Rayleigh had a visit with her pediatrician last Monday. We discussed how poorly Bug has been eating and also how she's been behaving and how seizure control has been. She is referring us a GI doctor that is familiar with the Keto Diet and with children that have neuro disorders. I have to call tomorrow to get that appointment scheduled. The pediatrician also wants us to talk to Bug's neurologist about her medicines because she thinks they could be the problem and that would be an easier fix.
I talked with her neuro on the phone for about 30 minutes going through Bug's seizure journal that I keep. It's just a notebook that I write each day of all of her seizures, changes in meds, mood/temperment, how she ate and if she was ill or teething that day. We went back through several months to figure out when was the last time she was eating well AND had fairly good seizure control. It appears that the best she was doing in recent months was when we were still on a low dose of Lamictal and working out way up on it AND was still taking a small dose of the Vimpat.
So here's our game plan: Stay on the 3.25:1 ratio of the Ketogenic Diet for a little while longer (she's tolerating well enough and we don't want to make too many changes at once). Meanwhile, we'll stay on 1 pill of Clobazam/Onfi 3 times a day and the changes will be to lower Lamictal in the morning to 2 pills and keep doing 3 pills at night and we are back to 1/2 pill Vimpat twice a day.
- Long story longer -
Bug's pediatrician said that Bug may have built an immunity to the Prevacid because it's really only meant to be taken for a couple of weeks at a time and Bug has been on it for months as a daily antiacid. She said rather than continuing to raise the dose every time it stops controlling the reflux she wants us to switch Bug to Nexium so we started that yesterday and she seems to be doing well on it. She vomitted last night but I think it was the adjustment from no Prevacid to a new medicine that takes a couple of days to take effect. No vomit or acidy smells today so I think the Nexium is doing it's job now.
Bug is still not eating well. We'll keep pushing until we figure something out that works for her. The pediatrician said Bug is down to 25 lbs which is only 20-30 percentile for weight. She's lost 13% of her body fat which is a big deal and has all of her doctor team working hard to find a fix - and her parents, too!
Bug in Air
Showing posts with label pediatric neurologist. Show all posts
Showing posts with label pediatric neurologist. Show all posts
Sunday, September 23, 2012
Tuesday, September 4, 2012
We Thought We'd Have Some Answers By Now
Well, the title pretty much sums it all up. Rayleigh is 2 1/2 years old. We've been on the epilepsy road for over 2 years with no explanation of why. We finally found a genetic disorder that she really seems to fit (CDKL5) but the results are taking FOREVER! Or at least it feels like it.
I've been calling the epileptologist's office twice a week, every week, for the past month to check on the status or see if they've gotten the results and every time I hear the same thing "We have the results for the Rett Syndrome test and they are negative, we are not showing any other DNA results back."
Then I have to go through and explain the specific EIEE test that we had saved and earned money for to get Bug tested for CDKL5 along with 2 other rare genetic disorders.
I did this last Friday and his nurse said, "There's a DNA test result in here, has Dr. Ng called you with the results?" I informed her that the only results we've received were through the mail and were negative Rett test and normal glucose levels. She said that she would flag that test and have Dr. Ng call us.
Then she called us today and said that Dr. Ng reviewed all of the test results on her file and she is negative for Rett. I was thinking "Are you kidding me?!? I get it. No Rett. That is not what I have been calling about." So I politely asked if there are any other genetic tests that have come back and explained exactly which test results we were waiting on and she said that those results weren't in there but she would talk to the epileptologist and get back to us shortly with either the results or the status of the testing. She didn't return my call today so I'm expecting to hear back from her tomorrow morning - or I'll be calling again, the nagging patient gets the results (my father-in-law always says "The squeaky wheel gets the oil").
I just don't understand what could be taking so long and why there is so little I can do from my end. I am one frustrated mommy tonight.
I keep trying to reassure myself by saying things like "What's one more day? It's been this long already." But seriously, I want to know yesterday!!! That being said, I went ahead and joined the CDKL5 group on Facebook as suggested by a friend and they really feel like family already. So I'll keep focusing on the positive and nagging nurses and waiting (impatiently) until those results come in. And I promise to keep you posted :)
--------------------------------
Bug's current medications & control:
I've been calling the epileptologist's office twice a week, every week, for the past month to check on the status or see if they've gotten the results and every time I hear the same thing "We have the results for the Rett Syndrome test and they are negative, we are not showing any other DNA results back."
Then I have to go through and explain the specific EIEE test that we had saved and earned money for to get Bug tested for CDKL5 along with 2 other rare genetic disorders.
I did this last Friday and his nurse said, "There's a DNA test result in here, has Dr. Ng called you with the results?" I informed her that the only results we've received were through the mail and were negative Rett test and normal glucose levels. She said that she would flag that test and have Dr. Ng call us.
Then she called us today and said that Dr. Ng reviewed all of the test results on her file and she is negative for Rett. I was thinking "Are you kidding me?!? I get it. No Rett. That is not what I have been calling about." So I politely asked if there are any other genetic tests that have come back and explained exactly which test results we were waiting on and she said that those results weren't in there but she would talk to the epileptologist and get back to us shortly with either the results or the status of the testing. She didn't return my call today so I'm expecting to hear back from her tomorrow morning - or I'll be calling again, the nagging patient gets the results (my father-in-law always says "The squeaky wheel gets the oil").
I just don't understand what could be taking so long and why there is so little I can do from my end. I am one frustrated mommy tonight.
I keep trying to reassure myself by saying things like "What's one more day? It's been this long already." But seriously, I want to know yesterday!!! That being said, I went ahead and joined the CDKL5 group on Facebook as suggested by a friend and they really feel like family already. So I'll keep focusing on the positive and nagging nurses and waiting (impatiently) until those results come in. And I promise to keep you posted :)
--------------------------------
Bug's current medications & control:
- Ketogenic Diet 3.5:1 ratio
- Onfi/Clobazam, 10mg: 1 pill 3 times a day
- Vimpat, 25 mg once at night
- Lamictal, 25mg: 3 pills twice a day - just started this dose today, full dose
Saturday, December 24, 2011
From Bad to Worse
Yesterday Bug had an EEG and followup doctor appointment with her neuro right after. The EEG went well and she slept at the right time to get a clear reading.
When we saw Dr. Coleman, her pediatric neurologist, he looked solemn and said that he had bad news.
He proceeded to tell Michael and I that Bug's background has changed and is no longer normal. Instead, it is spiking even when she is not seizing and there is also some slowing in activity. And now the spike activity is happening on both hemispheres rather than just the right side like previous EEGs.
He said that this is noticeable with Infantile Spasms but that her seizures don't physical appear to be Infantile Spasms. Her neuro told us that she is experiencing spasm seizures. This is when she has her head drops and includes the seizures when she opens her eyes, makes wide arm movements and smacks her lips while blinking and opening eyes wide.
