me, I'd much rather, at this point, try something like that instead of introducing another medication and dealing with more harmful side effects. Hopefully I'll get the consultation scheduled soon and can make decisions from there.
Tuesday, September 6, 2011
Plugging Along
After Raquel's seizure in kindergarten on her 3rd day of class, she had two more in school at the start of the following week. I assumed the initial seizure was due to her meds being out of whack, so I was extremely diligent about making sure she had all of her doses in her at pretty much the same time of day after that. And she remained seizure free at home.
I was surprised last Monday when they called me shortly after I dropped her off. The nurse told me she had a seizure during her initial circle time, but it wasn't as bad as the first one - she didn't turn blue at least - and by the time he got to her classroom, she was up and around and even having some breakfast. I chose to keep her there in class and see how she did. Besides being tired and falling asleep off and on in the car on the way home, she seemed okay. Tuesday's seizure was pretty concerning, lasting far longer than they do when she has them at home, and although she thankfully didn't turn blue again, her complexion did change and she was a bit out of sorts. I immediately went and got her. She fell asleep on the way home and then slept and slept off and on for the rest of the day and then all through the night.
I didn't sleep much last Tuesday night, was concerned about what was triggering these things if all her meds were in check. I knew she wasn't overly tired because she seemed to have really caught up with her sleep, and she definitely wasn't stressed at home. I was just at a loss. When I dropped her off on Wednesday, I left in tears. I know that made the teacher feel bad, but part of me wanted to sit in the parking lot holding my cell phone waiting for Nurse Brian to call me to come get her. Instead, I needed to go to work. Thank you, Terri, for coming in my office and letting me cry on your shoulder. It helped.
I can't begin to describe what it feels like having a non-verbal child who cannot tell me what is bothering them, who is unable to use sign-language due to lack of fine motor skills. It is a constant guessing game. I do not know what was stressing her during class, if that is what was occuring. Maybe it was stress due to transitioning from preschool to kindergarten. I don't know. And I still don't. But when I picked her up last Wednesday at the end of class, I was told she had a great day. And she hasn't had a seizure in school since. I know that has only been 4 days if you count today, but I will take it. The cup is half full, right?
I have a call in to Dr. Mower, at Nurse Brian and the school district's request, to put a seizure control plan in place. They want her neurologist to specifically document what he wants them to do and when to do it when a seizure takes place, ie. when to administer meds and what kind, when to call 911, etc. I'm waiting to hear back from him. I did hear back from the Ketogenic Diet nutrionist about scheduling an initial consultation. I just haven't wanted to call her back yet. :)
Here is Raquel in class, happily ready to get started in circle time.
Me and my girl waiting to join up with the rest of her class coming from the bus stop. When I've walked over by her school on weekends, I would intentionally run up and down all the stairs just to get some extra cardio in. I no longer like them. And there shouldn't be that many. Really.
Gabby proudly giving Raquel a "Big Sister, Little Sister" necklace.
I think Raquel liked it. They continue to have a very special bond.
Let's see what this week shall bring...
I was surprised last Monday when they called me shortly after I dropped her off. The nurse told me she had a seizure during her initial circle time, but it wasn't as bad as the first one - she didn't turn blue at least - and by the time he got to her classroom, she was up and around and even having some breakfast. I chose to keep her there in class and see how she did. Besides being tired and falling asleep off and on in the car on the way home, she seemed okay. Tuesday's seizure was pretty concerning, lasting far longer than they do when she has them at home, and although she thankfully didn't turn blue again, her complexion did change and she was a bit out of sorts. I immediately went and got her. She fell asleep on the way home and then slept and slept off and on for the rest of the day and then all through the night.
I didn't sleep much last Tuesday night, was concerned about what was triggering these things if all her meds were in check. I knew she wasn't overly tired because she seemed to have really caught up with her sleep, and she definitely wasn't stressed at home. I was just at a loss. When I dropped her off on Wednesday, I left in tears. I know that made the teacher feel bad, but part of me wanted to sit in the parking lot holding my cell phone waiting for Nurse Brian to call me to come get her. Instead, I needed to go to work. Thank you, Terri, for coming in my office and letting me cry on your shoulder. It helped.
I can't begin to describe what it feels like having a non-verbal child who cannot tell me what is bothering them, who is unable to use sign-language due to lack of fine motor skills. It is a constant guessing game. I do not know what was stressing her during class, if that is what was occuring. Maybe it was stress due to transitioning from preschool to kindergarten. I don't know. And I still don't. But when I picked her up last Wednesday at the end of class, I was told she had a great day. And she hasn't had a seizure in school since. I know that has only been 4 days if you count today, but I will take it. The cup is half full, right?
I have a call in to Dr. Mower, at Nurse Brian and the school district's request, to put a seizure control plan in place. They want her neurologist to specifically document what he wants them to do and when to do it when a seizure takes place, ie. when to administer meds and what kind, when to call 911, etc. I'm waiting to hear back from him. I did hear back from the Ketogenic Diet nutrionist about scheduling an initial consultation. I just haven't wanted to call her back yet. :)
Here is Raquel in class, happily ready to get started in circle time.
Me and my girl waiting to join up with the rest of her class coming from the bus stop. When I've walked over by her school on weekends, I would intentionally run up and down all the stairs just to get some extra cardio in. I no longer like them. And there shouldn't be that many. Really.
Gabby proudly giving Raquel a "Big Sister, Little Sister" necklace.
I think Raquel liked it. They continue to have a very special bond.
Let's see what this week shall bring...
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