The treatment for these spasm seizures is to wean her off of Trileptal within the next 10 days because it does nothing for this seizure type. It is not hurting but it isn't helping. During that time we have increased her diet ratio from 3:1 to 3.5:1 (more fat and less carb). The Ketogenic Diet has shown great success is reducing spasm seizures for so many kids so we are focusing on getting her ketone levels really high again with more fat in the meals. Her ketones have been moderately high for the last few weeks but are only occasionally at their highest anymore.
We will give the 3.5:1 ratio 1 full week and if she is still having the spasm seizures we will go up to a 4:1 ratio (if her body is tolerating the diet, that is). And if she continues to have the spasms after 1 week on 4:1 then we will wean her off the diet and start a new treatment.
The new treatment options are this:
Sabril: Medical name is Vigabatrin. It is a short term medicine that Rayleigh would take every day for 2-3 months. It is specifically for spasms. Sabril can cause liver problems, irritability, sleep issues, and there is a more common effect of visual impairment. It is known to decrease her peripheral vision slightly. Like I said, she would take this medicine for 2-3 months (while continuing Clobazam) and then she would be weaned off the medicine and Clobazam would be the maintenance medicine. Supposedly whatever results she gains while on Sabril will remain when she is weaned off the medicine and stay on Clobazam.
ACTH: This is a steroid. It would a shot, that Michael and I would give her daily for 4-8 weeks. She would be on the steriod and Clobazam at the same time. It is similar to Sabril in that they are both short term but should produce long term results. The ACTH is known to significantly suppress the immune system so the neuro has already advised that if/when we go down this route that we should keep Bug in as much as possible during that time. The steroid also has side effects of causing high blood sugar levels, irritability, and sleep issues. The steroid requires a hospital stay to start so they can show us how to do the shots and monitor her levels to make sure that Bug's body is handling the steroid alright.
Rayleigh will have another EEG in 2 weeks if the spasms start to look controlled by the diet or 4 weeks if we need to start one of the treatment options.
Her neuro said that is completely up to Michael and I as to whether we'd prefer to try the medicine or the steroid start.
The worst part of this visit with the neuro was not this information though. The worst part, was that the neuro told us that Bug will always be developmentally delayed. There is an extremely high chance that she will never catch up. There is a slight possibility that she may still sit up, still talk and even may walk in her future. Chances of her talking before age 4 are very very slim and chances of her sitting or trying to walk won't improve until 5-8 years old. Michael and I were just devastated. Yesterday was a very hard day for both of us. The only thing that cheered us up all day was that Bug kept giggling. Like she was trying to tell Mommy & Daddy to be happy and that everything will be fine.
We are in a much better place with all of this today. I don't know why this happened to our baby girl but we will NEVER stop loving her and we do not love her any less than we did before. She is an amazing little girl and just a ball of love. Bug is a joy to be around.
Tomorrow is Christmas and we will focus on making this a wonderful holiday for our baby Bug. We will shower her with gifts from Santa to entertain her and hopefully help with her development and intrigue her to want to play!
Merry Christmas to all! May God bless your family during this holiday season :)
When we saw Dr. Coleman, her pediatric neurologist, he looked solemn and said that he had bad news.
He proceeded to tell Michael and I that Bug's background has changed and is no longer normal. Instead, it is spiking even when she is not seizing and there is also some slowing in activity. And now the spike activity is happening on both hemispheres rather than just the right side like previous EEGs.
He said that this is noticeable with Infantile Spasms but that her seizures don't physical appear to be Infantile Spasms. Her neuro told us that she is experiencing spasm seizures. This is when she has her head drops and includes the seizures when she opens her eyes, makes wide arm movements and smacks her lips while blinking and opening eyes wide.
The treatment for these spasm seizures is to wean her off of Trileptal within the next 10 days because it does nothing for this seizure type. It is not hurting but it isn't helping. During that time we have increased her diet ratio from 3:1 to 3.5:1 (more fat and less carb). The Ketogenic Diet has shown great success is reducing spasm seizures for so many kids so we are focusing on getting her ketone levels really high again with more fat in the meals. Her ketones have been moderately high for the last few weeks but are only occasionally at their highest anymore.
We will give the 3.5:1 ratio 1 full week and if she is still having the spasm seizures we will go up to a 4:1 ratio (if her body is tolerating the diet, that is). And if she continues to have the spasms after 1 week on 4:1 then we will wean her off the diet and start a new treatment.
The new treatment options are this:
Sabril: Medical name is Vigabatrin. It is a short term medicine that Rayleigh would take every day for 2-3 months. It is specifically for spasms. Sabril can cause liver problems, irritability, sleep issues, and there is a more common effect of visual impairment. It is known to decrease her peripheral vision slightly. Like I said, she would take this medicine for 2-3 months (while continuing Clobazam) and then she would be weaned off the medicine and Clobazam would be the maintenance medicine. Supposedly whatever results she gains while on Sabril will remain when she is weaned off the medicine and stay on Clobazam.
ACTH: This is a steroid. It would a shot, that Michael and I would give her daily for 4-8 weeks. She would be on the steriod and Clobazam at the same time. It is similar to Sabril in that they are both short term but should produce long term results. The ACTH is known to significantly suppress the immune system so the neuro has already advised that if/when we go down this route that we should keep Bug in as much as possible during that time. The steroid also has side effects of causing high blood sugar levels, irritability, and sleep issues. The steroid requires a hospital stay to start so they can show us how to do the shots and monitor her levels to make sure that Bug's body is handling the steroid alright.
Rayleigh will have another EEG in 2 weeks if the spasms start to look controlled by the diet or 4 weeks if we need to start one of the treatment options.
Her neuro said that is completely up to Michael and I as to whether we'd prefer to try the medicine or the steroid start.
The worst part of this visit with the neuro was not this information though. The worst part, was that the neuro told us that Bug will always be developmentally delayed. There is an extremely high chance that she will never catch up. There is a slight possibility that she may still sit up, still talk and even may walk in her future. Chances of her talking before age 4 are very very slim and chances of her sitting or trying to walk won't improve until 5-8 years old. Michael and I were just devastated. Yesterday was a very hard day for both of us. The only thing that cheered us up all day was that Bug kept giggling. Like she was trying to tell Mommy & Daddy to be happy and that everything will be fine.
We are in a much better place with all of this today. I don't know why this happened to our baby girl but we will NEVER stop loving her and we do not love her any less than we did before. She is an amazing little girl and just a ball of love. Bug is a joy to be around.
Tomorrow is Christmas and we will focus on making this a wonderful holiday for our baby Bug. We will shower her with gifts from Santa to entertain her and hopefully help with her development and intrigue her to want to play!
Merry Christmas to all! May God bless your family during this holiday season :)
Thursday, December 15, 2011
Sometimes You Don't Want Your Gut Feeling to Be True
As you can tell by the title of this post, I am not in the lightest of moods tonight. Bug had her checkup with the neuro today. We went in with 2 pages of questions to ask about Bug's behavior and things we've noticed. We got a lot of answers and here's pretty much the gist of it.
Rayleigh has nystagmus. It's an eye condition, not necessarily a brain condition. Simply put, nystagmus is when the eyes shake. In Rayleigh's case, her eyes only shake occasionally and not constantly. They shake side to side when she looks far to her left or right and I've also seen them rotate back and forth slightly when focusing. Her neuro said that based on what we know about Rayleigh and that she hasn't always had nystagmus that her condition was probably brought on by her seizure control medicines. Nystagmus as a result of seizure control medicine is most commonly attributed to Phenobarbital but can be a side effect of many seizure control medicines including Clobazam which Bug has been on for over a year now.
If Bug's nystagmus is a result of medication she will have the condition for as long as she is on the medication but on that same note, if it is the medicine causing the nystagmus then it will go away if/when she is off that medicine. We are making an appointment with Bug's neuro-opthomologist to find out more about nystagmus.
While we were talking with the neuro about this, Bug did her head drop. The neuro asked if this was the same type of head drop we had shown him on video back in October and we said yes. He then told us that it looked like a seizure and she did the head drop 2 more times in that 2 minute period. The neuro asked questions like when she does them (mostly when she's sleepy but also randomly rarely), how she reacts after a drop (like nothing happened, but sometimes a big head drop takes her a few seconds to recover and "come to") and then I told the neuro about this new thing that Rayleigh as been doing this week. When she's awake she will start smacking her lips, arms will go out slightly and then come back in and eyes blink.
He then confirmed (not 100% without EEG but pretty much) that we are describing myoclonic-astatic seizures.
The "head drops" are a drop seizure.
When she has the myoclonic-astatic seizure followed by a small head drop in the way that Bug does it is similar to last year when she would have a partial seizure that was followed by myoclonic jerks.
So what we thought was 12 weeks of seizure freedom was really just 12 weeks of partial onset seizure freedom.
There are 2 types of medicine that Rayleigh has not tried before that are used to control myoclonic-astatic seizures: Lamictal and Depakote. It could cause more seizures if we start one of these new medicines along with her existing medicines while on the diet. Plus, these both seem to have nasty side effects that are increased in children under 2 years old. But we know what's next to take if we have to get there.
The current plan is this: We have already increased her dose of Trileptal back up to 1/2 pill morning and 1 full pill at night along with the 1 pill of Clobazam 3 times a day. We can go up higher on the Trileptal if we need to. We will also be upping the ratio on her diet which has shown a lot of success in many cases.
The neuro says that there are several explanations for why Bug's seizures went from ONLY happening during sleep to completing changing form and happening awake. The most likely reason being that her brain is maturing as she grows older. The least likely reason being the diet.
The only good thing to take away from knowing that these have been seizures is that they do not physically hurt her or affect her mood. I do still believe that they are hindering her development though :(
The neuro is ordering an EEG with an immediate visit with him right after it's done to discuss results so I'll repost after that. It should be within the next 2 weeks. Until then, we will love our Bug just the same and enjoy Christmas with her!
Rayleigh has nystagmus. It's an eye condition, not necessarily a brain condition. Simply put, nystagmus is when the eyes shake. In Rayleigh's case, her eyes only shake occasionally and not constantly. They shake side to side when she looks far to her left or right and I've also seen them rotate back and forth slightly when focusing. Her neuro said that based on what we know about Rayleigh and that she hasn't always had nystagmus that her condition was probably brought on by her seizure control medicines. Nystagmus as a result of seizure control medicine is most commonly attributed to Phenobarbital but can be a side effect of many seizure control medicines including Clobazam which Bug has been on for over a year now.
If Bug's nystagmus is a result of medication she will have the condition for as long as she is on the medication but on that same note, if it is the medicine causing the nystagmus then it will go away if/when she is off that medicine. We are making an appointment with Bug's neuro-opthomologist to find out more about nystagmus.
While we were talking with the neuro about this, Bug did her head drop. The neuro asked if this was the same type of head drop we had shown him on video back in October and we said yes. He then told us that it looked like a seizure and she did the head drop 2 more times in that 2 minute period. The neuro asked questions like when she does them (mostly when she's sleepy but also randomly rarely), how she reacts after a drop (like nothing happened, but sometimes a big head drop takes her a few seconds to recover and "come to") and then I told the neuro about this new thing that Rayleigh as been doing this week. When she's awake she will start smacking her lips, arms will go out slightly and then come back in and eyes blink.
He then confirmed (not 100% without EEG but pretty much) that we are describing myoclonic-astatic seizures.
The "head drops" are a drop seizure.
When she has the myoclonic-astatic seizure followed by a small head drop in the way that Bug does it is similar to last year when she would have a partial seizure that was followed by myoclonic jerks.
So what we thought was 12 weeks of seizure freedom was really just 12 weeks of partial onset seizure freedom.
There are 2 types of medicine that Rayleigh has not tried before that are used to control myoclonic-astatic seizures: Lamictal and Depakote. It could cause more seizures if we start one of these new medicines along with her existing medicines while on the diet. Plus, these both seem to have nasty side effects that are increased in children under 2 years old. But we know what's next to take if we have to get there.
The current plan is this: We have already increased her dose of Trileptal back up to 1/2 pill morning and 1 full pill at night along with the 1 pill of Clobazam 3 times a day. We can go up higher on the Trileptal if we need to. We will also be upping the ratio on her diet which has shown a lot of success in many cases.
The neuro says that there are several explanations for why Bug's seizures went from ONLY happening during sleep to completing changing form and happening awake. The most likely reason being that her brain is maturing as she grows older. The least likely reason being the diet.
The only good thing to take away from knowing that these have been seizures is that they do not physically hurt her or affect her mood. I do still believe that they are hindering her development though :(
The neuro is ordering an EEG with an immediate visit with him right after it's done to discuss results so I'll repost after that. It should be within the next 2 weeks. Until then, we will love our Bug just the same and enjoy Christmas with her!
Wednesday, December 14, 2011
So Many Thoughts
It's the Christmas season once again. Such a beautiful time of year here in Oklahoma! I love the cool crisp air outside and the giving feeling and the bright lights on the houses at night! I'm hoping Bug is enjoying it as much as me. This weekend we're taking her to the light shows around town, that was one of her favorite activities last year! They're easy for her to see and the Christmas music you tune to in the car is upbeat and she sits on my lap while Michael drives through the park :)
This Christmas we feel like we've already received a gift that is better than anything Santa could bring down the chimney - Rayleigh is 12 weeks seizure free!!
We've also been weaning her Trileptal down by 1/2 pill every 4 weeks so we are currently down to 1/2 pill twice a day! She has so much more energy now! I knew we'd see some good things after getting medicine out of her system but I had no idea how drastic her energy level would change!
While those things are really really awesome I have to say that going into Bug's neuro appt tomorrow Michael and I have a ton of questions! Bug is still doing her head drops that her neuro previously told us he doesn't believe they are seizure activity but because she's still doing them occasionally when she's sleepy I want to know more about them.
She's also recently started waking up startled about 10 minutes after falling asleep. What I mean is, she falls asleep and everything is calm and fine and then she pops her eyes open and looks straight up and arms slightly go out for about 2 seconds and then she relaxes, looks around and sucks on her pacifier and then goes back to sleep shortly after.
I'm also pretty concerned that her development isn't improving any faster than it was before seizure freedom.
I just feel sometimes like as soon as we figure something out a whole new issue feels our mind.
I'll repost soon after her visit with the neuro Thursday.
Sunday, October 16, 2011
Record-Breaking Seizure Control
That's right, Bug has now set a new record on her seizure-free consecutive days! Her previous longest streak was 17 days (when we first started Clobazam) and now she is at... wait for it...
27 days seizure-free in a row!!!!!!!!
When we had our check up with her pediatric neurologist last week he said that if we went until October 17 (tomorrow) seizure-free than we can start weaning the Trileptal down. The weaning process will be 5 months long. It is a very gradual process so as not to disrupt anything the diet is doing. She is currently on 2 1/2 pills a day so we will take it down by 1/2 a pill a month. We're really hoping that once this gets down to a better level she will seem more alert and not so drowsy throughout the day.
Bug sleeps an average of 9-10 hours at night and then takes a morning nap for 45 mins - 1 hour and then takes an afternoon nap for usually 2 hours. That's a whole lotta sleeping and doesn't leave room for a whole lotta physical therapy and learning activities!
She is still making good progress on her development. Every week at Jim Thorpe with Miss Rachel helps more and more! We are also still working with an occupational therapist that also does some physical therapy from SoonerStart in home once a week.
I read in an excerpt from a book that there is not really a "honeymoon" phase with the Ketogenic Diet. Usually once you gain good seizure-control it is not temporary. If breakthrough seizures do occur it can be traced back to something specific like a "cheat" in the diet or the child being sick or something of that nature and you can almost always get back to ketosis to control seizures. Gosh, I really hope that's true!
Oh, and one more small note: Rayleigh's pediatric neuro looked at her weight gain and percentiles and her BMI, which is at 91% and said that we should call our dietitian at Cook Children's Hospital to lower the calories so that the meals are smaller (but still the same ratio of 3:1) so she doesn't gain too much weight too quickly. We spoke with her last week and she updated the meals Friday so she's been on a smaller calorie intake over the weekend already.
27 days seizure-free in a row!!!!!!!!
When we had our check up with her pediatric neurologist last week he said that if we went until October 17 (tomorrow) seizure-free than we can start weaning the Trileptal down. The weaning process will be 5 months long. It is a very gradual process so as not to disrupt anything the diet is doing. She is currently on 2 1/2 pills a day so we will take it down by 1/2 a pill a month. We're really hoping that once this gets down to a better level she will seem more alert and not so drowsy throughout the day.
Bug sleeps an average of 9-10 hours at night and then takes a morning nap for 45 mins - 1 hour and then takes an afternoon nap for usually 2 hours. That's a whole lotta sleeping and doesn't leave room for a whole lotta physical therapy and learning activities!
She is still making good progress on her development. Every week at Jim Thorpe with Miss Rachel helps more and more! We are also still working with an occupational therapist that also does some physical therapy from SoonerStart in home once a week.
I read in an excerpt from a book that there is not really a "honeymoon" phase with the Ketogenic Diet. Usually once you gain good seizure-control it is not temporary. If breakthrough seizures do occur it can be traced back to something specific like a "cheat" in the diet or the child being sick or something of that nature and you can almost always get back to ketosis to control seizures. Gosh, I really hope that's true!
Oh, and one more small note: Rayleigh's pediatric neuro looked at her weight gain and percentiles and her BMI, which is at 91% and said that we should call our dietitian at Cook Children's Hospital to lower the calories so that the meals are smaller (but still the same ratio of 3:1) so she doesn't gain too much weight too quickly. We spoke with her last week and she updated the meals Friday so she's been on a smaller calorie intake over the weekend already.
Thursday, October 6, 2011
Diet Update
We are 2 months into the Ketogenic Diet and Rayleigh is doing so well! She has taken to it like a champ from the beginning eating every bite every time whether she's tired, full, fussy or whatever. Through September she was still having about 1 seizure a week. Today we are on day 16 seizure-free! KNOCK ON WOOD
She's showing more personality now than ever before. Even friends and family that don't see her every day are noticing the change. It's small and gradual but it's there. She lights up when she sees people she loves, she reacts to things more now, she vocalizes a lot more now. Bug is also making some strides in development. She's doing way more propping during tummy time and rolling all over! We're still working on getting her to sit independently and reach for toys on her own but we're making progress with her.
Rayleigh Bug has tried hot dogs and spaghetti squash (two different meals, not together!) in the last month and loves both. It's so exciting to see her trying new things!
Bug had a well-baby check up yesterday and she is currently 29 1/2 inches tall and just about 24 lbs. She is now on the 5-10% for height and 50% for weight. Her pediatrician doesn't think it's anything to worry about at this point and she looks healthy :)
In the last couple of weeks Rayleigh has been doing what we call "head drops". It mostly happens when she's tired and is usually in her Bumbo but she's also done them while we're carrying her. What she does is, her upper body will just kind of fall forward for a split second and then she'll pop right back up. We took a video of them and showed them to her pediatric neurologist and he doesn't think they are seizure activity. He thinks they are behavioral. Bug has her monthly check up with him Monday so we will talk more about that and discuss whether to get an EEG or not (right now, probably not).
She's showing more personality now than ever before. Even friends and family that don't see her every day are noticing the change. It's small and gradual but it's there. She lights up when she sees people she loves, she reacts to things more now, she vocalizes a lot more now. Bug is also making some strides in development. She's doing way more propping during tummy time and rolling all over! We're still working on getting her to sit independently and reach for toys on her own but we're making progress with her.
Rayleigh Bug has tried hot dogs and spaghetti squash (two different meals, not together!) in the last month and loves both. It's so exciting to see her trying new things!
Bug had a well-baby check up yesterday and she is currently 29 1/2 inches tall and just about 24 lbs. She is now on the 5-10% for height and 50% for weight. Her pediatrician doesn't think it's anything to worry about at this point and she looks healthy :)
In the last couple of weeks Rayleigh has been doing what we call "head drops". It mostly happens when she's tired and is usually in her Bumbo but she's also done them while we're carrying her. What she does is, her upper body will just kind of fall forward for a split second and then she'll pop right back up. We took a video of them and showed them to her pediatric neurologist and he doesn't think they are seizure activity. He thinks they are behavioral. Bug has her monthly check up with him Monday so we will talk more about that and discuss whether to get an EEG or not (right now, probably not).
Monday, September 19, 2011
1 Month Down, 23 To Go
First off, I am so sorry to my active followers for the super long delay on this update! Rayleigh has been keeping me very busy with her diet and physical therapies!
All of that aside, Rayleigh is doing great. The first few weeks on the diet were very up and down with results and consistency. After those weeks she went 7 days without a seizure and then she started having them once every 3 days. While disappointed that they had started getting more frequent we were still happy for her to get a couple days of break between a day with a seizure. So she had gone from 1-2 seizures every day to 1 every 3 days. Improvement but not completely controlled.
We currently stand at 1 seizure a week. We went 6 days seizure-free and then had a seizure on Monday at 5:30am and then we went 6 days seizure-free and she had one this morning (Monday at 3:30am). 2 seizures in 2 weeks is waaayy better than 1-2 every day.
The best part is that she just seems happier. She's starting to show more of a personality than ever. Baby steps is the key here and I think we are making them. Hopefully within a year or two I will mean literal baby steps but for now I mean small strides towards a big goal.
Bug's seizures still only happen during sleep. She wakes up, has a blank stare, tenses up with arms extended out, makes a grunting noise as the lungs contract and then draws her arms to her body and stays tense and labored breathing for about a minute before she relaxes fully.
So this Ketogenic Diet definitely seems to be doing some good and helping out a great deal! We will be talking with her pediatric neurologist this week to see if we can start weaning her Trileptal off so that she is just taking the Clobazam while on the diet. If we get better seizure control on the diet we could take the Clobazam off as well!
Rayleigh's development is slowly improving but I doubt we will see any major changes until we get consistent seizure control. Once that happens her brain will really be able to maintain what she learns through therapies and further interest and improve eyesight! Lots of goals for one little girl but we will never give up on her!
All of that aside, Rayleigh is doing great. The first few weeks on the diet were very up and down with results and consistency. After those weeks she went 7 days without a seizure and then she started having them once every 3 days. While disappointed that they had started getting more frequent we were still happy for her to get a couple days of break between a day with a seizure. So she had gone from 1-2 seizures every day to 1 every 3 days. Improvement but not completely controlled.
We currently stand at 1 seizure a week. We went 6 days seizure-free and then had a seizure on Monday at 5:30am and then we went 6 days seizure-free and she had one this morning (Monday at 3:30am). 2 seizures in 2 weeks is waaayy better than 1-2 every day.
The best part is that she just seems happier. She's starting to show more of a personality than ever. Baby steps is the key here and I think we are making them. Hopefully within a year or two I will mean literal baby steps but for now I mean small strides towards a big goal.
Bug's seizures still only happen during sleep. She wakes up, has a blank stare, tenses up with arms extended out, makes a grunting noise as the lungs contract and then draws her arms to her body and stays tense and labored breathing for about a minute before she relaxes fully.
So this Ketogenic Diet definitely seems to be doing some good and helping out a great deal! We will be talking with her pediatric neurologist this week to see if we can start weaning her Trileptal off so that she is just taking the Clobazam while on the diet. If we get better seizure control on the diet we could take the Clobazam off as well!
Rayleigh's development is slowly improving but I doubt we will see any major changes until we get consistent seizure control. Once that happens her brain will really be able to maintain what she learns through therapies and further interest and improve eyesight! Lots of goals for one little girl but we will never give up on her!
Tuesday, May 31, 2011
Down to the Last Options
So in short, Trileptal is no longer working to the potential we expected. Rayleigh is on 2ml Trileptal 3x a day and 1 pill of Clobazam in the morning and 1.5 pill of Clobazam at night. She continues to experience 1-2 seizures a day.
We called Cook Children's Hospital today because I am ready for her to start the Ketogenic Diet. My husband is ready, too but wants to wait a few months to exhaust one more option first. Topomax.
We spoke with Dr. Coleman and let him know that Cook's said the earliest available we could go down to start the diet would be August. He said that we aren't out of options as far as medications go, to try meanwhile. He said that Topomax would be the perfect medicine to start now because if it works we can cancel her Keto appt and if it doesn't then we have to stop that medicine when starting the diet anyway.
With the Keto diet, Rayleigh would still be on medicine throughout the course. If the diet controls her seizures she will be on it for 2-3 years. The Ketogenic Diet is a high-fat, low-carb, moderate protein diet... a stricter Atkins Diet. It teaches the brain to burn fat rather than food which uses the Ketones. Other than that, scientists don't know why it works... just that it does. Rayleigh pretty much has a 1/3 chance of success with the diet.
We start Topomax tomorrow or the day after (depending on the pharmacy). She will start with 1 capsule a night for 5 days and then 1 capsule twice a day for 7 days. We are to call her neurologist back in 2 weeks to report how Topomax is working. If it isn't we'll simply stop the medicine then.
In other news, Rayleigh now sits by herself for a minute or 2 at a time. Enjoys tummy time much more. Holding the bottle all by herself everytime. Stands at the table using her hands for a couple of minutes. AND takes a couple of steps when I hold her up by her arms!!! Yay physical & occupational therapy!!
We called Cook Children's Hospital today because I am ready for her to start the Ketogenic Diet. My husband is ready, too but wants to wait a few months to exhaust one more option first. Topomax.
We spoke with Dr. Coleman and let him know that Cook's said the earliest available we could go down to start the diet would be August. He said that we aren't out of options as far as medications go, to try meanwhile. He said that Topomax would be the perfect medicine to start now because if it works we can cancel her Keto appt and if it doesn't then we have to stop that medicine when starting the diet anyway.
With the Keto diet, Rayleigh would still be on medicine throughout the course. If the diet controls her seizures she will be on it for 2-3 years. The Ketogenic Diet is a high-fat, low-carb, moderate protein diet... a stricter Atkins Diet. It teaches the brain to burn fat rather than food which uses the Ketones. Other than that, scientists don't know why it works... just that it does. Rayleigh pretty much has a 1/3 chance of success with the diet.
We start Topomax tomorrow or the day after (depending on the pharmacy). She will start with 1 capsule a night for 5 days and then 1 capsule twice a day for 7 days. We are to call her neurologist back in 2 weeks to report how Topomax is working. If it isn't we'll simply stop the medicine then.
In other news, Rayleigh now sits by herself for a minute or 2 at a time. Enjoys tummy time much more. Holding the bottle all by herself everytime. Stands at the table using her hands for a couple of minutes. AND takes a couple of steps when I hold her up by her arms!!! Yay physical & occupational therapy!!
Sunday, May 15, 2011
Don't Know What's Going On
Rayleigh started Trileptal on April 14th. She then had 3 seizures over a 2 week period. A major improvement from the 3-5 per week she had been experiencing. Then, the first week of May she had 3 in one week. This past week she had one almost every day :( Yesterday she had 2. One at 6a and a second at 3:30p. Both about 20 minutes after falling asleep. Today she had one at 6:05a and a second one at 4:20p. I got the last one on video so we can show Dr. Coleman (her ped. neurologist) the changes. He may want to see if we can get an EEG to see if there are any changes in the brain where they are starting, etc.
Dr. Coleman is not the on-call doctor this weekend so we will be calling him first thing tomorrow morning.
There is a range of numbers they use when testing blood for medicine levels. When Rayleigh was on 4.5 ml a day her levels tested at the low in of the normal range. Last week when her seizure activity picked up we bumped the dose up to 5ml a day (spread into 3 doses a day). This hasn't improved anything.
We will see if we need to up the dose more or maybe try a different medicine combination with Trileptal. Right now she's on Clobazam & Trileptal. We may have just gone through a "honeymoon stage" and this might not be the medicine for her. Will post tomorrow after we hear from Dr. Coleman.
Dr. Coleman is not the on-call doctor this weekend so we will be calling him first thing tomorrow morning.
There is a range of numbers they use when testing blood for medicine levels. When Rayleigh was on 4.5 ml a day her levels tested at the low in of the normal range. Last week when her seizure activity picked up we bumped the dose up to 5ml a day (spread into 3 doses a day). This hasn't improved anything.
We will see if we need to up the dose more or maybe try a different medicine combination with Trileptal. Right now she's on Clobazam & Trileptal. We may have just gone through a "honeymoon stage" and this might not be the medicine for her. Will post tomorrow after we hear from Dr. Coleman.
Tuesday, April 12, 2011
A 1-year Well Baby Visit
Rayleigh had her well-baby 1-year old checkup with her regular pediatrician last week. First off, let me say that Dr. Albiek is so amazing with Rayleigh!
Our little Bug now weighs about 19.5 lbs! She is in the 25% of height & 10-25% of weight. She has remained on the same growing curve the whole time! Dr. Albiek said that her muscle tone is pretty weak for her age and he believes it could be neurological - something that goes along with her epilepsy maybe? That explains why she still, to this day, hates tummy time... it bothers her because she's not quite strong enough. She's getting better every day, we just have to do it consistently so her muscles develop more! We are so not worried about her leg muscles though, just her upper body. Lots of forced tummy time coming up!
She also was checked for anemia and received one shot. It was a pretty basic visit all things considered.
On to other news, Bug is sadly up to at least 1 seizure a day. There have been 2 days in the last month that she has had 2 seizures in 1 day. The seizure itself has been anywhere from 35 seconds to 1 min 20 seconds. She doesn't take a breath in until about 20 seconds into it, which is the scariest thing we've been dealing with! Bug has also had myoclonic jerks after each seizure that are about 2 seconds apart and last for 1-2 minutes.
We have been keeping her pediatric neurologist posted as they increase in either time, severity or frequency. We were weaning her Phenobarbital by 1ml a week. He now wants us to wean 1ml every 5 days to speed it up slightly. We are down to 4ml Phenobarb right now. She is also still taking her Clobazam twice a day.
We start Trileptol TODAY! Her ped. neurologist wants to wean her slowly so we will begin giving it to her 3 times a day so that it does not make her drowsy. Once she's off of the Phenobarb we will probably reduce to twice a day.
We are so hopeful that this Trileptol is the answer. Mostly because it is our last resort before the Ketogenic Diet. Trileptol will be different from the other medicines because it protects from a different part of the brain - kind of like attacking at a different angle. It's obvious that the brain has formed an immunity to whatever side of the brain Phenobarb, Keppra, Topomax and the other meds we've tried are coming from. Also, Trileptol specializes in Partial Onset seizures which is what hers start as.
Wish Buggie luck on this new medicine! We all need it.
Our little Bug now weighs about 19.5 lbs! She is in the 25% of height & 10-25% of weight. She has remained on the same growing curve the whole time! Dr. Albiek said that her muscle tone is pretty weak for her age and he believes it could be neurological - something that goes along with her epilepsy maybe? That explains why she still, to this day, hates tummy time... it bothers her because she's not quite strong enough. She's getting better every day, we just have to do it consistently so her muscles develop more! We are so not worried about her leg muscles though, just her upper body. Lots of forced tummy time coming up!
She also was checked for anemia and received one shot. It was a pretty basic visit all things considered.
On to other news, Bug is sadly up to at least 1 seizure a day. There have been 2 days in the last month that she has had 2 seizures in 1 day. The seizure itself has been anywhere from 35 seconds to 1 min 20 seconds. She doesn't take a breath in until about 20 seconds into it, which is the scariest thing we've been dealing with! Bug has also had myoclonic jerks after each seizure that are about 2 seconds apart and last for 1-2 minutes.
We have been keeping her pediatric neurologist posted as they increase in either time, severity or frequency. We were weaning her Phenobarbital by 1ml a week. He now wants us to wean 1ml every 5 days to speed it up slightly. We are down to 4ml Phenobarb right now. She is also still taking her Clobazam twice a day.
We start Trileptol TODAY! Her ped. neurologist wants to wean her slowly so we will begin giving it to her 3 times a day so that it does not make her drowsy. Once she's off of the Phenobarb we will probably reduce to twice a day.
We are so hopeful that this Trileptol is the answer. Mostly because it is our last resort before the Ketogenic Diet. Trileptol will be different from the other medicines because it protects from a different part of the brain - kind of like attacking at a different angle. It's obvious that the brain has formed an immunity to whatever side of the brain Phenobarb, Keppra, Topomax and the other meds we've tried are coming from. Also, Trileptol specializes in Partial Onset seizures which is what hers start as.
Wish Buggie luck on this new medicine! We all need it.
Saturday, January 22, 2011
High Hopes
This month has been a major roller coaster for our family. Rayleigh had a seizure on New Years Eve, December 31st, around 7pm that lasted about 40 seconds. It looked like her usual seizure: face reddened, arms locked up and pulled into body, legs locked up and curled in, labored breathing and then her deep release sigh and some myoclonic jerks as she was coming out of the seizure. It was intense and awful.
Then we started to notice her going several days without a single seizure. In December Rayleigh was having 1 seizure every 2-3 days. In the months prior to that she was having 1 seizure every day, maybe even 2 seizures a day but then late November she started the Clobazam anti-convulsant medicine. So starting January 1, 2011 Rayleigh went a full week without a seizure, then it was 8 days, 9 days, 10, 11, 12 days. 12 days with no seizure. Rayleigh was more alert and in a better mood all around. Michael and I were less stressed during naptime and when she would wake up.
Then around January 12th Rayleigh and I got sick. We were both running fevers and feeling awful. On that night Rayleigh got practically no sleep and ended up having a seizure around 2:30am. The seizure was very small and short and Rayleigh didn't seem to be in any pain from it. We were upset that she had a seizure because a small part of Michael and I had thought she was outgrowing them but at the same time we knew it was likely. Dr. Coleman, Rayleigh's pediatric neurologist, had told us before that anytime she is stressed, sick or sleep deprived she is more likely to have a seizure than other times.
Then she went a few more days without a seizure. By January 19th she had only had the 1 seizure. Michael and I were ecstatic. We were sharing the news with everyone, "Rayleigh has only had 1 seizure in 19 days!"
Maybe we jinxed it.
On January 20th we had a regular checkup with Dr. Coleman. We told him the news and asked about weaning Rayleigh off the Phenobarbital to see if the Clobazam was doing all the work. Phenobarbital has a lot of side effects that we think are affecting Rayleigh's development and would love to have her off Phenobarb completely. Dr. Coleman thought the request was more than reasonable and said to wean her off slowly, 1ml less each week. Rayleigh was on 12ml a night at that point so that night we took her down to 11ml.
She takes her medicine each night around 8:30pm.
At 11:30pm that night Rayleigh had been asleep in her bed for 15 minutes. I went in there to adjust the monitor before going to sleep myself and saw that Rayleigh was waking up. I bent over to give her the plug-plug (pacifier) and she went into a seizure. My heart stopped. I grabbed her hands to make sure that she didn't scratch her face and called to Michael.
It was not very intense like her old ones were. She didn't make any noise going into it, her face didn't really redden too much, arms and legs locked up and curled into body, the whole thing only lasted 20-25 seconds though. We brought Rayleigh into bed with us and she fell asleep shortly after. No whimpering or crying at all and didn't appear sore.
Michael and I were shocked. Is this from the dose decrease? Would we really see results that fast? Was she sleep deprived today? Was she stressed? What brought on this seizure?
The next day at 1:30p Rayleigh took a nap so I had her in the same room with me so that I could watch her. With how quiet the one the night before was I knew that I wouldn't have known she had one if I wasn't in her room at the right time so I wasn't going to have her sleep out of my sight. Sadly, she woke up and had a seizure about 5-10 minutes into her nap. It was identical to the one the night before and she went to sleep right after. I called Michael to let him know and he called Dr. Coleman.
Dr. Coleman told us that he can't really verify what's bringing them back on all of a sudden and doubts that the medicine dose decrease would affect Rayleigh so drastically so quickly. He told us to keep an eye on her and let him know if she continues to have them throughout this week and if so we'll increase her dose back to 12ml and see if that controls them again. Rayleigh has also gained a few pounds in the last couple of weeks so maybe she was outgrowing the dose of Phenobarb as we decreased the dose and it was just too much at once.
We will be taking her to get her blood drawn for Phenobarbital level testing this week to see if she is still in the normal range.
Rayleigh had one again this afternoon during naptime.
We went from 1 every 2-3 days to 1 in 19 days and now daily. We are feeling discouraged but are working hard to get her seizures controlled again.
Then we started to notice her going several days without a single seizure. In December Rayleigh was having 1 seizure every 2-3 days. In the months prior to that she was having 1 seizure every day, maybe even 2 seizures a day but then late November she started the Clobazam anti-convulsant medicine. So starting January 1, 2011 Rayleigh went a full week without a seizure, then it was 8 days, 9 days, 10, 11, 12 days. 12 days with no seizure. Rayleigh was more alert and in a better mood all around. Michael and I were less stressed during naptime and when she would wake up.
Then around January 12th Rayleigh and I got sick. We were both running fevers and feeling awful. On that night Rayleigh got practically no sleep and ended up having a seizure around 2:30am. The seizure was very small and short and Rayleigh didn't seem to be in any pain from it. We were upset that she had a seizure because a small part of Michael and I had thought she was outgrowing them but at the same time we knew it was likely. Dr. Coleman, Rayleigh's pediatric neurologist, had told us before that anytime she is stressed, sick or sleep deprived she is more likely to have a seizure than other times.
Then she went a few more days without a seizure. By January 19th she had only had the 1 seizure. Michael and I were ecstatic. We were sharing the news with everyone, "Rayleigh has only had 1 seizure in 19 days!"
Maybe we jinxed it.
On January 20th we had a regular checkup with Dr. Coleman. We told him the news and asked about weaning Rayleigh off the Phenobarbital to see if the Clobazam was doing all the work. Phenobarbital has a lot of side effects that we think are affecting Rayleigh's development and would love to have her off Phenobarb completely. Dr. Coleman thought the request was more than reasonable and said to wean her off slowly, 1ml less each week. Rayleigh was on 12ml a night at that point so that night we took her down to 11ml.
She takes her medicine each night around 8:30pm.
At 11:30pm that night Rayleigh had been asleep in her bed for 15 minutes. I went in there to adjust the monitor before going to sleep myself and saw that Rayleigh was waking up. I bent over to give her the plug-plug (pacifier) and she went into a seizure. My heart stopped. I grabbed her hands to make sure that she didn't scratch her face and called to Michael.
It was not very intense like her old ones were. She didn't make any noise going into it, her face didn't really redden too much, arms and legs locked up and curled into body, the whole thing only lasted 20-25 seconds though. We brought Rayleigh into bed with us and she fell asleep shortly after. No whimpering or crying at all and didn't appear sore.
Michael and I were shocked. Is this from the dose decrease? Would we really see results that fast? Was she sleep deprived today? Was she stressed? What brought on this seizure?
The next day at 1:30p Rayleigh took a nap so I had her in the same room with me so that I could watch her. With how quiet the one the night before was I knew that I wouldn't have known she had one if I wasn't in her room at the right time so I wasn't going to have her sleep out of my sight. Sadly, she woke up and had a seizure about 5-10 minutes into her nap. It was identical to the one the night before and she went to sleep right after. I called Michael to let him know and he called Dr. Coleman.
Dr. Coleman told us that he can't really verify what's bringing them back on all of a sudden and doubts that the medicine dose decrease would affect Rayleigh so drastically so quickly. He told us to keep an eye on her and let him know if she continues to have them throughout this week and if so we'll increase her dose back to 12ml and see if that controls them again. Rayleigh has also gained a few pounds in the last couple of weeks so maybe she was outgrowing the dose of Phenobarb as we decreased the dose and it was just too much at once.
We will be taking her to get her blood drawn for Phenobarbital level testing this week to see if she is still in the normal range.
Rayleigh had one again this afternoon during naptime.
We went from 1 every 2-3 days to 1 in 19 days and now daily. We are feeling discouraged but are working hard to get her seizures controlled again.
Thursday, November 4, 2010
Keppra's Second Chance
The first medicine Rayleigh tried as an anti-convulsant to control her seizures was Keppra. This was when she was 6 weeks old. Keppra took her number of seizures down from 4-6 a day to 2-3 a day but never decreased the number from there, even with dose increases. After a few weeks on Keppra we added Zonegran. Zonegran is a capsule form medicine generally used to treat partial seizures in combination with other medications. Adding Zonegran didn't change anything so we stopped giving it to Rayleigh after 10 days and proceeded to Phenobarbital. While she was taking Phenobarb we weaned her off Keppra so she was taking just Phenobarb. She went seizure free for about 16 days and then had a breakthrough almost 2 months ago.
We have since been trying increased doses of Phenobarb, taking Phenobarb twice a day rather than just at night and then added Keppra twice a day. Adding the Keppra made no difference in her seizures. She continued to have 2 daily. Once at naptime and once at bedtime.
We were told by Dr. Coleman, her pediatric neurologist, to give the Keppra+Phenobarb combination 2 weeks to see results. During these weeks we noticed Rayleigh eating less and not taking her solid food well at all. At first, we attributed this to a cold she had been getting over but once the cold was out of her system and this eating issue continued we realized it was more likely a side effect of the Keppra.
The 2 weeks came and went and she was still having 2 seizures a day. No improvement with the Keppra+Phenobarb combination.
We have since been trying increased doses of Phenobarb, taking Phenobarb twice a day rather than just at night and then added Keppra twice a day. Adding the Keppra made no difference in her seizures. She continued to have 2 daily. Once at naptime and once at bedtime.
We were told by Dr. Coleman, her pediatric neurologist, to give the Keppra+Phenobarb combination 2 weeks to see results. During these weeks we noticed Rayleigh eating less and not taking her solid food well at all. At first, we attributed this to a cold she had been getting over but once the cold was out of her system and this eating issue continued we realized it was more likely a side effect of the Keppra.
The 2 weeks came and went and she was still having 2 seizures a day. No improvement with the Keppra+Phenobarb combination.
Monday, October 11, 2010
And So It Continues
Three weeks ago Rayleigh had a major breakthrough from her Phenobarbital medicine and began having seizures again. They started gradually, 1 seizure every 2 days or so and then got to where we are now at 2 a day.
The seizure will generally happen about 15-20 minutes into sleep. She usually has one for naptime and one at bedtime. Today was weird, she had one when waking up in the morning at 7:30a. She did not have one during naptime today but then had one when she went to bed at 9:30p.
A couple weeks ago on Saturday, Oct 2, we did as Dr. Coleman prescribed and started giving Rayleigh 12ml of Phenobarbital a day. We were to do 6ml morning and night. Each time you change the dose of Phenobarb you have to give it 5-7 days to take effect because it has a long half-life. After 5 days there was absolutely no change. We expected to at least see them slow down if not go away on this dose.
We called Dr. Coleman and spoke with him on the phone for quite a little while. He is ordering a new EEG to see if her brain activity has changed. If so, this will give him more information on the direction we should go in. The EEG is tomorrow.
Also, he had us up her dose to 14ml (7ml twice a day). This seems like a lot to us. We took Rayleigh to get her blood drawn today so Dr. Coleman can check the Phenobarb levels to make sure they are still within the normal 20-40 range.
Dr. Coleman had a couple of points of information that were a bit unsettling:
1.) The harder the seizures are to control, the more likely we are dealing with a longer prognosis of her having seizures.
2.) He has had patients where the best you can do with medicine will still have them having a few seizures a day. It sometimes comes to the point where the parents have to make the decision to either give her a higher dose of medicine than normal range and risk developmental side effects OR keep the dose normal and prevent most of the seizures but not all.
We had to stop by Dr. Coleman's office today to pick up the paper order for her bloodwork to take to the lab. While in there, Dr. Coleman talked to Michael quickly and said that even though she's still having a couple seizures a day and today is day 5 on this new dose he doesn't want to make any changes on her medicine until after the EEG and then he asked us to come to his office right after her EEG because he will immediately have the results and he'd like to go ahead and squeeze us in so we can go over them as quickly as possible.
We know that she's not conscious when she's seizing. For her it's like sleeping and waking up feeling weird, but it is so upsetting to watch this happen to your child and know that there isn't anything more you can do for them. Sometimes we think it scares her and then she's afraid to go back to sleep which is heartbreaking.
We always tell her, "I promise we are working with the doctor to get rid of these!" And we are. We just love her so much and hate that she's going through this. No child deserves this.
Epilepsy brings out a lot of emotions and very little answers.
The seizure will generally happen about 15-20 minutes into sleep. She usually has one for naptime and one at bedtime. Today was weird, she had one when waking up in the morning at 7:30a. She did not have one during naptime today but then had one when she went to bed at 9:30p.
A couple weeks ago on Saturday, Oct 2, we did as Dr. Coleman prescribed and started giving Rayleigh 12ml of Phenobarbital a day. We were to do 6ml morning and night. Each time you change the dose of Phenobarb you have to give it 5-7 days to take effect because it has a long half-life. After 5 days there was absolutely no change. We expected to at least see them slow down if not go away on this dose.
We called Dr. Coleman and spoke with him on the phone for quite a little while. He is ordering a new EEG to see if her brain activity has changed. If so, this will give him more information on the direction we should go in. The EEG is tomorrow.
Also, he had us up her dose to 14ml (7ml twice a day). This seems like a lot to us. We took Rayleigh to get her blood drawn today so Dr. Coleman can check the Phenobarb levels to make sure they are still within the normal 20-40 range.
Dr. Coleman had a couple of points of information that were a bit unsettling:
1.) The harder the seizures are to control, the more likely we are dealing with a longer prognosis of her having seizures.
2.) He has had patients where the best you can do with medicine will still have them having a few seizures a day. It sometimes comes to the point where the parents have to make the decision to either give her a higher dose of medicine than normal range and risk developmental side effects OR keep the dose normal and prevent most of the seizures but not all.
We had to stop by Dr. Coleman's office today to pick up the paper order for her bloodwork to take to the lab. While in there, Dr. Coleman talked to Michael quickly and said that even though she's still having a couple seizures a day and today is day 5 on this new dose he doesn't want to make any changes on her medicine until after the EEG and then he asked us to come to his office right after her EEG because he will immediately have the results and he'd like to go ahead and squeeze us in so we can go over them as quickly as possible.
We know that she's not conscious when she's seizing. For her it's like sleeping and waking up feeling weird, but it is so upsetting to watch this happen to your child and know that there isn't anything more you can do for them. Sometimes we think it scares her and then she's afraid to go back to sleep which is heartbreaking.
We always tell her, "I promise we are working with the doctor to get rid of these!" And we are. We just love her so much and hate that she's going through this. No child deserves this.
Epilepsy brings out a lot of emotions and very little answers.
Subscribe to:
Posts (Atom)